Have had enough of GP - advice for sourcing on T3 and starting T4

[Trisha15]

So after over a year of working with GO and 1 endo appointment, I have finally come to the end of my tether. Actually extremely emotional after last call from GP

After finding this site and pushing with GP got an endo appointment. Increased levo from 125 to 150. TSH then dropped too low so in constant battle. Switched to 125/250 alternate days at advice of endo but GP did not have a recurs if this. This morning same thing again. TSH at 0.07 and T4 back down to 17.9. And they want me to decrease levo again!

I cannot cope with the constant pressure of fighting my corner especially when I do not feel even optimally medicated. So, this has finally pushed my into sourcing my own T3.

Can someone PM me with how I go about this please?

I will read back over this site as well but if there is a guide a to what a stater dose should be and what to do with the levo dosage that someone could post me to that would be great

Given all the comments about sourcing and getting dosage right on T3 I was reluctant to go down that route on my own. But I now feel I have no choice it’s hard to tell at the minute but I am normally a very level headed and intelligent enough person, although I feel a complete mess now

Also, can anyone shed any light on why my TSH would be so suppressed? The last time my T4 was around 17 -18 my TSH varied between 1.5 and 2,5. When they increased the Levo my T4 shot uo to 23 and the TSH dropped to below 0. I felt a lot better when my T4 was at the very top of the range. But why would my TSH still be so suppressed?

Sorry but needed to get this off my chest

Thanks

[Anthea55]

Nothing wrong with suppressed TSH. See ThyroidUK website about the Myths of Hypothyroidism

thyroiduk.org/further-readi...

Mine was suppressed for years.

[tattybogle]

Why is TSH lower now than it was previously at those levels of fT4 ?

well , the increase dose that "took TSH below 0. ? " turned off most of the TSH production , and it can sometimes take a very long while to come back, and in my experience (same as you've just seen ) even when it does come back , it isn't any longer at the same level for a given amount of fT4 as it was previously .

My TSH never moved much from 2.7 ish when taking 50 mcg then 100mcg then 150 mcg Levo .. but a year later i tried over 150 mcg , (175mcg ?) for just a month and then TSH came back at 0.001 and fT4 was way over range at 36.7 [13 -26]

I reduced back to 150mcg but TSH stayed between 0.05 to 0.6 from then onwards.(even on lower doses like 125/112.5mcg)

(but .... I don't know if the 'one month of 175mcg' caused it , or if my TSH was already low before i increased as it had been several months since previous blood test, and i cant compare 'before and after' fT4 , as the lab changed from testing TotalT4 to FreeT4 )

Apart from one time where i didn't take any Levo at all for 12 days before test and TSH was over 7 ... and then went back to 0.05ish at next test when taking Levo properly

Until ..... 17yrs later, TSH is now 1.9 on last test ...for no obvious reason, except possibly ?because i now split my levo dose into two halves AM and PM .

I wonder if TSH goes Very low , it can sometimes 'reset' the level to lower than previously.

[SeasideSusie Remembering]

Trisha15

For anyone to be able to guide you, please post your results with their reference ranges (these vary from lab to lab so we must have them to understand your results) so that any suggestions can be tailored to your own individual needs.

Also, tell us the dose you were taking at the time of the test and when you took your last dose of Levo before the blood draw (timing is important).

Also, please say if you take a B Complex or Biotin supplement and if so whether you left it off for 3-7 days before the test.

[DippyDame]

Don't apologise Trisha15 ...we understand how you feel. I could barely function when I started my thyroid journey!

It looks as if your T4 to T3 conversion may be poor.....do you have high FT4 with low FT3?But, I guess your GP hasn't tested FT3!

Poor conversion will result in a high FT4 which in turn signals the thyroid via the pituitary gland that there is adequate T4 in the blood. Consequently, an instruction (TSH) to the thyroid to produce more T4 will not be sent which results in lowTSH!

This freaks out medics because they do not understand how the system works...all they seem to believe is that low TSH is dangerous.

If they had also looked at your FT3 result, instead of so often insisting it isn't necessary, they should be able to identify poor conversion and the need to address this.

First you need to optimise vit D, vit B12, folate and ferritin, all essential for thyroid health and to support conversion.

You may then need to add T3

Before adding T3 have a full thyroid test - early morning away from food and drinks. Post results and members will advise