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
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
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! =)
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
For Mary re Thyroid issues
Presumed lupus and thyroid swollen
Another PE or pneumonia or the big C. My thyroid has gone haywire, also my folic acids are high.
