Following a long history of hypothyroidism from 2020, that I've posted about previously, I then went hyperthyroid sometime after Jan 2023 and my next annual bloodtest in Jan 2024. Prior to this I'd not had a Trab test on any of my blood tests. In October last year, I was apparently tested and my Trab level was 2.1, this test didn't show on my gp test records. I'm told this is consistent with Graves disease. The endo nurse thinks it was possibly higher than that over the last year, but as I'd been on and was responding to carbimazole and going hypo then the reading may have reduced over that time.
She's been lovely, and explained the options going forward. I'm having another blood test just for thyroid function at the end of next week and she's suggested a further trab test in August.
Rather than be fluctuating between hyper/hypo, I'm considering the radioactive iodine treatment. Has anyone else had it and has it worked OK?
I'm also having an MRI scan to check for TED as I have some issues with double vision. This was initially checked in 2020 when I wasn't given a trab test, but she thinks it's worth doing again as a comparison now I've been diagnosed with Graves.
She's suggested I take selenium supplements too as it's believed this can help with Graves eye symptoms.
Any other suggestions/comments?
Cheers in advance
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Battlecat
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Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
As you’ve had some eye symptoms that may indicate TED, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed.
Preservative free lubricating eye drops are important for any dry eye symptoms, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
People often prefer to get their selenium from natural sources.
Brazil nuts have to have been grown in selenium rich soil to contain any. Then it depends in which area the nuts were grown because the amount of selenium in soil varies. Eastern Amazon and Central Brazil have the highest amounts
The packaging needs to say "Grown in selenium rich soil" and preferably the area and possibly the amount of selenium.
Apparently Sainsburys SO organic brazil nuts contain 50mcg selenium per 30g serving of nuts.
There may be other testing companies that will test selenium, but I haven't looked for them.
A safe dose for supplementing is said to be up to 200mcg. This is a popular selenium supplement which is 100mcg and is a very small tablet with no odour (some selenium supplements can have an unpleasant odour):
So we have found from last October a TRab reading of 2.10 - do you have the range there ?
If positive and over range this is indicative of Graves Disease - an Auto Immune Disease that tends to only get diagnosed when the thyroid and or eyes are involved.
There is no cure for an AI disease and having definitive treatment such as RAI thyroid ablation or a thyroidectomy simply means you will become Primary Hypothyroid which is said to be easier to treat -
but in fact - for the patient - hypothyroidism is much more difficult to treat -
I am with Graves and had RAI thyroid ablation back in 2005 when I knew nothing and deeply regret taking this toxic substance that is now known to be taken up to a lesser extent by other glands and organs in the body and with a known cancer risk to small bowel and breast.
Considering you already have issues with your eyes RAI should not even be considered as it is known to exacerbate any eye issues you may have.
The NHS currently allocate a treatment window of around 15-18 months with an Anti Thyroid drug - such as Carbimazole - which I think I remember you tried before -
so there is an alternative AT drug PTU - Propylthiouracil - if Carbimazole did not suit you.
When the thyroid comes under attack from the immune system several sets of antibodies can be found positive and remember last time we thought you were dealing with Hashimoto's - another AI disease that presents similar to Graves but which is not medicated - however if found - Graves treatment takes precedence as Graves is considered life threatening.
All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
Please read below the most recent research we have :-
Please research yourself as to the treatment options going forward - I know it is a difficult time but you owe it to your ' self ' to understand where you are in all this phase of ill health.
I'm presuming you will now be referred to a specialist ophthalmologist with knowledge of Graves for your eye issues ?
I didn't know you have already had surgery and had a hemi-thyroidectomy - not that it changes what I've written - can I ask the reason please ?
The most rounded of all I researched on Graves Disease is that of Elaine Moore's books and website - web.archive.org/web/2024122...
I've updated my profile with a potted history. I had a hemithyroidectomy in 2013 as I had a large growth that was benign.
I only started carbimazole in Sept and this has worked too well as I've gone hypo over a few mo ths, I'm only on 5mg now till my next blood test on 14th Feb. Other than some dizziness, I've not had side effects that I'm aware off.
I'm not in a rush to have RAI, especially as I seem to be responding to treatment. I tried to get more info on the Trab test result/range without success so far.
So far it's all a bit confusing but I'm ok accepting that it's a slow process for now.
I'm due to have another MRI and opthalmology appt, my double vision is also caused by astigmatism, but can be worse on occasion for no apparent reason and blurry.
I'm go to try and get all the results on paper still.
I would seriously ask for written confirmation of Graves as your symptoms read more like Hashimoto's which is not treated with an AT drug as the T3 and T4 fall back down into range naturally, by themselves.
Looking back at your blood test results - we haven't T3 readings and you are only ' hyper ' when T3 goes over range -
The TSH is a very unreliable measure of anything especially after a medical intervention as your HPT axis - Hypothalamus - Pituitary - Thyroid feedback loop will have been down regulated and why you must be dosed and monitored on T3 and T4 readings and not a TSH.
There is a range for Trab antibodies - 2.10 is likely over range but the fact you were never officially told anything has me questioning things.
TED runs independent of both Graves and Hashimoto's.
Without seeing any T3/T4 results it's difficult to advise but obviously the AT drug needs reducing down -
and since you only have half a thyroid and not taking any T4 Levothyroxine you must be starting to feel symptoms of hypothyroidism -
Some people are offered Block & Replace in such cases whereby the AT drug is prescribed to fully block your own thyroid hormone production BUT a measured dose of T4 is also prescribed so your T3 an T4 do not fall too far through the ranges with you then dealing with symptoms of hypothyroidism.
So you have your appointment next week and the logical next step is to reduce down the Carbimazole - some take 2.50 mcg by chopping the 5mcg in 2 - whilst others just stop - dead the AT drug - and as I wrote previously I don't quite know why you were even placed on the AT drug.
I've confused myself now. Those are TPO results, but still not TRAb results. I've emailed the endocrinology nurse to ask for the TRAb to be tested in the blood test I have due on Friday.
The NHS tests for TPO and TgAB - are for Hashimoto's AI disease -
The NHS tests for Graves are generally written as a TRab a Thyroid Receptor antibody - or a TSH Thyroid Receptor ab - some see a TSI - a Thyroid Stimulating Immunoglobulin antibody -
but I can't see that you ever had Graves - and now with a TSH at 8.63 - you appear very hypothyroid and being ' starved of thyroid hormones ' which is exactly what taking an Anti Thyroid drug does when you shouldn't be taking it.
If you have Graves your TSH would be low suppressed at .001/5 and under the range :
In September 24 your TSH was 0.036 and dipped slightly under the range - but this does not mean anything in itself and your T4 at that time was 13.80 and in the range :
Having had a hemi thyroidectomy back in 2013 and only declared hypothyroid in 2020 and then placed on T4 - Levothroxine - I tend to think any symptoms you were dealing with - prior to taking the AT drug are more likely related to the management of your hypothyroidism.
i've listed all your results below just in case it helps anyone see the wood for the trees :
please let me know if anything is incorrect.
you will need to get clarification of which antibody test the endo nurse was talking about ~ TGab , or TRab ~ if endo nurse is really telling you an in range TGab test is evidence of graves, she needs re training.
and if it really was a TGab test , then graves is not a definite.
You need a TRab test to prove graves...... and if your blood results were going back into range by themselves before you started carbmzl ? ......and given how quick you were then made hypo by carbmzl ...... graves still seems rather unlikely, and it looks like there was probably no need to start carbmzl at all.
Do not even consider having RAI until endocrinology have cleared up the miscommunication.
just noticed something ....it's very odd that you had OVER range fT4 levels at the SAME TIME as over range TSH BEFORE you were started on levo .... (or have i got those ranges / dates wrong ?)
tattybogle and pennyannie Thanks for following all this, I've had a reply to my email. The main part is as follows:
"Result item name - Thyroid receptor Ab, performed on 25/10/2024 11:19
Result available on 12.11.2024 = 2.1
Lab note - 2.1 is positive for graves disease - clinical sensitivity 85% but is 100% specific to that of graves disease . "
In relation to the TSH and Ft4 levels they seem to have been all over the place since I had the hemithyroidectomy, with results in and out of range that haven't been acted on since 2013 when the 2020 results were.
To continue the history
26th Nov 2018
FT4 11.3
TSH 5.14
8th Feb 2017
Ft4 12.2 range 8-18
Tsh 7.53
16th July 2014
Ft4 11.6 Range 8-18
Tsh 8.21
8th Oct 2013
Ft4 10.2 range 8-18
Tsh 9.5
27th August 2013
Ft4 10.2
Tsh 4.95
1st August 2013 - Hemi-thyroidectomy
28th Sept 2012
Ft4 14.5
Tsh 1.64
Not sure if any of that helps, all a bit messy?
There was a gap of 3 years when I hadn't been told I needed testing annually.
Blood test still being done on Friday 14th, not quite sure what being tested, presume Tsh, Ft4 and maybe Ft3.
How were you feeling during this period of ' no thyroid monitoring ' ?
Looking at these results after the hemi-thyroidectomy I would have thought you needed support and thyroid hormone replacement from the outset in August 2013:
Guessing your surgery were waiting for your TSH to reach 10 as per NHS guidelines - before starting treatment with thyroid hormone replacement.
and can only guess there are no NHS guidelines to follow after medical interventions and probably why we need to stay under the endocrinology team at the hospital who may have a greater understanding of how blood tests present after thyroid surgery and allowed to use critical thinking and dose to T3 and T4 blood test levels and not a TSH.
Looking at tattybogle 's very helpful and detailed breakdown in more detail -
July 2020 - TSH - Over range - thyroid signal for help - running low on thyroid hormones.
Next month - August your TSH and T4 are both signalling ' help ' and your body forced itself into overdrive :
October - both TSH and T4 biomarkers still in overdrive - took advice from hospital endo and 50 mcg T4 prescribed :
Feb 21 - TSH over range but T4 in range and so some pressure off your body :
Following year March 22 : TSH and T4 over range and body shouting ' ' help ' :
Next year Jan 23 - TSH in range - but T4 over range :
Next year Feb 24 - TSH under range and T4 over range - T4 reduced to 25mcg T4 :
April 24 - TSH under range and T4 over range so T4 stopped :
July 24 - Private blood test - negative for TPO and TgAB - Hashimoto's but over range results as I read this as your half thyroid trying to compensate and ' blown ' itself into over range readings - hoping someone will do something as it can't maintain itself and now with a TSH at 0.01 - T3 over range 7.50 and T4 over range at 27.20 :
September - TSH under range - T3 and T4 in range : BUT - Carbimazole x 20 mcg daily -an Anti Thyroid drug is prescribed to reduce your T3 and T4 - based on the TSH reading -
October - TSH back in range - no T3 and T4 in range : AT drug x 20 mcg
November - No results but told hypo - AT drug still x 20 mcg
December - No results but told to reduce AT drug to 10 mcg daily :
Jan 2025 - TSH over range - T3 and T4 in range - AT drug reduced to 5 mcg daily :
Please check I've got this time line right as I'm constantly referring back to Tatt's reply to you and just trying to explain in ordinary words my understanding of these blood test results and the consequences of the actions to try and help you understand better what has been going on - and am happy to be put right / set straight if I'm out of line.
It could be that Graves has ' kicked ' in - and which is an immune system disease that generally only gets diagnosed when the thyroid and / or eyes malfunction and whilst Graves is poorly understood and badly treated - it does tend to occur to some due to stress and anxiety.
Graves does not always present with high over range T3 / T4 results - but lower and inverted T3 / T4 readings as the immune system can Block or Stimulate thyroid function - and there are periods of relative ' normality ' and given enough time, can burn itself out :
but I would like a further Graves antibody blood test before going any further down this path towards ablating the rest of your thyroid - and since you already have eye issues - I would speak to your eye specialist and if push came to shove - have the remainder of your thyroid surgically removed. surgery.
hi Battlecat can you check/ add the lab ranges for these ft4 results from 2012 -2018. just wondering if it's a different range (my local lab has used (7.9-14) since 2017/18, from 2012 -2017/18 they used (8-18) , and in 2011 it was (9.5-20)
i have a feeling you might be at the same lab as me , as i've not seen another area in uk that has exactly that range .
but whatever the fT4 level was, i'm pretty disgusted that no one thought to let you know about the high TSH results from 2013/hemithyroidectomy onwards.
and yes , that positive TRab result does confirm graves disease ..
mind you, like pennyannie i'm still curious,,,, your app appears to show a 2.1 TPOab result from 25th Oct , and TRab result is also 2.1 from 25th Oct ?? ... is that just a coincidence or has somebody input a typo somewhere ? .... so i'd still be asking someone to clarify this .at some point .
Yes, I too have questioned the O/P on this antibody TgAB / TRab ? and for once my message actually ended up exactly under the snapshot of the blood test !!
Tattybogle, I've looked and the ranges did change from 8-18 to the current ones in 2017/2018. I also remember my GP stating in 2020 that they wouldn't normally refer unless TSH was over 10.
Just to mess things up more, the hospital test results have now been added to the NHS app and they use different names for the tests!
The November 24 results
TSH 8.71
Free thyroxine Ft4? 9.9
Serum free triiodothyronine Ft3? 5.4
The change in December to 10mg Carbimazole from 20mg was based on the November test results that the consultant accessed when I had my 1st consult with her, that was a phonecall that was meant to have been a videocall.
I changed to 5mg in January once I managed to get the Jan results as I hadn't been able to speak to anyone and the results were still hypo. I'd also asked for advice on here that suggested it was probably a good idea to reduce the dose. The endo nurse did say I'd done the correct thing reducing it.
I've felt ill/tired etc for years including during the years I wasn't monitored. But I was also menopausal and not able to take HRT and in a very stressful full-time job. So symptoms were mainly put down to those factors.
have to say , your follow up 'care' since hemithyroidectomy has been appalling.
if a GP was aware you had any symptoms that could be hypothyroid in October 2013 , you could, and should have, been put on levothyroxine at that point. ( on todays guidelines anyway ....due to 2 consecutive over range TSH results since hemithyroidectomy)
and at any point since then, if you were seeing a GP for any symptoms that could potentially be hypothyroid, they should have noticed your continuously over range TSH levels and discussed starting levo.
ok, the current guidelines saying "GP's can consider levo if 2 x TSH over range + symptoms of hypo" only came out in ...2019... before that i don't think there were any specific guidelines for GP 's re. diagnosing / treating hypothyroidism ..... but that is no excuse ....eg. i was offered levo due to TSH 5.7 then 6.8 ( T4 still within range) in 2003, due to symptoms of hypo.
My gp was still reluctant to put me on Levothyroxine in 2020, it was only when she sent the results to endocrinology that they said to start it. But I wasn't referred to them at any point till last year when I said I wasn't happy with what was happening and I was then referred.
well ....i can understand why GP needed to ask endo before offering levo in 2020 ,, because the T4 was over range (at same time as TSH over range), which is not typical of hypothyroidism , and needed further investigation/ opinion,
you'd expect T4 to be either in range , or below range in hypothroidism.
and since levo is T4, then adding levo is expected to raise T4 ~ but since T4 was already showing as too high., gp would not be sure levo was a safe approach.
I think the guidelines and blood tests in primary care are totally inadequate to monitor and treat hypothyroidism -
I thought especially after a medical intervention - surgery or RAI thyroid ablation patients were only discharged back out into primary care once they were stable and settled on a dose of T4 - Levothyroxine.
However - we do see posts from people having had a hemi who are not immediately put on T4 - thyroid hormone replacement -
I find this questionable as it must inevitably put pressure on that half of the thyroid gland left in place, with the patient somewhat confused as to what happens next, trying to make do, struggling to get by - and ultimately with further health issues as the body has been unnecessarily further compromised.
yes , especially after a hemi, i think it's lousy that battlecats continuously raised TSH wasn't actively followed up by GP/ endocrinology .
i mean, I can sort of understand why i had to wait 4 yrs for anyone to notice mine , as there was no obvious reason for my GP's to suspect a thyroid problem , and apart from a puffy face , i didn't look typically hypo. ( but it should still have been thought about earlier , as my problems started a couple of months after giving birth , so post partum thyroiditis should have been considered and checked for, instead of just putting my symptoms down to post natal depression).
But when they know they have just surgically removed half of it , medical professionals should surely know it needs keeping a close eye on for at least the first few months , and GP's should know to keep an ear out for patient mentioning any symptoms that could be hypo.
certainly ,some people do just fine with only half a thyroid , but plenty of others don't and will need levo... it's not uncommon, so they should be actively looking for it, not waiting until they are pushed by a struggling patient who has already gone downhill.
Today's blood test was pretty much the same as January, I've only discussed them verbally.
TSH 8.4
TRAb requested on my behalf to try and clear up concerns/confusion. It can take a couple of weeks to get results.
FT4 I forgot to write it down but was told was similar to Jan.
Discussed options and history since 2013 and also the trajectory my levels were going already when I was put on carbimazole in September.
The decision made, which I'm totally happy with, is that I come of carbimazole and don't take anything for 2 months. I agreed that this will hopefully give everything time to reset and give a better picture of what is actually happening.
Blood test in 2 months and look at options depending on results.
We did discuss a bit what might have caused the flip to hyper/graves and the fact I was pretty poorly with covid in Dec 2022 could possibly be a factor, or just the fact I'd been untreated for hypothyroidism for so long too.
Anyway, will update/create new post in about 2 months time and hope for a slightly clearer picture.
Thanks for your advice and suggestions. It's been much appreciated.
Thanks for the update - if you can I think it will be a good idea to you get your own Advanced Full Thyroid Blood test run to include your TSH Free T3 and FreeT4 along with inflammation, antibodies, and ferritin, folate, B12 and vitamin D.
When metabolism runs faster, or slower, than your ' normal , or artificially blocked by an Anti Thyroid drug - the body struggles to extract key nutrients through your food no matter how well and clean you eat - and low levels of core strength vitamins and minerals will compromise your health further -
So its around 10/11 biomarkers and the basic all important facts we all run to be able to work up from to be able to start to reclaim back our health and well being.
So. its an early morning by around 9.00 am fasting blood draw - and if taking supplements you are testing stop supplements around a week before so we measure what your body is holding, rather than that just ingested and also stop anything containing biotin as it can 'mess' with some Laboratory assay measures.
Best arranged for the beginning of the week so your bloods aren't stuck in a post or Lab over the weekend - and if posted by Tuesday, possible Wednesday you should have the results back by the weekend.
I presume now you are on no T4 - thyroid hormone replacement and no Anti Thyroid drug :
I use Medichecks once a year for my body's MOT - and arrange a nurse home visit to come and take the blood draw at my home - it's a little more expensive, but I live in a rural area and getting to any early morning appointment is difficult for me -
I think between them Medichecks and Blue Horizon cover the UK with this nurse home visit option at a surcharge when you come to complete your purchase.
Thyroid Uk - the charity who supports this forum have a whole page of Private companies to choose from as well as, I think, sometimes, discount codes - thyroiduk.org
I'm so glad you had a good appointment and felt heard and have a plan going forward to work towards - and just so sorry if my replies seem to have been a bit negative.
I have previously had a Blue Horizon test on 8th July last year. I used those details to apply pressure to my gp to get me referred to endocrinology instead of leaving me in limbo another 3 months.
I think those results were on a previous post. But I've attached a photo.
I'm pretty sure today's test includes T3 again but I won't know till I get the results on the app or in the letter that's being sent.
Yes, but a lot has changed, in terms of your health since last July :
I can't see a vitamin D - and it looks as though your B12 and folate need supplementing - though the results are very faint -
your inflammation is high, so your ferritin reading may not be true as inflammation tends to falsely inflate ferritin readings.
Just for reference I now need to maintain my ferritin at around 100 - folate around 20 - active B12 around 125 ( serum B12 500++ ) and vitamin D at around 125.
Your choice obviously but the NHS may or may not even run the T3 which is ' the ' most important reading and certainly will not run the above necessary co-factors.
I just run the full thyroid test yearly as I am stable and well and haven't had anything change in my health regime for several years now .
I did think the folate was on the low side, I always take vit D from September onwards daily. I'll add folic acid and b12 I think.
I'll have another test done in next month probably. I'll have to pay the extra for the phlebotomy, a friend used the vacutainer kit last time as I failed miserably doing the self skin prick tests. I clot too quickly!
Yes I pay for a nurse to come and take my blood as at least I then feel confident in the results.
I still need to need to supplement all -all year round - but now at maintenance strength doses as opposed to back in 2017 when very poorly and needing loading doses of these co-factors which were compounding further my health issues.
Once with current results forum members can recommend brand and dose levels that are known to actually work and improve levels, rather than just deplete your bank balance further.
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