Should I add in T3 and where do I source it ?

[Ratkinson]

I have been panhypopituitary ( 27 yrs) due to a pituitary tumour . I replace all pituitary hormone including levothyroxine as I don’t make TSH .

My endo team only check T4 which is always running at the top of the normal range . At my last check I was asked to reduce my dose as it was about 2 points over. I argued that I was a bad converter of T4 to T3 ( been trying to up my ferritin for the last few years , I’ve got it to 52 from a low of 8). Anyway I complied and reduced but said I wanted my T3 testing. My GP did this . My T 4 was mid normal range and T3 was right at the bottom of the normal range after 5 weeks of adjusting my dose. I feel awful. They don’t want me to increase my levothyroxine so I would like peoples thoughts on adding in some T3 ?

About a year ago I experimented with switching to NDT ( under a private endocrinologist ) but it made my adrenal insufficiency very unstable, so I went back to levothyroxine only..

All my other bloods are optimal .B12 , vit D , folate etc I can’t post actual values as patient access is no longer giving me a cases to my results!

Where do I buy T3 ? If someone could pm me that would be great. Thanks

[radd]

Ratkinson,

I don’t know if anyone DM’ed you their T3 source but I would say if your adrenal insufficiency prevented NDT from being tolerated then go easy when introducing T3 meds. 

The advantage of T3 v NDT is you can manipulate the T4/T3 ratio much easier and introduce low and and slow. However, there are many reasons for low FT3 levels when FT4 remains high and a common one is inadequate cofactors such as iron, and other essential nutrients. In this case adding T3 meds together with your adrenal insufficiency could make your T3 intolerance even more pronounced. 

Even if the online app isn't working you are still legally entitled to your results from your GP surgery. If you post any results complete with ranges (numbers in brackets) members will comment.  Alternatively, let us know how you are getting on with T3 😊.

[Ratkinson in reply to radd]

Thank you , I’m going to give it a go. I’m just about to buy some but thought I’d wait until the chaos from Xmas post and strikes was over.

[SlowDragon Administrator]

Suggest you consider seeing a pituitary, adrenal and thyroid specialist endocrinologist

Roughly where in U.K. are you

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

[e-mail]

[Ratkinson in reply to SlowDragon]

Thank you, yes I’ve been under a specialist endocrine unit for years- unfortunately they won’t prescribe T3 and always want to lower my T4 . I don’t convert well to T3 so when I reduce my levo I always feel totally rubbish and the T3 is at the bottom of the normal range. My endo is happy for me to source my T3 and says he will monitor it. I see him mid Jan , so I want a plan in place.

[SlowDragon Administrator in reply to Ratkinson]

If your endocrinologist says you have clinical need of T3 they should prescribe it

Price charged to NHS has dropped considerably now there are numerous suppliers

Roughly where in U.K. are you

Number of prescriptions is increasing by Approx 500 every month or so

Typically 6 prescriptions per person per year

Searchable by area or by GP practice

openprescribing.net/analyse...

[Ratkinson in reply to SlowDragon]

I’m on the Wirral, I had a very disappointing zoom call last week, poor sound quality, feedback and obviously quite a junior Dr . He was adamant my levels were fine as they were within the normal range and my TSH was suppressed ( which they would be as I have no pituitary) . I shall wait for my letter to arrive and then write back, I seem to do better that way .

[SlowDragon Administrator in reply to Ratkinson]

Presumably this is NHS?

Could you afford private consultation initially……then hopefully getting transferred back to NHS once settled on prescription T3

[SlowDragon Administrator in reply to Ratkinson]

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3

[e-mail]