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Sticky Blood-Hughes Syndrome Support
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Hi, I haven't been officially diagnosed and am waiting for the Rheumatologist to review my file and results. I am unsure if this is the right group but I joined to learn more from all of you and to share and ask for advice.

Little bit about myself, I have Graves disease post RAI as well as high antibodies for TPO. Some might say I have Graves and Hashimotos. My health has been off for a while, alot deficiencies such as vD, low within range b12, Iron anemia on and off; now low but within range/ ferritin low. I have struggled with heavy periods quite a bit in my life until recently. Another two interesting factors are, I have been watching my platelets go down (low out of range, but never terribly low; just consistent) since 11/7/17 and mpv rise since 4/6/17. The other is I have been experiencing swelling of one leg (sometimes in calf or knee) or the other and pain but it doesnt always last all day.

I also have documention that same thing happened sometime either during or after the birth of my daughter 11 years ago but they couldn't find a clot. My pregnancy seemed to be pretty healthy outside of normal nausea etc. She was born 22 days early but health weight and size. My blood pressure did shoot up through the roof and the doctor ended up strapping me down thinking I would have a siezure, and chose to perform an episiotomy. I lost alot of blood and dont remember much but labs showed that I was there 4 days after and so I am wondering if it was due to blood transfusions (I had two) and tests.

The rheumatologist hasn't called me back yet and my titre is not very high, 1:160 Homogeneous. Anti-Cardiolipin Ab, IgG (EIA) <15.0 negative: <15.0 GPL, Anti- Cardiolipin Ab IgA (EIA) <15.0 Negative: <15.0 APL, Anti-Cardiolipin Ab, IgM (EIA) <12.5 Negative: <12.5 MPL

So it obviously shows I am negative, but am curious regarding my symptoms. Any thoughts or comments are appreciated, thanks.

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I can see why you may be worried that you have APS but your tests seem to be reassuringly negative which is good. You will see from this study that Thrombocytopenia with Graves is quite a common occurrence, therefore Im slightly confused as to why you are being referred to a Rheumatologist rather than an Endocrinologist, who clearly is the specialty that needs to be treating you.

You will also note from this study that one of the patients had similar symptoms to you. It would seem that the high antibodies are what is causing the low platelets. I hope this is helpful and good luck with getting the correct help.

ncbi.nlm.nih.gov/pmc/articl...

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I’ve actually never heard that there is a correlation and will have to look into this thank you. I do see/ have seen an endo for a long time. What might he be furthermore interesting is that, I had the rai treatment in 2010 and it didnt work. I was hyper for quite a while after (no documention of platelets during this time. Normalized in 2014 or 2015 (cant remember) and hit severly hypo in 2016 and am on full thyroid support as of this past december. This most recent ana test is higher due to my TPO antibodies being over 1000 and the PA that I see (endo is new and hasnt come into office yet) has not once talked about platelets or other blood involvement but I havent asked either.

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I think this is quite complicated and have to say its not my area at all. Have you tried posting on Thyroid UK on here?

To me it sounds like you need a good Endo so if you are not getting the right care you may have to look at changing. Im a firm believer in having a specialist you can work with and trust no matter what the condition. I have Hashi so am under a good Endo and can give you the name of a very good private one in London if you ever need one just PM me.

Im sure TUK will be able to advise you better too.

Good Luck.

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Thank you, I am apart of the group and have been posting there for a while but didnt know that low platelets are common with graves. I do think there is something different about my case as I am no longer hyperthyroid but will ask. Thank you for the offer, I am alright though.

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HI, Thyroid UK is the best charity, plus their associated patient forum, on this platform. I would still go with the Rheumatology appointment as well as perhaps asking to be referred to an Endocrinologist. TUK, will advice you probably to check your B12, D, Folate, Ferritin alongside regular Thyroid Tests. If they suspect Hughes Syndrome/APS, you may have to test again in the future, it is not that unusual to be negative only to be positive later on, so for now just keep that in mind while they investigate other things, should you have a hint of a clot or anything like that, do draw any doctors attention to the fact they were looking at that before, in terms of Hughes Syndrome/APS.

Thromboyctopenia can take place with this condition as well as with other autoimmune conditions including Thyroid disease. Also if you vitamin D is low your antibodies will climb up. thyroiduk.org/

I hope you get to the bottom of things.

MaryF

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