Very Very Depressed re NDT refusal! Please can someone lift me up again!!

My visit to my GP this morning has verbally confirmed to me - NDT dangerous and he will not prescribe. (purpose of visit was to obtain a referral to private Endo on 27th July). After he studied the British Medical Thyroid most recent documents on the subject - (which he had up on his computer screen for me to read) he says the medical society has concluded resoundedly, that NDT has no clinical evidence and to the contrary, the medical industry, he claimed say it is dangerous. On that basis, he said he would not entertain the idea of prescribing it and added, the quicker it was withdrawn the better. I was blown away actually! He said that the medical society go by TSH and T4 and that if, blood tests show range is normal...then everything is working. He used an analogy of filling up a car with petrol....he explained that when the gauge was full, it showed that there was plenty of petrol in the tank!! I argued that even though the car had a tank of petrol...it still may not drive..or if it did drive..it might drive poorly. In the end we had to agree to disagree. I told him that I was not going to lay down and die and that if I had to buy this drug by going 'underground' then I would. Anyway..he has at least referred me so I can go to the Endocrinologist! My point is this: I am now seriously depressed and could do with some cheering up and spirit lifting from those of you who have suffered the same and are now happily on NDT!! Or..... is this all a figment of my imagination?

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42 Replies

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  • Keep yor chin up !....it's what people used to do very well indeed on until the synthetic T4 only drug levothyroxine took its place...newer does not necessarily mean better!If it's all singing and dancing as they would have us believe why are so many people not well on it and remain sick?...Then these powers that be who think they know it all decide that even t3( that could then help someone by adding a little to the t4 only drug ) is also useless and unnecessary and take that away too but they will be happy to chuck several other medications down your neck to try and aleviate the distressing symptoms that the 'excellent ' t4 drug they want to give you fails to eliminate! Yes t4 only does work for some(I don't personally know anyone well on it) but hey so does NDT and that's why so many (including me!)give up on gps and endocrineologists and source our own and self medicate with the support of group/forums such as this!

  • Hi.

    I suppose one way you could look at this - in a positive way - would be that you actually got what you went for , what you wanted , your Endocrinologist referal.

    Don't see why you should have to pay private though. You should get urgent NHS referal if you are symptomatic.

    Could you put all that 'negative' argument and strange (to say the least) comments from the GP in the 'bin' . And let go of it? It is so wrong and so upsetting and so UNNECESSARY of him/her. All GP needed to do was refer you to Endo who will, hopefull, do all the tests including FT3 and FT4 and Antibodies.

    Hope you have a good, helpful Endocrinologist consultation. The correct medication and the medical support you need.

    All the best with moving forward and finally getting somewhere.

    X

    Mary

    🐥

  • Actually you won't normally get even a non-urgent referral to endo for ordinary hypo as it normally handled in primary care i.e. GP. Being symptomatic doesnt make a difference. Neither will everyone be offered or require an ultrasound. Urgent referrals are only done, I believe, for suspicion of cancer or newly diagnosed hyper. Normal referrals are done, again I believe, for suspicions of secondary or central hypo.

  • startagaingirl

    Was your reply intended for me ?????

    Your reply? Not my experience.

    My reply (offered to the poster in a spirit of love, encoragement and helffulness) is MY experience.

    It maybe not a good idea to generalise but to speak from personal experience.

    Who mentioned Ultrasound?

    ?!?!?!

  • Hi - yes it was a reply to yourself. I wasn't generalizing, just giving what I believe to be NHS rules. I wasn't doubting or questioning your motivations at all, merely correcting inaccurate information about referrals. And no, you hadn't mentioned ultrasound yet, I was merely anticipating, perhaps wrongly.

    Gillian

  • Gillian If you check out NICE guidelines you will find out more accurate information on what you 'believe to be NHS rules'.

    No, you were not 'merely correcting inaccurate information about referals'.

    I think it is so wrong of you to use someone else's thread in this way.

  • I am not going to respond any further as you obviously feel very strongly about something.

    Good luck

  • Hi Mary

    Thanks you very very much for your kind and supportive comments - I will definitely try to 'bin' the experience. I was just shocked I guess at the outcome.. Some GP's don't like it if you have a voice, do they? They want you to sit there quietly and take what is given and leave their surgery, meekly. Anyway....now forgotten :) Thanks for your moral support.

  • I understand what you mean. And was glad you spoke up. I had so many experiences in the past with GPs shocking me with their unhelpful responses. I used to let it bother me and let it put me off going back ( which just delayed diagnosis) and even make me depressed. It's just not worth it is it.

    All the best.

    X Mary

    🐥☺

  • Love how you quickly and effortlessly rubbished his full petrol tank analogy!

    My GP is laughable too - I use him just for blood tests these days. The locust was even worse - asked what T3 was as he'd never heard of it 🤣 and demanded to know where I was getting my NDT. I didn't tell him...

  • If you fill your petrol tank with diesel. it'll be full, but it won't drive well ...

  • Yay! Also you could have a tank of petrol and badly adjusted carburettor or bad engine timing.......your car will not run well, it will backfire and all sorts!

    I love analogies :)

    shond2015 we are all here to help and encourage. There is always a way if there is the will. Sometimes it takes a big intake of breath to make a step away from perceived "norms" and doctors trying to put fear into you.

  • ha ha...:) I wished I'd been quick enough to give that answer! Especially since I was after an alternative to Levo to help my body 'drive' again! Thanks for making me smile x

  • My head of practice said he had never heard of NDT and looked it up and said it was rubbish.What I don't get is that people have it prescribed in places like Australia and America under health insurance so it can't be rubbish.

  • Hi Alma

    Exactly what my GP told me yesterday.....Said it was dangerous! and on that basis ...would DEFINITELY not prescribe....The only reason they conclude it might be dangerous is because of the potential risk for it to raise your blood pressure I think.....but according to those on here who have been through it, your body would soon know about this apparently as you get palpitations? An easy get -out for them.

  • Hi Shon2015.What I don't get is that I believe NDT is available through other health providers outside the UK.I am puzzled.Surely they would not prescribe it if dangerous.UK is a funny country sometimes,but do you see me laughing!

  • Hi Alma1

    I agree entirely! It is quite bizarre that these manufacturers can ship this so called dangerous drug to countries across the globe but the UK says NO! Like you, I'm laughing too!! (Not!)

  • I would love to see the proof he has that it's dangerous! Go easy on yourself today.

  • Shond2015,

    You can order your own TSH, FT4 and FT3 blood tests via thyroiduk.org.uk/tuk/testin...

    NDT isn't licensed for UK use so you were never likely to get it prescribed on the NHS. Most people using it have private prescriptions or buy online and self medicate. If you want to self medicate write a post asking members to PM you sources where to obtain NDT.

    If you include TSH, FT4 and FT3 results and ranges and say how much Levothyroxine you are taking members can guide you to transitioning from Levothyroxine to NDT.

  • Clutter - Many thanks.... I didn't realise that NDT wasn't prescribed by NHS.? ...I assumed it was simply down to postcode lottery. My ignorance...but I am learning.

    I will definitely be self medicating...no question....the only purpose for the private Endocrinology meeting is for a second opinion (as my GP and NHS Endo are in disagreement about my diagnosis) and better more substantial blood tests...

    have actually already ordered and paid for my first NDT and it will be arriving in August. I can't wait.

  • Give up and buy your own NDT if you are sure that levo doesn't work for you. Of course, NDT was the only thing available for many, many years and has been in use for about 100 years longer than levo.

  • What a total load of crap

    If any of what he said was true my husband,daughter and grandaughters would all be dead by now

    My husband is 74 and endured years if hell on levo and on levo +t3 then t3 alone its onky since he switched to NDT 12 yrs ago that life became normal

    Same goes for daughter and grandaughters ...one is treated by top of the tree NHS endo who endorses NDT ..

    Ignore your GP and the idiots at BTF just order Thyroid-s self treat and get well

    No point wasting time seeing endis unless its one of the few who actually know thyroid

  • I had to chime in with my experience asking for NDT. The nurse practitioner I was seeing at the time here in Canada ruffled her feathers and stated that NO clinical studies supported the use of NDT. I marched right back in her office a week or so later armed with the following published study in my grubby fist... and ready for war:

    ncbi.nlm.nih.gov/pubmed/235...

    Well after calling her bluff she took the low road in this battle of wills and still refused to fill the prescription... so I fired her right there on the spot.

    Sometimes you have to know when to walk away as these battles are wasted on a certain portion of the medical establishment. And it's either ego or ingnorance (or both) that prevent them from seeing the light.

    Suffice to say my current MD did prescribe NDT, and is observing my progess as he has another patient wanting it as well.

    Don't give up!

    XX Rusty

  • Thank you all for being such helpful, kind and supportive friends. Every single comment has cheered me up and put me back on the positive path again. I have ordered my NDT and it is due to arrive anytime after 1st August.....I can't wait.

    By the way...I took my bible (AKA 'The great Thyroid Scandal and how to survive it' Dr Durrant Peatfield) in with me to the surgery . At the end of the meeting, I offered the book to him as a gift. Suggested he might like to read it but surprisingly he declined!

    Thank you for being there when I was definitely in need x

  • I really feel for you. I think most of us have been in that situation where you leave the doctors/Endo's in total disbelief, stunned and shocked. This lovely forum saved my sanity. How rude of him to not want to read the 'bible'! I think I will arm myself with one at my next appointment 😁 xx

  • Hi Hele1

    I appreciate your empathy honestly!... I have never felt so alone at any point....which is why on my return home, I turned to you guys to help remind me that I am not going mad... I am extremely grateful to you all for the support and for cheering me up - x

    Yes ..... he was a bit rude actually...not in tone of voice...but in his manner and actions. He could have politely accepted my gift couldn't he? then he might have peeked at a few chapters that had pertinent comments and facts, highlighted in yellow!

    You should do the same! highlight the areas that make certain points and then you can quickly find the fact when showing him/her! Good luck x

  • Unfortunately shond2015 it is the way they are so badly taught (or not really taught) at medical school. They blindly follow a well trodden and accepted path of learning which has huge gaps... no intention of plugging those gaps, it would upset the apple cart to alter this pattern, and we patients pay the dire price !

  • shond2015 - Do hope you'll find a way forward soon and start to feel better. GPs do not know anything at all about thyroid dysfunctions and yet pompously pontificate to patients who know more about the problem than they do! They don't even want to learn as shown by your arrogant and ignorant GP's refusal of accepting the book you offered him. Unfortunately he's not the only one, that goes for the majority and is applicable to endos too... Good luck.

  • NDT Nondestructive testing right, just googled it never heard of it but sounds good if it is noninvasive and nonthreatening and provides you with a result and adurection towards the solution that solves the ruddy problem!:)

  • Hi Shond2015, please don't feel its the end of everything but be positive...knowing its the beginning to an ending. Depression will make you feel worse, try to uplift your spirits...life has a lot to offer. We are going fr one strength to another. Don't feel defeated. I have no idea of NDT...is it a tablet?

    Otherwise, look after yourself. Never give upxx

    Harriet

  • I am full of NDT so I am obviously dangerous. Quite made my day - I think I will have a T shirt made with a bomb on the front and TNT with the T crossed out and an N inserted. I have a feeling that if I exploded, it would sound like a small fart!

    Hope that cheered you up and replaced the negative bit!

  • Hehe! You could also add a Father Ted-style "Careful Now" as well! :D

  • Ha ha :) I have only just opened my laptop to see my messages. Your wonderful message had me laughing from the gut upwards!! It was so unexpected and so funny!! .. I loved it!! thank you for cheering me up so brilliantly. PS/ My depression has been lifted thank you!

  • His car analogy is inaccurate. For those of us who dont do well on T4 alone it is lije driving a car and only putting petrol in but no oil. The oil is T3 or NDT! Without this the engine will seize up eventually. Save thus argument for the Endochronoligist! The proof is in hiw many if us with TT's who dont do well on T4 only! My whole body has broken down after 13 years on T4 only, chronic fatigue, IBS and fibromyalgia and permanently disabled. Can only get treatment other than just T4 thru orivate Endo in my area!

  • Hi Sarahpk

    thank you for taking the time to think about a reply......and of course you are soooo right. Yesterday having left the surgery, I was in shock, despair, disappointment and panic - I really felt having severed ties with this GP that I was on my own with this awful illness.....I posted my thoughts and experiences and ....wow... the response I have had is lovely. so many of you understand and feel as frustrated and angry as I do...but what is more amazing is that you are all doing something about it for yourselves (and thank god you can......imagine if we couldn't purchase NDT privately?).

  • Isn't it time the nhs caught up with 21st century?

    Why, oh, why, are GPs still being gatekeepers, to services that are within private practice? I find it ludicrous that anyone wanting/needing an appointment privately has to explain, and then beg, for a referral. Surely, GPs must recognise when a returning patient isn't satisfied with current practice?

    GPs are supposedly overworked, and understaffed. Letting patients directly contact their preferred, (often well researched), consultant, surely frees up valuable GP time?

    Good luck with your journey back to health shond2015.

  • It is always worth checking with private clinics if they actually need the GP referral.

    Spire were happy to see me without a referral though I got one in the end from my GP when I mentioned Spire would see me regardless.

    Similar situation with Nuffield years ago.

  • Hi Helena

    Yes I am going through Nuffield too, in Taunton. They DID request a referral but as you say, there are many that will see a client without any referrals.

  • Webar4780 .thanks for your thought provoking comment.......

    But then the whole system is poorly managed isn't it! When you consider the behaviour of those financial chiefs at the top of the NHS Trust who took the decision, based on their balance sheet, to send guidelines to gP's across the country to stop prescribing T3....this action has been based on a clinical thyroid survey which had a pathetically small sample size of 70 patients (this is what the GP told me yesterday) which concluded that T3 had minimal clinical value. Absolutely shocking. This small sample survey by the way was done in the Eighties, he said. A long long time ago. Outrageous that in the 21st century, no further surveys have been carried out to determine its value.

    Anyway... I got the referral and I go to Taunton next week... This is for a second opinion, and a fuller testing status. I will post the results of my meeting on here. x

  • Time for a new doctor. Find one who will prescribe NDT for you. getrealthyroid.com/get-real...

  • I wouldn't bother with a referral to a private endocrinologist unless you want to try adding T3.

    If you want NDT then your best bet is to see a private GP or buy online.

    I have paid privately for both. The Endo was good and came recommended on here. He was very open to T3... if we found I needed it.

    With the private GP I told him that I wanted to move to NDT and I had my prescription the following day.

  • Hi Helena877

    Thank you very much for your advice..

    Going through a private Endo was a bit of a knee jerk reaction from me, based on a previous appointment with the arrogant GP three or four weeks ago. When I left his surgery having asked if he would at least consider letting me trial NDT (Of which he knew nothing about) and his response being: " let me speak to the pharmicist about the side effects of Levo" I knew that he wasn't going to help me...

    I thought I would seek a second opinion regarding my health status....and decided to go to an Endo,rather than a GP, firstly because they do specialise in the various glands in the body with a deeper understanding (I hope) of how ALL the hormones work in synch with each other whereas GP's have a more general, less in- depth knowledge. (well mine certainly has limited knowledge on how all the hormones work to gather.

    Secondly, because the first Endo I saw back in March, stated that he didn't even think I was hypothyroid and that my symptoms were as a result of an antidepressant (Sertraline). Next, the blood test came back with a high level of Peroxidase antibodies so he recommended I stay on Levo...GP stated I was hypo...but refused to test for T3 levels or any other levels as he said I was normal.

    The appointment isn't too expensive.... (equates to a couple of hairdresser visits!!) and as it will be just a one-off I'll shoulder the financial pain!!

    Thank you for taking an interest and offering such a good piece of advice however. Many thanks. Shon

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