Thyroid gland

Hi everyone! I was diagnose of Aps few months ago after a deep vein thrombosis and I am better but not good. My anxiety lives with me . Now, Doctors found that my thyroid gland is not working well, I have low levels of this hormone and they think may have to be with my illness. Does anyone suffer something similar too?

Have a nice day

Best wishes

Ana

10 Replies

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  • Hi, yes it is very common with Hughes Syndrome/APS to have a thyroid problem, and in some people an untreated thyroid can cause anxiety and depression. The charity we recommend on here is Thyroid UK, who have a fantastic website and also they have a patient forum on this same platform. I am glad your doctor has picked this up. Please tell your consultant, that Professor Hughes himself often writes about the trio of disease which is Hughes Syndrome/APS, Sjogrens and Thyroid Disease. MaryF

  • oh thank you. I have revision next month so I will tell her and also I will have a look to this website.

    =) best wishes

    Ana

  • Couldn't have put it better myself Mary! I would just add to make sure your good Dr does all the thyroid tests, FT3, FT4 plus the te thyroid antibodies, TPO and thyroglobulin. Also through the above mentioned Thyroid Charity you can arrange a genetic test for a gene variant DIO2 which will mean you would have a problem with T4 to T3 conversion. It's worth doing as if you do have this genetic variant your tests won't show up a true result.

    Please also make sure your ferritin is at optimum levels (so get it checked) or your thyroid meds will not be able to get to the cells to work properly. Also Vit D and B12.

    As Mary says many of us have these additional problems including myself and once adequately medicated your anxiety will feel better.

  • thank you. I will have a look to that website, my level of ferritin are ok now and I am taking vit because my system was a bit low. The anxiety is becoming better but it depends of the day. Doctors receipt me some tablets that I take only what it is needed. Thanks for all the information

    Kind regards

    Ana

  • Who diagnosed your APS? Where do you live?

    Were you diagnosed by antibodies also? Are you on any anticoagulation drug now after the DVT?

    APS means too thick blood that has to be properly thinned at a rather high level of INR (if we have got Warfarin that is). As Prof Hughes says (read also his blogs here) "we do not bleed from APS but clot". We also need an INR of at least 3.5 - 4.0 to be safe from severe symptoms. Some of us may have "LMW Heparin" instead of Warfarin.

    I suggest you read Sticky Blood Explained by Kay Thackray. She has APS and writes about the symptoms with this rare illness that so very few Doctors understand. It is a good book to understand how it is to live with this illness.

    I was operated for Hyperparathyroidosis in 2006 (they took one gland away). Too much calcium and PTH intact. I have always wondered how much APS was a cause but at that time I had not started Warfarin (anticoagulation) and was only on Baby-Aspirin which is not a coagulation drug but an antiplatelet drug that works in quite another way than Warfarin. It helped to begin with the first years but then I needed a real anticoagulation drug like most of us here.

    Please stay with us here and look for a Doctor who is specialized in autoimmun illnesses.

    Best wishes from Kerstin in Stockholm

  • wrong: PTH was not intact (that means that it is ok) It was too high indeed.

    Kerstin

  • I live in Spain and yes I have antibodies and I am taking rivaroxaban 20mg since November 2015. Thanks for the recommendation, I will read it. I have a revision next mothn so I will talk with my doctor about all of this.Now, it seems that my gland is a bit low and I taking medication to see how is doing. Your answer is really helping me.

    Best wishes

    Ana

  • I am glad if I could help you. I did not operate on my Thyroid but they took away one of the PARATHYROID glands.

    I know Prof Hughes says that APS, Sjögrens and Thyroidea go hand in hand. That is why I wonder if my Parathyroidea was a cause of APS. I believe so but I am not sure.

    Kerstin

  • Hi

    My colleague, Mary, who is the lay thyroid expert here, has given you a good reply.

    Dave

  • Thank you! =)

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