Really high TSH level...please help.

[Hazelnut43]

I have been underactive for 10 years. I'm 29 and have been managed on 200mcg thyroxine for about the last 3 years, no problems.
Following a routine blood test recently, my TSH was really low and they dropped it to 175mcg. However, I have just had an early miscarriage and my TSH is now at 87!!! My GP has said it is so high.

I feel awlful, and if there was a lethel injection infront of me, I would have it. I am so exhausted. I am moving around on my hands and knees. I couldn't even be bothered to speak yesterday and I dpopped my cup of coffee.
My GP has done some urgent bloods. Is there anything else i should be asking for.
Thanks for reading. This is my first post. x x

[goolarra]

Congratulations on getting the FT3!  That's excellent.

T3 in the US is known generically as liothyronine sodium and is marketed as Cytomel.  I'm sorry, but I don't know what it's called in the UK.

TSH is both very volatile and a pituitary, not a thyroid, hormone.  That's why it's so important to test FT3 and FT4 and use those as the basis for meds adjustments rather than TSH.

Your recent miscarriage may have knocked your whole endocrine system for a loop, and it's just re-stabilizing.  Once you see FT3 and FT4, it will be so much easier to figure out what's going on.  When you get your labs, post them if you'd like (along with the reference ranges), and members will help you interpret them.  

I hope your increase has you feeling better again soon...  

[Hazelnut43]

Thank you for your comment.
I have been to see my GP today and he has upped my thyroxine to 200mcg, which i though he might do. He was very good and when i asked whether i would be converting and asked to be tested for FT3, he got straight on the phone to the lab and asked for the request to be added to my recent blood test.
Do you know what the medication is they prescribe in the UK to be added to the thyroxine?
My TSH has come down to 6.1...but that's happened so quickly??

[goolarra]

When you get your results for FT3 and FT4, it's best to get a printed copy if it's not too much trouble, but whether it's printed or someone reads you the results, be sure to ask for the reference range from the report (it's usually in parentheses near the result).  This range varies from lab to lab, and we have to have your own range to compare your results to.  So, I can't give you exact numbers.  However, midrange is the rule of thumb for FT4, maybe just a bit higher.  FT3 should be in the upper half to upper third.  This doesn't work for everyone, but it's a place to start.  

Well, you know, we always say that we don't hear from people who are happy with their treatment, and I guess you're a perfect example.  You were happy for 10 years, so why would you study up on this?  None of us got here because we were happy with the way our doctors were treating us.  Sorry to hear it didn't keep up.

Good luck with your doctor's appointment and let us know what he says.

[Hazelnut43]

Ok, realy appreciate that info.
I am not a large person, I am a size 12, sometimes 14.
I will speak to him tomorrow.
I have just had a miscarriage and they are thinking the surge in hormones may have caused it.
I really do feel all over the place and so upset.
I get confused about all the different levels/tests etc, but I am going to read up this evening about it. You'd think I'd know after being diagnosed for 10 years ey? But i've never really had any major problems with it until now.
So, I shall ask for my FT3 and FT4 to be measured.
What results am I looking for? x

[goolarra]

Unless you are a very large person, 200 to 250 mcg of lthyroxine is quite a high dose.  200+ is where I start thinking that thyroxine alone is not working for you, and either T3 meds have to be added and/or you have to explore some of the more esoteric conditions affecting the metabolism of thyroid hormones.  The very first step is to test FT3 and FT4.  Without that, you really don't have a clue what's going on.  Good luck with your doctor...don't soft pedal...make SURE he understands just how miserable you are feeling.

[Hazelnut43]

Thanks for your comment.
I am seeing him tomorow so i will ask him.
Yes, I'm still on 175mcg. They will probably put it up to 200, maybe 225mcg. The highest i've been on is 250mcg.

[goolarra]

It's tough in the UK.  In addition to TSH, your doctors really need to be testing FT4 (they'll probably agree to this if you ask) and FT3 (this will probably be a struggle).  TSH is a pituitary hormone and not reliable for adjusting meds doses.  Your dose of thyroxine is quite high...I'm guessing that you do not convert well and T3 meds added to yur thyroxine might help you.  You really need to see where both your FT4 and FT3 are to determine this.

I sympathize with you...when I was diagnosed, my TSH was sixty-something, and it isn't pretty.

Are you still on 175 mcg thyroxine?

[Hazelnut43]

Thank you for your comment.
I am in the UK and i think they only prescribe Thyroxine. I have never heard of Armour. What is it?

[authrjenn]

0.5 to 5.0 are normal ranges. your off the charts. Its a wonder your alive. S
Brookewitch to Armour thyroid. If your doc says no, change docs.