Mmm well been for my blood test armed with my list, didn't go to plan to say the least......

[princessze]

First I asked what blood test involved, was told a thyroid function test to test TSH, and that could only test for what the computer said, asked if this would include T3, she told me that was up to the lab. . I asked if I could have a print out of previous results then I could check myself, with a lot of attitude she gave me two, I have not been tested for T3 only, Tsh on one and T4 and Tsh on other, and never tested for anything else, asked if I took thyroxine as that is the only treatment there is, I just gave up and agreed, lets hope I get on better with endo this time x

[Heloise]

I think that is standard procedure from what many others have said. They figure if your TSH is within range and your T4 is also in range, that is all that is needed and if you have no symptoms that may be sufficient. But the free T3 level dictates how much usable hormone you are deriving from your T4 or Levo. Natural desiccated hormone gives you a little actual T3 and that's why it is preferable to thyroxine. If you are ill they should do all three tests including an antibody test.

[princessze]

Long story, I have put on here before, basically I have been hypo for many years taking 200 levo, always felt unwel not knowing any different just struggled on with life, by acciden as family crises to deal with forgot to take meds, noticed I was feeling well, bloody good infact, explained to doc, couldn't explain it an sent me to endo, he said that was impossible it was all in my head told me to go back on levo as no other treatment end of, done that, and oh yes feel really unwell again, getting worse higher the dose goes my tsh193 t4 1.7going to endo Monday so tested last week an stopped it, again felt fantastic from head to toe, very confused an no one will listen x

[tegz in reply to princessze]

NHS have just got to push the 'Levo' line, as they are not keen to open up any dialogue on mixed NDT or T3 usage [or not even using] for patients -as much as can be got away with. [My take]

This is being challenged with the Scottish petition right now.

I hope your new endo will act for you on this and find a way through the murk - as some do find.

Levo is not the same as human T4 & neither does it come packaged attached to protein for easy assimilation and any downregulation to T0.

[My best guess, for now]

[princessze in reply to tegz]

I do feel like I have more info now , thanks to you all on here, and I will be trying my best on Monday when I see endo x

[princessze in reply to tegz]

I am really confused now, had a call off my doctor tonight giving me my results of blood test, well it was actually another doctor in my practice as mine was off, he phoned to say I was very under active , I asked what the results were, my TSH was 75, when I asked for the rest as I requested, he said only TSH was tested . I hadn't mentioned I hadn't taken my levo for nearly 2 weeks previous to the test, but it is a big reduction, think I have just confused myself, mind you it is nearly a year since they last tested,so I don't truly know what it was before I stopped it, all I know is, I take it I am really unwell, stop it I feel great , just feels like a big mess now x

[tegz in reply to princessze]

You ought to make it clear to surgery that you've stopped Levo -and why.

Hopefully then you'll be given a trial of T3, if suitable.

You def. need something right away and more diagnosis as to what's going on with you!

It's likely that you won't stay feeling well for long without high TSH being addressed.

[princessze in reply to tegz]

I stopped it for my own benefit just to check I would feel the same, as I previously did the year before, I tried then to explain to the doctor and then the endo he sent me to because he couldn't explain it and told me he didn't know what to do, the endo just told me I was under active , levo is the only treatment I had to take it, the rest was in my head, no other tests done, I gave in not knowing anything about it, suffered another year until it got to the point I couldn't go on like that the higher my dose got the worse I was, and here it goes again, and I don't hold up much hope for endo on Monday, sorry for doom an gloom, but where am I supposed to turn next.

[princessze in reply to princessze]

I am back on my levo I just wanted to know before I went to see endo .

[tegz in reply to princessze]

I would ask for T3 to be added in and the T4 reduced to see if a better treatment can be found.

If you get a good endo I don't see why he couldn't do a Reverse T3 test to see if you have a T4 conversion issue.

This testing may be delayed due to your self changing dosage needing time now to stablise -for both your reactions to it and steady test state to compare with previous results.

Chopping and changing isn't useful and better to stay on plan for a bit, I reckon.

At least you have an idea to take forward- even if it's open to correction. Your comments may be well received!

That's what you need- a better view from the Endo.

It's not doom & gloom as you're learning and making progress.

[tegz in reply to tegz]

I've just seen your other post- I would carry it on here, as there's a lot if info in there. Difficult to follow, otherwise.

I may not say much as I think you need to wait for those further tests.

Your figures don't scan to me on how you feel- with a low T4 but you must try to concentrate on essentials next time, as discussed previously [take/make notes] as they will skate on happily in 'auto' if lke many Endos & GPs.

Others may comment then, hopefully.

[princessze in reply to tegz]

Oh right wasn't sure where to put it. The last TSH was 75, that was with no meds, endo said I should not be feeling so well and doesn't know what's going on, tests she has requested I get done are:-TSH , T4 T3 , cortisol, FBC, U & E, (?), calcium, glucose, Ferritin, vitb12/folate, endomysial antibody, coeliac screening, and did say about pos use of T3. Thanks for reply.

[tegz in reply to princessze]

That sounds more promising with testing/T3 & at least we're all in the same boat!