overactive thyroid but no Graves’ disease

[Lisakate83]

Hi all,

I’m so confused…

I was Diagnosed as sub clinical hyperthyroidism December 2022 then in may 2023 hyperthyroidism. Negative for Graves’ disease. Started carbimazole in July 2023 on 20mg per day, gradually reduced down to 5mg every other day and then stopped in February 2024.

Consultant said it was probably caused by a viral infection so with medication it should fix it.

I had a blood test at work last week as we get free health checks, they only test tsh which has come back at 0.01 so likely I will go overactive again. I have another blood test next week to check all levels.

I just wondered if there are others that have similar issues with going overactive but do not have Graves’ disease?

I would like to find out the root cause of this but feel lost.

Thank you xx

[PurpleNails Administrator]

Which antibodies have been tested?

Ideally you need all thyroid antibodies tested.

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies).

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies)

TSI (Thyroid-Stimulating Immunoglobulin)

If negative for antibodies thyroid should be scanned for nodules & or uptake scan to look a function.

Antithyroid treatment should be based on FT4 & FT3. TSH is not reliable, can be low for many reasons - it’s not a reliable measure.

[Lisakate83 in reply to PurpleNails]

Thank you for your reply.

I had all the antibodies tested and was negative.

I had an ultrasound on my thyroid and it only showed a couple of tiny nodules and they said that wouldn’t be the cause.

I’m having another test next week to check t3 & t4.

I would just like to find the cause so I know the best way to treat. I’m feeling very frustrated as I did everything to help myself get better, balanced diet, no alcohol etc.

I’m going to ask to have antibodies tested again as my sister has Graves’ disease.

[SlowDragon Administrator]

also get vitamin D, folate, ferritin and B12 levels tested

[Lisakate83 in reply to SlowDragon]

Thank you, had them checked and all okay

[SlowDragon Administrator in reply to Lisakate83]

Can you add actual results and ranges

[Marz]

There are research papers indicating thyroid issues post C19 j@b ??

[SmallBlueThing in reply to Marz]

And also post-infection, including C-19, whether jabbed or not.

[pennyannie]

Hello Lisakate and welcome to the forum :

There is a genetic pre-disposition with Graves and considering your sister is diagnosed obviously it seems logical and you have been treated as though with Graves Disease.

You have had a scan and nodules were found but considered not the cause of your ill health -and there is no trace of any antibody in your bloods - no TPO - TgAB - TSI - TRab - or TSH Thyroid Receptor Antibodies :

So we are likely looking at an Immune system reaction / malfunction - with something having triggered your immune system to turn and attack your body rather than defend it -

Quite what and why this has happened to you is the 64 million $ question and generally speaking once we know which antibody was found responsible for this phase of hyperthyroidism we can offer further more detailed information regarding the cause.

Hopefully you now feel more comfortable as the AT drug will be semi-blocking your own new daily thyroid hormone production, slowing down your metabolism, and with your T3 and T4 falling back down into range with your symptoms relieved.

Please do not fixate on the TSH at 0.01 -

but on where your Free T3 and Free T4 readings sit within the ranges with you being neither hyper nor hypo - and metabolising -

the TSH is a very unreliable measure of anything once drugs have been used and can be very slow to return to normal function, if it ever does.

I'm sorry you are going through this and not knowing of your sister's situation just going to offer some research papers that maybe of help to one or both of you :

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

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

All things Graves and AI - elaine-moore.com

[Apodemus]

Hello! I became hyperthyroid but tested negative for Graves in Jan 24 but sadly also have TED which is a bigger issue for me. I felt sure it was a virus had headache and vomiting and felt really low, also had conjunctivitis which was the start of TED. So yes I know how you feel...somewhat perplexed as to what happens next. I am on 5mg Carbmizole but really need to try 2.5mg but nervous as one of my eyes has a real issue.

[Bina-Jane]

I had unstable graves for years. No antibodies detected. I believe mine was caused by chronic stress. I ended up having RAI as I kept relapsing. In hindsight I firmly believe my stressful job exacerbated my condition (if not actually causing it). I read in a book called "accidentally overweight" written by Dr Libby Weaver that 95% of her patients with Graves became well after changing their jobs. Sadly for me it was too late to prove her theory as I had already had RAI but I did leave work and I feel much less stressed. Unfortunately I am now hypothyroid and struggling to normalize my levels but it probably saved my life.

[pennyannie in reply to Bina-Jane]

Stress and anxiety are common triggers for Graves and looking back I can see how I came to be diagnosed though deeply regret having RAI thyroid ablation in 2005 as I have been much more unwell since with longer term consequences of drinking this toxic substance and T4 montherapy having been refused both T3 and Natural Desicated Thyroid through my surgery and hospital in 2018.

I now self medicate with full spectrum thyroid hormone replacement and am much improved Doing It Myself by running the appropriate T3 and T4 blood tests and optimising my vitamins and minerals.

elaine-moore.com