From my endocrinology appointment earlier this week , and a different North East Health Trust
using the term " Health loosely ".
My response " and do you have a problem with that " . he had no come back just mumbled something about heart attack , and i wouldn't be getting any from him . this was after i told him the GP suggested it and would possibly be willing to prescribe . Heck i don't even know if i want the stuff .
in summery -
He was irritated i was even there .
Offred to solutions other than take more levothyroxine the skies the limit
Implied i wasn't taking my medication it was my fault
couldn't even tell you his name because he mumbled it twice and had no name badge
I left feeling totally defeated , i feel my life has no value to the NHS , i will never trust any Dr again with any condition . At the moment I'm down and out . trying to process the experience and figure out what next .
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crystalcat10
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The thing is, having an underactive thyroid makes you feel so exhausted, unwell, immensely tired the whole time, of course we suffering from underactive thyroids wish to feel better - Isn't that what the job of a doctor is meant to beTo make us feel better? Whom wishes to feel worse!?!
These with power are so uncompassionate, it's horrendous 🥺
Yes! However I am not so rapidly coming to the conclusion (repeatedly) that this is the plan! No matter how truly lunatic the idea is, we just must look at the facts.
Yes no compassion. But no creativity, patience, plenty of narcissm and no common sense, I would add.
What a bunch of dunderheads ‘they’ have turned out to be. It’s like other modern issues of unveiling. We now know the ‘upper classes’ don’t deserve unquestioned respect and we see this applies similar for doctors.
I really want to say something extremely profane and I swear a lot more the older I've got, but I dont want to get banned or offend anyone's delicate sensibilities but shall content myself with 🤬 😡.
Where do they find these people. If you get a copy of the follow up letter to your GP would this numpty's name be on it and if so could you complain? There must be a very deep well of idiots somewhere and the NHS dredges them up to talk absolute nonsense to patients.
God the absolute cheek of wanting to feel better, the very nerve.
I work in the nhs and totally agree with - wow my job is great and I love it most days albeit not medical but my treatment as a patient has been nothing short of negligent and has nearly cost me my life yet I know others have it so much worse?!
The problem being it’s deep rooted - rubbish old medical professionals who don’t update training become arrogant, gaslight and traumatise patients etc then train new ones to be just as bad too … terrible cycle which they don’t seem capable of getting out of …
Reading the experiences on here just boils my p!ss - the day I work out how to change things I’m all in!!!
I'm So ShockedI truly believed Endocrinologists were meant to support those with underactive thyroids to get better & feel much better, therefore I thought Endocrinologists were meant to support Thyroxine, which when given enough of it, does enable us Underactive Thyroid Sufferers, to feel human & able to function again
I'm So Confused & Baffled
Even a Fitness Expert informed me, Endocrinologists can over rule what a doctor says in concerns with being given enough Thyroxine to function properly 😥
No, if you go what they call ‘out of range/overdosed’ they want to cut the dosage down. I immediately feel unwell if this is done and have managed to get a GP to agree with my sticking to the dose I want as I’m a bad converter. I had hoped to get a trial of T3 (Liothyronine) hence my abortive trip to an Endo, well-known and loathed on this site. I had requested someone on a Thyroid UK list, as being sympathetic, but this ‘person’ took the appointment😡 .
The salient point here is that not everyone feels well on Thyroxine (hence going out of range) which is a pro-hormone. What we can’t get is T3 Liothyronine the actual hormone. Some are lucky enough that their bodies can convert Thyroxine into T3. But many can’t or are bad converters we need the actual hormone Liothyronine. Apparently GP’s are not supposed to prescribe it. It has to be an Endocrinologist, except they won’t. This is in many respects a cost issue. One company has a monopoly in England and was charging the NHS hundreds of pounds for it. They were taken to court and fined a huge amount. (I can’t seem to make a link but if you google Liothyronine court case you’ll see a government website link).
Apart from that many Endo’s appear to think it is dangerous!! I have Pernicious Anaemia too and we suffer the same dreadful ignorance from the medical profession about dosage and ‘dangers’. It’s sanity restoring that we have the lovely people on this forum to help and sympathise with our struggles. Take care of yourself. 😀
Dear KazaniaGod Bless You&Yours & Thank You Immensely For Your Compassionate Thoughtfulness Informed Response
Most Surely Appreciated Million percent & definitely you didn't over answer
God Bless You
It's So Lovely To Be Given Wholesome Enlightenments & Insightfulness
I'd never heard of Liothyronine prior to this site
Never knew of Liothyronine only LevoThyroxine
My nurse says to me "'Since you're still a slim lady we will cut down your dosage again-Save your 25mcg tablets in case we reduce your Thyroxine again "'
I'm like, I might seem slim to you but I'm big for me, & for my frame you didn't know me before... "'
Plus all the other symptoms
Immense exhaustion, sluggish all the time, hair falling out & dryer than it's ever been before
Thank you again so very much so Sincere Soul
Maybe private Endocrinologists would help us stand a fighting chance?
I notice how most ignorant so-called doctors are… it’s dangerous. We are in their hands… I noticed too how ignorant nurses are too… Where do these people get trained ? Very bad training, no fit for purpose.
I just don't comprehend why nhs wish to withhold treatment from us Hypo sufferersWhat in God's name is their reasoning for this or logic? By the way, does anyone know if we receive email notifications if someone replies to our posts please? I'm pretty new to this forum & only just in the last few days begun posting, so I'm not quite sure how it works 🤔?
If you look at the top of the page you'll see an icon made of three lines. (I think it is called the hamburger icon, but don't quote me because I'm not sure. Edit : I was right. en.wikipedia.org/wiki/Hambu... )
Click on that icon and you'll see an option for "email preferences" amongst others. There are lots of things you can receive emails for, if you choose to.
Street drugs that 'feel good' are much easier to get hold of than Liothyronine is .
if 'feelgood' effect was all people were after , very few of them would bother putting themselves through the emotional and physical grinding mill of NHS endocrinology to try and get prescribed T3 .
and if this muppet really thinks T3 is so much 'fun', have they never wondered why there is absolutely zero market for it among those who illegally use MDMA or THC for enjoyment ? ..... it's because it's no more 'fun' than drinking 6 expresso's in a sauna would be , that's why.
you would struggle to give it away to anyone looking for 'feelgood/ fun' ... it would be like going to a cocktail bar and offering shots of benylin ... useful if you need it , and will make you feel better ... but not 'fun' to use if you don't need it .
The only place I've seen T3 used outside of a medical need is by bodybuilders who are trying to cut bodyfat. And even they aren't doing it for the high.
You may have a 'genetic' Thyroid problem like loads of us do, which means T4 only treatment does not work. Worth testing to find out. It's called a DIO2 Test. Unsurprisingly, you'll not get it on the NHS. I had mine tested by Regenerus Labs, but I'm not sure if they're still offering.
I can't word it better than all the others.... take from this that you have been failed (along with most of us here) and are now empowered to treat yourself as it is by far the best option, you know what you need, you've done the research, we are all here to help 🤗
Classic tattybogle T3 is certainly hitting the spot there😁
As Tigger says you've got nothing to lose in treating yourself, you've tried the good patient route and they've failed you.
You owe them nothing but you owe it to yourself to feel better if possible. Lots of us source T3 and your very regrettable experience demonstrates why. In a weird way I feel empowered by your experience although I'm extremely sorry you had to go through it.
Because if any doctor in the future challenges me about why I take T3 I shall simply reply" because I wanted to feel better" . Personally I've wasted enough time feeling crap.
Also am I right in thinking the NE area is the worst for getting T3?
you are correct , a certain misogynistic Professor is based up here and unfortunately has massive influence not only locally but nationally . But us poor North Easterners appear to bear the brunt as if we hadn't been dealt a bad enough wrap to begin with
I thought I remembered some forum members mentioning this person and I'm sure it was in the NE. Well if that sort of pig headedness is what you are facing its even more grist to the mill of getting your own T3 and figuratively and literally flipping the bird to him 🖕
I can't add anything to the comments apart from commiserations that you had to go through the blooming awful experience with one of the Profs puppets. I've had some dealings with tthe Prof himself, his colleagues and some of his trainees in the past. I know which hospital you are referring to (red & white?) and it seems the Profs acolytes are all the same and his teachings have spread far and wide. Not good news for us thyroid patients.😒
You have received some sound advice regarding self treatment and checking for the faulty DIO2 gene and think this may be the way to go for you, as it was in my case.
I hope you gain good health despite the doctors trying their best to stop you
Unfortunately it most surely seems true in concerns with ne doctor having swaying influence because my doctors in the South EastSo bad news travels fast hey 😥
Plus can anyone please advise how it is meant when some have mentioned to treat themselves? How can this be done if we're not prescribed adequate amounts please?
Plus record complaints about the NHS to the Ombudsman. 27,500. Seems modest to me. An indicator of the Betrayal of Trust stuff we were talking about in another post.
Also interested in the comment that the ‘patient should be centre of everything that is done’. Links with the Safety Commission questionnaire - also highlighted in a recent post!
I think our issue is proving it though. Its one thing for a colleague to call us a sexist name, quite another for the medical establishment to be patronising and mansplain stuff under the guise of " the patients own good". As we know they close ranks and cover for each other.
I think the Govt is aiming to outlaw misogyny in the near future.
That reminds me of the time back in the 80s when a colleague told me that racism and sexism didn't exist any longer because they had been outlawed. (As a result of the Sex Discrimination Act 1975 and various acts to do with equality). He couldn't be budged in that belief.
I have actually had this said to me 3 times by 3 different medics over the years that "anyone who takes t3 will feel good" It does make you think that the medical profession think that t3 is a bit of a recreational drug. Not a replacement hormone that your body needs to be well and function because you're not able to produce it yourself 🤦🏼♀️
Its pretty worrying that they think a hormone that normal healthy people produce effortlessly is the same as booze or cannabis. I wonder if they tell Addison's patients the same about Hydrocortisone or Diabetics about insulin.
You do sometimes wish these doctors could experience what its like to be hypo and perhaps develop a bit of empathy. Their lack of both knowledge and compassion is concerning.
Idiots! 😤 Sadly, I haven't found T3 a game changer (& am on combo treatment), but it's definitely better for me than my 12 yrs of T4 only - which involved endless gaslighting, as the posting member is unfortunately experiencing too.
have you tried thyrovanz or the like? it contains t 3 t 4 and apparently t and t 2 read somewhere. is from cows pasture raised in new zealand. t 4 only made me gain more weight and feel more tired
Bovine thyroid can contain certain levels of thyroid hormone that are naturally present within the animal glandular. In the United States Thyrovanz is regulated as a dietary supplement which restricts comparisons to hormone replacement medications. Please consult with your doctor if you are looking for thyroid medication or thyroid hormone replacement therapy.
Which means we cannot know if it contains any thyroid hormones at all. And if it does, we do not know how much. And we certainly do not know (and cannot find out) if there is any consistency capsule to capsule, or batch to batch.
This also leaves people in a difficult place if they need, or wish, to change to any other product as they have no basis for comparison.
that's interesting to know . i must say it did help me and my naturpath is very satisfied with the blood test results too although i still have trouble with weight gain so switched to another brand hoping it works better. had a problem with thyrogold a few years ago not working is why switched to thyrovanz . lost weight too glad to say.
is anyone else is having trouble with thyorvanz or thryrogold i woudl like to hear about it and which brand they prefer now
My question is very simple. Aren't Dr supposed to make us feel well is that not the oath they take? If it means to prescribe T3 for our well-being so be it. Why are Dr's fast in prescribing meds for everything and when it comes to T3 they are out to lunch?
It should be obvious to this member of the medical profession that their raison d'etre is to tend to the sick in order to make them feel the best they can be.
The ignorance, arrogance and rudeness of that endo beggars belief....his credibility is rock bottom
T3 is essential to life but that fact seems to escape them....and is causing misery!
DD In my opinion we should not have to plead cry and beg for our thyroid meds. Especially when drugs are readily available for recreational purposes. We should be able to buy over the counter our thyroid meds to feel our optimal. DD keep being a Great advocate for us Thyroid Patients.
I’m literally speechless at this nincompoop of a doctor - please try not to feel down. He’s obviously very very ignorant and you are better informed than he is.
I am so sorry to know of your experience, I live in Ireland and its quite similar, I self source NDT and am fortunate enough to have access to a functional and medical doctor who will prescribe it, I avoid going to my local medi centre as they to only prescribe ELTROXIN...like such a stupid thing to say....it makes people feel good!!! We have a few endos who prescribe it but difficult to get an appointment and it costs quite a lot. Best luck to you and I really hope you get sorted.
I would have laughed in his face if he'd said that to me! What an idiot! Does he even know why he's a doctor? Miserable creature. Hopefully karma will sort him out.
But I can imagine how you must be feeling right now. The sheer hopelessness of it all. So, I thought maybe you'd like to read this post from yesterday. I found it quite cathartic:
Betrayal - yes that piece of the essay sums it up exactly .
and the more i think about it the worst it gets , I'm stating to have serious misgivings about the GP who sent me there , i wonder if he was setting me up for a fall , putting me back in my box
Or, he wouldn't know a good endo if it got up and bit him on the... bottom.
I don't suppose your GP has a clue how bad the man is. Doubt he's ever consulted him himself! And, at least your GP recognised your need for T3, so that's one point in his favour. At least give him a chance to prove his true colours when you get back to him with the results of this... 'consultation'. See what he says.
I had a very unfortunate encounter with a Orthopaedic surgeon who had, I've since found out, had a very well deserved reputation for arrogance and non existent people skills. I was so angry at the way he'd treated me I told him he could shove his procedure, walked out of the clinic and made sure I told my GP what I thought of him.
She pulled a face and said she'd heard he was " difficult". She even put in my notes that I was upset with the consultation.
The problem is these consultant think they are God, used to far too much deference and deferral. And as NHS patients we are a captive audience and many have no choice but to put up with it.
And even if you can go private its no guarantee the consultant will be any less of an arse. The only advantage of private is you can choose and research, whereas the NHS, you just get who you're given.
Good heavens - perish the thought that someone would actually want to feel better! That ranks with the endocrinologist who did a TT on my builder’s wife who never seemed to feel better and eventually he said to her ‘I’ve saved your life. What more do you want? ‘
“At the moment I'm down and out . trying to process the experience and figure out what next .”
No, you're not really down and out, you’re on here with us and you are fighting back.
If you were seen by who I think you were then I feel truly sorry for you and any other patients he has. Totally dreadful, misogynistic, bumptious man who should be nowhere near a thyroid - or any other type of patient for that matter. I wouldn’t even let him treat my dog if I had one. For goodness sake - with a TSH like yours it is a miracle you are still standing. Did he by any chance comment that it was somewhat high?
You’ve got lots of good advice on here. Keep going, gather as much evidence in your favour as you can, work out a plan of action then go for it. Stay strong although that’s easy for me to say.
“I wouldn’t even let him treat my dog if I had one…”
What a pity we can’t consult vets as their speed and efficiency in diagnosing and treating thyroid conditions in cats and dogs is one hell of a lot better than any treatment I have ever experienced from an endocrinologist (apart from my old endo who did put me on T3)!
This whole “Simon says” culture is poisoning the well of thyroid treatment for humans and he’s not the only one…
Ah since I joined TUK in 2013 people have often commented that they wish we could be treated by our local vet. I was going to say nothing changes but unfortunately i think things have actually got worse.
In normal life, following an unrecorded meeting, you could write down as much as you remember of this conversation then send it to the man and ask for his agreement that that is what he said. Normal people would either agree or disagree and correct whatever was wrong. You could then act appropriately. If any of us tried to do that we'd be labelled troublemakers and awkward patients. I seriously hope you get more sense from your GP when he hears what a waste of time his referral was!
I've heard of people who do covertly record doctor consults because they've had bad experiences in the past and of course the doctor being the authority figure is always believed. Maybe they should be, audio obviously.
I know it would be a GDPR nightmare but currently patients and doctors have to rely on the benign intent of the other, the good chap scenario. And as we know not everyone is a good chap. We can ask for a chaperone for intimate examinations, so why cant we employ an audio recording system so there is no chance of lies, discrepancies, forgetfulness or he said, she said. Doctors already use dictaphones.
We really should be able to record all conversations! I did know someone who was in hospital following an accident and so concerned about his future that he recorded everything. He told the doctors at the start what he was doing and none of them objected and he got more detailed information from them afterwards.
When my husband was in hospital following a stroke I asked about everything that was happening and being said, and the doctors (they were all wonderful actually, unlike some I've encountered) had no objection to my taking very detailed notes of what was going on and photographing all medical documents. However, I heard two very sad and worrying conversations while there, in a ward of six men with me the only visitor, and involving a consultant telling firstly an unconscious (apparently dying) patient and then a confused patient, some very important information. Neither comment was recorded, and when the respective spouses arrived neither knew anything had been said.
I go to every consultation with my vulnerable daughter and I Minute everything - and I do the same with phone calls - and email them a copy. If it’s not written down, it didn’t happem. But I know in this case that I dealing with liars.
Unfortunately most GPs side with their useless Endos,and the gaslighting is permanently on repeat, driving us to despair. It is a constant battle & postcode lottery.
I say this to everyone who is seeing a consultant - take someone with you if you can! Not only do you have a witness to the consultation, you also have a better chance of collating the information and finally, that person could be given your permission to ask any questions that might not occur to you at the time. I don’t think a prat like the one you mention would feel as comfortable with himself if you have a supporter with you.
i did have my husband with me having learnt the hard way in the past as a female you are not taken seriously . In this case he was indifferent . it was like the dr was reading from a script almost .
If I thought I was going to have a difficult time with a consultant I would do the same, having learned some years ago that it’s a good idea. I am fortunate in that my husband is a very highly qualified scientist with a very good understanding of statistics and probability which does help. I’ll never forget the time we had to see a geneticist and he corrected her maths even though he was viewing it from the other side of the table, so what she was writing was upside down from his viewpoint.
You have my sympathies. I’ve had the odd disagreement with doctors before now, as did my mother before me. Then they have the nerve to accuse us being “stressed”. I’ve often wondered whether those who say that ever consider the possibility that they might be the cause.
So rude. I wonder if it’s because you’re a woman and he’s a misogynist?
Next time a doctor treats me rudely I’m going to imagine them being about 10 years old and I’m their teacher. People like that are abusing their power because they think they’re above us.
My grandmother always used to go to a doctors appointment in a smart outfit. I think she knew she had a better chance of being treated with respect. It’s awful how much women suffer because they’re considered less important. My husband has never experienced a doctor being condescending.
It is so important we speak up and use our authority. As others have said write a letter of complaint and ask for them to suggest next steps because you do indeed want to feel better.
There was a post I saw yesterday by Buddy99 re an article “betrayal trauma” . I’m suffering badly from it at the moment so I haven’t even carefully read the post.
I’m trying to find a diagnosis for intermittent serious pain in my upper back. Having been dismissed by a GP I’ve gone down the private route & have spent several thousand pounds already. The latest disaster was huge setback.
Totally dismissive consultant, a Professor , with very specialist knowledge charged me £250 & then refused to look at my back! When I suggested a possible cause he said “No, you’ve had it for too long”! No other explanation.
He was cross at the start of my consultation because he had no x rays etc. I sent them through Spire private very secure email system app but because he delayed the appointment by 6 weeks the system had wiped my emails. It’s very secure indeed! Nothing to see here.
The staff didn’t seem to know this. Just told me the previous evening, by email, that they had nothing. I’d spent ages sending X rays, MRI, letters from consultants etc. But even though he didn’t have documents he didn’t EXAMINE MY BACK! Unbelievable.. I’m trying to raise the energy to complain.
The worst so far was Sarah Myhill who charged £400 to “look at my case”. I booked thinking I’d meet her as I live 30 minutes away. Or have a phone or Zoom consultation but all I got was a questionnaire to fill in which was returned to me with handwritten suggestions on it. No follow up, nothing. Appalling.
I’m so sorry you’ve had such a rotten experience . I use Roseways for my hormones now, can’t stand NHS rigmarole & idiocy.
if self treating with less levo and some added T3 seems too daunting at the mo, i would suggest making an appointment with Roseway , i think it's about £40/50 and from several reports on here their prescriber (s ?) seem to be extremely sensible/ reasonable to deal with . ... so it may be a middle road where you feel 'legit' and supported by a knowledgeable prescriber , but not anywhere near as expensive as seeing an endo privately would be .
You are clearly not absorbing much of the levo you are taking, for whatever reason ... it's infuriating how many GP's/ endo's won't look further than the assumption the patient must be lying about taking it consistently .
I've had that attitude in the past when despite being on 100mcgs my TSH was still nearly 7. I got grilled about whether I was taking it or not. And I took great delight in setting them straightIn fact I bombarded them with info I'd found on here and probably told them stuff a mere GP wouldnt know. So bloody patronising.
It isn't always the answer, and in my experience there are often hidden costs, like an added £100 for use of a room that no one had told me about, or the extra £200 for sending blood samples to America - again, that had never been mentioned.
You're the second person in the last two weeks who's mentioned that particular doctor. Why can none of them actually care enough to charge decently! I'm sure that a few years ago her charges were more reasonable for better communication. This really is disgraceful. May I suggest that you let TUK know about your experience, so that they can update their list of private doctors.
I must correct what I said - it turns out that the other poster wasn't talking about the person you saw, but that still doesn't, of course, excuse the treatment, or lack thereof, that you received from her! I'd have been extremely disappointed too because she was always supposed to be so helpful and knowledgeable, and was one of the three doctors, together with Drs Skinner and Peatfield, who so many of us believed held the answers for us.
I was very surprised by the lack of involvement & at the very high price.
I only paid so much as I thought she might see through the multiple difficulties I’m having to the root of the problem. But she didn’t & furthermore all she wrote was already in her books & on her website so more fool me.
Yes, Roseways have stepped into the breach although it wasn’t a totally smooth process. I got muddled as I hadn’t written down the T4 brand I wanted & got the wrong one! Stopped taking the one I received now, didn’t suit me at all so back to my 40mcg Thybon Henning only. Brain fog & getting bothered as the prescriber’s phone call was very late. Just my luck!
East Lancashire NHS trust blacklist T3, I've a brilliant endo but he's in West Yorkshire NHS trust nearest hospital to me, still awaiting outcome of cortisol test but he stated he'd like to trail me on T3 most likely I'll have to source & fund myself so gearing up to write letters to East Lancashire & Health Secretary & anyone else I need too. My endo can't understand why they have done that been like it for years seemingly. So I've a proactive endo but a useless NHS trust. I feel for you
if anyones get dr mercola news letter every day, he has a really good reporton hormones and the endocrine sytem explaining tsh/ t3 t4 etc PLUS all the hormones needed for the thyroid to work properly. i dont know if i can post the link as he has a shop as well. but you can sign up and get his reports every day, i have a whole list of pdfs on his research. it just shows how little our consultants KNOW!
That's disgusting no Dr should ever be so rude and uncaring , if I were you , I would report him , your appointment is on record somewhere and someone will know who he is , also maybe ask for a second opinion , good luck 🤞
absolutely shocking for him to say this to you. Why were you there in the first place? I’m under an endocrinologist as well and although he couldn’t give me an answer he wasn’t rude. I hope your going to complain.
The North-East NHS seem to be living on another planet. I have been told lie after lie by them. Even that T3 is the same as T4, so you may as well just take T4. Seriously? I came up North taking T3 and have had to fight all the way to keep it. Stick to your guns .. and good luck.
Hi crystalcat10 do you mind me asking, assuming it’s allowed, which NE Trust you attended? I assume it was not Newcastle so would expect this to be Sunderland? I see someone from Durham but privately but the NE is a T3 no zone. Under this persons guidance I take T4 only and am under the lower range limit on agreement. Obvious risk factors with that as well. If you want to DM me feel free to do so, if only to share experience of various folks I have seen in the past.
you assume correctly as to the trust name , i have also been seen at another trust ,( the one on the other river with a cathedral ) dismissive but also just dumped by them which is how i ended up getting a second opinion .
Ye gods! Isn't that the point of medication?? That's a very poor experience of your appointment on several counts. Have you considered talking to patient liaison? I found them very helpful when I had an equally dispiriting consultat with cardiology a couple of months back.
I wonder if there is the chance to get a second opinion (and then ask on here for T3 friendly Endo).
I don’t understand, how can they leave that tsh so high?
What did Endo actually suggest? 😡
Is there any one on here with similar high tsh and what did they do?? I’m sure I’ve read messages along those lines.
Just an idea (and maybe already done) Does any one think it would be worthwhile doing DNA analysis to see if there’s any snyps that may cause problems, and address from there? Eg. Some people have issues with converting T4 to T3.
Sorry no answers, just so annoyed for you, at least if you had chance to trial T3, you would know if it makes any difference.
I was informed that as a " Collective" they had decided not to prescribe Liothyronine in the North East !!! I'm assuming the leader is the so called Professor. There is a Consultant in Durham who does however. Only aware of people who see him privately.
After 34 years working in the NHS I find myself like many others having to spend large amounts of money seeking treatment. National 'Sick' Service.
i had t3 for a few years from a forward thinking endo but he left- i also had ndt from a forward thinking endo in another hospital but he left, i had another endo who kept up the t3 until one day,
i was told ''you cant have it anymore its dangerous!- '' i think that was the ecxuse , because down the chain it was too expensive for nhs.
i was cold turkey then and never been right since now years later my t4 is quite high after always being low, and my tsh is about 0. 02, so i am ' over' with all symptoms of under and my latest endo who i last saw before lockdown decided he didnt want me on his books anymore!
i am on the junk heap and cant be asked to look for anyone else. i am worn out. i suspect i am low in dhea, they wouldnt even know what Dhea is,
i would think i am high and low all over the place but too complicated to sort out now, in fact we havent even got many consultanats or gps left, they are always striking even though they earn fortunes aand the easist job is endocrine as they never get it right and are never wrong!
Sadly your experience is the 'standard' NHS Endo offering, as I've experienced 5+ times myself since diagnosis 😕 Sorry you went through this too & I hope you can see someone good privately in the end. Private Endos are experienced & very often run a Private Clinic alongside an NHS one where they trained, but they aren't constrained by their masters. The downside being we have to pay, but if they put a solid case to your GP, they may prescibe, although it's typically a battle. Take care & Good luck to you 🌸
I wonder whether they learn these phrases in med school. One of my endos said something similar when I told them that I felt better on the higher dose of Levo. "You felt better because you were hyper" Whaaaat? 🙄 Are people with Graves the happiest people on earth then? Sometimes I wonder whether they want to keep you just barely alive.
I have already been told that I need to learn how to talk to doctors properly when I asked whether the report from the rheumatologist mentioned hypothyroidism (which, by the way, it did as I found out later when I asked for the copy). It seems that our doctors are generally very sensitive and very easy to offend. Apparently their ego is very fragile. It had definitely crossed my mind to ask why graves is treated if it makes people so happy. Instead I just tuned out since that was not the only bs this endo was trying to hand me. I still don't know how to "talk to doctors properly". Best to not talk too much, I guess.
My former GP. She also falsified my medical records and was prone to yelling fits (for example when she denied autoimmune thyroiditis because my TPO was normal and I told her that it has always been normal but my TgAb was elevated). It was a very difficult relationship. Finally finding a different doctor, however, did not improve things (most likely because my records depicted me as a difficult and non compliant patient). Now I have a nurse practitioner who is a delight to work with. We are a team.
I'm not good at talking to doctors, and I have a long history of having difficult relationships with them. During the years I was low in so many things like vitamins, minerals, and thyroid hormones I was so poor at communicating that I was labelled as depressed, anxious, a drug-seeker, and a hypochondriac. I think those labels will be on my records until the day the Earth falls into the Sun. And I will be judged and dismissed every time I see a doctor as a result.
Quite frankly, I did not know that a special way of conversation was required specifically for physicians. I always thought that being polite and respectful, like with "ordinary" people would suffice. Apparently that is not the case. I have learned several languages but the language to use with doctors completely eludes me. Maybe each doctor expects a different type of communication. I don't know.
My experience matches yours, humanbean, minus the drug-seeker. But I might still have more years to live (I hope), so there is still room for that as well in the future besides a whole lot more that my small brain can not imagine at this point. Let's hope it will all blow my mind (and yours)....in the most positive way possible.
The drug-seeker label came about as a result of me having lots and lots of gynae problems. Through all the years I was having excruciating periods the pain I was in was never believed in and I was assumed to be exaggerating. I was prescribed pain relief just once but I couldn't tolerate it - it gave me the worst indigestion I had ever had. I ended up with gastritis because it irritated my gut so much.
After I had a hysterectomy it was discovered how bad my endometriosis was. I also had adenomyosis, and dense adhesions as a result of botched and delayed surgery in my early teens. The hysterectomy happened at a time when patients weren't allowed to have copies of their medical records, so I asked my GP to read out the letters from the surgeon who had done the hysterectomy, and one of the letters used the phrase "very severe endometriosis". A couple of years later I mentioned that same phrase to the same GP and she just rolled her eyes at me. A hospital consultant did the same thing not long after.
Many years later (2018) I had a minor accident and thought I might have broken my arm. It turned out the damage I could see was caused by a substantial haematoma not a broken bone. The receptionist in A&E scowled at me after she had looked me up. Then when I approached triage the nurse in the room called out to me (with a big smirk on her face, and with a sing-song voice) "I can't give you any pain killers." I hadn't asked for any, and thankfully didn't need any.
But it highlighted, not for the first time, that if I had a serious accident and needed real help I doubt I'd get good quality or compassionate treatment because of the labels attached to my medical records.
I correct myself, humanbean. My experience has been quite bad, but it does not come close to matching yours. This is.....this is.....I have no words for this. I am so sad. Why, why, why is the system not only letting patients down in the most terrible ways, but also kicking them when they are down? As terrible as it might be, I can understand medical error, but I hate the arrogance, the cruelty and the total lack of compassion displayed, while at the same time being judgmental, biased and as (in)competent as any other human with the limited knowledge that we collectively have. It is a shame that we have no choice but to turn to these people for help, when there is no guarantee that we will get it and, on top of this, have to fear potential harm coming at us physically, mentally and emotionally.
I hope you are doing much better now and wish for you to always be treated as the "humanbean" that you are regardless of medical records. All the best. ❤️
I'm literally in this boat. Absolutely ridiculous that the attitude seems to be we should all be ill and suffering. My story is in my post from a couple weeks ago. Short version - was symptoms free on 125mcg. GP decided I have Graves not Hashimoto’s and cut my dose I half cold turkey. I feel awful.
Now their argument is well it could be any number of things making you ill because you're at a transitional phase and you're quite clearly over medicated
it’s even happened to my dog! 3 & a half years hypo ( it’s a breed failing) discovered in pre op blood tests. Checked at least 3 times a year, always ok. Moved vets & suddenly told he’s hyper. No I said, he could be over medicated but he can’t suddenly become hyper. She said stop all thyroid hormone.
I didnt want to but he’s over 15 years old & I got nervous. Within 2 weeks he hardly moved all day from the doormat, wouldn’t eat & had put on a kilo, he went from 11 kilos to 12 kilos. I started back on his normal dose & he’s recovered. Off to see senior vet tomorrow, where I shall try to be polite. Lab error? Scan showed a mottled liver, could that affect his T4 level? Raise it as it’s not being converted? I don’t think they ever do T3 tests.
First time I heard such a thing about a vet. In fact I often (half)joked that I wished I could have a vet treat me. I guess there are bad apples in every profession. Your poor dog! I hope the senior vet will make up for that experience. 🤞
I’m going to find out in a couple of hours ,it’s very puzzling. I’ve thought the same that vet treatment was better. It was the vet that taught me about the timing of t4 testing & made me realise how little I knew. It made me look for info & the forum. Thank goodness. I think Ted’s liver is in trouble so there might be a reason but her solution was wrong. Weighing him proved that.
Senior vet agreed with me. Back on usual dose of 400mcg! He has no idea why other vet said what she did. No blood test yet, wait a month. Mottled liver not of concern given dog’s age so big feeling of relief. I’ll keep weighing him & hopefully he’ll be back to “normal” soon. Shows you can’t trust anybody on thyroid matters, you really need to have the knowledge yourself. I told her off for saying dog was “hyper”rather than “over medicated”. Apparently dogs can’t ever get hyperthyroidism though cats often do. Odd.
I was shocked too. Maybe I’ll know more tomorrow, I felt so sorry for my old boy. I could see he felt awful, quick recovery though. He takes 400 mcg a day! Dogs’ digestion process things very quickly. Thanks for answering,.
OMG what a f__king a_hole. The whole point of thyroid replacement therapy is to make you feel like you did before your frigging thyroid bit the dust. If someone took my T3 away I would shoot myself in the head and be done with it all. 5.5 mcg of T3 is PERFECT for me, any more and it builds up in my blood stream, any less and I feel like dying. I do not convert T4 to T3 and I require T3 to live like other people who have thyroids, live. Go back to your GP and ask for T3 prescription. Mine is compounded in a slow release formula and it is the best thing that EVER happened to me. I felt terrible before finding someone who would prescribe it.
Unfortunately in the UK GP's cant prescribe T3, it has to be via an NHS Endo and the OP lives in an area where they dont prescribe it. Its a real postcode lottery, as with so many things.
Yep about sums it up and absolute nonsense on his part!
I reported my previous Endo about seven years ago and of course she denied it, but I did get to keep half my dose. By then I had been on it for about ten years.
The heart attack rubbish, is from a study that is not related to our needs. Also I was told it was hard to get, because a Dr working in the private sector had been struck off, because he was giving it to people without a thyroid condition as a slimming agent, a bit like Ozempic is now. So the people who really need it, were kept from getting it. The price is so high now because of pharmaceutical companies charging gross amounts to the NHS rather than pennies like the T4! I was told "it doesn't work, and the money could be spent on more worthy causes" hence why I reported her, she had made her mind up before I got in the room!
We are worth it and it is essential to our needs. For me personally, I was born with only a partial non functioning gland, so have been on T4 all of my life. I only had to go on T3 because another GP messed everything up for me and I had a whole lot of problems because of it and now they try and take it away from us. Disgraceful!
My endocrinologist who prescribed me T3 3 years ago called for my yearly check. He first asked how my energy levels were …I said fine. …then if I was still on same dose (5mcg T3 on top of my T4) ? I said I now take an extra 25mcg T4 3xweekly (previously twice a week) and he said he’d make a note of. That was that ..he trusts me to get my dosage right and I trust him. He doesn’t care that my TSH is ridiculously low and accepts I’m not a great converter.
They are not all the same!!
You should be able to ask the name of the person you saw and make a formal complaint. Go back to your doctor and say what happened. Good luck.
I did make a formal complaint, but she denied everything and they took her word over mine. I just thankful I got to keep my 10mcg but should be on 20mcg per day. Ironically after I made the complaint, she refused to see anyone on the T3 issue.
I'm still under an NHS endo after 6 years and have not seen her face to face for 5 of those. I am finally having a telephone consultation next week a whole 12 months later than than scheduled follow up which will be go and get bloods done - I've asked to have them do before appointment through secretary else there's no point in her ringing! Am keen to stay on her radar else routine GP bloods send them into tailspin of panic over low TSH-ive likely secondary hypo- and dropping my 10mcg of lio and 100mcg levo despite t4 just in lowest range. Always feels like being given lio is a privilege not an aid to feeling " better"!
Yes exactly right you areForevermore it feels like Thyroxine is a priveledge like a luxurious spa treatment's opposed to the necessity to breathe sufficiently, that it actually is
Doesn't sum up whatsoever
My energy levels plummeted drastically, exhausted all the time, weight gain & the driest hair I've ever had, falling out, all since the uncompassionate doctor lowered my thyroxine
I agree with you on your last sentence. I did have a GP tell me many moons ago, that I ought to consider myself lucky that I am on it, to which I replied, he was lucky not to have a thyroid issue - no further response after that!
If it wasn't so dreadful a comment it would be hilarious....Whatever next eh? Us patients are so demanding of the medical profession....going to work each day...being asked to make people feel better.....what a nerve.....
argh this is awful 😞 I’m so sorry you had to deal with this attitude especially when you weren’t sold on what T3 could do for you either.
If you want to try T3 I’d recommend calling Roseway Labs for a consult with their prescriber. It’s an alternative to NHS you get a private prescription that’s all legit and they monitor your symptoms and blood test results and with the guidance here you can manage it yourself.
I too am sorry you had to hear something like that at your appointment. I would have been gobsmacked too. (Certainly too much so to give a good comeback to such idiocy, so I'll try to remember some of the good ones here.) I definitely agree with the person who said to follow up with letters of complaint, threatening legal action. Having read all the comments here, I think we need to be more vocal as patients and stand up to these arrogant sods. Let's all start writing letters! Thank God for a community of people who give support. I sure enjoyed some of the rants and had a few chuckles, though one's blood does boil at some of the things doctors say. Hang in there, we're with you!
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Mistake on clinical letter
Bloods, T3, and Endos
