Anyone not getting answers?

I was diagnosed with thyrotoxicosis 8 years ago after my doctor was treating me for anxiety for months beforehand. Carbimozole was prescribed after the diagnosis and I took it for six months. In that time I felt wonderful on this medication. I had bags of energy - something I hadn't had for a long time - was out and about with my husband to concerts and shows, again I hadn't done that for a long time. I used to get home from work and fall asleep on the sofa and then could sleep all night. I had no interest in anything, severe palpitations, shaky hands, brain fog and very itchy lower legs which resukted in blisters all over the shins and then a bright red rash, weepy, depressed, and at times felt suicidal I felt so bad. Carbimazole sorted all that out. A few months after being taken off Carbimazole I was back to feeling awful again. GP said my levels were all okay. Now I have the rash again, can hardly stay awake, palpitations and no interest in anything. Apparently my levels are all okay. I showed them to a friend in France and she said if I lived there I would be on medication. What should I do?

[FallingInReverse]

Hi   Hidden ! Welcome to the forum!

There are many people here with similar experiences, and we can definitely help make sense out of things with you.

So we can help you, can you share whatever blood test results you have?

For reference, you might look for any or all of these, which give a compete picture of thyroid health :

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7) D3

If you know the time you took the blood tests, if you fasted, and how long since any meds/hormones that helps to know.

Also, are you on any hormone replacement now, and what other meds or supplements do you take?

Also, have you had any antibody tests? These should be tested once, and they do rule in autoimmune cause if positive results:

1) TRab

2) TSI

3) TPOab

4) TGab

Please let us know your story and we can weigh in.

[pennyannie]

Hello Itsonlysonia :

I too was very well on Carbimazole but prescribe it after being diagnosed with Graves Disease back in 2004 -

I was told Carbimazole was too dangerous a drug to stay on long term and had RAI thyroid ablation the following year - which I deeply regret and been more ill since drinking this toxic substance.

Graves is an auto immune disease for which there is no cure - and which generally only gets diagnosed when the immune system starts attacking the eyes and / or thyroid -

and Carbimazole is an Anti Thyroid drug that simply semi-blocks new daily thyroid hormone production while we wait for the immune system to calm down -

and the thyroid levels to fall back down into range and the thyroid reset itself without the need for any drugs.

It reads as though you may have Graves / Hypo - where the TSH does not respond in the normal manner and your hypothyroidism not acknowledged in a clinical setting -

Can you share your blood test results and ranges - ideally a TSH, Free T3 and Free T4 ?

Have you ever had your thyroid antibodies run -

they probably look like a TPO - TgAB - TRab - TSI - or reading something like a Thyroid / TSH Receptor blocking or stimulating antibody for Graves Disease.

[Hidden in reply to pennyannie]

I have been diagnosed with Garves disease, yes. I did not get a print-out of my last thyroid tests because I was just so fed up being told they were in 'normal' range. I don't know where you live but here in the uk you do not get any medical print-outs unless you request them and even then they take their own sweet time to get them to you.

[pennyannie in reply to Hidden]

I live in the Uk - and you are legally entitled to copies of all your medical records -

register for online access at your primary care provider - just ask the receptionist for the necessary forms -

hospital records take longer to come through - once requested - but all you need should be available at your surgery..

Can you share these results that you have been told would be ' treated in France ' ?

Being ' in the range ' is not optimally medicated and 'normal ' is an opinion not a fact - essential to dose and monitor on T3 and T4 readings and not a TSH reading :

All things Graves Disease - elaine-moore.com

Most recent research papers :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[FallingInReverse in reply to Hidden]

Hi Hidden

See the first part of the reply here:

healthunlocked.com/thyroidu...

It has links/info for how you can get access to your NHS records. There’s a lot more info in the reply, but I’m only pointing you to the patient record links.

Unfortunately, as fed up as we all are, you really need to take control of it all, keep your own blood test results, take an active role in determining and fighting for what you need to feel better. You are feeling around in the dark until you see the specific numbers.