T3 help!! Where do I go from here!!??...... experienced thyroid experts wanted!!

[ThyroidObsessed]

So here are my results as everyone wanted since starting T3 6 weeks ago!

FT3 - 7.06 (3.1- 6.8)

TSH - 0.45 ( 0.27- 4.5)

FT4 - inconclusive!!!! What does this even mean!!!! Possible binding protein abnormality which effects t4 assay!

So my NHS endo told me to reduce the Levo from 100mcg to 75mcg and add in T3, I told her I'm very very sensitive to any change and that my levels can change massively with just tiny increases and decreases even as small as 5mcg of Levo!!!

She didn't care anyway I reduced the Levo to 75mcg and weaned in T3 very slowly... I felt so ill so upped my Levo to 100mcg again and got my T3 up to 10mcg...

Anyway 6 weeks later I have had a blood test and the results are as above...

The secretary said the FT4 results came back with a not saying possible binding protein abnormality .. what does that even mean...

Also why isn't my tsh suppressed with a FT3 that high!!??

Iv been checked for pituariaty but came back normal...

They did do extensive tests which were sent to Cambridge and came back that I had a binding problem which explains a continuous high FT4 on Levo alone ....

I'm suffering mentally more than anything anxiety/depression up and down moods basically everything I got on Levo alone...

I give up I really thought t3 would be my saviour, I just feel like hell 😣😣😣

[diogenes Remembering]

First things first! First you say that you are very sensitive to small changes in dosing with T3 or T4, and then you have quite significant rapid dose changes. If you are sensitive, then changes should be very small and very slow. There isn't a quick answer. Second your FT3 is now above range with sensible TSH and "inconclusive" FT4. Binding protein abnormalities are suggested. There are two possibilities for that. The first is antibodies in your blood that carry T4 and/or T3 themselves and interfere with some manufacturers blood tests more than others. If this was a T4 antibody only then only FT4 would be affected. A mixed antibody (T4/T3) could affect the two tests to a different extent depending on the exact characteristics of the antibody. That may explain above normal FT3 with in-range TSH and inconclusive FT4.There is another possibility. You may be a rare patient who contains a rare form of albumin in your blood. We describe it as Familial Dysalbuminemic Hyperthyroxinemia or FDH. In this the albumin is mutated so that it binds T4 much more strongly than normal. Indeed the binding is so strong as to make it the principal binder in blood. If a test with this serum doesn't exactly mimic the contents of blood serum then tests from different manufacturers are affected to lesser or greater extents. That is, the FT4 they measure is artificially high. In this case, only a FT4 test using a two-step system will measure correctly and then not always. You ought to find out what test method the hospital is using.

[ThyroidObsessed in reply to diogenes]

Thank you, I was told that the T4 antibody test I had came back negative...

Also I have had tests done at 3 different labs now all say that the reason I get a high or over range ft4 on Levo with a some time high tsh is because of the binding protein...

I'm thinking of reducing the Levo to 75mcg from 100mcg like I was told to when I added 10mcg of t3, or maybe alternate of 75 and 100 of Levo as I'm.sensitive to change then my ft3 should come down slightly...

What do u suggest...

I don't get why my ft4 result was not given to me .. if it's unreadable does that mean it's too high or too low??

[diogenes Remembering in reply to ThyroidObsessed]

I think because, with the method employed, you couldn't get a sensible answer owing to interference. More likely to be artificially high than low.

[ThyroidObsessed in reply to diogenes]

So I have had a phone call from my endo this evening and she said she's no longer looking at the ft4 as it's not important when on t3 and t4 medication and that she will only be dosing me on my tsh and ft3 results only!! She said as the ft3 is only slightly over range and the tsh is in range that I'm sufficiently medicated...

I didn't tell her I'm suffering as I don't want her to stop my T3!!..

As im not well mentally i.e anxiety/ depression I think the ft3 is too high for me so im going to reduce my Levo slightly from 100mcg to 87.5 so then my ft3 should come down slightly and hopefully feel better!....

[MaisieGray]

Here's a link to an abstract regarding binding protein abnormalities which states "Thyroid hormone binding protein (THBP) abnormalities are the major cause of discordance in commonly performed total thyroxine (T4) and thyrotropin (TSH) estimations, though these do not interfere with thyroid hormone action." (my emphasis) "In case of inherited THBP abnormalities, the family members of the affected individual should also be screened to avoid misdiagnosis and erroneous treatment in case they develop thyroid dysfunction in future." So it seems that it causes oddities in test results but not thyroid action. Perhaps you need to ask the Endo or GP if they are going to test again/further, to rule it in or out definitively, or to discover what other cause there might be for your test result. Presumably though, you have had normal FT4 test results previously?

ncbi.nlm.nih.gov/pubmed/154...

[ThyroidObsessed in reply to MaisieGray]

Yes when on Levo only I have had normal ft4 results but always high in range sometimes 1 point over, but ft3 always just below mid range.. from not feeling well mentally and ft3 not great my endo decided to trial me on t3 which is a miracle on the NHS!!!

[shaws Administrator]

Blood tests were introduced along with levothyroxine (T4)- nothing else. Therefore if we add or take others, i.e. NDT or T3 the results cannot correlate in any way. It should be 'how the patient feels - along with relief of symptoms'. Levo being the inactive hormone should convert to T3. It doesn't always do so effectively.

If we don't take T4 (levo), then our results will be different - because our own body isn't producing T4 or very little. If you didn't allow 12 hours gap between dose of T3 and blood tests, results will show that T3 is high and results will be skewed. They will also show high if we are taking T3 or NDT of T3/T4.

Dr Lowe only took one blood test for the initial diagnosis and thereafter dose was slowly titrated every two weeks until patient was symptom-free. I don't know if you've read the following, i.e. Safely getting well on thyroid hormones:-

naturalthyroidsolutions.com...

[ThyroidObsessed in reply to shaws]

All i know is since starting t3 weening myself up to 10mcg iv not felt any better, iv been perscribed it mainly for depression and anxiety im not good mentally at all and very forgetful, I feel like shit...

I'm gonna reduce the Levo from 100 to 75 like I was initially told to and give it 6 weeks before a blood test as that's when things settle for me... as I think maybe staying on 100 of Levo instead of reducing it like the endo said has made me overreplaced....