Good morning, all. I'm just back again with another update.
As of a telephone consultation I had with my NHS endocrinologist this morning, I have been effectively discharged from NHS care regarding everything thyroid-related. She is a new endocrinologist for me, who has taken over from my previous endocrinologist (who is no longer seeing patients as she has been promoted to a senior leadership post). Her whole attitude shifted when I told her I'd gone private and am now on NDT - she became very short with me, and borderline rude, when before I mentioned it she had been professional and seemingly (somewhat) friendly.
She said that from now on, if I ever have any thyroid blood results on the NHS that look strange, I can just take that up with my private consultant. She also said that it isn't due to cost that Armour isn't prescribed on the NHS, but because of batch inconsistencies and potency concerns. Furthermore, I could tell that she wanted me off of NHS endocrinology care entirely, but because of my raised prolactin, she was unable to completely discharge me before begrudgingly agreeing to run the necessary tests to ascertain what is causing my nipple discharge and raised prolactin result. Initially she said that my private consultant can take care of that as well, before I reminded her that the test which revealed the raised prolactin was done on the NHS.
Ironically, it seemed like she interpreted me having gone private as some kind of betrayal (gee, I wonder how that must feel...) The whole exchange felt quite paternalistic, like I was some petulant child or that I had done something "bad" that I need to be told off for. My 'punishment', I suppose, is that I will no longer be monitored by the NHS for a situation that they were instrumental in causing. I did find it strange that she was so...hostile? Because if NDT is dangerous and there's such a narrative that I must be seeing a quack if they're prepared to prescribe it, then why did she basically say, "do what you want, it's not my problem anymore", rather than being concerned for my safety? She felt the need to remind me that they "did try" to give me T3, omitting the fact that I was only given 10mcg of it and not for long enough to see if it would actually do anything. I don't know who's right in the NDT/suppressed TSH debate, but I do know that so far, NDT has given me some of my quality of life back in a short 6 months. I wanted Levo to work for me; it didn't.
It's definitely bittersweet. At least I am almost done with the back-and-forth (that is unless they are able to blame my prolactin result on a suppressed TSH after the other tests have been done), but it does dash my hopes of ever getting Armour on the NHS. Oh well.
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lau99
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I’m glad you held your ground about the raised prolactin test result lau99, but feel for you that the consultation wasn’t beneficial in other ways. I hope that your health continues to improve on NDT and that your private endocrinologist is supportive of this. 🦋
Thank you, Buddy195. I've just let my private endocrinologist know via email about both the prolactin and today's consultation, so perhaps I'll see if he has any input at our next appointment. I must say, I would have never thought that it would come to this back when I was hyper.
How childish and unprofessional. I would write and complain to whoever is her superior, if it were me. I do believe in a short, sharp letter of complaint where it's due. Sometimes works wonders.
I just can't understand it. It doesn't really feel like 'healthcare for all', it feels more like 'healthcare for patients who are quiet and compliant, even when treatments aren't effective for them'. Sadly, I've recently received a response from a complaint that I filed with this hospital just over half a year ago, and it was underwhelming to say the least (and downright angering if I had enough energy at this point for that!) Basically one big "sorry, not sorry".
No, I don't think it's 'healthcare for patients who are quiet and compliant', it's healthcare for patients that don't cost too much and are ignorant of possible options. And, of course, you have to take into account the sheer ignorance of those dispensing that healthcare. She has no idea why being on 'the right dose of levo' doesn't make you well, but we know it's not about the levo, it's about the T3 - don't suppose she even knows what that is - and you are a poor converter so 'the right dose of levo' - according to the NHS - is never going to make you well because your T3 is too low. It's the T3 content of NDT that helps you. Simple as that.
🤣 I know what you mean. But, on the other hand, if no-one ever complains, nothing will ever improve. It's just a question of picking your battles wisely. And fairly.
Armour does not suffer from batch or potency problems, not this century at least.
After Graves' the thyrotroph can be down-regulated meaning the pituitary fails to secrete sufficient TSH. It would be interesting to know your TSH, fT3, fT4 - especially when you were on moderate doses of levothyroxine.
The hypothalamus secretes TRH which stimulates the pituitary to secrete TSH and prolactin. If your thyroid hormone levels are low and your thyrotroph not secreting enough TSH this could cause high TRH leading to high prolactin.
Yes, and she seemed immediately annoyed when I alluded to going private because of financial constraints of the NHS not allowing me to try different hormone replacement/treatment options...I never said that I went private solely for Armour because I didn't - I went private because I knew there were other options and other investigations that I could try to improve my health, but that no one on the NHS was prepared to help me with. I think the fact that she interpreted what I said in the way that she did is very telling.
She kept saying that my TSH responds normally when I'm on 'the right amount' of Levo, but the only times when my TSH has been 'in range' has been when my free Ts (particularly my T3) are worryingly low (though there has also been a time, if I remember correctly, that my T4 was near/above the top of the range and my T3 wasn't even past halfway - I think I may have been on 200mcg Levo monotherapy at the time, but I would have to go back and check). Even by NHS logic, the 'right amount' is still way too much for a 160cm 51kg female, but no one is interested in finding out why I never felt well, even on that much Levo.
As of right now, this endo will be overseeing investigations into a prolactinoma, but she seemed annoyed to even be doing that.
She is completely unaware that people who had hypothyroidism before 1892 just died.
Natural Dessicated Thyroid Hormones were introduced in 1892 and from then on patients did not die and their symptoms were resolved and they felt well once more when on an optimum dose. There were no blood tests but the doctors were well-trained in how to diagnose/treat patients who had hypothyrodism.
I was far more unwell on levothyoxine than before I was diagnosed with a TSH of 100 and told I had no problems by GP.
'She also said that it isn't due to cost that Armour isn't prescribed on the NHS, but because of batch inconsistencies and potency concerns.'
It's so infuriating that those who are supposed to be helping us insist on spouting such incredibly outdated and incorrect information.
Non-prescribing of desiccated thyroid products in the UK is due to their being 'unlicensed' in the UK, which is itself an indirect result of the endocrinology brain washing that levothyroxine/T4 is the only necessary hormone replacement.
I didn't know what to say to counter her claim without seeming like I was being difficult (especially seeing as I've been researching GP surgeries in my area and have found 2 that have been dispensing Armour/Erfa to patients as of August 2022), so I just didn't say anything and moved on. I won't change her mind, and her hostility combined with all of the awful experiences I've had at this hospital tell me all I need to know about this department. In a way, her discharging me (however unethical) may have just done my mental health a massive service. I'm just sad that I will have undoubtedly been labelled as difficult in my medical records, and that I would have to remove probably over 3 years worth of this same sentiment being echoed in those records to have any future NHS doctor take me or my health concerns (thyroid-related or not) seriously.
How would anybody feel after being told they needed a thyroidectomy, and that then everything would be fine afterwards only to find out nothing was fine afterwards.
Your consultant did not help and didn't follow through as promised and you have spent some 3 years in the system, trusting people presumed to know how to help you, only to collect additional health issues and then be restricted in how much medicine you need to be well - it simply beggars belief that you are not more angry.
Anyone with an ounce of common sense and medical knowledge reading your file would be shocked by the lack of care and understanding shown to you -
There is nothing wrong in standing up for yourself which is all you are doing -
As you get stronger your ' you ' will shine through again and please don't expect anyone who hasn't been there to understand.
It's more than it's worth getting upset and stressed about how other people see you -
it's not their fault, they can't help it as they have not had to fight their corner, when so unwell, talking with those holding the prescription pad and having your life in the hands of people who have failed you medically and are not concerned by their own limitations and ignorance, and have no interest in restoring your health or well being.
Just to add - the only surgeries I've found down here prescribing NDT are closed to new patients and you can't actually know by name which doctor is writing the prescriptions.
One surgery is mine - but the story goes it's for those in the Care Home Sector - the elderly, who were on it when they relocated into " Sunny View " retirement home, and we wouldn't suggest switching such elderly patients at such a time in their lives !!
So I'm 75 and an old patient wanting an old fashioned form of treatment but I can't start having NDT prescribed on the NHS and been refused both T3 and NDT through this surgery.
Maybe I'll try again when 80 !!
You have to make a joke of it as it is unbelievable !!
So if her dogma were true, why are Armour and Efra still being prescribed on the NHS ?
So sorry to read this, but not surprised.
The NHS inaction to treat and understand Graves patients - post thyroidectomy or RAI thyroid ablation is totally unfair and ridiculous - it's not like the research isn't there :
Stay strong - you know how you feel and now understand what thyroid hormone treatment option works best for you.
If it were 2002 - your doctor would have all the treatment options readily available in his tool box to play with and able to monitor and treat you as you both saw fit as to get thyroid hormone replacement right, takes some time and is unique to each patient.
Sadly since around the turn of the century ( don't we all sound really old - or is it just me ? ) all the options other than T4 Levothyroxine have been withdrawn from primary care doctor prescription pad, some of whom will be at a complete loss as the enlightened few know that prescribing anti depressants, though likely lucrative, are not the answer.
I believe in 2022 patients are expected take some ownership of their own health issues and encouraged to be involved, have a voice, and ' buy into ' their NHS treatment plan thereby showing commitment and compliance.
To be honest (and not to look a gift horse in the mouth), I even sometimes wonder why Armour and Erfa are still being manufactured at all, since almost all endocrinologists globally seem to either hate DTEs or be at the very least highly sceptical of them. It seems that once you take NHS advice and have either RAI or TT, you go from being a Graves' patient to a nuisance. It's like I'm not even a person anymore. Every time I speak to friends or colleagues about my experience thus far, they're always shocked that people can even speak to others as disrespectfully as some of the things I've been told by consultants.
NDT is the treatment of choice in Thailand hospitals and mainstream medical doctor's surgeries as I don't think Big Pharma have penetrated the Far East yet.
NDT is still used in very many places in the World where Big Pharma haven't yet systematically discredited the competition on which their own T3 and T4 treatment options originally exploited and then manufactured.
NDT is still prescribed in the States - it's just a question of finding the right specialist and they may well be integrated, alternative, holistic or complimentary therapists and I've read of someone getting their Armour prescription through their osteopath as the management of same doesn't really need much intervention from anybody special.
How bl..dy dare they? I am absolutely furious about this kind of behaviour. Who on Earth do these people think they are? Off course, they can’t all be tarred with the same brush but there do seem to be an inordinate number of these arrogant (and not that clever) people in medicine. We hear the reports often enough. I have not been known previously for my ‘rudeness’ but hypothyroidism has changed me from a person who happily suffered fools gladly, to transitioning into quite the complete opposite.
Chronic Illness and advancing age have made far less tolerant of stupidity. That and educating myself about medical matters. I've been asked in a few occasions during a consultation if I'm a doctor or nurse because I know my stuff.
Then again when I say no they maybe think I'm a hypochondriac who pours over medical websites, dreaming up new symptoms. I'm willing to bet that's in my records somewhere. Life's too short to put up with their incompetence. And these days I'm more inclined to let them know it. I was far more subservient when I was younger.
Please don't apologise - the outrage is actually quite refreshing I definitely tend to underreact to things in the moment, and I really want to work on my assertiveness going forward. It was my new years' resolution for this year, but I think I'll have to carry it forward into the next! I completely agree with your sentiments too...it's just unbelievable how arrogant these people can be.
Maybe we thyroid patients should compile a book ...Something like "An idiots guide to being a thyroid patient..... things likely to be said to you". ??????
if my daughter had been through what you have lau99, and then got talked to like that after finding a medication that was improving things when the NHS had totally failed to so .... i'd be bloody furious.
anyway .. sod em ... hope you can now start to enjoy the inner confidence that comes with taking back some control from these useless arsewipes .
I'm amazed they have the balls to look you in the face.. oh ..wait a minute ... they don't.
This statement she made - "Because if NDT is dangerous"
is total rubbish as NDT was the very first thyroid hormone replacement that saved lives from 1892 onwards (due to patients' symptoms alone ) until other 'options' were invented ie. (levothyroxine (T4 alone - to convert to T3). NDTs saved lives of many hypo patients who were prescribed.
Some who were prescribed NDT and recovered their health would have been very reluctant to have NDTs withdrawn and, as far as I understand, no warnings were given to patients who had recovered their health on it..
If NDT is so dangerous, why do they refuse to do a full blood test?
I often wonder if, when you show some knowledge, is it fear that makes them rude? In which case do they do any further research to find out if you are right? Or are they so comfortable bullying patients and getting a good salary that they cannot be bothered?
Where is the "partnership" between the medical profession and the patient? They shout about it, it is a shame they dont do it!
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Need a Scottish doc for Armour
Facts regarding the LEGAL purchase of NDT and Liothyronine from your local pharmacy.
So fed up and so confused 😢 Have I been misdiagnosed? 
