Hi everybody, I’d like your opinion on my situation please. After about 18 months of endo appointments and many discussions and many tests my endo eventually agreed to prescribe me a 3 month trial of T3. ( I have hashis and have been on T4 for about 4years) I was taking 100 mcg of T4 daily and 25 mcg every other day. She prescribed 25 mcg of T3 per day and to drop the 25 T4. I started on 5 mcg following advice on here, took that for 2 weeks then upped it by 5 each fortnight and also reduced my T4 over the weeks, until I was on 50 mcg of T4 and 30mcg of T3. My 3 months was coming to an end so I arranged a blood test with my GP and asked the endo for more T3 she got my results today
TSH was 0.06 range 0.40-5 T4 was 6.1 range 9-19 and T3 was 5.29 range 3.4 - 5.38
My endo phoned me today to say she was very unhappy with the results. She said I have too much T3 and it’s all active T3 and there was no way of checking it (I’m not sure what she meant by that but she was quite distressed) she said at this level it could cause palpitations and I am at serious risk of a heart attack. She has told me to stop all thyroid medication for one week then have another blood test, I am going to do as she says as I have had palpitations but I just wanted your opinions on it thanks in advance hope to hear from you soon..
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OK so my reply stands, lower T3, increase Levo, spend time working out where you need your hormone levels and the doses of Levo and T3 that achieves that.
Unfortunately doctors don't understand that it takes a long time to reach that point and a 3 month trial is not enough.
Thanks for your advice SeasideSusie unfortunately now my endo holds all the cards as I am nearly out of T3 I will do as she has asked though I’m a bit concerned I will feel unwell by the end of 7 days with no meds but it might give me a clean slate. I don’t know why they don’t understand about it taking time to get it right they certainly take their time increasing Levo it took me nearly 2 years to get on the dose I was on before I started T3
I was actually admitted to hospital last year with a suspected heart attack and it turned out to be a thyroid storm. Luckily my heart was ok and I recovered.
Very scary ... My heart was beating too fast and my blood pressure was very high I was shaking and sweating. I did think I was having a heart attack when I arrived at A & E and two nurses had to hold me down to take an ecg. It did pass but after I was discharged I got home and I started to shake again so I had to call an ambulance who checked me over and they said I was ok. I then went to see my GP the next day as advised by the consultant in A & E. The GP did request a full thyroid function test but all he got was the TSH and because it was in range the labs didn't test anything else. Luckily I have felt ok since then but my TSH is quite low at 0.38 and my T4 is 22 which is top of the range but I feel well.
But why? That seems very unprofessional for someone with in range FT3 result and low FT4. It's incredibly common to have palpitations whether you are on thyroid meds or not. She should have referred you to cardiology if she was worried. I had palpitations with low in range FT4 and FT4, but cardio said it was not in any way life threatening and very common.
She didn’t know I had them she just said I could get them and have a heart attack. I didn’t tell her I had had them I think she would have been even more distressed.
Hi SlowDragon I thought I had researched the dosage on here before I started and I’m sure I saw 2 weekly increments to increase the dose. Oh well never mind I can’t undo it now. I also can’t change my dose as I don’t have any or very little T3 left. I also was due a blood test after 6 weeks but with the virus it was cancelled. Thanks for your advice and if I do get the chance to start again I will follow your instructions. Do you think that’s why I was getting palpitations?
It's usual to be prescribed 10mcg T3 to start with so you'd take at least a fortnight to get to 10mcg and then hold to next blood test, or if prescribed 20mcg, you might get there after a month or six weeks. I really think your doctor just looked at tablet size and thought that must be the right dose. How did you end up taking 30mcg?
She dosed 25 then phoned me to say that was too much but she trusted me to start low and build up.. when I got to 25 which took me 12 weeks I still didn’t feel right so I increased the dose again. Even though she gave me a 3 month supply, because of the way o took them I had lots left if you know what I mean.
i agree with all above suggestions about your FT3/4 . But i hope your endo isn't expecting your tsh to rise after only a week. its not supposed to move that fast. and she's supposed to know that, at least. Still it might be a good idea to check that she does....
(just to be awkward though .... i once tried no meds for a week which resulted in longstanding tsh of 0.06 going up to 7.8! and then even more astonishingly Gp never said anything about it !)
I really hope you can get them to continue t3 prescription . This 3 months trial thing is ridiculous, for too short to get level sorted out properly. Anybody would think they didnt want to give it to us...... oh, no wait ..... they dont want to give it to us
I've had one of those 'Gp looked terrified' encounters too... and im only on Levo . But it's hard not to get scared into believing them the next time you feel a strong heartbeat ,and remember your 79yr old aunty had a stroke.
Just to let you know, its possible they are really scared by your results, but its also possible you already know more than them about how thyroid results work. Make them examine your body while its there in real life in their office, as well as examining some numbers on a bit of paper. You would hope ! they could clinically recognise overmedication if it was standing in front of them. My Gp once told me to reduce because he was worried about my heart.... over the phone! when i'd never had any sign of a heart problem....... i felt like saying 'you must have really good hearing to check my pulse from down the telephone'
And its also possible its the cost of the T3 prescription ,and the peer pressure about T3 being 'dangerous and hard to monitor' that is what is scaring the heck out of them.
Thanks for taking the time to answer and all your comments are correct. The peer pressure the cost and the lack of knowledge. They sent me a letter about 3 weeks ago saying my case has been triaged and an urgent review is not needed, it took me 18 months to get T3 because the said it was dangerous to my health, then they leave me to it! I don’t understand that.
Hi tattybogle do you know how long it takes for T3 & T4 to get out of your system? I’m asking you because you say at the start of your comment it takes longer than a week for your TSH to change
T3/T4.......I don't know 'exactly' how long, but it's to do with the 'half life' of the hormones. I think T4's half life is about 7 + days but i'm not sure exactly (someone else here will though) .
Which means after 7 days, half is left , after another 7 days half of that half is left.... and so on . So it takes ages to go completely , but its smaller and smaller amounts remaining.
T3 is shorter but i'm not sure how much.
TSH rising in response to reduced dose is complicated by the fact that sometimes it takes a very long time to recover from being 'suppressed', and sometimes it may not recover , or so i have read. 'Suppressed' technically means <0.000 i believe . And although your 0.06 is low , there is actually a lot lower it can go before 0.0 . You can get readings of 0.006.
But you have to be careful when interpreting written/ spoken info on 'suppressed' or 'very low' tsh. Not every body means the same numbers (and then they panic.)
But the reason for my 'she should know it doesn't move that fast ' comment was because the recommended time to retest TSH after a dose change, up or down, is 6 weeks (min), because the TSH response 'lags behind' the blood levels, and so if you retest too soon its not a reliable indicator of the effect of new dose on TSH levels.
Hope that help's answer, but there are more scientific folk around if you need accuracy!
Hi Tattybogle to my surprise I am feeling well. I thought I would feel very unwell but I don’t really feel any different. It’s now 8 days since I took any thyroid meds and because of work it will be another 8 before I get tested again so I’m going to continue with none and see how I go. Thanks for your reply
She really doesn't have a clue, All T3 is active (unless she means bound and unbound as in FT3 and TT3). Your FT3 is in the reference range, so she's saying that everyone with high normal FT3 is going to have a heart attack - so why is the range what it is if that is the case. I wouldn't stop meds completely, as I'd be afraid of being really ill. You might be slightly overmedicated so could drop T3 by 1/4 tablet. Some people need both Ft4 and Ft3 in range so you could also increase levo by 25mcg, but not in the same week. It's great to have got a T3 prescription, but I don't think this doctor knows how to manage it.
Palpitations may be caused by low vitamins and minerals.
You should ask your doctor to test your folate, vitamin B12, vitamin D, iron and ferritin. If they do it then great - get hold of the results and reference ranges, post them in a new thread, and ask for feedback.
If your doctor refuses to test for you then, sadly, the only option is to pay for private testing.
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