Your disease course exactly mirrors mine 3 years ago including the endo being a diabetes specialist ! I became hypo which worsened my TED. What worked for me was changing to block and replace regimen. You need Trab antibodies measured. Mine remain high and therefore remission is unlikely at the moment. I asked for a second opinion and my new endo is much better and monitoring me well and more importantly I feel well but it was a long journey.
Thanks, that's really helpful, and great to hear that you're feeling well now.
I'm thinking I need to get a definitive antibodies test done but these aren't cheap and I want to make sure I get the right one. I've never been completely convinced by the Graves diagnosis as my general symptoms have always been more hypo than hyper.
Are you in the UK ? I don't understand why you should pay for antibody test as it is the only way to diagnose Graves'. The "Diabetes Endo " said they didn't do it unless I was pregnant ( I am 73 ). The first thing the second endo said was " we need to measure your antibodies ." I read a lot about Graves but still find the hypo/hyper situation confusing. It can be from which antibodies dominate at any time blocking/ stimulating or from a combination of Hashi/Graves. I rationalise it all by focusing on my objective ie to feel well. I am aware that with this disease things can change. However I can change my dose of meds to accommodate.
Yes, I'm in the UK, but the NHS (both GP and Endo) will only do the TPO test. The diagnosis from this was "autoimmune thyroid disease", which as I understand it can be either Graves or Hashi. My GP told me "they're both the same thing" and the Endo said that they diagnose Graves or Hashi according to whether the patient is over or under-active at the time.
Can anyone clarify if this is correct as I'm reluctant to ask again as they make me feel like a dumb hypochondriac.
Hashi and Graves are not the same autoimmune disease.
They are diagnosed by differing antibodies and require completely different treatment. However, the confusion arises because patients can have both.
Hashimotos is usually diagnosed by testing TPOAb & TGAb.
TSI used to measure the ability of IgG to bind to TSH receptor cell and so diagnosis Graves, can either stimulate the thyroid (Graves) or block the TSH receptor (Hashi).
Endos should know this but they often don’t. There is a chance you have been diagnosed incorrectly and are medicating the wrong meds, as other members have previously.
Ask your doctor where your Graves diagnosis has come from. Post any further results complete with ranges (numbers in brackets) for members to comment.
Thanks, I was tested for coeliac and it came back negative, tried gluten-free and saw no noticeable improvement.
I'm a little confused about TSI/TRab. Can you have one without the other? If I got tested for TRab and it was negative, for example, would I still need to get tested for TSI to rule out Graves (or vice versa), or would the negative TRab automatically rule out Graves. Or would it just mean that the Graves wasn't "active" at the time of the test?
Just back from GP appointment. They flatly refuse to test anything other than TPO (which has already been done and was positive). They "don't use" European guidelines. They say it is irrelevant whether I have Graves/Hashi/both antibodies. I can't afford private testing. Really angry. I don't ask much from the NHS. Going to stop typing before I get really sweary.
You can understand why there's almost 100,000 members on here
Your GP can and should test vitamin D, folate, ferritin and B12 . Some or all of these are often too low with Graves or Hashimoto's
Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists. You are entitled to a second opinion on NHS. There may be a recommended NHS endocrinologist near you
"we don't test for that unless the patient has fatigue and aches and pains".
Me:
"Like the symptoms I just told you about?".
GP:
"Yes, but that'll be the thyroid, not a vitamin deficiency".
"Are you taking a supplement?"
Me:
"Yes, but I'm concerned that I might need a higher dose but don't want to be taking one if it's unnecessary"
GP:
"Don't worry, you'll be fine".
They did test folate, ferritin and B12 when I asked, and I was within range for all 3, although I feel that the folate and B12 could be improved so I'm supplementing those.
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