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Hashimoto's thyroiditis and itp

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10 years 8 months ago #45949 by AnneMarie P
Hashimoto's thyroiditis and itp was created by AnneMarie P
Hi
I was sent to the ER December 1 with a count of less than 2. Failed response to 60mg prednisone then invig managed to get me to 23k so I left the hospital then back down to 13 the next day. I went into the big city to see anew hematologist who started me on 25 of Promacta. After 1 week that brought me to 38 so up to 50 of promacta and started tapering off prednisone. Took the last one 9 days ago. Counts dropped from high of 65 to 38 2 days ago. This forum has really helped managed the stress and keep it in perspective .
My question is whether my hypothyroid condition which I believe was being under treated has something to do with this ? I have had hashimotos since 1989.
I am very fatigued but no bruises a few new petechia.
Nine weeks in to this and appreciate any help from others
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10 years 8 months ago - 10 years 8 months ago #45953 by tamar
Replied by tamar on topic Hashimoto's thyroiditis and itp
In general, hashimotos and itp are unrelated (except that they are both autoimmune conditions). If your thyroid condition is undertreated (indicated by a high TSH reading) that is a cause of fatigue.

Hashimotos runs in my family, but I did not have it when I was diagnosed with ITP. I did develop a high TSH about 5 years after my ITP diagnosis. Treating it had no effect on my platelet counts.
The following user(s) said Thank You: AnneMarie P
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 8 months ago #45954 by Sandi
Replied by Sandi on topic Hashimoto's thyroiditis and itp
Anne Marie:

I have seen a few articles over the years which link thyroid disorders and ITP. All they really say is that the ITP should resolve in some cases if the thyroid levels are under control. I've been here for a long time and have not seen that happen; several people here have thyroid disorders, mostly Graves.

Many times, people with one autoimmune disorder develop others due to a genetic propensity toward autoimmune problems. Many people here have more than one.

I'll try to remember to post some articles for you tomorrow. I'm in bed with my phone right now.
  • midwest6708
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10 years 8 months ago - 10 years 8 months ago #45958 by midwest6708
Replied by midwest6708 on topic Hashimoto's thyroiditis and itp
My Hashimoto's was diagnosed in 2003, and has been optimally treated and stable since 2004.
I was diagnosed with ITP in 2008, but I think I had it for a year before that.
It's human nature to want to identify the cause of ITP. I tried for a while, but have given up and resigned myself to the mystery of it at this point.

I don't attribute any connection of one disease to the other, except as Sandi says... That autoimmune diseases tend to 'cluster'.
I haven't noticed that treatment for either disorder makes any difference in one to the other.
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10 years 8 months ago #45959 by
Replied by on topic Hashimoto's thyroiditis and itp
I have a number of friends with Hashimoto's and none of them have ITP or any other autoimmune disorder.

Sounds like you are keeping track of your platelet count and really you need to do the same with your TSH - you are your own best advocate. I let my endocrinologist know when I'm not feeling right and ask for blood work. Are you taking thyroid med?

As Tamar said one of the side effects of hypothyroid is fatigue - if you haven't been tested you need to do so.

I have Graves Disease - had ITP about 13 years before Graves hit, my MD always ran thyroid tests routinely when giving a physical so know my thyroid was fine all those years.
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10 years 8 months ago #45967 by CindyL
Replied by CindyL on topic Hashimoto's thyroiditis and itp
I've had my under-active thyroid for years. Long before I developed ITP. I keep my thyroid under control with medication. When I was first diagnosed with ITP my doctor took me off all meds to see if they were the cause. They weren't so I'm back on them.
The following user(s) said Thank You: AnneMarie P
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10 years 8 months ago #45970 by Sandi
Replied by Sandi on topic Hashimoto's thyroiditis and itp
These articles don't tell much, but they do mention that the two can go together. Very few autoimmune disorders are ever mentioned as being common with ITP, but thyroid disorders, APS, ALPS and Lupus are the main ones.

Eight percent to 14% of ITP patients followed longitudinally developed clinical hyperthyroidism. Others developed antibodies to thyroglobulin and may eventually develop hyper- or hypothyroidism. Mild thrombocytopenia has been reported in patients with hyperthyroidism (reduced platelet survival) and hypothyroidism (possible decreased platelet production), which often resolve with restoration of the euthyroid state. It may also be useful to measure antibodies to thyroglobulin and thyroid-stimulating hormone (TSH) to identify patients at risk for clinical thyroid disease.

www.bloodjournal.org/content/115/2/168.full


Abstract
OBJECTIVES:
To estimate the prevalence of the association between thyroid disease and idiopathic thrombocytopenia (ITP), and to examine the effect of treatment of the thyroid condition on platelet count.

DESIGN:
Retrospective cohort study performed in a tertiary care center setting. All patients who were diagnosed with ITP by a single provider at the Cleveland Clinic Hematology/Oncology Department between 1988 and 2005 were included.


MAIN OUTCOME:

Among the 98 patients, thyroid function tests were available in 80 patients. Of these, 16 (20%) had abnormal thyroid function: 6 had hyperthyroidism and 10 had hypothyroidism. The median interval from the onset of the thyroid or hematological condition (whichever came first) was 84 months (range: 25-612). The autoimmune nature of the thyroid disease was proven in 12 cases (75%). Three patients showed a transient increase in the platelet count after restoring the euthyroid state; however, durable improvement of thrombocytopenia was not encountered.


CONCLUSIONS:

The prevalence of hypothyroidism in patients with ITP is higher than in the general population. Based on this observation, routine assessment of thyroid function should be done in patients with ITP. The long-term course of ITP was not influenced by the treatment of the thyroid condition.


www.ncbi.nlm.nih.gov/pubmed/17887931

ITP (Idiopathic thrombocytopenic purpura) is a disorder of blood platelets, a circulating fragment of blood cells responsible for ensuring that our blood coagulation system responds appropriately to blood vessel injury by helping blood clots form. When the levels of platelets become abnormally low, or when platelets don't work properly, the risk of bleeding may be increased. Patients with ITP often have circulating antibodies directed against their platelets, in a manner analogous to patients with Graves' disease (GD) that have antibodies directed against their thyroid gland. Both ITP and Graves' disease are autoimmune disorders, and the precise reasons why some immune systems produce these antibodies remains unclear. Nevertheless, patients with GD have a slightly increased risk of developing ITP, and conversely, patients with ITP will have an increased risk of developing autoimmune thyroid disease. There does not seem to be a consistent relationship between progression of ITP and treatment of GD Variable presentation of thrombocytopenia in Graves' disease. Arch Intern Med. 1982 Aug;142(8):1460-4.) although in some instances, treatment of the hyperthyroidism will be associated with improvement in platelet counts. See Graves disease associated with autoimmune thrombocytopenic purpura. Arch Intern Med. 1997 May 12;157(9):1033-6.

www.mythyroid.com/diseaseassociations.html

A longitudinal, retrospective study has found a much higher than expected prevalence of thyroid disease in patients with immunologic thrombocytopenia. In addition, treating the thyroid condition did not improve the thrombocytopenia.

This study has implications for both diagnosis and treatment, according to lead author Adriana Gabriela Ioachimescu, MD, a fellow at the Cleveland Clinic in Ohio.

"This is the largest study to date looking at thyroid function in patients with immunologic thrombocytopenia," Dr. Ioachimescu told Medscape. "There have only been 3 published since 1931, two before 1975. We are presenting the prevalence data together with the clinical course data."


Dr. Ioachimescu told Medscape that the motivation for this study was 2-fold. "We looked into the course of the 2 diseases to see whether there was an impact on the platelet count by treating thyroid disease. We were also able to determine the prevalence of thyroid disease in patients with immunologic thrombocytopenia."

The study was presented here at the 15th annual meeting of the American Association of Clinical Endocrinologists.


Immunologic thrombocytopenia is a progressive disease usually resolved with either chronic steroid therapy or splenectomy. Theoretically, if the disease were improved by treating the thyroid condition, patients might have the option of a different (perhaps less drastic) therapy, and a better prognosis.

Based on the 3 historical studies, the estimated prevalence of hyperthyroidism in conjunction with immunologic thrombocytopenia would be between 5% and 14%. The estimated prevalence of hypothyroidism with the same comorbidity would be 5%. In the general population, the prevalence of hyper- or hypothyroidism is between 5% and 6%.


Dr. Ioachimescu's study indicates that as many as 20% of patients with immunologic thrombocytopenia also have 1 of the other thyroid conditions. Based on that finding, the study recommends routine assessment of thyroid function in all patients with immunologic thrombocytopenia.

The study was a retrospective review of the charts of 98 patients who were consecutively diagnosed with immunologic thrombocytopenia by a single provider, Alan Lichtin, MD, between 1988 and 2005. Thyroid status was described for 83 of the 98 patients, and abnormal thyroid function was found in 16 of the 83. Hypothyroidism was found in 10 of these 16 patients, and hyperthyroidism in 6 of the 16.


"And indeed out of the 16 cases, we only found 3 in which a transient improvement in the platelet count was noticed with treatment of the thyroid disease. The other 13 did not show any change. And even the 3 who showed the change, that was only a transient phenomenon," Dr. Ioachimescu told Medscape. "So it is not so clear any more that treating thyroid disease in patients with immunologic thrombocytopenia will correct their platelet count."

Dr. Ioachimescu told Medscape that the study led her to two conclusions. "It should become routine to check thyroid function in patients with immunologic thrombocytopenia," she said.


For the second conclusion, "We do not think that treating the thyroid disease will necessarily influence long-term platelet count, or symptoms like porphyria and bleeding, from the low platelet count.... It doesn't looklike we are going to get too much of a positive effect from correcting the thyroid function test. Maybe just transiently, or a case here and there," Dr. Ioachimescu told Medscape.

But to an endocrinologist in private practice, the findings were not all that startling. Medscape asked Alan Kluger, MD, an endocrinologist from Great Neck, New York, for his impression of this data.


"Any time you have one autoimmune disease the likelihood of having another autoimmune disease is greater than if you had none to begin with," Dr. Kluger told Medscape. "You commonly see autoimmune thyroid disease at increased rates in people with any autoimmune disease — such as [immunologic thrombocytopenia]."

www.medscape.com/viewarticle/531571
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10 years 8 months ago #45973 by AnneMarie P
Replied by AnneMarie P on topic Hashimoto's thyroiditis and itp
Thank you. I guess I just keep looking for a cause and when I was admitted to the hospital my TSH levels were low so they immediately increased my Synthroid from 100 to 125. I had been trying to get my primary care Dr. to increase the dose because of the weight gain and lethargy for a couple of years which he refused to do. So aside from the ITP and side effects of the Promacta, I actually feel a little better most of the time. Thanks again.
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10 years 8 months ago #45975 by AnneMarie P
Replied by AnneMarie P on topic Hashimoto's thyroiditis and itp
Thank you these are really helpful. The first team of Doctors also looked into links between Lyme Disease which I was treated for in 2010. My current Hematologist says it was a virus that set the ITP in motion.
  • Sandi
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10 years 8 months ago - 10 years 8 months ago #45976 by Sandi
Replied by Sandi on topic Hashimoto's thyroiditis and itp
I think I'd get someone else to manage the Hashimoto's. Is he an Endo? My daughter has Graves and had her thyroid removed, so she is on Synthroid too. It can be hard to stabilize and even when you do, the levels can change often.

This sentence pretty much says it: "Any time you have one autoimmune disease the likelihood of having another autoimmune disease is greater than if you had none to begin with," Dr. Kluger told Medscape. "You commonly see autoimmune thyroid disease at increased rates in people with any autoimmune disease — such as [immunologic thrombocytopenia]."

All you can really do at this point is get your thyroid levels in the right ranges for a while and see what happens with your counts. As for Lymes triggering ITP, it's very possible, but not much you can do about it.
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10 years 8 months ago #45978 by AnneMarie P
Replied by AnneMarie P on topic Hashimoto's thyroiditis and itp
Great advice. I am looking for an Endocrinologist now that might be expert in both. I have had my primary care Dr. managing the Hashimotos for the last 10 years but he is getting replaced too! Thanks again,
10 years 8 months ago - 10 years 8 months ago #45979 by
Replied by on topic Hashimoto's thyroiditis and itp
I'd want an endocrinologist - you need to get your thyroid under control. American Association of Clinical Endocrinologists (AACE) put the normal TSH range at 0.3 - 3.0 and that is what my endo uses [plus I know I feel best when TSH is around 1.0]. If you are way out of whack it may take a while to get the proper dose - and one should be on a dose for 6-8 weeks before testing again, that gives time for the body to adjust to the new dose.

Keep us posted.
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10 years 8 months ago #45981 by Aoi
Replied by Aoi on topic Hashimoto's thyroiditis and itp
I've had subclinical hypothyroidism for years; i.e.: elevated TSH but normal T3 and T4. One of my docs tried my on thyroid replacement in the hopes of raising my platelet count, but that didn't happen. My research on the subject led to finding lots of articles saying the autoimmune disorders often occur together in the same person, and that once you have one, your risk of having another rises significantly.

A MD friend of mine has Hashimoto's but a completely normal platelet count. She told me that the vast majority of people with Hashimoto's have normal counts. She also said that even with very sluggish thyroid function platelet counts generally remain in the normal range.

From reading and experience I've found too many primary care docs trying to treat thyroid disorders. An endocrinologist is very useful and arguably essential for good management of a thyroid disorder. I hope you can find a good one.
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10 years 8 months ago #45983 by AnneMarie P
Replied by AnneMarie P on topic Hashimoto's thyroiditis and itp
Thank you. I just booked an appointment with an Endocrinologist in the city for next month. MY last TSH (after a week in the hospital and a week on the increased Synthroid) was 2.8. SO I will keep closer tabs on it from here on.
  • midwest6708
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10 years 8 months ago - 10 years 8 months ago #45986 by midwest6708
Replied by midwest6708 on topic Hashimoto's thyroiditis and itp

Aoi wrote: From reading and experience I've found too many primary care docs trying to treat thyroid disorders. An endocrinologist is very useful and arguably essential for good management of a thyroid disorder. I hope you can find a good one.


I can't discount your experience; but from my point of view, I must respectfully disagree.
Endos would be best IF all hypothyroidism cases were textbook clear. But they're far from that. My own experience has been that Synthroid made me clinically and symptomatically hyperthyroid in even the smallest dose. The endo who prescribed it told me to stop taking it and remain hypothyroid until I could "tolerate" the Synthroid. Unwilling to do that, I saw a family practitioner who prescribes Armour (natural) thyroid, which was my solution. Very few endos are willing to prescribe natural thyroid. My current thyroid doc is an internist, and he's also willing to think outside the thyroid box, thank heavens.

Those of us who have the more common atypical cases are unlikely to resolve them with an endo. That's why thyroid forums are so heavily trafficked by people who are being inoptimally treated.
  • Sandi
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10 years 8 months ago - 10 years 8 months ago #45989 by Sandi
Replied by Sandi on topic Hashimoto's thyroiditis and itp
If it were me, I would prefer an Endo over a GP, but I agree 100% that many Endo's do not think outside the box they've nailed themselves in. My daughter has had some very strange advice from her Endo's and is on #7 I believe, in the past 8 years. Her last one told her that since she had her thyroid out, she doesn't have Graves anymore. That is the most ridiculous thing! She still has to worry about TED and all of the other things that can happen due to the antibodies (which are always high). That's like saying that you don't have ITP anymore because you had your spleen out.

Another one refused to treat her because she would not go on birth control. The doctor actually refused to refill her Methimazole on a Friday afternoon when she was out of pills. You can't force birth control on anyone! Her very first Endo prescribed Methimazole and the dose was apparently too high to start with because two weeks later, her TSH was 40. Most of these are doctors in the best Pittsburgh Hospitals. Graves can be hard to control for some patients and in that case, you need a doctor who will listen to symptoms and treat accordingly, not just look at the numbers.

Janet - are you familiar with Elaine Moore? She has been very helpful over the years.
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10 years 8 months ago #45990 by AnneMarie P
Replied by AnneMarie P on topic Hashimoto's thyroiditis and itp
I did read about Armour a few years ago. I guess even though I have been taking these thyroid replacement pills for 26 years, I seldom paid attention to my levels and believed the GP who kept telling me I was in the normal range.
I guess it took the ITP diagnosis to get me to pay better attention to my health.
  • midwest6708
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10 years 8 months ago #45991 by midwest6708
Replied by midwest6708 on topic Hashimoto's thyroiditis and itp
Yes, I do know Elaine Moore's work. If I had Graves', she would be my guru the way you are about ITP, Sandi.

I should amend my first reply a bit.
I whole-heartedly believe in endos for treatment of Graves' disease. I don't think any other specialty has the expertise for the complexities of that disease, mostly because it's so much rarer than Hashi's. I think the incidence ratio is something like 8:1, hypo to hyper.
I also think untreated or poorly treated Graves' is much more dangerous, so it demands an endocrine specialist.

Once a gland has been removed or ablated, the endo is often not the best at thyroid replacement therapy, though. On the whole (but with some exceptions, of course), endos are too reliant on lab results alone in determining the thyroid dosage. They tend not to listen to symptoms at all, and too often keep patients undertreated. Thyroid needs vary widely according to individual physiologies. In these instances, internists, GPs, or osteopathic physicians can be more flexible and willing to try the dosage and type of hormone that works best for those patients.

That said, it's my experience with my own case and those of hundreds of others in the forum I've been frequenting for more than 11 years that almost any other specialty is better for thyroid replacement than the garden variety endocrinologist.

Annemarie, I can get carried away with the subject of poorly treated low thyroid, can you tell? But I know this isn't the venue for that. If you don't feel as well as your doctor says your lab results indicate you do, please don't settle. If you want to PM me for guidance on the subject, I'll try to help.
10 years 8 months ago #45992 by
Replied by on topic Hashimoto's thyroiditis and itp
And for the very reasons you have given Janet is why I love my endocrinologist - she and I are partners.

Annemarie keep us posted regarding your platelets and your TSH - hope you like the new endo!
  • Sandi
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10 years 8 months ago #45996 by Sandi
Replied by Sandi on topic Hashimoto's thyroiditis and itp
Janet:

I agree 100%, again! If you have a GP who is managing a thyroid disorder and you are doing well, by all means, stick with him/her! I think the way someone feels is much more important than the labs. My daughter has constant problems with her health and the Endo doesn't listen, just argues that the labs are good. It's so frustrating. The poor girl is working full time, keeping up a house and going to nursing school.....they don't get that people have lives to live. Maybe I'll make that suggestion to my daughter, that she see someone else. She loved this guy (he was her surgeon and specializes in thyroid disorders), but he started to disagree with her about her BP meds...long story.

Thanks for the guru compliment, but I certainly don't see myself that way. Just one of the crowd here.
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10 years 8 months ago #46003 by tamar
Replied by tamar on topic Hashimoto's thyroiditis and itp

AnneMarie P wrote: Thank you. I guess I just keep looking for a cause and when I was admitted to the hospital my TSH levels were low so they immediately increased my Synthroid from 100 to 125. I had been trying to get my primary care Dr. to increase the dose because of the weight gain and lethargy for a couple of years which he refused to do. So aside from the ITP and side effects of the Promacta, I actually feel a little better most of the time. Thanks again.


Hi AnneMarie,

This may just have been a typo on your part, but it is when TSH levels are HIGH that you should increase synthroid. Hopefully your docs got it right!
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10 years 8 months ago #46004 by Aoi
Replied by Aoi on topic Hashimoto's thyroiditis and itp

midwest6708 wrote: I can't discount your experience; but from my point of view, I must respectfully disagree.
Endos would be best IF all hypothyroidism cases were textbook clear. But they're far from that.


Your point is well-taken. My MD friend with Hashimoto's has had a similar experience, though in her case she found an endo willing to do what your internist is doing with you. It's easier to be treated for a condition if your presentation matches the textbook description. The further from the textbook you are, the harder it can be, whether Hashimoto's or ITP or something else. Having an atypical presentation of a rare disorder, as people here often describe with ITP, can be very frustrating and require a lot of work. Having a doctor who acts as a partner is great, of course, though finding that doctor can involve a lot of trial and error, at least in my experience.