hi, I was put on ptu about 6 weeks ago after my first hospital endo apt. 50mg twice a day. I’ve just been for thyroid bloods T4 (whenever I ask for my thyroid blood forms from my gp receptionist I get given different aspects it’s never the full range). So originally it was 34 (normal being 12-22) then I tried carb but came out in a rash so had to stop it. It fell to 12 whilst on that. As I waited for my endo apt it crept back up each month by 2. This latest one is the first time it fell (from 18 to 16) so the ptu must be working. However my anxiety is telling me otherwise. It’s so bad. I know it’s a tough one with anxiety, maybe the graves brought it back and now even tho ptu must be working I’m left with struggling with it I don’t know. Plasma tsh was normal. Ferritin remains higher than normal range. Thyr rec ab wasn’t tested but was abnormal in April. Thyroid peroxidase ab conc was also high abnormal in April.
Do I need to get all these tested again before my 2nd endo appt next weds? To get the full picture? I’ve also noticed the feeling hot seems to be returning. I’ll find out the results of my thyroid ink/dye test next week too but wanted to ask for an ultrasound as well. Sorry for the essay
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The lack of any fT3 results means we only have part of the picture . if you have the fT3 result from before you started any carbimazole it would help.
We know you have positive TRab (but obviously we don't know which sort of TRab they are ~ could be stimulating or blocking or neutral , or a mixture )
We know you have positive TPOab which are present in about 80% of Graves cases and about 95% of Hashimoto's, so that is of limited help in deciding what is going on.
Your fT4 levels were not over range when NHS endo started PTU, so its a little surprising they prescribed it at that point , but they were rising steadily month on month , so presumably that plus your previous history and symptoms , plus the positive TRab , is why they chose to put you on it even though fT4 was well within range. (Carbi / PTU wouldn't normally be prescribed unless fT4 and /or fT3 were over-range)
? nodules ...? producing T4/T3 ... an uptake scan would answer this question , it sounds like you've just had one done , but not sure.
another ultrasound ... i'm not sure if this would add anything or not as i don't know much about thyroid scans.
Thanks so much, I’m useless at this 🤦♀️ The only ft3 result I can see is from Jan and was within range (3.1-6.8) mine was 4.3. I’ve taken propranolol for about 5 years I think, 40mg once per day.
What’s se thyroid peroxidase ab conc as that seems to be, out of all the results, the most out of range if you know what I mean? Normal is under 34 mine was 119 in Nov and 84 in April.
I think he put me on ptu because the t4 was steadily rising again even though it had plummeted due to the carbimazole which I had to stop.
What do you think are the most important things I need to say/ask for at the review next week? Thanks again
What’s se thyroid peroxidase ab conc as that seems to be, out of all the results, the most out of range if you know what I mean? Normal is under 34 mine was 119 in Nov and 84 in April.
So TPOab (thyroid peroxidase antibodies)
These are the antibodies that show up as positive in hashimoto's , but a lot of graves patients also have them.
Their level is not actually all that high , or all that significant. It's clearly positive , no question about that , but you will see hashi's patients who have TPOab of several hundred, or even several thousand. So even though 117 looks a lot over range, it's not a massively high level for TPOab
TPOab are basically an indication that the thyroid has been damaged by the immune system.
The more significant result , even though the actual numbers look small, is the TRab result .This is what confirms you have some of the other kind of antibodies that actually 'do' something. and your result of 2 is a clear positive even though not very high ....TRab result do not tent to ever be 'very' high ... ie. i've not seen a positive TRab of over about 3 ish in anyone on here for a long while ~ even in graves patients with extremely high T4/T3.
understanding TRab :
Stimulating TRab ~ these act on the thyroid just like TSH does, and they ask it to make more T4/T3 ... they are what cause the very high T4/T3 levels of graves.
Blocking TRab ~ these block TSH from acting on the thyroid.. meaning the thyroid is not asked to make more T4/T3 . and these are responsible for low T4/T3 in an unusual from of hypothyroidism .
Neutral TRab ~ don't do much.
So. we know you have some TRab .. but not which sort .. the TRab test counts all of them together .
There is a test that just counts the Stimulating one' s ... and that would be interesting to have done it's caled TSI ( Thyroid Stimulating Immunoglobulin) i'd be asking endo to do that ... just to satisfy curiosity if nothing else...
(unfortunately there isn't a test that just measures the blocking ones unless you have a friend in a thyroid research lab)
knowing the TSI result wouldn't change your immediate treatment though , (they can only treat what is happening 'now' by using PTU to lower T4/T3 if they are too high .. or by using Levo to raise T4/T3 if they are too low)
finding out what the dye (uptake?) scan shows will be interesting . get as many details written down as you can so you can come back here and fill us in .
Sorry im waffling now and i don't think i've added anything very useful re. to what to do next ...the fact is i'm not sure ... your case is ....erm 'interesting'
i'm sure you'd rather not be so quite so 'interesting'
you need to find out if you have any 'hot' thyroid nodules (nodules that are producing T4/T3 , independent of TSH stimulation) . the scan they did should hopefully let you know this.
Not all nodules do this ..thyroid nodules are extremely common and most of them do nothing much at all .
knowing this will affect decisions going forward. ,because TRab can go away (remission) so you could be ok when you come off PTU if they have all gone ...... but hot nodules won't go away. so without ptu to slow them down they would still be producing too much thyroid hormone
The thing i am having difficulty understanding is why you are having symptoms when T4 is well within range ... the logical explanation would be that your fT3 is high but we don't know cos they keep not testing it ...... chunter chunter
Yes I’d love for this to be anything other than interesting!!! But what aspect of it is interesting? I presume you mean by that some results are unexpected/clashing?
Anxiety’s so complex as I’ve said I’ve had it various stages of my life like when my dad died and my divorce, things like that. So it’s usually been as a result of a big life event. I’m wondering if this thyroid issue has brought it on and now maybe the thyroid is going back to normal and I’ve just been left with this anxiety. 🤷♀️
Is there anywhere online you can get the TSI done? Not waffling at all and definitely not useless, I really appreciate your knowledge and time taken to respond.
This might sound stupid but what are they likely to say about the uptake test? I’m just wondering what further info is gauged from it that isn’t from bloods I suppose?
Is liver function affected at all by all this? My liver results have been abnormal past two times (three months apart) but gp said they aren’t too concerned and to keep repeating.
my brain is going to sleep now ... will tag PurpleNails She's the best person to ask about scans . nodules etc so hopefully she'll be able to shed more light than i can.
assuming its a thyroid uptake test ,,, ( roughly, my understanding is a bit vague) you can physically see which bits of the thyroid are making thyroid hormone ie. is it all of it that is mildly overactive, or a nodule ., or both .. blood tests can't tell you that .
not sure if TSI is available easily , .. TRab is available privately that's about £100
i'd push endo for TSI ... ( because you're 'interesting' lol)
a serious side effect of Carbi and PTU is that they can affect liver so that is why they keep a close eye on it. but as long as they are doing that's ok . don't worry.
Reading through this last conversation with tattybogle - you have been diagnosed with Graves Disease - and have positive over range TR ab antibodies - and Graves is an Auto Immune disease for which there is no cure -
Graves can wax and wane throughout one's life and generally triggered by phases of stress and anxiety - which you have clearly already identified above with instances of a death and a divorce.
The only treatment for Graves is taking an Anti Thyroid drug such as Carbimazole or PTU - Propylthiouracil - to semi block your excess thyroid hormone production -
and the Propranolol will also slow down the conversion of T4 into T3 - which is the active hormone and generally responsible for all the symptoms being tolerated.
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 will reset itself without the need for any drugs.
Graves treatment takes precedence over Hashimoto's AI thyroid disease.
Other than the AT drug there is definitive treatment for Graves which means loosing your thyroid function through a thyroidectomy or RAI thyroid ablation and then being totally reliant on thyroid hormone replacement for the rest of your life.
Mainstream medical tend to think hypothyroidism more easily treated than hyperthyroidism - but as someone who has Graves and went through RAI thyroid ablation back in 2005 I find life just as, or even more challenging now and need to self medicate my own thyroid hormone replacement as all the treatment options are no longer available on the NHS.
We do no have some research you might like to read :-
Try to get a copy of the report for any ultrasound / uptake scan you’ve had.
You have hyper which seems to be continuous & needing managing with antithyroid & have with positive Trab so it’s fair to diagnose autoimmune Graves.
It’s possible you have nodules too. The uptake will show the funtion throughout thyroid. If hyper nodules are present drs will suggest earlier definitive treatment. You don’t need to be rushed into anything.
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