Is my TSH too low: Hi I’ve posted several times... - Thyroid UK

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Is my TSH too low

Otto11 profile image
7 Replies

Hi I’ve posted several times before regarding my Thyroid journey but not yet filled in my profile. In brief partial Thyroidectomy in 1995 & stable for many years on 75mcgs of Thyroxine till TSH started creeping up & up regularly over 5. After lots of arguments with my GP I eventually managed to see an NHS Endocrinologist in 2022 who told me I had been under medicated for many years. I had 2 increases of Thyroxine & currently taking 125mcgs daily. My TSH last July when I saw the Endocrinologist was 3.9 (0.27-4.2). T4 18 (12-22) & T3 3.2 (3.1-6.8). The Endocrinologist increased my Thyroxine twice & then said my results were going in the right direction & discharged me in September. At that time my levels were TSH 1.1. T4 23 & T3 3.4. I felt a bit let down as I felt things wernt much different to when I first saw him. I’ve had a few private blood tests done with Medichecks. Feb 23 results were TSH 0.47 T4 20 & T3. 3.4. I’ve just had another private test done ( the ranges are the same as my initial blood results) TSH now 0.27. T4 21.64 & T3 3.8. My question is that my TSH is at the cut off of range which on the calculated dopiaza reads at 0%

I guess I need a slight reduction in Thyroxine but also still concerned about my low T3. At this rate it’s going to take years to get it to an acceptable level. My B22 is currently 579 ( GP has reinstated my B12 injections). Folate 13.1 low but improving as was 7.1 in July 22. Ferritin 96 & Vit D 94. My GP refuses to test T3 or 4.

Just asking for your input before writing again to the Endocrinologist to see if he will see me again or seeing a private Endocrinologist. Thanks

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7 Replies
SeasideSusie profile image
SeasideSusieRemembering

Otto11

What your doctors are missing is that your conversion of T4 to T3 is very poor.

T4 18 (12-22) & T3 3.2 (3.1-6.8)

FT4 is 60% through range with FT3 at 2.7%

and assuming ranges for all tests are the same

T4 23 & T3 3.4.

FT4 over range at 110% with FT3 at 8.11%

T4 20 & T3. 3.4.

FT4 is 80% with FT3 at 8.11%

T4 21.64 & T3 3.8.

FT4 is 96.4% with FT3 at 18.92%

TSH is useful for diagnosis but once on thyroid hormone replacement it doesn't have much use in showing thyroid status, only the thyroid hormones - FT4 and FT3 - show our actual thyroid status so that's what we should look at.

Point your poor conversion out to your endo and suggest he gives you a trial of T3 added to your Levo. If he suggests reducing dose of Levo then if your FT4 is 60-80% we would say you don't need to reduce it, if it's top of the range then yes a reduction would be sensible but no more than 25mcg.

Otto11 profile image
Otto11 in reply toSeasideSusie

Brilliant this is exactly what I thought but just wanted confirmation that I’m correct. Thank you very much.

DippyDame profile image
DippyDame

You are spot on!

Low FT3 is your problem.

Susie has explained why.... but adding some back up to help your request re poor conversion andT4/T3 replacement

T3 is the active thyroid hormone and for good health must flood almost every cell in the body making it available to the T3 receptors.

T3 must be available in an adequate and constant supply and yours is abysmally low.

Low cellular T3 = poor health

Your conversion is poor ( high FT4 with low FT3) so T3 is low

Following diagnosis and medication TSH is not a reliable marker.

Science shows that FT3 is the most important result followed by FT4 ....

so do not accept a dose change based on a TSH result

You should not have been discharged by the endo with those labs......your treatment was a job half done!

Sadly not uncommon, which is why so many with thyroid disease are suffering.

You shouldn't need to pay for a private endo ( no guarantee they are any more clued up....they all have similar training!).

It is a monumental disgrace!

The following should help support your case for the addition of T3

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

Poor T3 converters with persisting symptoms may thus be the most suitable candidates for trials of T3/T4 combinations. T3 addition may also avoid LT4 dose escalation resulting in T4 excess, as T4 has been implicated in non-genomic actions, not mediated via T3, such as actin-related cell migration

( John Midgley is our TUK advisor "diogenes")

And...

thyroidpatients.ca/2018/09/...

Are you a poor T4 converter? How low is your Free T3?

Good luck!

Otto11 profile image
Otto11 in reply toDippyDame

So sorry just realised I didn’t reply. Your post is really helpful. There is a lot to take in. As I said I have been discharged from Endo but am going to write to him again & if no joy guess I will have to go privately.

But your information will help tremendously. Thank you so much.

DippyDame profile image
DippyDame in reply toOtto11

No need to apologise!

It's madness that we have to consider private treatment...they all have very similar training so no guarantee private is better

Having said that I've just had private eye surgery...NHS list about 2 years! It was done in less than a month!

Good luck!

Otto11 profile image
Otto11 in reply toDippyDame

Thank you. I hope all is well following your eye surgery.

DippyDame profile image
DippyDame in reply toOtto11

Thank you...

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