Controlled thyroid function, raised antibodies - advice please

[raymond15]

Diagnosed 2 yrs ago with thyroiditis and thyrotoxicosis. On carbimazole, dose reduced to now 5mg every other day and hormones normal for last 9 + months.

TPO was raised (300 ) now 73. However first ever thyroglobulin independent test this week is 782.

I have fatigue, anxiety, waking 2/3 times a night, itchy scalp and back, dry eyes, cold extremities, thick throat (worse some days than others).

I would be interested in hearing please from anyone else whose thyroid function is controlled yet antibodies are abnormal and what they have tried, what prognosis may be.

Thanks

[greygoose]

Those are Hashi's antibodies, not Grave's. Carbi is the treatment for Grave's. Did you have your TRAB or TSI antibodies tested?

[raymond15 in reply to greygoose]

Thanks for your reply.

No I have not had TRAB or TSI antibodies tested. I am seeing my GP in next couple of weeks I could discuss but given consultants reluctance to test antibodies since January 2018 I don't hold up much hope.....

[greygoose in reply to raymond15]

Then get it tested yourself because you need to know if you really have Grave's, or do you actually have Hashi's. Because if you don't have Grave's, they've been giving you the wrong treatment all this time.

The level of your TPO antibodies is totally irrelevant to the problem. They aren't causing your symptoms. But you need to know what is.

[raymond15 in reply to greygoose]

Thanks - I will get the tests.

[greygoose in reply to raymond15]

You'll find a Grave's antibody test here:

medichecks.com/thyroid-func...

[Alexkjones in reply to greygoose]

Raymond. I had a similar question earlier this week that grey goose also discussed with me. I know I have graves but don’t know re Hashi. I’m getting more tests done too hopefully. Alex

[Zelda123]

I had the exact same thing happen to me.

I got autoimmune hives with mine. The carb drug didn’t work and btw if you are getting sore throats with it you need to see your GP as you may be intolerant to it.

I had to allow my thyroid to burn out. It took over a year and a half. Then another 6-8 months before I could go on thyroxine. Since all this I have suffered with allergies, fatigue, pain and anxiety.

So much so that I’m having to see a chronic fatigue specialist next month. The pain burns throughout my body now and I think I have fibromyalgia. Il see when I see the specialist.

My weight has gone up. My hair and skin is dry. My periods are heavy and painful. It’s all gone down hill. I’m fighting it.. I am going under active again now which is why my periods etc have got worse.

My mental health has worsened because of it all..

I was told it was graves at first as they found the antibodies but then was told it was autoimmune thyroiditis and my thyroid had dumped a load of thyroxine into my blood.

Get to the GP about your throat while on that tablet.

[ling in reply to Zelda123]

Zelda, any idea which antibodies were tested for to confirm the Graves?

[Zelda123 in reply to ling]

The ones for graves and autoimmune thyroiditis. I have both antibodies it’s funny as one of my aunties has Graves’ disease and the others autoimmune thyroiditis. The one with graves has had radio active iodine. The others when the same thing happened had the same treatment that I had.

My grave antibodies were about 10 but the others were sky high.

I had it explained to me and shown on a computer as I have three different ENT doctors one a private thyroid specialist. That carbon drug is horrible. There’s another drug PTU that is more expensive that blocks the thyroid hormone but it’s better not having any and just letting it burn out

[ling in reply to Zelda123]

Thanks Zelda.

When u say u let your thyroid burn itself out, how did u do that?

[Zelda123 in reply to ling]

Under the eye of professional thyroid specialists at the hospital, they took me off thyroid blocking drugs and kept an eye on my levels every 3 months. It dropped on its own.. the only thing that took a while to show my thyroid was under active was my TSH my T4 was under active.. I was put on 50mg and I’ve been on for just over a year and it’s going under active again. My thyroid is 6 and my TSH is high. Apparently the dr said under active is 4 so I just want my thyroxine upped.

[ling in reply to Zelda123]

So the Graves and autoimmune thyroiditis kinda like cancelled each other out.

Any idea what your antibodies levels are currently?

[Zelda123 in reply to ling]

No I don’t think it cancelled each other one lot of antibodies were more prolific that the other.. my thyroid dumped the thyroxine in my blood. It wasn’t Graves that caused it despite me having both antibodies

[ling in reply to Zelda123]

No, cancelled is the wrong word to use here. Was reading another thread earlier about those with both Graves and Hashimoto’s antibodies. Someone was saying the Hashimoto's usually eventually ends up taking out the Graves.

[ling in reply to Zelda123]

Just read your latest post Zelda. Sorry that u are having such a hard time ...

[pennyannie in reply to Zelda123]

Hey there Zelda

I'm reading your post from some 5 months ago - can you just confirm that you have had Radioactive Iodine treatment for Graves - I have had this treatment and am now living with Graves, thyroid eye disease, hypothyroidism and dealing with the long term consequences of drinking the RAI - and no doctor will help or advise on my symptoms.

I've now resorted to self medication and buying my own thyroid hormone replacements and am getting my life back as best as I can.

Thank you

[ling]

Hi Raymond. What's the range for the Thyroglobulin test? Is your result high? If it is, I guess it's something you should try to find out more about later.

But yes, first, u should confirm if u have Graves. Test for TraB antibodies.

You might find these sites useful -

Thyroiditis

thyroid.org/thyroiditis/

Thyroglobulin

labtestsonline.org/tests/th...