At last! Sense. So relieved 😅

[Murphysmum]

So, I posted here recently about my gp not “understanding” what I was doing with my thyroid meds, and so refusing to give me another prescription unless I went to see the endo (at my expense obviously).

Given the incredible progress I’ve made over the last year since I got T3, I was upset, angry and worried about this. I was confident what I had been doing was correct and safe (with huge help and guidance from this forum and for which I am incredibly grateful, and a background in science which no doubt helped me get my head around everything) but as the endo’s parting remark last time was about suppressed TSH, I was a bit worried she would be annoyed at me taking things into my own hands.

Well today was the day. I had sent a ‘resume’ of my progress so far already but expected to have to discuss it and justify each change I had made however, when I walked in she confirmed she had “read my essay” 😂 (I did feel like a kid, explaining myself as I wrote it!) and I was completely correct with what I had been doing.

PHEW! 😅 She went on to say that how I had described T4 as giving me a ‘baseline’ was spot on. I told her that since I had reintroduced it I felt the sluggishness and heavy legs returning a bit and she told me in order to combat that I could try dropping it again and splitting my T3 dose up to 5x per day. Perish the thought but if I have to, then I will.

I said I was relieved as I half expected a telling off for having gone rogue but she said not at all, I know my body and this is so incredibly different for each individual that really that’s the only way to do it. She was happy with what I’d done, said it was very sensible and she could see I’d read widely and kept a close eye on all the parameters. She said she could sit and tell me she didn’t agree but then I’d only go and do it myself anyway. Correct. So we’re both happy that I can be in charge of my own destiny and she’s there to support me.

Regards the TSH.... there had to be an “uh oh” right? Again, she was very pragmatic and said that ideally it’s better if it’s not suppressed, as it makes it hard to defend my case. I love it! We agreed that the evidence is not there to prove a link either way with osteoporosis heart problems and when I pointed out that quite frankly, I was willing to take the risk given that my current energetic lifestyle had to be more beneficial than my previous couch potato lifestyle. Again, she agreed , saying absolutely, but just to keep everyone happy, let’s try to keep the TSH above extremely suppressed. I’m happy with that. I personally am not bothered if it is, but if it keeps everyone happy then what the hell.

Result! So she’s writing a letter to the go to advise of my requirement for 50mcg T3/day and she said she will try to word it to the effect that she is happy that I know what I’m doing and I should be left to do so.

Wish I could be a fly on the wall when that letter lands on the gp’s desk!

I am a happy camper 😁, thank you so much to everyone here who has offered advice... though I suspect I’ll be here for a while yet!

[Marz]

... the post below yours from diogenes maybe helpful too - if you don't already have it 🥰

[Murphysmum in reply to Marz]

I saw it, thank you.

Very interesting and bookmarked!

[greygoose]

Again, she agreed , saying absolutely, but just to keep everyone happy, let’s try to keep the TSH above extremely suppressed. I’m happy with that. I personally am not bothered if it is, but if it keeps everyone happy then what the hell.

The hell is that you are obliged to reduce your dose so much that you make yourself ill again. The TSH is what it is, you can't fiddle around with it. You have no direct control over it.

But, well done for your A+ in Thyroidology! lol

[Murphysmum in reply to greygoose]

Well I clearly know more than my go on this particular subject, so I’m happy at that! 😂

I know. I don’t necessarily agree with this - I’d have been happier with a “who cares what the TSH is” conversation but we can’t have everything!

Until it becomes suppressed, I have nothing to worry about. It hasn’t changed all that much over the last year and I’m hoping (😬) that I’m around about optimal so fingers crossed.

Watch this space!

[greygoose in reply to Murphysmum]

Let's hope so.

[london81]

i’m noticing that there are more and more success stories like this. i had an endo who was happy to monitor me on NDT although didn’t prescribe T3 ( that’s my next battle). but a few years ago i don’t recall hearing anyone at all saying endo or GP even accepted patients knew their bodies best, needed t3 etc. well done you on reading, researching, asking questions and fighting your own corner! i’m a lawyer by trade and find it easy to fight for others but fighting for myself is much harder!!

again well done and hope it’s all good from now on