Endo redeemed, a good consultation and outcome... - Thyroid UK

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Endo redeemed, a good consultation and outcome...

Clutter profile image

6 months ago I had a disastrous consultation, was assured FBC was fine and therefore ferritin, vitD, B12, folate etc. would be fine (they weren't) and FT3 below range was ignored. That's when I started experimenting and self-medicating.

I expected to see his colleague and wasn't at all pleased to see him. He looked moody when I told him GP reduced T4 (TSH isn't suppressed as it should be), incredulous when I told him I stopped meds in Nov and we had an argument when I told him I was self medicating with T3 and that would suppress my TSH in future so he should stop worrying.

He said there was no evidence that combined therapy was beneficial. I said there was plenty. He said it was poorly researched and presented. I said there were excellent American studies. He rolled his eyes, I asked if he would prefer European studies. We agreed to disagree.

He put his hands around my throat and I wasn't sure if he was about to throttle me or palpate it :-D

He asked where I would get T3 and I said internet because CCG instructed GPs not to prescribe. He bridled, wrote me a script for 4 weeks and said he'll write to my GP instructing combination therapy!

He was very interested in the fact I take T4+T3 together and at night. I explained that T3 seems to calm the unpleasant T4 effects, particularly palpitations, and I can have a morning cuppa without worrying about taking meds on an empty stomach.

He accepted with equanimity my decision to opt for lower meds and a better quality of life now rather than over medication for 5 years to reduce the risk of cancer recurrence.

The only downer is the thyroglobulin results weren't available because I tested late but he'll write to me as soon as they are.

Lastly, I managed to walk a mile from the hossie in ten minutes before collapsing panting and aching into a bus.

28 Replies

Wow. Kudos to you. I'm not sure I would be confident enough to argue so tirelessly. But then it also sounds like you're better read on all the research than I. I seem to be doing ok on T4 only for the time being, but do you have any recommended reading, or websites, about combined treatment? Thanks!

Clutter profile image
Clutter in reply to molliemdz

Paul Robinson's book Recovering with T3 is a recommended read. He posts here and also has a FB page.







molliemdz profile image
molliemdz in reply to Clutter

Thanks, Clutter!


Well done to you! It helps if you can make yourself well enough to argue! :)

Clutter profile image
Clutter in reply to Aurealis

Well, yes, and it ain't right. I needed help and support last year. I'm well enough that I could manage without his nibs this year.

Well done Clutter,all your hard work is paying off. I wish I and others had your strength to stand up to endos.xx

Clutter profile image
Clutter in reply to beaton

I didn't 6 months ago when I needed support and understanding :( It's a sad indictment on the medical profession that the help I needed and got has been from fellow sufferes and fora like HU.

molliemdz profile image
molliemdz in reply to Clutter

Agreed! But thank goodness for HU (& other fora); otherwise we'd really be up the creek.

Great result. You must be very pleased and hopefully others will benefit from your ( or do I mean his! ) experience. :-)

I do hope so.

Brilliant! I'm also trying out combined T4/T3 after a long and weary battle with my present and past GP's so it's good to know the results of others who are succeeding on the same journey. At the moment I'm trying to suss out how best to take it that will work for me, as I've been given the combination therapy but no actual advice on how to take it! I'd be really interested if you could direct me to any good sites that will give me some guidance, obviously I've had a look around on the internet, I've also bought a book on T3 treatment as recommended on this website, but I still feel that I don't really understand enough and don't want to waste the opportunity that so many people are still struggling to get?

Clutter profile image
Clutter in reply to Revsie

I've posted links in my reply to Molliemdz but they don't really suggest when to take T3. It's a matter for experimentation.

T4+T3 in one dose at night suits me now. I'm still not very active and don't know whether I'd experience an afternoon slump when I'm up and running.

There have been many posts on HU. Search?

Revsie profile image
Revsie in reply to Clutter

Thank You Clutter, I'm taking both mine when I first get up and am going to try a second dose of T3 early afternoon - as you say it's probably what suits the individual?- I'll do some searching on HU now as well. Good luck with everything

Brilliant! I laughed out loud at your description of his getting you by the throat.


Clutter profile image
Clutter in reply to Holly10

Lol! His timing was extraordinary.

kosmickaz profile image
kosmickaz in reply to Holly10

So did I!! :-D

Brilliant News!

Thank-you for sharing this - it gives me hope and the throttling bit made me smile - I am sure the doc I saw at my last appointment wanted to do that to me when I had the gall to ask him about T3 , FT3, FT4 Vit B12 and Vit D :-)

Clutter profile image
Clutter in reply to Mrs_Somerset

I didn't expect to see him and my expectations of the consult were so low I just said what I thought, what I was doing and what I would continue doing.

I hate my throat being touched. He was very gentle. I would have given a not too gentle squeeze.

Sometimes when you have low expectations you can be much less guarded!

Way to go! Are you sure your feet were touching the ground when you walked out? I would have been walking on air had I managed to have a conversation like that!

Clutter profile image
Clutter in reply to chihiro

They may have been floating when I left. By the time I walked the mile my hips and knee joints will testify that feet were definately pounding the pavement:)

LOL (hands round throat) .

Inspiring thank you for sharing. The doctors seem to have stricter and stricter protocols to work to these days it is so very hard to be treated as an individual.

Clutter profile image
Clutter in reply to Karunablue

I was just about to remind him that patients are individuals when he said that. If he's a mind reader he won't have been flattered at my opinion of previous consults.

Fab - well done you!

My gp prescribed me antidepressants and told me that there was 'no evidence' that they worked better than a placebo but refused to prescribe t3 (on endo's request) because there is 'no evidence'. Apparently 'no evidence' is only an impediment in, um, certain circumstances - ?

Oh, and my NHS endo suggested my dose had been changed too much over time (after seeing another doc) and he wouldn't be able to oversee my treatment, which is true and fair enough, but what I didn't say was that I had regular contact with the other doc who was treating my symptoms, whereas NHS endo saw me 2-3 times per year and advised to keep taking the meds as usual. So no, I guess he couldn't oversee treatment that did not consist of just doing the same thing regardless of how I felt.

If the endo saw you more regularly or just had your TFT sent to him for review he could oversee your treatment if he wanted to.

Mine did look cross that GP reduced my dose 'cos my TSH was no longer suppressed. He didn't realise GP was getting me back on track after I went off meds and that I said I'd do so again if I continued to feel so poorly. That's when we discussed QoL now vs future risk.

When I told him who my GP was, he said he was one of the brighter students who'd worked in diabetes with him.

Nothing in past 18 months consultations and particularly the one last August would have pointed to the positive consultation we had yesterday. I'm still gobsmacked.

Yes, you're right, endo could have helped but to be fair the other doc is just too dynamic and does change it up regularly according to symptoms and endo wouldn't treat me that way and I suspect he didn't approve. I see no point in feeling ill for months and months to be told that my numbers are okay and keep taking the pills.

Isn't it interesting. Sometimes I suspect that docs, largely being driven type A personalities, look down on desperate and helpless patients (how I often feel when driven to see the doc) and when you show some initiative they can't help but feel some respect. Also the controlling ones might see you as a loose cannon and feel driven to take you on. :-)

I'd prefer dynamic doctor treating symptoms anyday.

While I'm happy with yesterday's outcome, I ain't going to forget the feeling of despair and hopelessness I felt 6 months ago. I should have had that support and consideration then, when I desperately needed it.

I walked into yesterday's consult wondering whether the Joint Thyroid clinic monitoring was for my benefit or the medics. I hadn't felt that I benefited and the return journey for bloods and again for consultation wiped me out for days.

I just wish yesterday's positive outcome could have come 12 months ago. It would have made such a difference to my recovery.

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