So I've booked an endo appointment for 2 weeks time. (TUK approved! )
Could someone talk me through what to expect please?
I'm thinking endo might try increasing levo first but on the off chance that I do get a T3 trial is there something specific I need the prescription to say?
I just want to prepare so I don't have to spend more in consultancy fees than I have to...!
Also, as he's also an NHS doctor does that mean there might be the possibility of the NHS taking over my prescription one day?
I've had various NHS endo appointments - and one private appointment (for a second opinion)
NHS: very very brief. Based in the diabetes clinic at the hospital, I'm weighed and left for a bit before seeing the Great Man - which usually lasts between 30 seconds and 2 minutes ...
Private: running late but excellent coffee on tap. Had a good 40 mins of the endo's time - and had been asked to send, in advance, details of latest blood and my "thyroid journey" - so he had a full background and the time was all productive. [He also has an NHS clinic, but doesn't "do" lio on the NHS ...]
In your case, I assume you can send him your blood results and background info in advance, and when you see him, you can find out if he will accept you as an NHS patient getting lio going forwards - but basically, I would suggest
* if poss can you take someone with you, as it's useful to have a third party to emphasise how you aren't currently properly "you" - and to remember anything you forget?
* go armed with a list of symptoms you are still feeling, and how you don't yet feel properly well, despite excellent free T4 results
* My T4 is 85% through the range and T3 is 40.54% there in a nutshell is the issue: free T4 nice and high; conversion poor; not feeling well enough. You cannot know until you try it, how you might get on with combo therapy, but your results would suggest you are a pretty strong candidate to try it. After all, if not, what else can you do, given that levo is only taking you so far?
Thank you! This is so helpful. I've got the choice of a face to face or video call. I'm not sure which I should go for. Video call saves travelling for an hour each way but then maybe that would be more useful for him to actually see me.
I guess I'm just a bit worried that my conversion isn't bad enough and I'll just be left like this. Which is better than it was but I'm only 35! The thought of a lifetime of this is just intolerable.
I'm also worried about being prescribed T3 and the possible financial implications going forward and scheduling my eating around taking meds... The logistics hurt my head! 😂
Face-to-face, DEF, ideally with a friend. Then he can have a good look (and feel) of your throat if he wants and you can see each others' reactions properly.
You can currently get lio for £1 a tablet (20mcg) privately, which isn't too bad, esp as you may well find yourself happy on 10 mcg a day - like me but if he will take you on as NHS patient later, so much the better.
Don't worry about actually taking the lio - just start low and slow - reduce levo first (if he wants you to) then a week later start with 5 mcg (or 6.25 if 25 mcg tablets) which you take with the levo, then a week or so later add another dose well-spaced from the first and build up like that to a full tablet (if that's what you're prescribed). Stop en route if you feel well. Re-test bloods. Lio isn't as fussy as levo when it comes to taking other meds, so that should make no difference to you.
Be strong, be happy and crossing fingers for you. Let us know what happens x
Hi Plant_LadyI can only echo what fuchia-pink said. Go prepared.
Take your blood results or send it to him beforehand.
Write down your symptoms and your ‘thyroid journey’. when did you first have symptoms, what did you do etc
Write down all vitamins and supplements you are taking as well as all other meds.
Take someone if you can but if not write down all the questions you and family & friends can think of.
I was convinced I needed T3 but T3 was difficult to take and had powerful side effects.
I went back to Levo and after 6 months of slowly increasing Levo, I am now feeling really good, so worth giving Levo a good chance, keeping an eye on your ranges of both.
T3 is a very tricksy hormone and expensive. If you can get well on Levo that seems to be the best answer for a lot of people. You might have to increase your Levo slowly over months to see if you can convert properly.
I believe is very difficult to get it on the NHS. For that you have to be referred to an NHS Endo, who has to be convinced you cannot convert T4 to T3.
Whatever happens you end up doing, I hope it all goes really well for you and you feel better.
I agree, I'd rather stay on levo if possible but on 125mcg my T4 has been as high as 96% (T3 - 45%) through range although currently 85% (T3 - 40%) so I'm already high in range so there's not an awful lot of room for increasing there.
Sounds like you would absolutely benefit from T3. Luckily there are so many great people on here who can recommend how to take it. Low and slow 😊 (some say start with 2.5mcg per day)
And I totally get you about half life. I felt like that, like I had everything to live for but couldn’t enjoy it. It’s not fun to dread everything including things that should be fun like your own birthday party.
I wish you all the Best and hopefully you will feel better soon.
Having just said that, I didn’t start to feel better until my T4 was almost 100% through the range and my T3 was 75%. My Endo said he’s seen quite a few patients who feel better at that very upper range.
Yes, I felt my best when T4 was 96% through but I think that's because it dragged my T3 up to 45% which was the highest it's ever been.
I mean it's all just guesswork but for me, it feels like T4 has reduced my brain symptoms but not my body symptoms. So I'm wondering if a higher T3 with reduce those symptoms.
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but if he will take you on as NHS patient later, so much the better.
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