I've just been reading through the various hyperthyroid threads, firstly, thank you to those knowledgeable posters like pennyannie who post on this subject.
I'm a bit confused by the different names for the various antibody tests and want to be sure I haven't missed a test which might indicate Graves?
So in the last 3 months I have had:
Anti thyroglobulin Abs
Anti thyroid peroxidase abs
TSH receptor antibodies
Immunoglobulin A level (I know this is immune rather than thyroid)
None are positive or even a long way into the ranges.
Celiac tests were negative, I suspect I hadn't eaten enough gluten though anyway as mainly I don't eat it as I know it doesn't agree with me. I'm not overly concerned about whether or not I am coeliac at this point.
I've had some great advice here on specific issues re core vitamins etc which I'm following to bring my low levels up.
Private endo is treating as symptomatic sub clinical hyperthyroid on the basis that my multinodular goitre is likely producing hormone. I think this is exactly the case. He's initially prescribed 5mg carbimazole alternate days as a starting point to see the effect.
I'm starting to talk to work about transitioning to a less stressful, part time role as I can't cope currently. Hopefully the carbimazole will help but on top of perimenopausal symptoms I have reached a point where I need to slow down (aged 55).
Based on the results, this doesn't seem to be AI related but I want to check that nothing has been missed as Graves would likely alter the work conversation and what I do going forward.
Thanks
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Taunton & Bristol. He is on the Thyroid UK list and is practically the only one at this end of the country. The wait to see him was likely to be 3 to 4 months but I was lucky enough to get a last minute cancellation.
Sorry yes, I did go and grab your results which certainly don't suggest you need carbimazole... I'd sort out your low Vit D and folate and tweak your HRT which I think I read you are using? (sorry just rushing around and out the door now)
Ah good, sorry I'm late to your story so I went back to your first post where you describe lots of Hypo symptoms and said that HRT helped for 7 weeks, was it then reviewed and altered? Sex hormones do effect thyroid hormones and vice versa but I'm just not picking up any Hyper vibes?
In my haste with my first answer edit to add the other results I wipe off the relevant ones 🙄
Thyroglobulin Antibodies (TgAb) 18 IU/mL (≤ 115)
(I've added them back in to that reply just to try and make the thread easier to read for others)
TRab /TSHRab / T(SH)Rab ~ are all just different ways of writing same thing.
so yes you've had the correct test for graves, and all your antibody results suggest no autoimmune activity going on , therefore a potential cause of your symptoms is 'slightly too high T4/T3 for your personal setpoint' ( even though they are not out of range) and one potential cause would be nodule producing a little bit of thyroid hormone .
i can't see any harm in trying low dose carbimazole (well apart from the risk of side effects on liver of course , but i assume you/ endo have factored this in to your decision),
if a very low dose sends T4/T3 too low for you and you get symptoms of hypo , then you can stop taking it and reconsider what might be cause of symptoms.
p.s . surely it would probably be better to take same dose carbimazole each day ? , carbimazole has a very short action , so your T4/T3 levels will be going up and down daily if you alternate 5mcg / 0 mcg .... 2.5mcg daily would give more even T4/T3 levels.
I'm sorry as I have been 'unavailable for the past few hours and just found your post by chance mentioning my name - I have not received an email - and my Alert button is with a totally erratic function and unreliable - and by the sounds of things - much like your thyroid.
I 'm with Graves post RAI thyroid ablation 2005 and wouldn't recommend anyone drink this toxic substance - and my knowledge limited.
What I would say reading your previous posts is that with no positive antibody readings the area is a ' grey ' one - with the rider that all antibodies tend to wax and wane throughout ones life.
What is evident is that you can't continue doing nothing - and having already stood down from full time employment would like to think you can continue, at least in a part time capacity until such time as you know what medical decisions need to be made, going forward.
Is the goitre stopping your breathing or swallowing - or just unsightly and you'ld like it gone ?
So taking the AT drug - Carbimazole - should hopefully even out these spikes of hyper type symptoms which can be frightening and allow you some peace of mind to enable you to get get back to some level of daily normality - and suggest you split the 5mcg tablet into 2 an take 2.50 mcg daily to dovetail into the daily thyroid hormone production circuit.
If with Graves - this would be the treatment plan for 15-18 months as all the AT drug does is semi -block your own daily thyroid hormone production while we wait for your immune system to calm down.
If with Hashimoto's - the AT drug will likely just take the ' edge off ' the extreme of the hyper type symptoms being tolerated.
The obvious issue is that your T3 and T4 levels may fall too low in the ranges for you to function with you experiencing the equally disabling symptoms of hypothyroidism - which may or may not be more easily ' tolerated and lived with ' in the short term.
I read you are feeling confident in the suggestion of Private Endocrinologist you are seeing - and guessing he is likely the one I would have travelled from Cornwall to see in Taunton had I been well enough back in 2015/16 ?
Thanks pennyannie I imagine it would be the same Endo, he seems to be about the only one around and I was happy to travel the hour to see him and he's happy to follow up by phone.
He seemed very good and I was impressed with his "we don't all fit boxes", my issue is that my TSH has been hanging in at the bottom of the range since 2016 when the goitre first appeared so the view is always that I'm not hyper as I'm in range despite being a walking (slowly obvs 😀) checklist of hyper symptoms.
I've got worse and you are absolutely right that I can't continue to do nothing. My fatigue is getting worse and my heartrate is increasingly erratic and elevated and I'm concerned about permanent damage.
The plan is to try the 5mg alternately for 6 weeks. My GP is on board to retest at 6 weeks including the vitamins that I've been working on. I get the point about the alternate day and I wonder if I am going to see peaks and troughs like this. I think its a suck it and see whether I tolerate it and what happens. If it doesn't help then we keep looking for what is causing my symptoms.
I'm just hanging onto full time work, I'm trying hard not to go off sick but it's clear that I can't continue like this generally, it's not doing my any good. I can't do my job part time though so I either resign/ take early retirement or my preference is to try to find a role I can do part time. I'm public sector though so creating a new role isn't straightforward hence the early discussion.
Well I would think in the public sector you are somewhat ' more protected ' than the private sector - so try and hedge your bets - and get accommodated.
The issue is that not having Hashimoto's antibodies doesn't rule out this AI disease which causes erratic own thyroid production and systematically attacks, disables and destroys the thyroid - causing hyper type spikes symptoms but ultimately results in the patient becoming hypothyroid and needing thyroid hormone replacement.
With Graves - I believe the build / pressure in thyroid hormones is more gradual and there are no ' spikes and troughs ' in symptoms - and read of forum member with a goitre who since the diagnosis of the goitre was found to have developed Graves - and Graves is known to be a stress and anxiety driven AI disease. ?
It is true - we tend to put people into boxes as then it is easier to follow the tried and tested guidelines - and why I think you are fortunate with your choice of a Private consultant.
Thanks 🙏 I'm well protected in the public sector in terms of sick pay with six months full pay. I really don't want to go sick and I don't want to make things worse for my team when things are already difficult. We're in a zero hire environment which makes it tricky as they would need to replace me and then create a p/t role which currently is not permitted, I'm hoping I'm valued sufficiently that there may be a creative solution... if not then I will resign/ take early retirement as I really don't want to keep doing what I do and I'm fortunate that I could stop if it comes to it.
I agree I was fortunate to find the Endo and to be reasonably close to him. He is looking at symptoms and tests as a whole rather than the straight numbers and I am confident in his approach, it's got to be worth a go.
I'm also fortunate that my GP is very helpful and happy to be advised by private consultant. She and I discussed whether, if this turns out to be the answer then did she think it was worth another referral to NHS endo and her view was the same as mine that it isn't worth it and we run the risk of getting stuck in the middle of a difference of opinions which may put the GP in a difficult position. I can afford to continue with the private Endo so will continue with that for now.
I shall contemplate splitting the carbimazole, I absolutely see the point and had the same discussion with the GP, I'm reluctant at this point to go against what he has prescribed
Just coming back to the Hash's/Graves point. I don't think I see the erratic symptoms and swings that Hashi's seems to cause. My TSH has been bottom of the range consistently since 2016 which I think was the first time my thyroid was tested and of course mainly I only have TSH results for the past. That was midway through breast cancer surgery at the point the goitre literally appeared out of nowhere (that was scary!).
It seems to me more like Graves which is what led me to sanity check the antibodies. I was reasonably surprised that the antibodies were negative as Graves did seem to fit. Although recognising that the existence or not of the AB's isn't always definitive.
It does seem like a long time for either Graves or Hashi's to be broadly stable albeit I've got gradually worse 🤔
Whenever I go down the rabbit hole my brain hurts!
So, you might like to read around Graves and the most well rounded of all I found ( 10 years after being diagnosed Graves and too late for me as I had already had RAI thyroid ablation and much more ill than I'd been in all my life ) - is that of Elaine Moore - books and website - elaine-moore.com
Graves is poorly understood and multi organ AI disease - and generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes -
We do now have some research - which is somewhat ' at odds ' with current NHS treatment guidelines :-
Nodules are firmly in the equation with a prominent benign multinodular goitre. That's the current thinking that it is the nodules producing hormone which is causing overstimulation.
I do wonder about Graves, my late father didn't have much in the way of thyroid symptoms but he developed quite bulging eyes late in life (mid 80's).
Yes I believe my Dad had symptoms of Graves after being medically discharged on towards the very end of WW2 -I was born in 1947 and a very different baby to my brother born before the War.
I know now I've been hypothyroid from a child - undiagnosed hypo, undiagnosed dyslexic - ostracised at school for being left handed - and so it went on - hair fell out when the 11 plus came around - and the stress and anxiety I acquired over the years was my normal -
I was attacked in 2004 by a man I employed as my assistant manager and diagnosed Graves 3 months later -
But I never put my own thyroid journey down on paper until I fell into this forum researching low ferritin around 10 years ago.
Moral of the story - you can't diagnose or track anything on just a TSH reading and if with Graves - the TSH is a very unreliable measure of anything.
When the immune system attacks the thyroid there can be an overlap with more than one set of antibodies identified as being present - but if there is a positive for Graves- it's treatment takes precedence as Graves is considered life threatening if not medicated - and the treatment is with an AT drug - as there is no cure for this AI disease - and all the AT drug does is 'buy the patient time ' while we wait for the immune system to calm down again.
At any one time you can have either Blocking or Stimulating Graves antibodies vying for control of the thyroid - causing a roller coaster of both hyper and hypo symptoms - some people will be predominantly with hypo symptoms rather than hyper symptoms - there can also be phases of relative calm, and given enough time the immune system can burn itself out.
Many people seem to have just one ' blip ' and given enough time on the AT drug - the thyroid rests itself without the need for any drugs.
There will undoubtedly be some people who need definitive treatment and a thyroidectomy -
and as for RAI - I believe it should not even be available in what we understand to be a health care setting.
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