I am on 75mcg LT4/ 20mcg LT3... the last two blood results have been a <0.05 TSH and my Endo got exercised about my cognition function declining (see my last post).
Since then, I changed from LT4 TEVA oral solution to TEVA tablets and I am on this very restrictive dietary/treatment protocol - with lots of supplements/anti-microbials for my gut dysbiosis and damage.
Any way I am wondering what he will make of these results on 29th Sept clinic and I dread him focusing on the TSH and reducing my LT4/LT3 further - I am just starting to feel strong on this dose. He is useless and I do not have the energy to argue with him anymore!
Does any one have any thoughts?
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amasufindme
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Good point Nanaedake - thank you - I don't trust him anymore as I know he is only pretending to be a Thyroid Endo. He has dismissed my DIO2 gene polymorphism heterozygous result as bogus and refused to put anything in a report about that, when I asked him to. He has also stated that LT3 is going to be withdrawn no matter what!
I am actually thinking about not going to this 10 minute appointment because its a hard journey for me [4 buses + 6 trains return] and I am not well. I am just wanting to "stick my head in the sand" and see what ridiculous report he cooks up for my GP!
I wish I had money to go private...or should I say I wish I had money to move out of this silly country
The NHS just doesn't do basic healthcare and they make it so overcomplicated by dishing out ever more prescriptions that we don't need with all the attendant side effects rather than balancing our bodies needs and looking into underlying factors that are keeping us ill. It doesn't sound like the Endo is interested in getting you well but would rather hang onto his job at your expense since he's towing the line on T3. I don't think I'd want to waste my time on another fruitless journey either. Perhaps you could write and point out that his approach is not helping you to improve or get better which is your aim and you'd like a referral to a thyroid specialist. Thyroid UK have a list of helpful Endocrinologist, perhaps try one of those or just work with your GP and get help from this forum instead?
Good ideas thank you - I will push the pause button for now and rearrange the appointment... hopefully the new doctor will listen and help me find a new Endo .
This Endo I have is on the TUK list and over the 2 years his care/integrity has been surgically removed - I sense he has been reprimanded too many times and yes is now towing that line regardless of duty of care.
My dilemma is my DWP support depends on an Endo presence "it must be serious because she is seeing a consultant"...and also I think LT3 prescription might go the way of "Endo only"!
Maybe you could point out to the DWP that you have had a critical medication removed due to careless government dictats and you have provable blood test evidence that your FT3 is below range, you are deficient and without the correct thyroid hormone replacement you are going to become increasingly disabled with absolutely no hope of ever recovering?
I think it's going the way of private script only... only the rich deserve to be well, didn't you know that? Hopefully you can convert levo - T4 and T3 are below range so it's not like they are at extremes plus levo is cheaper if you have to self medicate
When you get to the point where you no longer trust the treatment your endo and doctor are giving you. You need to find someone you do trust.
The testimony of my peers, some of whom have travelled the length and breadth of the country looking for clued-up medics. Were I to have listened to nhs/private medics, I would be living a half-life, unable to function. There's a time to forge on and a time to give up and stop banging one's head against the wall. I reached it and amasufindme you appear to be heading in a similar direction if you are expected to achieve anything beyond exhaustion likely to last days with such a journey for a 10-minute appointment. Can't you call his secretary and explain?
I have no medical training amsu, but sometimes you have to shout at the devils keeping you ill and look for alternatives. Best to you, whevs. 🤗
Well said Rapunzel...this is helluva of path to crawl along. Since 2012 diagnosis I have gone through nine GPs. Next week I am transferring over to a new practice after my last GP pulled my character to pieces in a referral letter and been repeatedly obstructive.
This Endo is my 2nd referral and I was given to understand that I have now exhausted any more chances of being referred to another NHS Endo...is this not so?
Visiting the Endo is a pantomime (its only 71 miles away) but by public transport takes 10 hours of my day... is stressful and I do have secondary adrenal fatigue - which of course doesn't exist. As a low life form, aka patient, I am not allowed to contact his secretary (whose name he can't remember!) and have to go through my GP... so during this transition I have decided to stick the proverbial *** *** up at them and email her with new GP details, say I am unwell (solid truth) and rearrange appointment for now.
Lets see what the clown does with those results...
How about you accept the medication he is prescribing (if you are beginning to feel strong on it - as you say) and take it in the dose which suits you, i.e. keeps you feeling well. This is pretty much what I do, doc thinks I am on 1.25 grains NDT but I take 1.50 grains. I run out of pills a little faster than I should but he doesn't count the days. This has been an acceptable arrangement for three years now - I have TSH close to zero (for over 10 years), no heart problems and no osteoporosis. Present doc is my fourth Endo. Don't be afraid to change docs if your current one begins to get ridiculous, my current one is not perfect but the "arrangement" seems to be working out.
I prescribed my own. I know no one in NHS will dare prescribe NDT! I did inform my GP and said it was because she was not allowed to prescribe T3. I also told my endo who did not even comment!! He is still seeing me now Once a year.
We don't have an NHS here (in US), we have insurance groups, I am in one of those. I get my NDT through one of their doctors. The only NHS-like thing we have is Obamacare and we are fighting like hell to keep that, like, having a vote next week! Should Trump's bill pass, millions of people will not have health insurance, it's really a terrifying situation.
I will be thinking of you LAHs with the vote next week on Obamacare and I truly hope for the best - it seems that it is a time of madness for our healthcare!
Check that Endo by name online and find out what his specialism is. Keep looking until you find out! Bet he is most interested in Diabetes! Large hospitals have specialist endos in Diabetes and Thyroid separately.
I have checked his website and because he is on the TUK list still, I thought he would be ok . Even though he states he is holistic and has an interest in thyroid... he is defo diabetes. I don't know whether Calderdale Royal Hospital would be considered large??
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TSH Suppression
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