I have been quiet on here regarding posting for a while, mainly due to getting updates and answers from other posts.
However, I have been struggling the last few months and had my long-awaited endo Appointment yesterday which has left me feeling less than confident or cared for (he is generally great but had a student in consultation so was purely a performative appointment)
So I am dealing with thyroid issues (TT due to Thyca 2019) and Parathyroid issues since tt surgery.
I had bloods done 2 weeks ago following all usual protocols, fasting, earliest as possible (usually 9.30am as the centre opens at 9). (see results below)
I requested B12 & Magnesium & ferritin... these will be done next week🙄
So I am perplexed as I take 125mg Tirosint(levo) week days and 150mg weekends, I weigh 54kgs
I have been desperate to raise my T4 and endo agreed a dose increase last Nov, I am disapointed to see t4 level has in fact reduced. I have felt steadily more and more drained these last few months and its really getting to me.
Endo claims that due to tsh being suppressed (thyca) that I have enough active hormone for my body, despite me saying otherwise (pre TT was between 18-22 consistently for years) he says the pituitary works fine. I asked if there could be an absorption issue which he denies and that possibly I would benefit from adding T3 (self funded of course) He said I am on too much levo and should reduce it due to the Deiodinase receptors likely not working anymore? and heart and bone issues in future.
I cried when I came home as I feel so fed up with trying to survive and manage these horrid symptoms with no real answers. I do not feel confident in his opinion yesterday, and wondered if anyone else has anything valuable to input?
T4: 13.8 pmol/L Range: 9 - 23 pmol/L. (was 14.8 in Oct 23, & 14 Nov 23)
T3: 4.8 pmol/L Range: 2.4 - 6 pmol/L. (was 4.5 Oct 23 & 5.4 Nov 23)
Endo claims that due to tsh being suppressed (thyca) that I have enough active hormone for my body, despite me saying otherwise
Not necessarily so. When it gets that low, the TSH is a poor indicator of thyroid status for several reasons. The pituitary may be satisfied but the pituitary gets served first with any available hormone. The rest of the cells in the body can still be hormonally deprived.
he says the pituitary works fine.
I'm sure it does, but that's not the point. TSH should not be used to dose by for several reasons, including the point I made above.
I asked if there could be an absorption issue which he denies - T4: 13.8 pmol/L Range: 9 - 23 pmol/L. 34.29%
Absorption where? In the gut? Possible - very much looks like it.
At a cellular level? Well, first of all, you have to have enough to absorb! Your FT4 is just too low despite the low TSH so...
He said I am on too much levo and should reduce it due to the Deiodinase receptors likely not working anymore?
He's talking rubbish! lol Reduce it any further and you won't have any left! It's not about the size of your dose, it's about how much you absorb. And if you absorbed well, on that dose your FT4 would be higher. How do you take your levo? Well away from food/supplements/medication?
The deiodinase receptors? What are they? And why wouldn't they be working - if they even exist? I've never heard mention of them before. I think he was just trying to impress his student by using long words. Always dangerous to have a consultation with a student in the room. The doctor gets cocky and tries to show how clever he is at the expense of the patient. I've seen it so many times.
But, in any case, absolutely no reason to reduce your levo!
and that possibly I would benefit from adding T3
T3: 4.8 pmol/L Range: 2.4 - 6 pmol/L 66.67%
Your FT3 is a lot higher than your FT4, which is weird. How long was the gap between your last dose of levo and the blood draw?
With that level, doubtful you would benefit from adding T3, you already have quite a bit.
and heart and bone issues in future
If he's referring to the TSH, that has nothing to do with hearts and bones.
Thanks for your reply Greygoose.... I echoed your words to him, and absolutely believe he was 'showing off' for the student. It was a totally waste of time and he really is the best endo or so I thought.I take my tirosint at night b4 bed, so didn't take the dose night before bloods and took it after. I follow same 'advised' protocols every time the last 5 years.
So what would you recommend, should I increase t4 further? No T3?
I did mean absorption in the gut.... he poo pooped that saying that some people would be happy to have t4 level, and in fact it's the perfect place according to national guidelines, I said that's rubbish due to my own physiological needs, we all have different size feet, legs, eye shape etc, same for thyroid hormone needs.
Ok thanks....I am grateful this forum. They tie us up in knots don't they.I had been considering ordering some T3 after the appointment but wasn't sure he was right... you have confirmed my thoughts on it.
The fT4 is relatively low , The fT3 is comfortably around mid range , it's hard to imagine why it would be a problem if it went bit higher from adding more levo.
re the deiodinase's.... yes, having 'too high' fT4 would reduce conversion from T4 to T3 ... but it's hard to see how that could be a problem in your case since fT4 is currently so low , and is lower than fT3 .
and frankly if they are going to keep the TSH supressed anyway , that sort of implies that without TSH to 'guide' them (lol) , the dose should be adjusted based on fT4/ fT3 and symptoms.
I am now feeling even more stuck. I was hoping adding T3 would be the silver bullet I need. Despite my t3 looking ok. I now have to wait to see him again in November till then I feel like I will have a crap 6 months, not sure what to do other than increase t4.
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