Advice on options for self medication please

[Mickeydooley]

After three years on a three month trial of T3 I’ve finally given up! Every three months I have to fight my corner to keep getting t3 because my TSH is suppressed. I received suggestions here a while ago to reduce my meds prior to my appointment as it seemed the only way to ensure my hormone levels weren’t high enough to give them an excuse to reduce my meds.

I finally received the results of tests done over three weeks ago!

Having reduced my meds my results were:

TSH 0.01

FT4 11.8 (12-22) below range

FT3 4.2 (3.1- 6.8) 29.7% through range

Apparently I’m still over replaced because my TSH is suppressed 😩🙄 but they have agreed to leave me on my current dose until my next appointment in three months time. I can’t keep messing about with my medication and am now considering my options with regard to buying T3 or NDT. Any advice would be appreciated. 🙏🏻

[SeasideSusie Remembering]

I think I'd be inclined to stop wasting time and take things into my own hands. Relieve yourself of the frustration of trying to keep the endo happy at the expense of keeping yourself ill.

If you are doing well on T3 and it's right for you then source your own, ensure you keep a regular eye on levels (do your own tests), accept that TSH will be suppressed when taking T3 and keep a keen eye on your FT3 level and your symptoms.

[Mickeydooley in reply to SeasideSusie]

SS thanks for the response. I agree. I can’t keep doing this. I guess I had already decided that’s what I was going to do but I just don’t know where to begin. I don’t know how difficult it is to buy t3 or if I should be looking at NDT or WDT. I already monitor my own levels at least three times a year and also if and when doses change. I’d be grateful if anyone would message me privately with details of where these could be purchased.

[SeasideSusie Remembering in reply to Mickeydooley]

Decide if you want to use Levo plus T3 or NDT. Bear in mind that the only non-presciption NDT seems to be Thyroid-S and some members have recently commented on recent batches being different and not as effective as previous batches. The manufacturers have even said that batches can differ and it's important to test and adjust dose if necessary.

If you decide on Levo plus T3 then can you still get your Levo prescribed? If so all you'd need to source is T3, if not then both can be sourced without prescription.

Make a new post specifically asking members to PM you with details of a reliable supplier. The post will be closed to avoid any details being put on the forum. Then when you have some recommendations send me a PM to ask if I have any feedback on the sources that you have been given - there are some dodgy dealers so it's always worth checking to see if I have any feedback. Admin can't recommend any sources but feedback given by members can be passed on.

[Mickeydooley in reply to SeasideSusie]

Many thanks for the advice and information. I currently take levo and t3 and would be happy to continue with that. However I’m concerned that if I don’t return to the endo clinic at the hospital they might cancel my script for both T3 and levo? I was on levo only prior to being referred to the clinic so hoping that if they do retaliate they will only cancel my t3 and my gp will continue with the script for levo.

I will make a new post as you advised. 🙏🏻

[arTistapple]

I am just about to see a private endo. I decided to tell my GP so that I would be doing minimal stuff behind her back and hoped she would leave me alone to get on with it. Partly also out of respect (unfounded) and trying to maintain some sort of relationship, should I need it. Earlier this week she told me my prescription would not be paid for be paid by the practice, blaming it on the CCG. I assumed (silly me) that would refer to the T3 only IF prescribed. SeasideSusie has made me question even if they will keep on prescribing Levo. Like you highlighted, we don’t need the stress. If this happens I will definitely take it up with my MP.