Advice

[Jompy]

Hi

I have been on levo thyroxine 3years n still not feeling great.started on 25 and very slowly increased to 100 now very slowly trying to decrease due to the fact that thoughLess tired and more able to function have other new symptoms plantar fasciitis,nausea, vomitting, Tmj headaches my last results were tsh 0.18(0.34-5.6) and t4 11.9(8-18) not sure if symptoms are due to not correct dose(alternating75 and 50)or as my dr has suggested maybe should not be taking any levo don't know whether to stop taking it any advice welcome

[Jompy]

Was hoping for some replies getting desperate feeling terrible on levo but worried about coming off

[greygoose]

Do you have your results from when you were diagnosed? They will tell you if you need to take levo, not the results when you're already on levo. Doctors don't seem to understand that - they actually don't understand very much at all, really.

Your FT4 is not quite mid-range, so looks as if you are under-medicated, but your doctor is only looking at the TSH - another mistake they make!

Once you are on thyroid hormone replacement, the TSH is irrelevant unless it goes high. It should not be used for dosing. I really wouldn't recommend you come off it entirely, because then your TSH will shoot up, and your FT4 go even lower, and you will feel worse. And you should not be trying to reduce it - what put that idea in your head? The new symptoms you have developed are hypo symptoms. It often happens that when you increase levo more symptoms reveal themselves, but it doesn't mean you take too much levo, on the contrary, it means you need an increase. Your doctor is a bit of a block-head, isn't he!

[Jompy in reply to greygoose]

Thanks. When diagnosed was borderline t4 7 and tsh 2.5 same references as last post. I was trying to reduce cos I ended up in hospital with severe vomitting n diaorhea and abdominal pain could not find out what was wrong and I am convinced it's levo. My dr that diagnosed me was very good but has retired new dr says I should never have been diagnosed

[greygoose in reply to Jompy]

He would! The younger they are, the less they know about thyroid.

I very much doubt if levo caused those symptoms - I've never heard of it having that sort of effect. I would have plumped for a virus, myself.

What would be a very good idea, if you can do it, would be to have proper thyroid testing :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

I know the NHS won't do all those, but it is possible to have all that done with a finger prick test, privately. Details of private tests can be found on the ThyroidUK main page. At least, then, you would have a better idea of what is going on.

[Jompy in reply to greygoose]

My previous dr used to check everything except antibodies my last tests oct 16before he retired were ferritin 32(11-200) vit d 67(>50) t3 4.3 (3-8.6) at this time I was taking ferritin folic acid and b12 on prescription which new dr won't give me. Also when I was in hospital they did say I was anemic n to get some iron tablets. I will try n get a new set of blood tests privately. What do you make of these ones?

[greygoose in reply to Jompy]

Everything is too low. Ferritin should be mid-range, Vit D around 100 and T3 up near the top of the range.

[greygoose in reply to greygoose]

How about your antibodies?

[Jompy]

Never been tested