Ongoing T4/T3 battle - latest results

[Lindslou]

Hi Everyone,

I have seen a endocrinologist and she agreed I should take T3. My GP won't pay for it so I have to buy it abroad. I am taking 100mcg T4 (levothyroxine) and 30mcg T3 (Cytomel).

My recent lab results are:

FT4 14.2

FT3 4.9

TSH <0.01.

I feel great but my consultant now wants to lower my T4 to 75mcg as my TSH is too low. This will mean my FT4 is likely to fall below the normal range.

Whilst I understand keeping the TSH too low can lead to heart problems and osteoarthritis, I am concerned that my FT4 and FT3 levels are being ignored.

I have read somewhere that as I have had a total thyroidectomy following cancer, TSH can be very unreliable as a measure. But I haven't seen much other information about this.

Happy to take advice on whether I should just go along with what the consultant wants, or where to get evidence to argue with her please!!

[SeasideSusie Remembering]

Lindslou

Have you got the reference ranges for your results please.

I take a combination of Levo and T3 (the T3 is not prescribed nor is GP involved).

I have done a lot of tweaking of doses and found that I need both FT4 and FT3 to be around 75% through range. FT3 lower than 50% I'm not good and if it's at the low end of range then I am very unwell.

I haven't had thyroid cancer but have read that if you have then to keep TSH suppressed to help prevent reoccurrence.

[Lindslou in reply to SeasideSusie]

Hi,

Unfortunately I have no choice what my T4 dosage is as the consultant keeps interfering!

The reference range for T4 is (12-22), for T3 it's (3.1-6.8), TSH (0.27-4.2)

My TSH was completely suppressed for 15 years following cancer, but now I'm in a low risk group for reoccurrence they want is to be in the lower end of normal.

I've gone from 225mcg to 100mcg in 18 month. I lasted until they dropped it to 125mcg and then had to find some T3 as my levels had dropped below the range and I felt awful - could barely get out of bed!!

I find it strange that my T4 will probably drop below the range now that they want me to reduce it again - but all they care about is the TSH level!

I love my T3, I get it from Mexico. I lived with joint pain for 15 years, and thought it was because I was unfit - but it went away when I started taking it!

[shaws in reply to Lindslou]

They haven't a clue how T3 makes us feel and also relief of symptoms. I self-source my T3. I am not going to be persuaded to go back to anything else or to be forced to keep my TSH in range. The difference is between having a pain-free and active life to not knowing what to do next when levo doesn't make any improvement but worse and also having to go to the A&E often with severe palps - have had none since on T3.

One of our Adviser's patients only had a blood test for the inititial diagnosis and thereafter it was all about relief of symptoms.Why cannot all doctors do this????

web.archive.org/web/2010103...

[Airmed in reply to shaws]

Shaws do you take T3 only?

[shaws in reply to Airmed]

Yes

[shaws]

If we add in T3 or take it alone or take NDT, the blood tests will not correlate as they were introduced along with levothyroxine alone i.e. T4. Usually with T3 and/or NDT we can feel fine with a suppressed TSH.

It is all about how we 'the patient' feels and if you feel well I would stay at that dose.The TSH will be low or very low when T3 the Active Hormone is added.

Also someone whose had thyroid cancer has to have a suppressed TSH and I doubt they are harmed.

A past post with info:-

healthunlocked.com/thyroidu...

[shaws]

If you feel good, do not alter your dose. Your body knows best not the doctors.

Write or email your local MP as they had a debate in Parliament last week about the withdrawal of T3 from patients. Also about the extortionate cost of it now.

This is a link:

healthunlocked.com/thyroidu...

[silverfox7]

First thing one of my better informed experts told me is that on any form of T3 the results are read differently. TSH will be suppressed, FT4 can fall in the range but FT3 should be high in the range. He also said the only accurate one is the FT3 reading sndctgat we can no longer see if we are converting well from the labs. FT 4 can fall so no longer a definite figure so no comparison.

[Hidden]

After I had my thyroid removed here in France a letter plus a copy letter was sent to my GP to make sure that my TSH level was kept suppressed, mine has been very low for nearly three years now.

Most GP's don't understand anything to do with the thyroid.

It's a question of how you feel which is important. Your FT3 is on the low side.

[penny]

And there I was thinking that if an endocrinologist prescribed/recommended you take T3 the nhs would pay for it. Isn’t this what the new guidelines say? I don’t know why the medical profession bangs on about a low tsh or high T3 causing heart problems, the opposite seems to be true. They are also fixated with osteoporosis and thyroid hormones and yet there is a paucity of evidence for this.

[trelemorele]

Are you challenging your GP for refusal to prescribe?

I would.

I'm not saying stop sourcing yourself but I'd fight the GP and complaint to everyone and made a lot of stink for your GP.

I've had exactly same problem with joints pain and swelling on t4 only.

One of the common denominator for t4 adverse effects.

[Lindslou]

Thanks everyone, good news is my GP will now fund the T3 prescribed for me by my consultant. I still need to lower my T4 but my hypo symptoms are only mild at the moment so I’m going to wait and see how I feel. But weirdly I’m really hungry so wondering if less T4 is making the T3 work better - hope so as struggle so much with my weight and this obviously doesn’t help joint problems!!