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Autoimmune disease

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Does negative thyroid antibodies = autoimmune disease?

8 replies

Picklesandpies · 19/07/2017 17:16

Hi,

I was diagnosed with hyperthyroidism three years ago which resulted in me having my thyroid removed in the end.

My question is this - I had negative thyroid antibodies when I was diagnosed so is that still considered an autoimmune disease or not?

Feel a bit silly asking this three years hence but nevermind!

Thanks x

OP posts:
Pleasemrstweedie · 20/07/2017 13:22

You were negative for the antibodies that were tested. The NHS is quite poor at testing all of them, which can give a mistaken impression.

TSI and TRAB for Graves

TPO and TgAB for Hashimotos.

RubyRoseRing · 20/07/2017 15:10

What it really means is either! You might have an AI cause that's not been identified, or your thyroiditis ha another non-AI cause. My son has this, underactive with no antibodies. Treatment is the same. It was a surprise as strong family hx and l have several AI conditions including Hashimoto's.

Picklesandpies · 20/07/2017 15:41

Thanks for the replies. I wish I had known this at the time. Silly question but I'm guessing it's too late to check now I don't have a thyroid?!

OP posts:
RubyRoseRing · 20/07/2017 18:40

I don't know. I imagine if you are producing attacking antibodies (can't think of a more scientific description!) then you will still have them, just in your case there wouldn't be a thyroid for them to attack. But if they are thyroid-specific then they won't have a purpose, so will just shrivel up and die. Or whatever unwanted antibodies do. I hope someone else will be along soon.

RubyRoseRing · 20/07/2017 18:48

And they are thyroid-specific antibodies so that answers your question probably.

Picklesandpies · 20/07/2017 21:14

Thanks for your reply Ruby. It certainly is complicated - I must try to find out what I was tested for specifically.

OP posts:
Lovedlost · 07/09/2017 20:27

Gah.
I had my thyroid removed after 3 years of 'probably Graves'.
I was overactive following pregnancy. It didn't correct itself, and I was on Carbimazole the whole time. They were concerned about liver damage, but my liver results were consistently stable. I had NO Graves symptoms, except overactive thyroid.
I asked for a definitive diagnosis, but they just pushed for surgery. I trusted them, stupidly.
Following surgery they totally messed up my dosage of Thyroxine. 25mcg! I was unable to function for months.
In the end I ordered my own Thyroxine from overseas, had crazy histamine reactions, and eventually found my own NDT from Thailand as it is not prescribed in UK.
I saw an excellent allergy specialist who tested me for Graves. No antibodies, so no Graves. I managed to figure out my dosage of NDT, along with 50mcg Thyroxine. I'm generally OK now, and my GP supports my choice of meds, but nobody is willing to explain why I have not gained weight, and why my heart rate is still over 100bpm at all times. I am not over medicated. It's a mystery!
I had a 24hr heart monitor this week, so hopefully I can get my beta blockers reinstated.
All I can say is that endocrinologists generally use guesswork. There are clearly more to thyroid disorders than Graves and Hashis.
I'm still tired a lot, and often my sleep is terrible. The GP keeps offering antidepressants, which do not help at all. I'm often anxious, but they won't treat the anxiety!
I'm as confused as you are, and this is despite reading as many medical papers as possible. I personally believe that mine was a neurological cause (mast cell activation disorder), and I keep antihistamines to hand in case of weird symptoms. Without my beta blockers, I can't manage it another way.
Wishing you better luck!

Bamboogie86 · 25/09/2017 13:43

@picklesandpies sorry to hear of your ordeal. I've also had a thyroidectomy too but for hypothyroidism and goitre with pre cancer. My thyroid antibodies were also negative. However, my endocrinologist and gp both told me it is autoimmune. Since my surgery I have been diagnosed with 2 other autoimmune disorders linked to thyroid disease. I think the blood tests can be so vague at times. Especially now if your thyroid is gone it will be difficult to assess it accurately. Good luck x

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