Started T3 in Oct 2012 - received my recent blood tests and I'm disappointed that my levels aren't as good as I'd hoped. | Thyroid UK Support community

11 comments

shaws Admin

13 Jan 2013

As far as I am aware if you are on T3 alone your T4 is low.

How do you feel - that is the question? Holistic doctors use the TSH as a tool, not the blood test but how the patient responds to the medication.

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birdie

13 Jan 2013

Hi Shaws, I'm on 100mcg thyroxine and 10mcg of liothyronine (T3). When I started T3 in October, the specialist wanted to reduce thyroxine from 100mcg to 75mcg but I argued against that and stayed on 100mcg. As for how I'm feeling, I have trouble sleeping most nights, have pain in my joints, particularly elbows for some reason! Mornings I wake with stiffness in the hands with pins and needles. Ongoing constipation which has got worse over the last year. I'm seeing the specialist tomorrow morning.

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birdie

13 Jan 2013

In addition to the above, I also asked for Vitamin B12 test and the results are;

Vit B12 1034 (range 800 - 2000)
Folates 17.7 (range 2.8 - 20)

I've yet to research what it means and if it has anything to do with how I'm feeling.

Any insights are greatly appreciated! x

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galathea

14 Jan 2013

Well you simply are not on enough T3... you obviously are not converting it particularly well and adding the 10 mcg only increased by 1. If you add in another 10 mcg, it might increase by another 1?
Doubling your T3 will not double your free t3....

G x
..

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Jackie

14 Jan 2013

Hi I would say that you definitely need more T3, usual starting dose is 20mg split twice a day ( about 12 hours if possible). You may well need more T4 too. T3 will usually lower the TSH Normally both are put up gradually until tests good and you feel better. Often FT3 needs to be near the top of range . even if that makes the TSH too low.
Jackie

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nobodysdriving Admin

14 Jan 2013

I agree that you may still be undermedicated, my opinion though is 'not' to increase the T4 at this stage.

fT4 will most often than not go down when you add T3 to your T4 meds, that is 'normal'. fT4 will carry on diminishing and will disappear eventually if you are on T3 only and well medicated. I am on T3 only and of course do not have any fT4 in my blood. I feel 'fantastic'

Many people who are on NDT (a combination of T4 and T3) have an fT4 which is lower than their fT3 (I was an exception and in fact I don't think I do well with much T4 in me, by body simply does not know how to use it well).

if your joint pain was there 'before' you were medicated for hypo then you may simply be undermedicated, if it was not and/or it got worse since then it may well be the T4 giving you joint pain, it did to me! synthetic T4 gave me joint pain which went away on NDT (natural T4) and I do not have joint pain on synthetic T3.

if your joint pain was not there before you got medicated for hypo or if it's worse even, I'd ask your endo/specialist if you can please now reduce your T4 to 75mcg but take 20 mcg T3 daily instead of 10mcg and then review from there in a month.

Please listen to how you feel, do not follow the numbers on your test results like they are meant to tell you how you should feel. Bloods are merely a very faint guide to what you should do, the main 'chunk' is 'you'.

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nobodysdriving Admin

14 Jan 2013

also, your vitamin B12 'is' low, however it is very very likely that your GP and endo may 'dismiss' this and say it's in range therefore it's normal.

You can supplement yourself with sublingual methylcobalamin b12 tabs.

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birdie

14 Jan 2013

Thanks, everyone for your comments and glad that this supports how I'd been thinking - suggest to Dr Toft, my Endo that I should increase T3 and reduce T4. I'll also mention the lowish B12 but, yep, I can supplement that on a more regular basis (I usually take it when feeling stressed). I was hoping the joint pain would have eased and maybe if I reduce the T4, this will happen. Hope you all have a good day! Anne x

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MaryMary

14 Jan 2013

Just a thought - if you have a thyroid which is slowly giving up producing its own thyroid hormones then you have to gradually increase replacement in either t3 or t4.

My opinion would be to increase t3, on the basis the tsh could be lower, but am not medically qualified. However, it's how you feel which is the most important. Are you keeping a good record of signs and symptoms and checking your temperature before you get up in the morning? I found this really useful for myself and as evidence for the medical people.

Good luck.

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heathermr

14 Jan 2013

As your TSH is getting low, your T4 will start to work against your T3 by converting to Reverse T3 instead of T3 itself. This Reverse T3 will be blocking the receptor sites and stopping the T3 working. You need to severly cut down the T4 to stop this happening and give the T3 a chance to work. I was taking both T4 and T3 and wondering why I felt so dreadful but since I stopped the T4, and just continued with the T3 I feel so much better.

Good luck.

Heather

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birdie

14 Jan 2013

Interesting, Heather re the T4 working against T3, I hadn't heard of that. I saw Dr Toft, the Endo this morning and we agreed to increase T3 from 10mcg to 20mcg but splitting it to morning and evening. He said because of my small size(!) he was worried that I would peak and drop in the course of the day if I took 20mcg at the one time. Also, reduce Levothyroxine from 100mcg to 50mcg which is similar to what you suggested. I monitor how I'm feeling, Mary but don't take body temperature in the morning. My thyroid doesn't produce any hormone at all so just relying on meds now. Cheers, all! x

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Started T3 in Oct 2012 - received my recent blood tests and I'm disappointed that my levels aren't as good as I'd hoped.

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