I've run out of patience with my NHS endo. I requested a dose increase by email in early july on the back of my latest test results and endo man said he'd think about it. I chased a week later and apparently the poor chap got seconded to A&E... so I never did get a response and took matters into my own hands. As you do.
I messed with my dosage myself and landed on 112.5 T4 + 2 x 5 mcg T3 (from 100 + 2 x 5) and finally feel pretty well. Amazing. I didn't tell him I'd done this - why would I - asking permission didn't work, so I opted for asking forgiveness at a later date! I then asked for more T3 by email because I was running out... and got no response, just a letter requesting that I attend an appointment in September. Fury doesn't do justice to the way I feel about that. He's basically stopping my T3 in the short term (and presumably long term?) without even having the blinking grace to tell me so. I have been unwell on combo therapy for 7 months before I titrated the dose myself... He is probably reluctant to up my dose because my TSH is a shudder-inducing 0.11 on the standard UK range. Seriously.
So, I am running out of T3 but have some of my own little contraband stash. I'm thinking that I should probably carry on with that and at least I can present him with some blood test results... and he can have a cow, or prescribe. If anyone has any other ideas how I should handle it, I'd be grateful. I'm thinking I could just go back to 100 mcg T4 as that's what he's assuming I have to do to "prove a point", but I"m not sure what point it proves.
I guess it would give me the opportunity to whine about my symptoms in depth and I would ask for T3... or all of the following:
- counselling to help me come to terms with the fact that the NHS refuses to adequately treat my hypothyroidism and somehow managed to gaslight me for the best part of 3 years
- some kind of note to present to my next employer explaining that whilst I am treated as well as they can manage I have a disability because they can't do any better and will need special arrangements made
- a prescription to manage the joint and muscle pain
- a prescription to improve my female hormones which are much better since starting T3
- a test for coeliac disease
- a prescription to manage depression caused by lack of T3.
What do you think?
In the meantime, I've been amusing myself by inventing collective nouns for endocrinologists. My favourites so far are:
- a deafness of endocrinologists
- a patronisation of endocrinologists
- a paternalism of endocrinologists
I'm happy to hear more!!
Lotika.
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Lotika
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I treat my own thyroid as much as possible. I can't be bothered to argue with doctors any more. I do worry about running out of money though, or the law changing here or elsewhere so that buying our own is no longer possible.
Yeah, the chances are I’m going in that direction… I’m still going to be under the care of the endo for a different condition, which is slightly concerning. I don’t think I can change without going outside the CCG, which presumably isn’t allowed or we’d all be travelling miles and seeing the same sympathetic NHS endo to get our T3 or NDT wherever he or she is based! Not that I’ve researched that, so maybe I should as I know which one I’d want, personally! I’m furious that I stuck it out just to get the NHS prescription… but I learned a lot along the way, so I’m better educated and more confident to self medicate than I would have been 7 months ago…
I do worry about running out of money though, or the law changing here or elsewhere so that buying our own is no longer possible.
That was what was partly behind my recent ill-fated experiment to replace more of my NDT with Levo. I tried to go too quickly with it and I’ll give it another go once I’ve got over the damage I did (much more slowly)—but it terrifies me that there may come a day when I can’t get any brand of NDT, never mind my favoured brand.
And as a self-medicator, the other terrifying thought is what could happen if I encounter a doctor determined to prove I never should have started taking thyroid hormone replacement in the first place. My TSH is pretty much stuck in the “off” (suppressed) position these days, which is a bit of a problem, given it’s all many doctors think is relevant. They’ll have me on 25mcg Levo, practically dead and still insisting I’m overmedicated, no doubt…
My TSH is pretty much stuck in the “off” (suppressed) position these days
This has gone through my head as well. If I have to go without thyroid hormones of my choosing and in the amounts I do well on I may as well go the the beach, take off my clothes, then swim out into the sea without looking back. (If I swam with clothes on I wouldn't get very far and I'd probably end up back on the beach. 🙄 )
I’m now trying to work out the pros and cons of swimming to one’s demise in clothes. I guess it wouldn’t matter if I washed up naked, but I pity the poor soul who’s the first to clap eyes on the sorry sight that would be. Scarred for life.
It’s a worry alright. For now, I guess I’ll keep plodding on and keep all fingers and toes crossed that I can continue to get hold of what I need.
Oooo - a dismissiveness - strong work! Thank you! I am writing notes to read to him in the appointment so that I can manage it without crying or getting so angry that I start effing and jeffing, or most likely, both!
I identify with your insecurity and feeling precarious. I explained this to my (lovely) endo in December when he started seeing me again. For 8 months I had no contact with him. He was put on the wards and then got COVID, developed pneumonia. I couldn’t get T 3 prescriptions, not the brand of Levo that I wanted. I became horribly ill and couldn’t get help. I was about to start sourcing my own meds when he reappeared. Every appointment he gave me was cancelled by the bureaucrats and it is still happening. He is now back in outpatients on the other sit. At my last appointment he made my next one in 8 weeks on 10 September. Because he was running late the guy on the desk who prints out your appointment had gone for lunch. If you don’t get the appointment in the post within a couple of days. You go on a waiting list. That is what has happened. I rang appointments but can’t find out who makes the decision that I can wait. My GPS have issued me with a prescription for 20 days of liquid Levo and the totally wrong dosage of lip. Fortunately the pharmacist I use had been kind and dispensed the right lio and enough of it And got the right Levo. I let her snapshot my copy of the copy of the letter to the GP so she is covered as it states quantities. But I can’t get it corrected. They refuse to give me an appointment to discuss it with someone with the nous and authority to put it right, And out of misunderstanding, have issued me with another wrong prescription and sent it direct to pharmacy urgently before due date is reached. She has corrected it again but will be on holiday shortly And says replacement pharmacist will not do that. All I can do now is send a letter and hope someone who can understand what they are doing wrong reads it. It is all this rigmarole that I have to go through that I find the most depressing . So yes, I too have considered what I will do to end it. It seems preferable to depart than keep letting them make everything worse.
I too wrote an essay for my endo. Took my husband for first time too and didn’t have to read my essay. After two years of tooing and froing and testing all sorts and trying lactose free levo she capitulated and suggested 5mcg of lio. Good luck. X
Thank you! Just a shame that I stuck with the endo man so as to get the T3 on prescription as I think I would have got here faster myself… and it’s looking like I’m not going to get that prescription which I’m annoyed about. But you never know… it’s not over until the endo man sings!
That’s the collective noun I’d go with. Singular—Endoknob.
I’m so sorry Lotika. We hear so much of what you’re going through here. I think I’d carry on self medicating in your shoes. You shouldn’t have to—but your health is way more important than your Endoknob’s ego.
Thank you! I think I will stop until after the appointment on the basis that I can then take the moral high ground and I do damage to the relationship otherwise… not that he didn’t just take a 12 gauge to it himself! Yea, I think endoknob is on the money!!
I cannot top the great collective noun suggestions here 😂
Sorry your endo is being such a knob.
In your shoes I might do a couple of things. One would be another email, perhaps to his secretary, to make it clear you’ll run out of T3 before your next appointment and could he please prescribe enough till then. It is possible he’s just so badly organised that it has not begun to dawn on him the impact on you. He might find you annoying, but frankly it seems you’ve nothing to lose.
Secondly, if you’re feeling well on your present dosing, as it seems you are. I’d stick with it. Why make yourself more ill to make a point to him? Honestly he seems so flaky I can’t imagine he’d understand one way or the other and the net result is it’ll be you that ends up most impacted.
Maybe in the meantime explore self-sourcing so that you have a plan B to follow if he really does say no or is otherwise totally inadequate.
Well it is interesting you say that… I’m not sure I have an ace up my sleeve but I certainly have some difficult questions about their monitoring of my non-functioning pituitary adenoma. For which I am supposed to have had yearly TSH tests among other things. So when I said between 2014-16 I was tired, why did they miss it and only find the hypo in 2017 when my TSH was 28. It didn’t get that high over night…
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Scarred for life. 
New test results just in!
Just about at the right setting point with meds. What should I do next?
Is taking 5mcg T3 in the morning then 2.5mcg in the evening sustainable long term. Do others dose differently morning and evening?
DEXA scan result Poor. What to do about T3? Endocrinologist unhappy with suppressed TSH even before DEXA. How do I advocate for myself now?!
How and what do you need to start to manage your own health ?
