10th lot of thyroid bloods- what do you think? 😕

[Rmichelle]

Hi all its that time again, can you tell me your opinion on my bloods, you know my history but briefly still on 2.5 MG's of carbi every other day since may, I saw Endo on Tuesday and he wants to keep me on carbi for at least another 3 months, I disagreed with I'm as I think carbi is keeping me feel unwell now, I've have been feeling palpy, breathy, tight throat etc exhausted, I've noticed a decline and have wondered if I need it now, my frees are still lower end of scale and want to aim in getting them higher end but if I stay on this dose then I am stagment feeling rubbish.

Tsh 1.76 (035-494) was 1.26 4 months ago

Ft4 13.7 (9.00-23.00) 4 months ago it was 12.8.

Ft3 4 (2.5-5.8) same 4 months ago

Endo said he wants me to stay on it has I'm normal(famous words) but I think if I do not come off it or reduce further he will make me more ill.

He says I could relapse but I argued the point of what difference does it matter whether its now after 14 months or another 3 months as people relapse after 18 months or even 2 years or more? Eye rolled at this point, he said "I'm not changing my decision!! X🌟

[greygoose]

At which point, I would have said 'well, I'm coming off it anyway, whether you like it or not!' lol

Unless, of course, he cares to test the TRAB...

[Rmichelle in reply to greygoose]

I had to disagree with most things hecwas saying GG, I did say "I do not understand your reasoning of keeping me on it now as I think I will feel better a couple of months down the line" I will not change my mind he said!! Its so hard as I think my frees need raising and they won't if I stop on it!! Do you think I'm right GG?

[greygoose in reply to Rmichelle]

Considering he doesn't even know for certain that you have Grave's because he won't do the right tests, I think he is behaving extremely unprofessionally. I think you should report him. He's almost made you hypo and won't do anything about it. Certainly if you have hypo symptoms, you should take it further - ask for a second opinion, or something.

[Rmichelle in reply to greygoose]

Thanks grey he won't do tsi test at all, I do have hyper symptoms too as well as hypo at tines but you can get palps and breathless and shaky with being over medicated or symptoms can be made worse if you do not need carbi anymore, my friend came off carbi after 14 months as it was making her worse, I'm very tempted to come off and face the music or reduce by going to every 3 days to see if anything raises.xx

[greygoose in reply to Rmichelle]

So many symptoms cross over, and can be both hypo and hyper. So, you can't rely 100% on symptoms. Certainly palpitations and breathlessness can be hypo symptoms.

[Valarian]

If relapse is going to happen straight away, it's most usual in the first four months.

When were you last over range (or even above the middle of the range) Rmichelle ? And when did your TSH bounce back ?

I second the idea of asking for TRAb to be tested again. I realise my circs are different from yours (a bit of a relapse about a year ago, and although FT4 and FT3 have been within range for a while now, I'm still on 15 g carbimazole and my TSH is still low), but we've been under treatment for pretty much the same length of time, and I'm due to have TRAb tested prior to my next endo appointment.

Also, I mentioned to my endo that in spite of TSH and carbimazole, I was feeling better that I had felt in absolutely ages. He said he thinks that's probably because my thyroid levels have settled at their natural point - apparently we all have this, but obviously hardly anyone has their thyroid levels tested while they are healthy. If the carbi is keeping your thyroid levels below where your body's natural expectation, that might explain why you feel unwell, regardless of eh fact they are low in range.

[Rmichelle in reply to Valarian]

Hi V, I have been in range since October last year and started to feel better then, frees were up higher end and tsh was still suppressed at 0.5 then but it all went down hill since then has they made me hyPO after that, (november) tsh changed round about then)I've never gone into hyPEr ranges since even though I have had hyper symptoms still alongside hypo symptoms.

I am just confused why drag it out longer as I've never been in hyper levels since, there is no chance of asking for any antibodies to be tested as he as already refused, he believes in the almighty tsh and says if I reduce or come off then my tsh will be lower but surelwhen I do cone off it with his permission it will change as well, does not matter if tsh changes as it as no bearing on how we feel right?😕

[Nanaedake in reply to Rmichelle]

I agree about getting the right tests TRAB and TSI. Since you've still not had those tests, I don't know how he can assert anything for certain.

[Valarian in reply to Rmichelle]

I've seen a few different consultants along the way (admittedly all at the same hospital, but it is one that gets involved in thyroid research), and they've consistently said there is little/no evidence to suggest extending the 12-18 months to two years increases the chances of remission, although there is a bit of a rider in that they usually prefer patients to have been euthyroid on a low dose of carbimazole for six months before coming off it altogether - but you are well beyond this timescale (the difference for me is that my clock was effectively reset when I relapsed).

If I felt well on 2.5mg carbimazole, I would stick with it, even for the longer term. But you don't. If you relapse, you will obviously have to consider RAI/surgery, as it doesn't sound as though you are keen to stay on carbimazole anyway, so I guess you need to consider whether you feel sufficiently unwell on carbimazole to risk bringing that day forwards. (Assuming you have Graves' in the first place !)

Your TSH appears to be behaving as you'd expect - your frees are lower than your body likes, and your pituary is trying to persuade your thyroid to get cracking, in spite of the best efforts of the carbimazole.

I believe that either Medichecks or Blue Horizon offer TRAb, so if you are contemplating stopping the carbimazole anyway, you could get your antibodies tested yourself. Unfortunately, I think it may require a venous draw rather than fingerprick, so it might work out expensive.

Hang in there !

[Rmichelle in reply to Valarian]

Thankyou sound advice valarian. I am very tempted to come off it but will mull it over for a few days. I do not feel great at all with palps, breathy, jittery feeling. Something is telling me this is wrong and im not going to improve my health until im off carbi has its hindering my frees even though endo says there fine (there not) don't like going against a decision but they are not always right, he was going to take me off carbi and then said a further 3 months because of the way I'm feeling, he says carbi does not make you feel worse but I disagree.xx

[Valarian in reply to Rmichelle]

I know, It’s really difficult. No- one with Graves’ wants to jeopardise chances of remission.

What antibodies did they test ? Just TPO ?

[Rmichelle in reply to Valarian]

Yes just tpo>900 and 2 ultrasounds both confirming hashis. Very difficult decision v.I think itakes it easier if someone says ok fine discontinue it.xx

[Valarian in reply to Rmichelle]

we're going to crack this thyroid thing somehow