Advice need re T3 before hospital appointment

[Afshan64]

Over the last year I've reduced my intake of thyroxine on advice from endocrinologist and a rheumatologist who say that my early onset osteoporosis is linked with my over-suppressed TSH. My last blood test (last week) for the first time shows normal range of TSH, but I have definitely been feeling hypo for a few months and recently excessively exhausted... and I've noticed from my results below that my T3 levels from the most recent test , whilst in range, are the lowest they've been for a long time.

I'd really like to know if I should be asking the endo at the hospital to give me T3 or something else as i don't think i can function on my current thyroxine levels. Below are my results over the last 2 years, sorry for so many numbers but I would really appreciate any advice, the appointment is on Tues . thanks...

14 Jan 16 Serum free T3 level 4.3 pmol/L 2.5 - 5.7pmol/L

22 Mar 16 Serum free T3 level 4 pmol/L 2.5 - 5.7pmol/L

03 Aug 16 Serum free T3 level 4.2 pmol/L 2.5 - 5.7pmol/L

13 Mar 17 Serum free T3 level 4.6 pmol/L 2.5 - 5.7pmol/L

09 May 17 Serum free T3 level 4.7 pmol/L2.5 - 5.7pmol/L

07 Sep 17 Serum free T3 level 3.6 pmol/L 2.5 - 5.7pmol/L

14 Jan 16 Serum TSH level 0.05 mu/L 0.3 - 4.2mu/L

22 Mar 16 Serum TSH level 0.13 mu/L 0.3 - 4.2mu/L

03 Aug 16 Serum TSH level 0.04 mu/L 0.3 - 4.2mu/L

07 Feb 17 Serum TSH level 0.29 mu/L 0.3 - 4.2mu/L

13 Mar 17 Serum TSH level 0.12 mu/L 0.3 - 4.2mu/L

09 May 17 Serum TSH level 0.15 mu/L 0.3 - 4.2mu/L

07 Sep 17 Serum TSH level 0.4 mu/L 0.3 - 4.2mu/L

14 Jan 16 Serum free T4 level 17.5 pmol/L 9 - 23pmol/L

22 Mar 16 Serum free T4 level 18.5 pmol/L 9 - 23pmol/L

03 Aug 16 Serum free T4 level 18.6 pmol/L 9 - 23pmol/L

07 Feb 17 Serum free T4 level 16.8 pmol/L 9 - 23pmol/L

13 Mar 17 Serum free T4 level 20.7 pmol/L 9 - 23pmol/L

09 May 17 Serum free T4 level 18.5 pmol/L 9 - 23pmol/L

07 Sep 17 Serum free T4 level 18.9 pmol/L 9 - 23pmol

[ Edited by admin to help make it more readable. ]

[Nanaedake]

You really need to check your FT3 blood levels before condidering taking T3. Would your Endo order that test? Your TSH looks suppressed even at 0.4 that is quite low but without finding out what your FT3 level is, you can't really be sure.

I don't think a low TSH is a problem if FT3 is in range but someone more scientific may know more. I think the jury may still be out on whether a suppressed TSH causes osteoporosis. After all, thyroid cancer patients often take suppressive doses of levothyroxine as part of their treatment. I would have thought if your medics were worried about osteoporosis they should be checking the FT3 level not just TSH and FT4. Seems a bit toe about face to me.

[Afshan64 in reply to Nanaedake]

I was taking 100 ug 5 days and 125 2 days a week and I felt fine on that, now I alternate 75 and 100 and don't feel ok definitely feeling hypo.

[endomad]

did you feel ok with a higher dose of Levo T4? you dont say how much you are taking. I would be asking endo to put dose back up to when you felt better, your march tests are slightly better than sept but not by much. If you have felt well on t4 then stick with it, throwing t3 into the mix may make things worse as you obviously convert well. Your test numbers are good and that is all the dr is looking at. Are these private tests? 4 tests in 9 months for nhs is a lot.

Bone loss is tricky as you need to keep active to keep bones strong and if you feel exhausted you cant exercise, as you have osteoporosis you will prob find that the rheumatologist has advised the reduction and you will need to convince him as well as the endo. x

[Afshan64 in reply to endomad]

I was taking 100 ug 5 days and 125 2 days a week and I felt fine on that, now I alternate 75 and 100 and don't feel ok definitely feeling hypo.

[endomad in reply to Afshan64]

I would deff ask to go back on the dose you felt well on, quality of life is just as important as a good dexa scan. Could you say to them that you accept an increased risk to bones but need to be able to function as you did on higher dose, its not a really big dose you were on it would be an increase of 150mcg over the week, lots of people take that and more daily xx hope they listen and help x

[Afshan64 in reply to endomad]

Thanks. its hard as they told me I was over medicating and kind of blamed me as if I'm a drug Addict!

[endomad in reply to Afshan64]

i had years of battling a dr, my thyroid was removed but he kept telling me my thyroid worked perfectly as my tsh never went above 5, i would remind him it had been removed and he said 'well you obviously didnt need it', so i am dubious about test results!

It is hard to find the balance of assertively getting heard and them thinking we are difficult and pushy. I would mention to them that there is no benefit to you being over medicated as you would feel terrible...its not a lot to ask to go back on the slightly higher dose to feel good. There is no proof its your levo that has made your bones thin and your t3 & t3 are not over range. The truth is lots of drs and endos have absolutely no idea and just bluff it. There is no reasoning with them so is a change of dr/endo possible x

[greygoose]

Oh, gosh! your results are difficult to read like that! Makes my eyes hurt!

OK, so your endo adheres to Thyroid Myth number 1 : suppressed TSH causes osteoporosis.

No it doesn't. Long-term over-range FT3 - as in Grave's - increases risk of osteoporosis!

Several subtle differences, there. But, he's not going to prescribe you T3, for many reasons. He he believes that about the TSH, he's going to believe in Myth number 2 : taking T3 causes heart attacks!

If you take T3 - and I really can't work out if you need it, because of the way you've laid out your results - will suppress your TSH even more. Or, perhaps I should say : on a lower dose. So, that probably wouldn't do you any good, anyway. There is nothing else you can take that won't suppress your TSH.

BUT, your TSH will be suppressed because you don't need it. That's what they don't understand. TSH - Thyroid Stimulating Hormone - stimulates the thyroid and conversion. It has nothing to do with bones. I'm sure that if you look through the posts of diogenes, on here, you will find a paper on that subject - pretty sure you will... Have a look anyway.

healthunlocked.com/user/dio...

What's more, you stand a far greater chance of developing osteoporosis - and a hundred other things - if you are under-medicated. But, have they at least tested your vit D3?

[Afshan64 in reply to greygoose]

Sorry if my results are tricky to read. They were in a table but it got altered when I posted here.

I will try to repost in a better format in abit

[greygoose in reply to Afshan64]

It would be better if you could do it one day at a time :

14 Jan 16

TSH result (range)

FT4 " "

FT3 " "

Because to work out how well you are converting, you need to compare FT4 and FT3 tested at the same time.

[Afshan64 in reply to Afshan64]

here they are again.. better presented!

14th Jan 2016

Serum free T3 4.3 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.05 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 17.5 pmol/L (normal range 9 - 23pmol/L)

22 Mar 16

Serum free T3 4 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.13 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 18.5 pmol/L (normal range 9 - 23pmol/L)

03 Aug 16

Serum free T3 4.2 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.04 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 18.6 pmol/L (normal range 9 - 23pmol/L)

13 Mar 17

Serum free T3 4.6 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.12 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 20.7 pmol/L (normal range 9 - 23pmol/L)

9 May 17

Serum free T3 4.7 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.15 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 18.5 pmol/L (normal range 9 - 23pmol/L)

7 sept 17

Serum free T3 3.6 pmol/L (normal range 2.5 - 5.7pmol/L)

Serum TSH 0.4 mu/L (normal range 0.3 - 4.2mu/L)

Serum free T4 18.9 pmol/L (normal range 9 - 23pmol/L)

[greygoose in reply to Afshan64]

Thank you! That's much better!

Now, I can see that, whilst your conversion isn't brilliant - and does seem to be getting worse on the lower dose (which is unusual), in January 16, it was quite a decent level, and has never been over-range, so you have never been over-medicated.

The problem, as far as your ignorant doctors are concerned, is that your TSH is low. And, they know so little about thyroid, that they believe that means you're over-medicated. It doesn't.

However, as I said above, the solution is not to ask for T3 - or NDT, which contains T3 - because your TSH would be even lower taking them! Besides, it's very unlikely that such ignorant doctors would understand what they were!

The solution is to convince them that TSH is not dangerous. But, I haven't seen any responses here that give a link! I mentioned diogenese, did you have a look at his posts?

All I can say is that there was never any clinical justification for reducing your dose, and you should insist that they increase it again to where you felt well. Tell them you take full responsibility, for any problems that may arise - which they won't - and that you are of the belief that a suppressed TSH, in and of itself, has absolutely no effect on bones. Rather than reducing your life-giving levo, they should be concentrating your your nutrient levels, such as vit D and magnesium.

An after-thought : no-one has asked you, but were all these tests done early in the morning and fasting?

[Afshan64 in reply to greygoose]

No ive never had fasting blood for thyroid is that likely to affect Tsh?

[greygoose in reply to Afshan64]

Yes. TSH drops after eating. And, what time of day were these tests done?

[Afshan64 in reply to greygoose]

Often late morning after breakfast!!

[greygoose in reply to Afshan64]

Then you don't catch your TSH at its highest. It's highest early in the morning - the earlier, the higher.

[greygoose in reply to Afshan64]

Just found this. The author is talking about thyroid myths :

"A low or undetectable TSH in a person on thyroid replacement therapy means that he/she is overtreated and will

suffer all the consequences of hyperthyroidism. (Nonsense. The TSH is not a measure of thyroid levels or effects. TSH

hyposecretion is often the cause of the hypothyroidism. Also, the TSH is over-suppressed by the thyroid level peaks that

occur with once-daily oral thyroid replacement. Treatment must always be adjusted according to symptoms first, and the

free T3 and free T4 levels second. It is absurd to claim that a thyroid-treated patient is hyperthyroid just because the TSH is

low--when the patient has no symptoms and the free T3 and free T4 are within the pop. ranges 24 hrs after the daily dose.)"

hormonerestoration.com/Docs...

[greygoose in reply to Afshan64]

And this :

"Higher thyroid levels will cause bone loss. (Wrong. Higher thyroid levels simply increase the rate of all processes in the

body, so if a person is losing bone they will lose it faster, if gaining bone they'll gain it faster! The solution is not to keep post-

menopausal women hypothyroid, but to restore their bone-building hormones: estradiol, progesterone, testosterone and

DHEA.)"

So, have your doctors tested your estradiol, progesterone, testosterone and DHEA? If not, maybe they should.

[Afshan64]

so should i be asking them for NDT?

[Nanaedake in reply to Afshan64]

Sorry, I missed the FT3 results and now with the new post I can see that you have got FT3 results. So March and May results are better than Septembers. If it were me and I felt well in March, I would increase my levothyroxine dose again. It doesn't look like you need T3 as FT3 is ok on the higher dose.

I agree with the person above who says quality of life is more important than dexa scans, you need to feel well or life isn't worth living. As they mention, if you were really overdosed you would feel terrible. Believe me, I have been overdosed!

greygoose makes the point about the TSH being irrelevant because it's not a thyroid hormone but a pituitary hormone. If you are properly replaced it will not need to be responding and telling your thyroid gland to produce more hormone so it will be undetectable or nearly.

[startagaingirl]

Hi - I think it may have been overlooked a bit in the above comments, but as greygoose asked, have you had a vit d test? This, along with it's co-factors magnesium and vit k2-mk7, is the really important one for bone strength, not tsh. It is very common to have serious deficiencies in this with hypo, and that causes all sorts of issues, both of itself and in lack of effective use of thyroid hormones.

Very important also are folate, ferritin and vit b12. All of these - incl d3 - need to be at fairly high levels to be optimum, not just in range. Many of us use private home testing through Medichecks or Blue Horizon as NHS won't normally test all of these. These can also include thyroid ant-bodies to check for Hashimotos, which can then be addressed with diet and supplement paths.

Gillian

[Afshan64]

Thanks Gillian. am in range for vit d and b12 and also take them. Not sure re folate and ferritin I don't think it's ever been tested . I think I will look into home testing. Also am seriously considering seeing a functional doctor if I can find one

[Phoenix605]

I think this might be the bit of research GG was refering to I think I pinched it off Diogenes!

discovery.dundee.ac.uk/port...

I dont pretend to understand the ratios but the two following paragraphs are pretty straightforward

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (<= 0.03 mU/liter), low TSH (0.04-0.4 mU/liter), normal TSH (0.4-4.0 mU/liter), or raised TSH (>4.0 mU/liter).

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T-4 to have a low but not suppressed serum TSH concentration.

The lowest TSH I can see on your list was 0.04 so they would have classed you as low, not suppressed

[Afshan64]

I'd just like to thank all of you for the fantastic advice!

[shaws]

Maybe these two links will be helpful:

hormonerestoration.com/Thyr...

hormonerestoration.com/Thyr...