Those that have followed …. I received a letter from my endo regarding having my little butterfly burnt out.
TRAb antibodies still remain positive.
TRAb 6.8
Free T3 4.8. (3.1-6.8)
Free T4 11.7 (10.0-22.0)
TSH 12.0 (0.30-4.50)
He is arranging to increase my Levo from 100 mg to 125 mg and arranging a further face to face with me with the aim of changing my mind to a more permanent solution for my thyroid.
It appears he’s just not listening to me with my request of staying on the medication? Is there anything with my test results above that warrant this ? Bearing in mind I had just changed a tyre on the car and did not prepare for that blood test as it came out of the blue when I was at my last face to face.
Thanks guys.
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Billyboy2u
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Are you also on carbimazole? How much? Block and replace regimen.
Currently TSH too high & FT4 & FT3 too low.
You likely have hypothyroid symptoms. Especially if the last test was later in day when TSH lowers and FT4 & FT3 rises. Was levo dose taken before draw?
Repeat test 6 weeks after changed dose.
If you are well on block & replace you can’t be compelled to undergo RAI although doctors like to imply you don’t have a choice but to follow their preferred treatment.
Yes TSh is very high and fT4 is very low , so that does indicate you needed a dose increase of Levo. Re. the 'unexpected' blood test and changing the tyre previous .. neither of these could have had such a large effect on your TSH as to take it all the way up to 12... TSH is mostly produced at night ., so the days TSH result is pretty much decided before you even get out of bed (OK , it will be highest at 9 am and lowest at about 1-2 pm then start to rise again... but it doesn't really vary by all that much between 8 am /afternoon ... )
Changing the tyre will have had no effect at all on TSH Level , and may or may not have had much on fT3 , and much less, if any, on fT4 Level .
if it was an unexpected test then i assume you took that mornings Levo dose closer than 24 hrs to the test .. but if you hadn't, then the fT4 would have been even lower .. showing even more clearly that you needed a Levo dose increase ... so the dose increase is definitely correct .
They will continue to try very hard to persuade to you to have a permanent solution .. they are under immense pressure to get through their lists and make room for new patients.. and of course , once you accept RAI , you are effectively 'off their books' .
While you insist on staying on B&R they have to keep monitoring you regularly, and they don't want to,
But if you feel well on B&R, don't do anything permanent unless YOU want to.
(i think ?) The TRab antibodies still being high does have some bearing on a decision to remain on antithyroid drugs/wait for remission / opt for permanent solution ... because TRab levels remaining high for a long time despite antithyroid drugs can (i think?) indicate that the graves is less likely to go into remission. but i don't think there is necessarily anything about TRab remaining high that means you should choose to have RAI /thyroidectomy if you are doing well on B&R and don't want to risk a permanent solution yet.
Thanks for the info. When I say I’m I’ll I mean I feel washed out for a few days. Like I’ve overdone it that’s all. Im not in any sort of pain or anything. Just feel knackered. Also in a six month period it’s happened only twice for two days each time too. So I’m sure you can see why I think such drastic action is still very early days. ?
. yes i agree with you .. it's a big risk to do anything so drastic as RAI or thyroidectomy at this point ...life afterwards on levo has an uncertain outcome Some people are fine of course ..but a significant minority are not . The endocrinologist's don't seem to be being very honest with people about this part of the 'risk' conversation . they seem to be telling hyper patients that everyone is fine on levo, when they know damn well that some people go on to have significant difficulties on Levo which endocrinologists then seem either unable or unwilling to try and fix (or even believe ).
I'd feel a lot safer discussing T.E.D risk with someone who i thought was being full honest about ALL of the risks involved with RAI/ thyroidectomy .
I have autoimmune hypothyroidism and am on Levo . EVERY time i over exert myself , i'm utterly wiped out , in mild pain everywhere and pretty much brain dead for a couple of days afterwards. I haven't been able to work two 'full time' days consecutively for years . ... i'd happily swap that for a feeling crap for a few days a couple of times in 6 months .
and without wanting to be too flippant about something very serious which i don't know much about ..... in all honesty i would probably be prepared to swap bulging eyes for regaining the ability of my body to function/work properly . If you can function properly most of the time at the moment , don't take that luxury for granted .
Yes Thyroid Eye Disease is a risk you need to take into account in your decision making process ..... and i know that aside from the physical/vision issues involved, the psychological effects of looking different are very difficult to deal with, and the corrective surgery sounds grim...... so i'm not surprised it is a big fear for you .. it would be for me too if i was in your position .... but you should surely be allowed time to do your own thorough research about how high the TED risk is, and how far thyroidectomy could lower/ remove that risk, compared to waiting it out as you are and seeing if your TRab levels go down anyway .
Like pennyannie says , i think Hyperthyroidism and TED can actually run independent courses anyway.
Thanks for that. I’m grateful of such informative people who have gone through or experiencing what I’m going through. Big thanks.
I somewhat wonder why the RAI is being pushed as at present I’m on levo and after the RAI I’d still be on levo ? Just seems odd to change something that may end up with me even in a worse position.
I can say that nothing has changed in my mind towards any permanent treatment especially as I say I’m just washed out for a few days over a few month. In fact in the whole time, since 2018 I’ve felt that way only about 8 or 9 times. Obviously the very first time I didn’t know what was going on and was I’ll for a week or two before being diagnosed. But after that I know the signs now so know what to expect so try and relax just before I start to feel a little washed out. Thanks again. 👍
There is a simple explanation for the pushing of RAI. In the NHS thyroid treatment guidelines, if you look up the 'evidence used to support this recommendation' section. it says something along the lines of "RAI is the preferred treatment option" The key is the use of the word 'preferred' in this context.
It means 'preferred by the NHS because it is very effective , very simple and very quick to administer, and therefore very economic compared to the other options of surgery or long term monitoring of antithyroid drugs.. and it avoids any risk associated with surgery and it pretty much guarantees no recurrence of hyperthyroidism.'
So it is preferred by the NHS for a combination of all of these factors.
But your priorities and risk assessment and 'cost' assessment are different to theirs , .. individuals risks/benefits /preferences are not part of making recommendation for national NHS policies...... and economic considerations for running the NHS are not part of deciding what is preferable for you individually .
The 'preferred' option for the NHS does not mean it's always 'preferred' by individuals.
you are assessing the risks to you personally :
Risk of not being made fully well by levo alone after RAI / surgery , a risk that the guidelines don't acknowledge to be a problem.
Risk of 'other' effects of RAI , that the guidelines don't acknowledge to be a problem.
Risks of getting TED ..... and you want time to look at the evidence properly in relation to risk of eye disease for all three options .
Not 100% sure of my facts here , but i think RAI can sometimes make existing TED worse, i think it's maybe because RAI can briefly increase your TRab levels before they slowly goes down, so think this is why they don't or shouldn't give RAI if TED is already an issue .
you 're on levo now, yes , but your whole B & R treatment costs them more because you are under a consultant in secondary care. They have to do more frequent testing and give you repeat appointments with endocrinologists. Once they have given you RAI or surgery... your long term cost to them would be under only a much cheaper GP with one annual blood test once you were stable on a dose of levo and only about £15 a year in levo.. So cost wise, for them it's a no brainer to get rid of your thyroid.Your relatively expensive ,ongoing, potentially variable, problem is 'solved', and with only very minimal ongoing cost for monitoring..... which is fine if you feel well on levo ..and tough shit if you don't .
If you are relatively well and happy on the anti thyroid drug and the Block and Replace treatment please stay put.
I don't quite understand your endo's suggesting that the Block and Replace is trying to retrain your thyroid's hormone production:
AT drugs simply block your own thyroid hormone production :
Adding back in some T4 - Levothyroxine is so to prevent your T3 and T4 levels falling too far down the range and into the realms of hypothyroidism which is equally debilitating , if not worse, than hyperthyroidism.
It's all a question of degree and ultimately the Graves AI disease will burn itself out.
There are 2 sets of Graves antibodies -
the TSI one stimulates your thyroid to produce excess hormones and your T3 and T4 levels go very high over range :
the TRab ones block thyroid receptors so you T3 and T4 will go vey low :
so it's a bit like a tug or war which antibody takes control at any one time - and not let's forget there is a middle ground where they off set each other with you feeling relatively ok.
Play for time if you are not too incapacitated.
Your metabolism is being hung out to dry and you very likely will have trouble extracting essential nutrients from your food and it's imperative you keep your ferritin, folate, B12 ad vitamin D at good optimal levels to keep your core strength strong and solid through this first phase of this AI disease.
Thanks penny Annie. Nice to hear from you again. I’m very happy the way I’ve been since I last spoke to my endo. I’ve been a little unwell twice in that time, and when I say unwell I mean, being exhausted at the end of the day That’s all nothing serious at all.
I also felt somewhat scared after speaking to the endo this time as he mentioned “You know it could start attacking your eyes”. He knew that was my main fear as I told him on a previous meeting. I felt that was either in necessarily added to give me that push to have my thyroid removed.
That’s why I asked if there was anything un usual about my last bloods.
I did read the info above last time around but it’s always welcome for recap purposes. Thanks again for your help. I do intend to hold out and avoid losing my thyroid. Thank You.
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