Hi guys it's me again rmichelle as you regulars know I am now currently taking titration doses of Carbi 2.5mgs every other day for the past 7 weeks and still not feeling great with palps, lethargic, breathless, tight throat and seems to have felt like this since I cannot seem to raise my ft4 in the last few months- I've looked back on my previous bloods since April and my ft4 is either not budged or just moved around to 2 numbers up but it has just gone down to bottom range again now. Is there a problem, pituatry gland maybe? Or just a fact the carbi needs to go now, I've been on it for a year now- how time flies when you are having fun, eh?😕 I see Endo again in September but with my past record with endos I won't hold any hope in that area!! Perhaps I need to titrate further to every 2 days or just come of it to see what my thyroid does, who knows I could be feeling like this because of carbi? I think Endo wants me on this until January.
This was my bloods 3 weeks ago
Tsh 1.26(0.39-4.94)
Ft4 12.2(9.00-19.00 )previous months hovering at this level.
Ft3 4 (2.6-5.7) this has been going up very slightly.
Im sure if my free 4 was around 18 this would be more optimol than a pathetic 12.
Any ideas guys- massive thanks as always
Written by
Rmichelle
To view profiles and participate in discussions please or .
Thanks slowdragon, no my ferritin is dire still, it has hardly risen so I'm waiting for a appt at hospital to see GI and haem, I'm hoping that when I see gp next week he will do a iron infusion suitable for Celiac's, my b12 and folate are near tops.
I have hashis it been confirmed with my antibodies being greater than 900 for tpo, and 2 ultra sound scans have confirmed this. Now this is the question about my graves?- Endo says I definitely have graves but refuses to do tsi antibodies - his words, "everybody has graves who is hyper" I have asked several times for him to do the antibodies but he won't as he says " you do not need a test you have hashis and graves- he even puts it on my appt letters!!
I do not think he will add Levo as I've tried asking for that too, I think it will be just coming down further or coming off it, I do think that I would benefit from Levo being I have hashis!! 👍🌟
I came across the NICE central knowledge system a few days ago, and they definitely recommend TRAb testing, so you could try asking your endo (you don't seem to have had much luck with these !) why he isn't following guidelines. I guess they aren't compulsory, but it would still be worth asking the question.
- A toxic multinodular goitre (a goitre is an enlarged thyroid gland)
- A solitary toxic thyroid adenoma (an adenoma is a clump of cells)
- Thyroiditis (inflammation of the thyroid gland) when it is temporary and self-limiting'
...so you could ask the endo to explain how he is sure you have Graves' and not one of the other three, especially considering that autoimmune thyroiditis (ie Hashi's, which you know you've got) has a temporary period of hyperthryoidism, followed by being hypo:
Can't help with the pituitary. Presumably TSH was rock bottom when you were hyper, so it has made some recovery.
Stopping the carbimazole might help a bit, although you're on quite a low dose. If you haven't got Graves', stopping now that you are within range shouldn't matter, and even if you do have Graves', I think you've been euthyroid for quite a few months now ?
If that doesn't work, can't see them prescribing levo while you are still wthin range.
Thanks valarian I will try again asking, I have nothing to loose, I just think carbi is suppressing my ft4 maybe and maybe if I came off it they would naturally raise hopefully, I too cannot see them giving me Levi even though I do show symptoms of hypo too, I'm on a missonto try and get my health sorted, I have a few gp appts coming up which will require referrals, iron def & ectopic beats. Lol preparing my list of questions for Endo now- he will be thrilled I'm sure.😡 are you well Valarian?
I'm actually beginning to feel 'normal' again for the first time in fifteen months, thanks ...so fingers crossed ! Of course, next month's tests may show something different.
Even a low dose must have some suppressive action, as otherwise it wouldn't work for people who stay on it long term (although I think they tend to be on 2.5mg-5mg/day),
FT4 was 16 (top of the range is 22)., can't remember the FT3, and am not at home at the moment so can't check. Regardless of the range, the endo said they wanted me to be consistently below 18, so 16 is good, except that I'm still on 20mg carbimazole, so they thought it would have dropped a bit more than that. TSH was still too low, which was beginning ot worry them.
I'm actually getting through WHOLE DAYS without flopping at the end of an afternoon
Hope they let you come off the carbi, and that it does the trick. I might be tempted to take myself off it anyway, but if it turns out you do have Graves' and then relapse, it wouldn't feel such a great idea !
Great, really happy for you V, no matter about other result but I do think mine is low at 12, Endo even said this himself that free4 was abit low that's when he said reduce again.
Yes I know what you mean but at some stage I will have to come off it anyway😕. X
Just for clarity, the Clinical Knowledge Summaries are NOT official NICE Guidelines. They are produced entirely separately and without the same status.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Will there be a silver lining to the graves grey cloud :-( 
T3 after completion thyroidectomy
Sudden change in fT4 levels
TSH, FT4 & FT3 normal! (?)
