1. I requested my GP to refer me to an Endocrinologist of my choice. (Thyroid UK list)
2. She did everything I asked, referral letter and accompanying medical history.
3. I did not see the Endo of my choice, but someone I definitely did not want to see.
4. He asked me to come off thyroxine (100mcg) for six weeks, stupidly I agreed.
Predictable results, I was wrecked and still am. Six weeks later he could see immediately that I was very unwell, and somewhat inadequately apologised. Suggested I resume thyroxine, he would see me in 6 months!!!!
a. I think he did not bother to read, or chose to ignore, my medical history.
b. Diagnosis Hypothyroidism 1994 TSH recorded as 25.10 mIU/L.
c. Diagnosis Pernicious Anaemia in 2010.
I recieved no advice about how to resume the thyroxine, ie slowly or all at once. I felt ill resuming it immediately and the pharmacist suggested splitting the dose, which I did. Roughly 8 weeks later I am still not back to where I was. I have just had Thyroid bloods taken at GP Surgery.
So a total disaster this Endo’s treatment has resulted in 3 months of increased ill health, which has adversely affected my lifestyle in many ways - no exercise, ceasing to drive, and being unable to carry on my life normally,
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Kazania
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“Do not harm” he’s obviously never heard of this!!! Washing out the Thyroxine is apparently to do with Guidelines concerning too many people being treated for Hypo who never had a diagnosis in the first place, I believe. This Endo, despite all the info given to him, said your diagnosis “is lost in the mists of time” and so I had to prove it - to my detriment. I think his attitude to Help Groups and patients, is totally arrogant, predjudiced, blinkered and wrong. Thank you very much for sympathising. As far as T3 goes, I think it is as out-of-reach as it was before I started trying to do something about it.
I feel so sorry that you have been put through such an ordeal and if it hadn't of been for the lovely people on this forum I would have done exactly the same thing as you. I was referred to my hospital endo because of a goitre and he even said he would trial me on a combination therapy but first I had to come off of all meds (I've been on NDT for years). I've now refused 3 times.
Like you I asked my GP to refer me to someone on the TUK list who said he would be happy to prescribe NDT for me but that he wanted me to stop taking all vitamin tablets as they weren't needed except vit D. I complied and sent him a lot of private tests that he asked for but on the second zoom meeting he practically shouted at me for not being under a proper endocrinologist before (he obviously had no time for the late Dr S. who had been my saviour) and then told me he wouldn't agree to prescribing NDT afterall. I daren't say what I thought of him!
My hospital endo has now labelled me as a difficult patient and assigned me to yet another endo and once he realised I wouldn't come off of my medication he then got stroppy and interrogated me as to why I'm not on levothyroxine. I told him there was no way I would stop all my meds as it was wrong and people had been made ill by doing this and I also told him there was no way I would be put onto leveothyroxine solely as it didn't suit me. (I've since learned that he is a Jnr Registrar training under [name redacted]) which says it all so I'm glad that I had the audacity to stand up for myself and will continue to put my trust in the wonderful people on this forum. Sorry for ranting but I feel very angry on your behalf and behalf of all thyroid patients that are put through unecessary stress and anxiety by these people who call themselves doctors and are meant to be a caring profession. I hope you get well soonest. Hugs xxx
Thank you so much for your sympathy and anger on my behalf. I too had asked to see someone on the Thyroid UK list (the personnel of which he was really damning about!) I did not get to see the person I asked for, but the Head of Dept., as soon as I saw him I had a pretty good idea it was hopeless. His first words were I wouldn’t prescribe T3 for you with your high blood pressure. This was one of the many matters I hoped to resolve. I had a bad attack which consisted of very, high blood pressure head face and neck pressure/weirdness, and vertigo. The paramedic referred me to A&E where I was put on Amlodipine - no explanation for sudden attack. I have since come off the Amlodipine (side effects were bad) I have been monitoring BP everyday since and it is consistently in the normal range. This is good but still worrying as to what the attack was. At the end of the second appointment he said he wouldn’t rule out giving me T3 !!! From his reluctant way of saying this I felt it is very unlikely to happen. Congratulations on standing up for yourself - we shouldn’t have this sort of struggle when we already don’t feel great. Thank you again, take care.
Oh now I know that we are talking about the same person and it all makes horrible sense. I avoided being referred to my main hospital where I've been grateful for exceedingly good care in the past. Another forum member gave me the heads up about the appalling attitude of the endincrology department there who would not countenance prescribing T3 or NDT under any circumstances. I thought I was safer being referred to my local hospital but obviously not. I had a hemi-thyroidectomy about 30 years ago and have been funding my thyroid meds ever since and looks like I will still continue to do so.
I just can't understand why I need to come off of all meds to prove anything, given that they don't want to know about symptoms and go purely by blood tests - seems to be very wonky logic somehow☹️
Oh dear another voice of condemnation - it make you wonder how many patients he is responsible for wrecking, it’s quite frightening. As far as the coming off meds is concerned I can only think there is an agenda of some kind - although what it could be I don’t know. If he keeps doing this, and sees the damning results, you’d think anyone of intelligence would conclude they’ve got something radically wrong. But when you have a bigoted person writing the Guidelines, which are slavishly followed there is just no possibility of progress or increased knowledge.
But it doesn’t though, does it? When essential hormone replacement is suddenly withdrawn, the effects are felt throughout every system in the body, some of which will never recover their previous functions as well as they were before… and we’re left to suck the mop for these idiotic ego’s negligence or worse.
Kazania Perhaps that was an awful reply and I apologise - I was undoubetedly feeling very upset and angry at the way thyroid patients are treated and for the stress and anxiety that endos seem to put us through.
Zephyrbear, as I have said to Delgor I was concerned about what damage might be being done - apart, that is from circa three months of ‘non-existence’, which I had to endure. I hope none, but only time will tell. I am beginning to get back to were I was. What a stupid waste of a life. This Endo is cavalier to least the least, if not downright dangerous. Thanks for your support.
I feel very angry on your behalf. I understand that it is important to ensure that someone has been correctly diagnosed with a thyroid disorder, but you had evidence of a raised TSH at diagnosis.
He has made you very ill and treated you as if you are a liar (or at least incompetent). What right does he have to take such a risk with his patients? He could have done an ultrasound which might have given him useful information.
I am not usually one who advocates complaining but would personally put in a formal complaint.
I am so sorry you have been treated like this and hope you feel better soon.
Thank you so much for your kind words. I think he is a very blinkered, arrogant individual. He was very disparaging about a number of matters. I am beginning to feel more like I did before I saw him. But have not resolved any of the matters I asked to be referred for. Thanks again, sympathy from people who know about the Thyroid means a lot, as most people I see think I’m fine!
He has wasted about 8 months without addressing any of your issues and made you ill.
Looking at your before bloods it seems likely that you need T3. Your T4 is top of the range and your T3 is low. You probably have a conversion problem. Sadly I suspect you will get nowhere in D O’s clinic and would suggest you request a referral to another hospital. If you were not referred to your hospital of choice then they have ignored you right to choose and I would argue you should be referred elsewhere.
You said you are on NDT I think? If so, it looks like you could do with adding in some separate T3 and perhaps even reducing the dose slightly to bring the T4 back into the top of the range. If your issue is how to get the T3, I can recommend using the prescribing pharmacist at Roseway Labs. That woman is a godsend for us thyroid patients. For me, she's given me the prescriptions I need for NDT, I was already using T3 from a private endo. But I never found combination T4 & T3 very helpful to me. So determined to try NDT I have used her twice now. Details on Roseway Labs web site. I also get my private prescription T3 from them too. The tablets are Thybon Henning (German) and are 20mcg. They can be broken into 4 with the aid of a pill cutter or craft knife. You could start adding 5mcg at a time and allow 2-3 weeks to see how you feel before adding another 5mcg.
Looking at your results makes me think you need less NDT (T4 element) and more T3 to balance it out.
Hi FancyPants54, have replied to you but mysteriously my response seems to have disappeared. Let me know if you haven’t received a reply and I’ll re-construct what I wrote.
Kazania I know who you saw. This man is a well known menace to thyroid patients. He was arrogant and cavalier to me - by letter, sending me lousy instructions. He has wasted yet another year of my life. It’s hard not knowing where to turn and these people are truly dangerous - this one in particular. He is an idiot and he has lots of power. I tried a private endo - one on Thyroid UK list but honestly I found them to be no better. They are all trained in the same way in the UK. Anyone standing ‘against’ them has to look out for their own career prospects, sanity and safety. I don’t know how we can complain about this guy. He has it all sown up because he is instrumental in writing the guidance. A formal complaint should be made but ………. He knows how to abide by the rules - he wrote them. Something must eventually be done - surely. I listened yesterday to the Liberal Party Conference talk about the NHS. These guys do not know the half of what is going on.
I know you know who I saw - see my PM. You are spot on about him. I really think this is a dead end via the NHS. It is so marvellous to have HU, with all the sympathetic people who are there to help.
Trust? Well you only have to read all the comments here to see that there isn’t any, sadly. How wonderful it would be if we got some really useful and constructive help from sympathetic practitioners. I would like to say that my GP’s the two I have seen (one has gone on maternity leave) have been empathetic and helpful but they are bound by the guidelines and don’t have the in-depth knowledge required to help even if they were allowed to.
I urge you to complain. If all his patients put in formal complaints, the powers that be would have to do something. I put in a formal complaint about a Consultant, and thought it would be ignored, but as it turned out I was just one of a crowd, and he quietly retired.
Before you do anything, ask for your notes from the hospital. I can bet they will contain errors or omissions. Then you have more reason to complain and he cannot just dismiss it as you being "uncooperative".
Hi Serenfach, Thank you for your response and concern. As regards complaining, at the moment constructing a letter of complaint is beyond my mental capacity. The concentration required wears my brain out and becomes so unpleasant I could bawl my eyes out - which is no help at all. When you say notes, do you mean other than the copies of letters to the GP; which already give an santized version of what he said particularly about suppport groups and patients? Thanks again, I will think about complaining.
About a decade ago, before the NHS was in the dire straits it’s in now, I thought the government brought in Patient Choice - so you could choose where to be treated, and also, I thought, by whom.
If we were granted this right what happens when you choose someone and then get sent to see someone else?
Or have I got this wrong and it was only ever choice of hospital?
Hi Bearo, Yes, Patient Choice is still in existence, but I find increasing resistence from GP’s to refer me, doing so crosses from one health group to another. In one instance I was refused a referral and instead given a copy of my notes and told to refer myself, I was subsequently kept in hospital overnight for an adverse drug reaction! On this occasion however, the GP did everything right even to referring me to the person I wanted to see (on Thyroid UK’s list) his name written at the top of the letter - you couldn’t miss it. I think the person I saw intervened, regrettably, he was the last person I wanted to consult, having seen him on video talking about hypothyroidism and dismissing T3 out of hand. Why didn’t I just get up and walk out? Panic? I’d have been much better off. Maybe it only referred to Hospital of choice, I don’t know.
Hello, SlowDragon - answers to your questions: I’ve tried not to ramble too much.
2023 - The Endocrinologist said I have Hashimoto’s
Circa - 1999 - A GP said that the hypothyroidism was probably viral in orgin.
I am trying to read through the archived notes which I obtained from the GP, but the date order seems random and I haven’t found anything yet which refers to Hashi’s from the time of my original diagnosis, there don’t appear to be any comprehensive blood results, only TSH measurements.
TPO and TG antibodies
Referred to Rheumatologist with an interest in CFS for an episode of paralysis and ongoing incapacity (happily recovered from) his letter to GP states “raised microsomal antibodies for Thyroid Positive 1:6400|” (no idea how to interpret this).
Medichecks Feb 2020
Thyroglobulin Antibodies 17.900 kIU/L. [<115]
Thyroid Peroxidase Antibodies. <9.0 kIU/L [<34]
Medichecks Feb 2022
Thyroglobulin Antibodies 58 kIU/L. [<115]
Thyroid Peroxidase Antibodies. <9.0 kIU/L [<34]
Endo bloods - 20 Jun 2023
Thyroid Peroxidase Antibody 10kunits/L. [0.34]
Ultrasound scan. No. (Endo mentioned scans (I didn’t ask about them!) only to rubbish the idea. He said lots of (healthy) people have nodules, it didn’t mean anything! I can’t tell why the subject came up except as a way of denigrating American practitioners among others. (making money!)
Vitamin results
Calcium 2.36 mmol/L [2.2 - 2.6]
Adjusted calcium 2.38mmmol/L [2.2 - 2.6]
Magnesium 0.92mmol/L [0.70 - 1.00]
Ferritin 85ug/L. No range given
Total Vit D 109nmol/L No range given
Vitamins, D 2000iu, K2 Mk7 100mcg, Vit E 400iu, Vit A 3000mcg, B Complex, C 1000mg, Q10 100mg, Selenium 200mcg with Zinc 15mg, Magnesium 141mg.
Coeliac, this was ruled out by GP some years ago - don’t know what kind of test was done.
Endo June 2023 - BioPlex IgA TTG Antibodies. <0.5U/mL. [0 - 15.0]
Endo measured Cortisol 539nmo/L No range given
Gluten Free - No
But I think I should do this, a recent WW diet was very low on breads,etc, high on meat, eggs, veg and I definitely felt better. It just takes a lot of work, especially with a husband who is difficult to deal with re diet.
Full-testing
I have recently been tested, but I was not consistently on a regular dose, it has got me back to being over-supressed, so I agreed with a GP to do the Endos pattern of 5/2 100mcg and 75mcg and then re-test. I doubt if I can persuade them to do vitamins. Can you suggest who does a proper comprehensive test, the Medichecks Thyroid bloods & vitamins only includes Folate, B12, Vit D.
TSH. 0.26. [0.3 - 4.5]
T4 23.5 pmol/L [10.0 - 22.0]
T3. 4.1 pmol/L [3.1 - 6.8]
So back where I came in regarding T3. It will almost certainly be low, because that’s how it’s been with T4 high, but it drops when I take less Thyroxine - we’ll see in 8 weeks time.
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