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Friday, November 21, 2008
They're here!



Our twin girls were born August 5th, 2008.  Lucy and Leigh are perfect in every way.  They were about 6.5 lbs each when born, and there were no complications in the delivery.

Just wanted to give an update!  Smile

 
 

Posted at 05:28 pm by lisachu
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Thursday, June 05, 2008
Successful pregnancy!

Here's the latest: a successful pregnancy at last! At least, so far, so good. We feel incredibly blessed, and rewarded for all our hard work and research.

I'm now almost 30 weeks pregnant with twins girls, who are in the 50th weight percentile for their age. They're very active and I've had no real complications of pregnancy, except for the usual stuff which can be expected with multiples - gestational diabetes and some minor anemia.

After three years of searching for answers, I determined there are many reasons why people can miscarry. In our case, there were a combination of factors working against us. Although I don't know what specifically contributed to this pregnancy, here is the rundown of events:

I had a blocked fallopian tube, which was corrected with surgery.

I had an underactive thyroid, which was corrected with levothroid (95%) + cytomel (5%). My TSH now hovers around 0.2, though when I conceived, it was around 1.0.

I had an overactive immune system, which was corrected with acupuncture & diet (maybe) and steroids (probably). I also did a double-dose of LIT (lymphocyte immune therapy) which was supposed to help suppress my overactive lymphocytes. The same doctor who recommended LIT told me to get IVIg also, but I didn't do this.

My natural killer cell activity was too high. My doctor put me on steroids, which may have helped with this. And blood thinners + baby aspirin, which seems to help with it too. Later I was taken off the blood thinners, though i still take the baby aspirin.

I had a gene issue - compound homozygous MTHFR - which is associated with poor folate absorption. I took extra folate for this, and B-vitamins which help with folate absorption.

A karyotype determined my 3rd baby had trisomy 8 - apparently I was making bad eggs. So I had PGD (preimplantation genetic diagnosis) along with IVF (actually ICSI) to screen out the genetically "bad" embryos. I think this was very helpful - of the 8 embryos that were tested, only 4 passed. The other 4 had multiple chromosomal abnormalities across the board and had no chance for survival.  We transferred 3 embryos, and all 3 implanted. And survived, which is the amazing thing. (We lost our boy baby at 16 weeks due to a fatal physical abnormality.)

Whatever the reason or reasons why, my IVF was successful. I personally think it was the PGD that did it for me, but everything else may have helped too.

I think the change of diet (limiting sugars & carbs, eating whole foods & organic when possible) helped me to make healthier eggs. For my age, the IVF doctor was surprised that 50% of my embryos tested normal, as the average is 33%. I may have been lower than 33% at one point, as suggested by four straight losses. Maybe the LIT helped too. I'll never know, since I never went for restesting after (an extra $6000 we put toward IVF/PGD instead!)

But there are many reasons for recurrent loss, some of which are not understood. I just listed some reasons above in case it helps others. Please feel free to email me anytime if you have any questions. I may not have answers, but I've been through a lot and am a good listener!

I wish you all the best of luck on your search for answers!


Posted at 09:20 am by lisachu
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Monday, January 07, 2008
Recurrent miscarriage video

A good general overview of the causes (& fixes!) for recurrent miscarriage:

http://www.youtube.com/watch?v=gdpU-puKDJE
 

Posted at 07:11 am by lisachu
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Thursday, November 29, 2007
Selenium supplementation and thyroid disease

Someone recently brought up the subject of selenium supplements to fight thyroid antibodies. I know I've mentioned it in the past, but until now I hadn't heard of a success story. Well, now I have! :hooray: So I thought it was worth looking into again.

There are selenium supplements and then there are selenium supplements. There needs to be a fine line because too much is toxic(1), and the wrong kind might work against you.

Here is some helpful info I gathered from a Dr. Mark Lupo, on this forum:

http://www.medhelp.org/forums/Thyroid/messages/809.html

"Selenium at 200mcg per day is being looked at to improve immune system thyroid disease such as Hashi and Graves. There are limited data regarding long term use. Use the amino acid form (selenomethionine or selenocysteine) and not the salt form. Over 1000mcg/day may be toxic.... Take a multivitamin as well."


I assume the multivitamin is to make sure you have the cofactors necessary to absorb the selenium.

Please remember never to overdo the following vitamins: A, D, E, & K. Other types of vitamins (such as B-vitamins) will simply pass out of your system if there's excess, but ADE&K are retained by the fat and organs in your body and accumulate there, so it's much harder for your body to regulate it. OD'ing on A especially is not fun, happened to a friend of mine who had a bad batch of vitamins!

Also remember that it's always better to eat supplements in the form of food and not pills. There are all sorts of goodies in food, namely phytonutrients, that we haven't studied or discovered yet and likely do us thousands of times more good than a pill alone. Eat eat eat! Whole grains, fruits and veggies beat pills any day.

Off soapbox.


1. Med Hypotheses 1993 Aug;41(2):150-9. Selenium--its biological perspectives. Bedwal RS, Nair N, Sharma MP, Mathur RS. Department of Zoology, University of Rajasthan, Jaipur, India.

Posted at 06:44 pm by lisachu
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Sunday, November 11, 2007
New diagnostic range


Posted at 04:45 pm by lisachu
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Saturday, October 13, 2007
Cure for CU?

I'm so excited... I may have found the cure for my CU! 

Chronic urticaria, or chronic hives, is a condition that can result in the presence of thyroid antibodies. Basically, it's a rash that never goes away - imagine the worst possible case of poison oak, only permanently.  Not minor itchiness, full-on red, puffy, burning, raised white bumps that are absolutely everywhere, except the face area (for the most part). Some only experience it for a few weeks, while others will have it for the rest of their lives.  I've had it since 2004.

Luckily for me, it was bearable as long as I took a Claritin or two every day.  But, taking more than one Claritin is not recommended for pregnancy.  Also, taking Claritin can impede implantation.  I didn't know what to do, because if I didn't take the Claritin, I would break out in hives so badly I'd want to tell the doctor to put me in an induced coma.  It's a feeling so unbearable that I've heard some CU sufferers say they would rather kill themselves than continue to go through it.  As I said, I'm lucky, because I respond well to the Claritin, while others keep themselves permanently zonked on powerful antihistimines (which you cannot take if pregnant), and sometimes even that isn't enough.

This year I went to a reproductive immunologist, Dr. Stricker at the Alan E. Beer Center in Los Gatos, who recommended that my husband and I go to an IVF clinic to try and conceive our next pregnancy, due to my anti-ovarian antibodies which are associated with poor egg quality, and with IVF we would have access to a procedure called PGD which would screen the embryos for genetic abnormalities before implantation.  At the IVF clinic, which is the Zouves Fertility Center in Daly City, I was given a packet which had an insert about recommending all patients consider acupuncture treatments prior to starting IVF.  Now I have always been an acupuncture skeptic, because my Chinese father told me this is quack medicine, and I figured he would know.  But, show me a woman trying to have a baby after losses, and I'll show you a woman so desperate she'll try anything once.

I called Dr. Stricker's office to see if they could recommend someone who specialized in immune issues.  They did - Claudia Wolfe, in San Jose.

I've had 3 sessions with Claudia so far.  After the 1st session, I didn't really feel any different.  After the second, I felt calmer, yet more refreshed, and overall healthier.  I was put on a new diet - avoid processed foods, sugar, meats with antibiotics or hormones.  I was told to eat every 2 hours, even if it was just a 1/2 apple, to keep my blood sugar even.  I eat more protein (in the form of meat and nuts, not soy), fewer carbs, lots of fruits and veggies, no juice, whole grain instead of white flour products (i.e., the kind you find in the refrigerated bread section at Whole Foods).  I eat organic whenever possible to limit the amount of toxins in my system.  She stressed with me to reduce the cortisol my body produces, thinking that is the cause of most of my problems.  Avoiding sugary food and keeping my blood sugar even is supposed to help this tremendously.

I was given a new set of whole-food vitamin supplements to take, and I stopped taking my FolGuard (taken for compound homozygous MTHFR) because I learned it didn't contain the correct cofactors necessary to absorb the large amount of folate, and was stripping my system of them instead.  To make up for the FolGuard, I take extra folate supplements along with enough cofactors to support it.  I also take a supplement for my thyroid, a "prenatal", fish oil, and vitamin D.

So I don't know if it's the diet, the acupuncture, the supplements or a combination of any or all of the above, but I noticed one very important thing after only two acupuncture sessions - I don't need Claritin nearly as much anymore.  And in fact, I haven't taken one now for a week.  An entire WEEK! 

I don't think it's a placebo effect, because Claudia never mentioned she could cure my CU.  She did say she could help lessen my need for thyroid meds and the immune response that could cause another miscarriage.  Ok I can't help but be skeptical about this, but I'm ecstatically happy about the CU.

It's a miracle, pure and simple.  I don't know if this is temporary or permament, but whatever it is I'll take it!!!

Posted at 04:02 pm by lisachu
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Thursday, April 19, 2007
New web site links

Another little-studied subject relating to Hashimoto's and infertility is reproductive immunology.  Here is a site I've discovered dealing entirely with RI, written by pioneers in the field:

Repro-Med.net
http://repro-med.net/online.php


And a very interesting article about recurrent miscarriage and how perinatal pathology may help:

Parents.com
http://www.parents.com/parents/story.jhtml?storyid=/templatedata/parents/story/data/1225.xml


Although most of the web sites below do not deal with immunity issues, I've found them to be very helpful source of information on infertility, treatment and support:

RESOLVE: The National Infertility Association (non-profit)
http://www.resolve.org

RESOLVE article: Tips for coping with the holidays
http://www.resolve.org/site/PageServer?pagename=cop_mis_cwh_gh

Advanced Fertility Center of Chicago
http://www.advancedfertility.com/evaluate.htm

American Society of Reproduction Medicine
http://www.asrm.org/Patients/mainpati.html

InfertilityCentral.com
http://www.infertilitycentral.com

(WARNING: Do NOT use the fertility calculator on InfertilityCentral.com unless you are prepared for a gut-wrenching shock. Talk to your doctor instead.)


Posted at 02:42 pm by lisachu
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Sunday, December 17, 2006
The new new overview section

Welcome to the new, NEW, overview section (the other one was getting too long). But I'll leave it for reference.

I won't update one section any longer, because it's too hard to go back and post new studies that way. What I will do is update this blog like a regular blog. If you want definitions and explanations, you'll have to scroll downward. Sorry, I know that's backwards, but that's the way blogs are.

I will do a quick recap of what I think is the most pertinent info to date on Hashimoto's and infertility. (list)

As for today's entry:

I've now had 4 miscarriages. I sent the 3rd out for a karyotype and tissue study. The karyotype showed a trisomy-18 abnormality (chromosomal abnormality). After scratching my head over the pathologist-ese on the tissue study, I did some Googling and found a good instructional pathology web site, pathguy.com.

On it I found reference to a study which apparently concludes that a type IV immune injury to trophoblast is a cause of RPL (JAMA 273: 1933, 1995). That's Path Guy's take, I couldn't even understand the abstract. That was only part of the report - I still haven't figured out what "decidual lymphoid aggregates" or "spiral medial basophilia" means. It sounds like a chromosomal abnormality was part of the problem, but that there was evidence of non-genetic, immune-related etiology as well.

To help me figure out the study in JAMA, I Googled some more and found this:
Th1 and Th2 responses: what are they? (BMJ 2000;321:424)

Is there a "cure" for the imbalance of TH1- and TH2-type cytokines? I'm guessing no, because if there is one, wouldn't we all have heard about it by now?

In fact, nothing I've done (besides taking antihistamines) has made even the slightest dent in my CU. Not thyroid meds, not different combinations of thyroid meds, not environment, not fasting, not chiropractic, not acupuncture, not FolGuard, not Pacific Northwest fish oil capsules, not flaxseed or primrose oil, not selenium, not weird Chinese herbs that taste like dirt, not the absence or presence of heat or cold, not perfume-dye-free laundry detergent, not organically grown cotton clothing and bedding... nothing. I've air-dried naked after a shower in a room with a Sharper Image air filter going full blast - nothing.

Since 2005, the one time my chronic urticaria disappeared for 24 beautiful hours, sans Claritin, was the one time I've gotten sick since being diagnosed with Hashimoto's. I had a UTI, which unfortunately is no walk in the park either. I have to wonder, was there a connection? Not that a UTI would be any kind of fun replacement for CU, but maybe the bacterial infection interrupted those busy TH1 helper T-cells somehow. Maybe it distracted my thyroid in general for awhile.

But more importantly than the link to CU (at least to me) is the relationship to recurrent pregnancy loss.  No cure exists for TPO/ATAb.  But is there a way to protect a pregnancy?  Other than taking steroids, heparin and folic acid? 

Then I have to wonder, are those TH1 helper T-cells really extra busy? Or is it the TH2s who simply aren't pulling their weight?

So much I don't understand, obviously. Thanks for bearing with me during my learning curve.

Posted at 04:23 pm by lisachu
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Thursday, May 04, 2006
Overview section (updated)

Welcome to my Hashimoto's blog.

This blog was created to provide information about Hashimoto's Disease and its relation to fertility.  Here you will find information about Hashimoto's, gathered from peer-reviewed medical journal articles, doctors, and other trusted sources.  I'll also go over my personal treatment and experiences.

Since some of the info posted here conflicts with later entries, I'm making this comprehensive, continually updated overview of the most current information for easier reference.  Of course, if you want more info, then just keep reading!   


Definitions

T3 = an active form of the thyroid hormone triiodothyronine
T4 = a stored (inactive) form of the thyroid hormone thyroxine
TSH = thyroid stimulating hormone. It stimulates the thyroid when the thyroid isn't making enough hormones.  The measure of TSH levels is the major diagnostic test for thyroid disease; a high level indicates impaired thyroid function.  
ATA = antithyroid antibodies
TgAb = thyroglobulin antibodies
TPO = thyroperoxidase antibodies 
APA = antiphospholipid antibodies
ACA = anticardiolipin antibodies

IUI = intrauterine insemination
IVF = invitro fertilization
hCG = human chorionic gonadotropin
HSG = hysterosalpingogram


About Me

My name is Lisa.  I have a Bachelor of Science in Nursing (BSN and RN).  I recently had my third miscarriage.  In 11/05, after going to an allergist for what turned out to be chronic urticaria (hives), I was diagnosed with Hashimoto's disease.  Tests in 3/07 show a low positive for anticardiolipins.

I'm a nurse, certainly not an expert on thyroid issues, perinatology, reproductive endocrinology or autoimmune issues.  I'm just a woman with Hashimoto's trying to have a baby, and will share what I learn here.


About my treatment

In 11/05, I was put on 50 mcg levothroid for Hashimotos.  (Allergy testing found thyroid autoantibodies, both ATA and TPO).  My TSH was then 5.0. Because we had been trying for a year to conceive, I was referred to a fertility clinic.  After 6 weeks of the levothyroxine I conceived, but we lost the pregnancy 8 weeks later.  2 ultrasounds a week apart (given because I was spotting/cramping) showed a heartbeat, one the day before the miscarriage.  So we knew this was likely not a chromosomal abnormality.  The fetus also looked 2 weeks smaller than it should, which can indicate several things, including a clotting disorder (clotting diminishes placental blood flow to the fetus).

After the miscarriage I sought a 2nd opinion from a reproductive endocrinologist outside my HMO.  She put me on 88mcg Synthroid (synthetic T4) and 10mcg Cytomel (synthetic T3).  I am very happy with this combination as I feel much more energetic than on the levothroid alone, and my serum thyroid levels are stable. 

After several months of taking nothing but thyroid meds and no pregnancy, I was given an HSG (hysterosalpingogram).  It showed a fallopian tube blockage, which was cleared with a tubal cannulation the next week.  No wonder it was taking so long to conceive!

Not wanting to delay any more the fertility clinic finally decided to give us an IUI (intrauterine insemination).  My husband's sperm was tested and found to be fairly good overall, with slightly high abnormally shaped sperm and slightly low motility.  I was given 50 mg clomiphene (Clomid) on CD 3-7 to produce lots of follicles, and monthly hCG injections to trigger ovulation.

We conceived on the first IUI in 12/06 but lost the pg 6 weeks later.  An u/s the day before the miscarriage (performed because of moderate bleeding and cramping) again showed a smaller than average fetus but no heartbeat.

Because I was 38 and had 2 miscarriages (doctors usually wait until you've had 3 unless you're over 35), my ob/gyn at Kaiser ran a battery of tests, including genetic testing on my husband and myself.  All tests were normal except for a low positive for anticardiolipin antibodies (ACA), a clotting factor (IgG=13 on a "normal" scale of 1-10).  Clotting factors can cause miscarriage because it can cause clots in vessels leading to the reproductive organs and to the embryo.  For the low ACA, my Kaiser RE prescribes baby aspirin (81 mg) and progesterone, since my progesterone levels are borderline. 

My doctor says that thyroid antibodies and anticardiolipins are associated with recurrent miscarriage, and my thyroid disease affects my hormone output which makes conception difficult as well.  I currently take Synthroid, Cytomel, baby aspirin, progesterone, Clomid, monthly hCG injections, and Claritin for chronic hives (CU).

Our third loss
We conceived again on the 2nd IUI (3/07), and lost the pregnancy at 7.5 weeks.

Within the past 2 weeks, I've spoken with 3 OBs about their recommended tx for an ACA level of 13 and history of 3 m/c and Hashimotos.

My OB of course said that with such a borderline level (just above normal), the aspirin therapy would probably be enough.  I didn't like that "probably".

Another said she'd prescribe low-molecular weight, low-dose anticoagulant such as Lovenox throughout the pregnancy.  Both heparin and Lovenox are anticoagulants, though Lovenox is safer, especially during pregnancy.  The reason she'd leave the choice up to the patient is that heparin is cheap, but carries the risk of side effects like bleeding out if I should be in an accident.  Lovenox doesn't carry that risk so much but it's much more expensive.

The 3rd OB said that low-dose heparin certainly couldn't hurt, given my age and history.

Recently, I met a woman who recommends a reproductive immunologist in Los Gatos named Dr. Stricker.  There are only about 10 RIs in the entire country, so I feel very lucky this one is only 10 minutes away!  I just went in yesterday to donate blood for further immunological testing (beyond what the fertility clinic has already done - for a complete list, click on my pregnancy blog link in the left-hand column). 

Tomorrow, I'll pick up my prescription for heparin, which they prescribed seconds after hearing my medical history. After the new test results come back, it's possible I'll be put on a steroid such as prednisone, and/or other tx such as LIT or IVIg.

Although I haven't gotten an appt with the RI yet, I've talked to the nurses in his office, who are very knowledgeable.  I asked about the treatment for ATA and TPO antibodies, and she said there is none.  Those antibodies attack the thyroid diminishing its function, so the treatment would be supplemental thyroid hormone.  IVIg is given when there are sufficiently high levels of certain other types of antibodies, including anti phospholipid antibodies, anticardiolipin antibodies, NK cells etc.  There are other conditions I don't fully understand, but the doctor's web site describes all:

http://repro-med.net/online.php

If you read nothing else on this site, go to the link above - it's well worth it!!

I had a D&C after my doctor confirmed the baby's heart had stopped beating between the 7 and 8 week ultrasounds.  I had the paraffin block sent for tissue study to both Dr. Stricker and to a Dr. Carolyn Salafia, a perinatal pathologist in New York.  A chromosomal analysis done at Kaiser showed the latest pregnancy had a chromosomal abnormality.  It actually makes me feel better knowing that there was nothing I could have done differently (like go on anticoagulants or steroids or IVIg before this pregnancy began), but I hope it doesn't confound the tissue study, and that Dr. Salafia and Dr. Stricker will be able to learn something from the tissue.

What is hypothyroidism?

Hypothyroidism is diminished thyroid function.  Subclinical hypothyroidism is defined by normal serum free T4 levels and serum TSH levels above the upper limit of the reference range (Cooper, 2001).  In other words, you may feel ok, but you test positive for being hypo.

If left untreated, hypothyroidism is linked with trouble with conception, miscarriage, and severely impaired cognitive ability in the fetus (low IQ) (Alexander et al, 2004), and retarded growth.


What is Hashimoto's disease?

Hashimoto's disease or syndrome is when your thyroid makes autoantibodies which attack itself and diminish its function.  This is a form of autoimmune disease.
 

What are the symptoms of hypothyroidism (and Hashimoto's disease)?

The signs and symptoms of early thyroid disease can be vague and diffuse, and we often attribute them to depression, stress or plain old age.  According to figures from the Thyroid Foundation of America, Inc., almost 2/3 of people in the U.S. who suffer from thyroid dysfunction don't even know it.  Symptoms of hypothyroidism include:

  • Dry, coarse hair
  • Dry skin
  • Cold intolerance (fingers turn blue or go numb easily)
  • Weight gain (despite consistent diet)
  • Puffy face and eyes
  • Loss of lateral one-third of eyebrow hair
  • Goiter (enlarged thyroid gland)
  • Slow heartbeat
  • Heavy menstrual periods
  • Constipation
  • Brittle nails
  • Depressed mood
  • Tiredness (one woman describes it as feeling like a "leaden zombie")
  • Loss of interest and/or pleasure
  • "Mind-in-a-fog" (chronic inability to focus)

The most common symptoms are sensitivity to cold/cold hands, dry skin/hair, tiredness, weight gain and constipation. 

Personal note:  While I always had dry skin and fingers that went numb even at 70 degrees, I had never suspected or even heard of Hashimoto's until I went to the doctor for an allergy test, and my blood test came up positive for thyroid autoantibodies.  But the worst symptom of all was a sudden onset of what I called "extreme forgetfulness" -- so severe, I worried about early onset of Alzheimer's.  I couldn't remember what I was talking about halfway through most sentences, and I'd forget what I was doing walking from room to room.  I chalked it up to stress; I was planning my wedding.  In fact, stress can be a factor in the onset of thyroid disease, particularly if you are predisposed (hypothyroidism runs in my family).  But my forgetfulness continued well after my wedding, and disappeared with thyroid treatment.


What are thyroid autoantibodies and what does it mean if I have them?

There are two types of thyroid autoantibodies, anti-thyroid antibodies (ATA) or thyroglobulin antibodies (TgAb) and thyroperoxidase (TPO) antibodies.  You can have one or both types.

Greater than 82% of Hashimoto's patients and 60-70% of Grave's patients have elevated TgAb.  TgAb can indicate a predisposition for thyroid disease.

TPOAb are found in nearly all Hashimoto's and in more than 70% of Grave's patients.  TPOAb is associated with the destruction of thyroid tissue in Hashimoto's patients.  Together these antibody tests increase the diagnostic sensitivity of autoimmune thyroid disease as well as other diseases.

Pregnant mothers with detectable thyroid autoantibodies and normal thyroid function (indicated by normal serum TSH) are at an increased risk for miscarriage and for postpartum thyroid disease including thyroiditis, hyperthyroidism and also hypothyroidism. 

What does this mean?  Levothyroxine (T4) treatment will mean your TSH will read as normal & your thyroid will be functioning properly, but you will still have the antibodies, and their presence is thought to result in an increased risk of miscarriage (between 1 and 5 times greater). 


Is autoimmune disease linked with miscarriage? 

There are many different types of autoimmune disease.  There is a significant link between ACA, APA and other clotting factors, and recurrent miscarriage.  If you test positive for clotting factors, this is dangerous to the fetus because clots can prevent blood supply to the reproductive organs and placenta.  To the best of my knowledge, the best treatment for having a low positive ACA level is aspirin and low-dose heparin, or if you can afford it, Lovenox, which is safer than heparin.  According to one OB, "Aspirin is probably enough, but if it was my niece I'd put her on low-dose Lovenox."  Heparin/Lovenox are given by injection 2ce daily.  Since it's so often, you administer it yourself subcutaneously. 

If you have antithyroid antibodies (ATA and TPO), you should consider there is a risk of an immune response against a fetus should you become pregnant.  According to my RE, the usual treatment for this is IVIg (intravenous immunoglobulins), given by injection.

As usual, there is controversy among experts over treatments.  Treatment for autoimmune thyroid disease is not firmly established, however many doctors believe IVIg (intravenous immunoglobulins) are effective.  Treatment for APA/RAFS (antiphospholipid antibodies/reproductive autoimmune failure syndrome) can include aspirin, corticosteroids, heparin, prednisone and IVIg.

My personal experience has been that my HMO is too cheap and too archaic to prescribe anything but aspirin for my ACA of 13.  But the private practice doctors I spoke with recommended a stronger anticoagulant, in a low dose to be safe, and this is the recommendation I feel is the most valid.

Here is a link to an excellent overview on different types of antibodies, their effect on pregnancy, and different treatments available:
http://www.rialab.com/miscarriages_prevented.php

Here is a simply excellent link from MedScape that outlines several studies on one page:
http://www.medscape.com/viewarticle/403587

Here is a link to one study which didn't find a link between autoimmunity, infertility and miscarriage (yay!)
http://www.advancedfertility.com/revantib.htm

Here's a link to an interesting trial to see if intravenous immunoglobulin (IVIg) helps women who have recurrent miscarriage possibly related to their immune system reacting against the pregnancy.  In this study, subjects will be given the IVIg during the first part of her cycle so pregnancy occurs, then continued through 5 months.
http://www.centerwatch.com/patient/studies/stu94664.html

Below is a link to a study done at the Pacific Fertility Center in San Francisco, CA.  It was published in Am J Reprod Immunol. 1998 Jun;39(6):391-4.  In this study, they found that a combination therapy of heparin and aspirin combined with IVIg did have a positive effect on women trying to conceive through IVF, if those women were APA+ (antiphospholipid antibodies).
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9645271&dopt=Abstract

And below is a link defining antiphospholipid antibodies:
http://www.lupus.org/education/brochures/antiphos02.html

After reading all that, you may be as frustrated as I was by the lack of information on what you can actually DO about having an autoimmune disease and multiple miscarriages.  As mentioned previously, for thyroid disease, many doctors prescribe IVIg.  I have found that IVIg is not covered by my insurance, and my doctor has tried hard to dissuade me.  He has said IVIg is a radical treatment akin to how they treat AIDS patients, and the treatment has many scary side-effects.  To the degree this is true I have yet to determine, but I can't think of a scarier side-effect than miscarriage, so whatever the risk is I'm willing to take it. 

But you make up your own mind.  Reading this success story from a woman on about.thyroid.com helped me make up mine:  http://thyroid.about.com/library/weekly/blnewmom.htm

And in case the link ever goes away, I am going to copy and paste a portion of it here:

"...(In) October 1999 I had a pregnancy loss panel of bloodwork done. The day before I got the blood results, I had my first EVER positive home pregnancy test, to our dismay. From the bloodwork results, much to our horror, we learned that this pregnancy was already at risk. I tested high for Reproductive Immunophenotype and antiphospholipid antibodies and antithyroid antibodies. Basically, I had an immune disorder that would treat the pregnancy as a foreign body and kill it off.

The next day I had the first of two Intravenous Immunoglobulin treatments, known as IVIg. I was hooked to an IV and "pumped up" as I like to call it with treated antibodies, I believe from white blood cells. It saved my pregnancy, and I now have a healthy beautiful 9 month old girl. My sister got pregnant shortly after I did, after nine years of miscarrying, had the IVIg treatments as well. My daughter has a cousin three months younger than her!

Unfortunately, IVIg is not yet FDA approved, so it is an out of pocket expense, and is quite costly. My daughter was well worth it. I truly believe I have my doctor and IVIg to thank for my beautiful daughter. "

Did you read that?  Nine years of miscarrying.... I'm almost 38.  I don't care what it costs, we are going to try IVIg if my new doctor tells me I should. 

Here is a link to a site describing the process and cost of IVIg in detail:
http://www.sharedjourney.com/articles/ivig.html

If you have had a miscarriage, I'm sure you are painfully aware that miscarriage can happen for many different reasons which are not related to the thyroid.  Miscarriage can happen because there is some kind of problem with the fetus, and for that reason nature decides it's not a healthy pregnancy and ends it.  For instance, there may have been chromosomal defects that were inconsistent with life.  If the baby had been born, it would have had terrible defects had it lived at all.  When miscarriage happens, it is because nature knows best. 

That said, if you are pregnant, a dysfunctional thyroid can have serious effects on the fetus and on you, so it is of utmost importance to stabilize your thyroid condition before pregnancy begins.  If your thyroid is sufficiently dysfunctional, you likely won't even be able to become pregnant.


What should my TSH be?

Diagnostic rangeTSH of 0.3 - 3.04 mIU/L, as defined in 2002 by the AACE (American Association of Clinical Endocrinologists).  This is also the current recommendation by the U.S. National Library of Medicine, the U.S. National Institutes of Health, the American Thyroid Association and most doctors. 

These values may alter slightly (maybe 0.25-4.0 or 0.3-3.5) depending on how the lab's equipment is calibrated (Chu, 2006). 

If you have never been diagnosed with thyroid disease, you should be within this range.  If you are outside this range, you should begin treatment for thyroid disease.

Treatment range: TSH of 0.5 - 2.0 mIU/L (AACE, 2002).  A "treatment" range is the range your doctors are aiming for once you are diagnosed with thyroid disease.  Here is a quote from the AACE web site: "A serum TSH result between 0.5 and 2.0 mIU/L is generally considered the therapeutic target for a standard LT4 replacement dose for primary hypothyroidism."

Many people feel simply awful even with a TSH between 3 and 5, which is within the old normal range of 0.5 - 5.0.  Even a moderately high TSH can indicate enough loss of thyroid function to make you feel really lousy -- one woman said she felt like a "leaden zombie" with a TSH of 4.0.  But the majority of hypos "feel" best -- most mentally alert, most energy -- between 0.3 and 1.0 (Grellet, 2006).


What should my TSH be if I'm pregnant?

Again, the treatment TSH level recommended by the AACE is 0.5 to 2.0 for titrating (adjusting thyroid medication levels to the correct balance).  

But if you are pregnant, your TSH should be even lower -- ideally between 0.3 and 1.0 (Grellet, 2004).  Anything higher raises the risk of cognitive impairment of the fetus (low IQ).   

Most importantly, GET A FOLLOW-UP SERUM TSH IMMEDIATELY AFTER YOUR CONFIRMED PREGNANCY if you are undergoing treatment for thyroid disease, even if your doctor forgets to tell you!  I cannot stress this enough; chances are you will need an immediate 30-50% increase in your meds as soon as you become pregnant.  Every doctor I have spoken with agrees on this point.


Why don't all doctors agree on the revised diagnostic ranges?

Most doctors, but not all, have accepted the revised diagnostic standards.  The AACE, the ATA, the U.S. government, and most doctors go by the new standard.

The previously established reference range was 0.5 - 5.0 mIU/L, and it's important to know some laboratories -- such as the nation's largest HMO, Kaiser Permanente -- still use this range.  Certain doctors and/or HMO laboratories don't always keep up with or accept new research and recommendations, as I found out the hard way.  If your TSH is above 3.04 and you are experiencing symptoms of hypothyroidism, particularly if you are pregnant or trying, and your doctor refuses to treat you, consider finding a new doctor.  You could avoid a miscarriage by having a simple blood test done as soon as you find out you're pregnant and adjusting your dosage accordingly.  Learn from my mistake and have the blood test done -- it's not expensive, it's not painful nor harmful in any way.  And it's important.  Have I stressed this enough?  :-)

The AACE in 2001 (before they revised their own recommendation to support the new TSH range one year later) suggested the slow turnaround was due to too few studies to warrant a change in their recommendation.  Likely this is true for hospitals as well, although by now (2006) more laboratories have changed their TSH guidelines than not with the emergence of several new studies that support the change.


What else should I know if I'm pregnant?

If you are pregnant, it is appropriate for your doctor to immediately test you for thyroid disease (Surks et al, 2004), whether or not you were previously being treated for thyroid disease.  It is also appropriate to carefully monitor your TSH for changes during pregnancy.  Pregnancy can be a strain on the thyroid; if you are hypothyroid, you will likely need to increase your meds as soon as you become pregnant. 

Women with a history of thyroid disease, thyroid autoimmunity, or a family history of thyroid disease should certainly have their thyroid health evaluated before planning pregnancy and again shortly after becoming pregnant.

Every doctor I have spoken with agrees on one thing: you should have your thyroid levels tested immediately upon your positive pregnancy test, and again at least once every trimester.  It has been supported by many studies, most importantly by a study in the New England Journal of Medicine (Alexander et al, 2004) which found that 85% of the hypothyroid women in their study needed a 30-50% increase in Levothyroxine dosage during their FIRST TRIMESTER.  This is much, much earlier than originally thought.  The study concludes that women should get tested immediately upon becoming pregnant and should increase thyroid medication dosage by 30-50% upon becoming pregnant, since it can take 5 weeks to titrate, and thyroid hormone levels were shown to diminish almost immediately in pregnancy. 

In my case, my doctor forgot to tell me to retest and therefore did not tell me to increase my meds.  My TSH shot from 0.2 to 7.7 in 6 weeks.  We had an ultrasound at 8 weeks when the cramping and bleeding began, and the doctor saw a heartbeat.  He told me my chance of miscarriage was very low, because after a heartbeat is seen or heard, the chance of miscarriage drops to 5% from 7-9 weeks (reference).  But I lost the baby the next day, at 8 weeks.  I firmly believe, and my *new* RE agrees, it was the lack of follow up bloodwork and increase in meds that was to blame.

Why is your thyroid health during pregnancy such an issue?  Because if you are pregnant, your TSH should level off between 0.3 and 1.0, or the chance for miscarriage increases, and your baby runs a higher risk of cognitive impairment (low IQ).  Surprise  


I think I am hypothyroid.  What kind of treatment should I expect?

Oh, so much controversy.  I will say this about the war over thyoid meds: there are enough conflicting studies to support almost any stand you decide to take.  I'll try to present both sides here. 

For hypothyroidism, you will likely receive supplemental synthetic levothyroxine (T4), a daily pill you will take for the rest of your life. 

Some doctors prescribe a combination of synthetic T4 and synthetic T3; some prescribe whole, dessicated animal (usually pig or sheep) thyroid instead of synthetics, or varying combinations of the above.

There are many brand names for T4 and T3, as well as generics.  There is quite a lot of disagreement over which therapy works best, but since the 1950s, synthetic T4 is the most widely used therapy.  It should be noted that levothyroxine sodium has existed prior to 1938 and therefore is not subject to FDA criteria for bioequivalence, though tablet potency is regulated by US pharmacopia standardization (please refer to this study published in JAMA which describes in detail the differences between generic and brand levothyroxine efficacy). 

Here are the results of my very small "medication poll".  I asked 3 endocrinologists the following:

Levothroid (the generic "brand" of synthetic T4) varies in efficacy and should be avoided: 2 out of 3 agree

Synthroid (a brand of synthetic T4) does not vary in efficacy and can be trusted: 3 out of 3 agree

Thyrolar (a combo drug) contains the wrong ratio of T3 to T4 and should be avoided: 2 out of 3 agree

Armour (a combo drug made from dessicated animal thyroid) varies in efficacy, varies in absorption, contains the wrong ratio of T3 to T4 and should be avoided: 2 out of 3 agree

*Updated info: Personally I am taking 100 mcg daily Synthroid (synthetic T4) + 10 mcg daily Cytomel (synthetic T3).  Previously, I was taking 100 mcg daily Levothroid, a generic synthetic T4.  It took about a month, but I started feeling more energy and felt better overall on this combo therapy and new dosage level. 

If you are worried about your medication and/or dosage, the best thing you can do is keep yourself informed (register at ORGYN.com and sign up for the latest updates).  I would suggest that if you don't feel right on a particular therapy (give yourself at least a couple of months to adjust), talk to your doctor about changing meds.  If your doctor is resistant to changing your medication, I don't see any harm in a 2nd opinion, since it's important to have a doctor who listens to you and whom you trust.


Why don't doctors agree on the T4 monotherapy vs the T4+T3 combo therapy?

There have been conflicting studies done on the mono vs the combo therapy.  A 1999 study published in the New England Journal of Medicine found people to have improved mental ability and better mood overall on the combo therapy.  But subsequent studies have not been able to reproduce these results, thus most doctors continue on with the tried-and-true T4 monotherapy.  

However, some doctors suggest that the reason the subsequent studies failed to reproduce the results of the 1999 study could well be because the T4:T3 ratio was altered in the later studies.  In this editorial, Dr. Kenneth R. Blanchard, M.D., PhD, suggests the correct ratio of T4 to T3 is essential for optimal benefit, and believes his patients (1000 since 1990 receive this treatment) clearly benefit from the combo therapy in the ratio of 98% T4 : 2% T3.  There are caveats, which I hope I am summing up correctly by saying giving T3 in non-time-release capsules can have a seemingly positive effect at first, but over time actually is harmful to the patient.  But the correct ratio of T3, in time-release capsules, to T4, is superior to T4 alone.

It seems more studies need to be done to determine which therapy, if either, is most beneficial.   For more information, here is a link to an excellent article published by tsh.org.  And this article suggests the possibility of a small subgroup that responds better to the combo therapy. 


Chronic urticaria (CU) or chronic hives - it really gets under your skin

Someone recently emailed me about chronic urticaria (hives), a condition that can manifest as a result of ATA/TPO antibodies.  It's a subject I only touched on in this blog even though it's something I deal with and curse every day.  There is no cure, so there isn't much to talk about really.  However there are those who say they have found relief, as well as offer support, and you can find them here:

www.chronichives.com
www.urticaria.co.uk

What is CU?  In a nutshell, you are allergic to your own ATA/TPO antibodies.  You react with varying degrees of itchy hives on the skin; some are aggravated by cold, or heat, or stress, or touch (dermatographism), or by seemingly nothing at all.  In my case, if I scratch or even lightly touch an area (e.g. clothes touching my body) I'll break out in hives which look and feel like the worst poison oak ever.  They will spread absolutely everywhere on your body except your face, for the most part, and tend to follow nerve plexuses.  I have to take 2-3 Claritin daily, well beyond the recommended dose but I have no choice.  If I don't take Claritin, my breathing will ultimately be affected, which means it's not just skin deep.

Sometimes the disease will last only a little while; for others a lifetime.

The only known treatment (symptomatic only) is antihistamines, though some swear by fish oil and folate supplements (FolGuard is by prescription is a good combo of folate and B-vitamins).  However, I load up on both with no effect on CU. Some swear by certain diets that limit carbs and fermented foods - I believe you will find information on the links above.

An important note is that Claritin (considered safe during pregnancy) and other histamine blockers can interfere with implantation, according to my RI; so it's best to avoid taking any antihistamines for 3 days before and after ovulation.  I laughed at this of course, but the good news is that temporarily loading up with steroids like Prednisone will quell CU symptoms so you can enjoy the little things like breathing after discontinuing your histamine blocker.  But, steroids are not a good long-term solution because they destroy your immunity, which you of course need to survive. 


Goitrogens - what the heck are they?

Goitrogenic foods are foods that diminish thyroid function and their consumption should be limited if you have thyroid disease. 

Confusingly, nutritionists don't recommend you cut goitrogenic foods out of your diet entirely.  They say to remember these foods are highly nutritious and contain cancer fighting properties, so eliminating them from the diet may be unwise, especially if you are pregnant and need all the extra nutrition you can get.  Rather, an attention to moderate consumption of these foods in cooked form may be warranted.  Clear as mud?  So try to limit consumption to 1-2 servings per week, and don't gorge on a lot of goitrogens all at once.  If you generally eat the same, small amount of goitrogens consistently, then your medication should be able to compensate for the ensuing drop in your thyroid activity.

Below is the list I have comprised so far (which may not be comprehensive):

peaches
strawberries
peanuts
soybeans (and foods made from soybeans such as tofu - yes tofu! 
Click here for a great summary of potential issues on soy)
African cassava
arugula
babassu (a palm-tree coconut fruit popular in Brazil and Africa)
bamboo shoots
bok choy (Brassica chinensis, Chinese cabbage)
broccoli
brussel sprouts
cabbage
cauliflower
collard greens
Crambe abyssinica, or crambe
horseradish
kale
kohlrabi
Limnanthes alba, or meadowfoam
millet
mustard
mustard greens
radishes
rutabaga
spinach
turnips
turnip greens
watercress

One journal article (Chandra, 2004) states that boiling goitrogenic foods is better for minimizing anti-thyroid activity than eating them cooked (which I assume is baked or fried) or raw.  Also, taking excess iodide (which I assume can be gotten from iodine or kelp supplements) helps negate the anti-thyroid effects, but doesn't neutralize them.

Follow-up on soy:  My reproductive endo, Dr. Grellet, reiterated for me that soy does indeed diminish thyroid function.  Soy is listed as a goitrogen in many nutrition books including "Super Nutrition for Menopause" by Ann Louise Gittleman, PhD.  Endocrinolgists are frequently unaware of the potential anti-thyroid effects of soy on hypothyroid women who are in menopause and are often eating a lot of soy or popping soy isofavone capsules to ward off hot flashes.  If you're reading this blog you are probably not menopausal, but the point is if you are hypothyroid you should limit your intake of soy to no more than one serving per week.


What else can I do?

This is a question that will always remain in-progress, but in the meantime this is what I've learned:

If you are pregnant or trying, I suggest finding a reproductive endocrinologist who specializes in autoimmunity, particularly if you have Hashi's.

Exercise!  Aerobic!  Often!  (3-5x/week 45 minutes each ideal)

If pregnant, increase thyroid medication.  In case I can't get hold of her, my endocrinologist recommends I immediately increase meds by 30% upon confirmed pregnancy (giving me permission ahead of time to take extra meds without asking), *then* have a thyroid test done ASAP and have thyroid levels tested monthly during pregnancy to adjust dosage accordingly. She said my dosage will likely need to increase between 30 - 50% beginning the 1st trimester.

Be aware of thyroid med contraindications: for example, don't take calcium or iron supplements or eat high-fiber foods within 4 hours of your thyroid medication

Supplements: I've heard mixed reactions to supplements so I will rely on my nursing training here: if you are pregnant, take prenatal vitamins (I actually recommend Centrum instead of a prenatal since it is usually more comprehensive and balanced) that includes folate, calcium and iron, but don't take anything else until you double-check with an endocrinologist.  Instead, eat a balanced diet, which is far superior to taking supplements.  We haven't discovered every nutrient under the sun yet, only a few.  And the interaction of nutrients is very complex and not well understood, despite ongoing research.  So taking supplements, while partially helpful, will never be as good as the real thing.  Don't take your multivitamin within 4 hours of your thyroid meds.  L-tyrosine, selenium, vitamin E, primrose oil (for thinning hair), Omega 3 and 6 supplements and zinc might be helpful, but don't take kelp.  Again, ask your doctor before taking any new supplement as there might be a contraindication for your particular condition or with your meds.

Eat healthy - raw, non-processed foods especially (be careful with raw foods if you are pregnant!).  Mix it up.  Don't buy all your veggies and fruit from the same farmer's market vendor; buy from varied sources so you get a variety of nutrients from varied soil sources (supermarkets mix up their vendors depending on market price, so they are a good source).  Don't go on a high-protein, low-carb diet -- too much protein OR too many carbs can be detrimental if you have a thyroid condition.  Zone, South Beach are safer.  Better yet, don't fad diet - just eat smaller portions of healthy, unprocessed food.  Worry about weight-loss after you stabilize your thyroid, unless your doctor tells you otherwise.  If you're pregnant, don't diet at all, of course.

Limit goitrogenic foods, which depress thyroid function, above all limit soy.  This includes tofu.  I know, it's supposed to be so good for you.  But not if you have thyroid disease.  Sorry!  

This is not thyroid-related, but the nurse in me can't help but mention that soy can trigger nut allergies.  I've seen people in the ER come in with anaphalaxis due to a nut allergy which originated from soy.  Often soy is genetically modified - actually 99% of the time - and often that genetic alteration comes from nuts, such as DNA from a Brazil nut, which can modify the soybean's genetic material enough to trigger a nut allergy.  If you have a severe nut allergy, best to avoid soy like the plague, since genetic alterations aren't posted on the box.

You should avoid high-gluten products.  The reasoning behind avoiding high-glycemic index foods is to stabilize your blood sugar levels, which is linked to chronic disease.  Of course, you should be careful of all high glycemic-index foods if you are pregnant, because of the risk of gestational diabetes.  FYI, potatoes and white rice score very high, and pasta surprisingly not that high (so, yay, pasta is not off the menu).  I would think high-gluten flour, the main ingredient of most breads and pizza crusts, scores way, way up there.  The goal: maintain a steady blood glucose level.  Go to www.glycemicindex.com and click on "GI database" to find out the GI score of your dinner ingredients.  (Note: stevia and fructose are excellent sweeteners that don't raise your serum glucose nearly as much as table sugar, stevia not at all.)

 

More reading

Here is an informative overview by the American Thyroid Association (ATA) on early maternal thyroidal insufficiency: recognition, clinical management and research directions:

http://www.thyroid.org/professionals/publications/statements/04_04_26_maternalthyroidal.html

A good source for medical journal articles is ORGYN.com (registration is free!) and PubMed and MedLine.  I also recommend the AACE, ATA (American Thyroid Association) and TSH.org to be helpful. 

Click here to find a list of doctors who specialize in thyroid issues.

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That's it for now.  I'll keep updating this section rather than posting new entries.

 


Posted at 03:05 pm by lisachu
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Monday, April 24, 2006
April 24, 2006

Update 4/24

Today I got my 2nd opinion, this time from a reproductive endocrinologist named Dr. Grellet, a private-practice physician in Los Gatos, CA.  Her specialty is helping women with fertility and thyroid issues.

Dr. Grellet cares, and most importantly, she keeps up with current research.  Without my asking, she rattled off medical journal articles and studies -- from memory. 

She disagrees with the previous endocrinologists I have seen on two major points.  One, she said TSH should be between .3  - 3.0, NOT .5 - 5.0.  This is the diagnostic TSH level, as revised by the AACE (American Association of Endocrinologists), in 2002.  Dr. Grellet said she has never met an endo who does not currently utilize the new standard (apparently she hasn't met anyone from Kaiser).  Furthermore, she said if you are pregnant, your TSH should ideally be between .3 and 1, or your baby runs a higher risk of cognitive impairment.  Surprise  

The "treatment" level of TSH should be between 1 and 2, and if you are pregnant, even lower -- ideally between .3 and 1, according to Dr. Grellet.  The "diagnostic" TSH levels, as revised by the AACE (American Association of Endocrinologists), in 2002, is roughly 0.3 to 3.0. The "treatment" TSH level they recommend is 1.0 to 2.0 for titrating (adjusting thyroid medication levels).  However, many patients feel better between 0.3 and 1.0.

Two, she does not believe in Levothyroid, a generic synthetic T4, for treatment, particularly if you are pregnant or trying (this is what I have been taking).  The reason is, although it is less expensive, the efficacy of the generic can vary by a very significant amount (as much as 50%).  The goal is to stabilize your thyroid, hard to do if the strength of your drugs changes.  

More stable, she explained, is Synthroid (a brand of synthetic T4).  She believes Armour (a brand of whole dessicated thyroid) is not as desirable because the absorption varies, again making it difficult to titrate.

In addition to switching me from Levothyroid to Synthroid, she also prescribed a synthetic T3 called Cytomel.  T4, she explained, is the stored form of thyroid hormone, while T3 is the active form.  The stored form must be converted to the active form before it can be used.  The story gets complicated from here, but the theory is, some people respond better with added T3.  Dr. Grellet said research -- and her patients' personal experiences! -- indicate the majority of hypothyroid women feel more mentally alert and have more energy overall with added T3, particularly Hashimoto's patients (those who also make the antibodies).  Since I am making both ATA and TPO antibodies, and I had a miscarriage, and my thyroid was pretty stressed by my pregnancy, and I didn't "feel" better with Levothyroid treatment only (even though my TSH went to 1.9, normal), she felt I may benefit from the additional T3. 

She agreed with my other endo about getting a TSH test as soon as you discover you're pregnant, and then again every 4-6 weeks during the pregnancy (every 4 the first trimester).  She even handed me a whole stack of lab forms so I wouldn't need to call each time.   

She also agreed with the other endo that I should NOT take a kelp supplement.  Kelp is essentially an iodine supplement, and too much iodine can actually make hypothyroidism worse.  L-tyrosine is fine, calcium, prenatal or multi-vitamins are fine (if not taken concurrently with thyroid meds of course) but not kelp. 

And it's ok to eat one serving of soy once a week, but don't eat a lot of it.  The same goes for other goitrogens.  If you do eat it, try to eat the same amount regularly so you can keep your dosage even.

I'll keep updating.  My first lab test will be 6 weeks from now, unless I get pregnant first!  Big Smile

---

Update 5/5:  ovulated 4/21, but no pregnancy.  :(  Maybe too soon -- my TSH was 7.7 only 3 weeks before.  It takes a while to titrate (6-8 weeks I think).  


Posted at 07:55 pm by lisachu
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