So I spoke to gp today in regards to the endocrinologist report from June 21st in which the endocrinologist as recommended I see an endo who will pescribe ndt 😡 this appointment is at Newcastle RIV, does anyone know if they have a good endocrinologist at Newcastle RIV??,I have no idea who she as recommended because she said she can't say who it will be.
Quite frankly I think this will be another wasted journey for me, I've seen 4 endocrinologists now within the nhs and each have refused ndt saying the nhs are not licensed to supply it, so how's this appointment going to be any different 🤦♀️ I can see me struggling to travel there to be told the same crap....we don't pescribe it..😡😡
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birkie
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I’ve given up on my GP. Well, I would if I had one, which I don’t. I guess I mean, “I’ve given up on my GP surgery”. You just get who you get if you phone, and recently that’s been someone who doesn’t give a flying fig, doesn’t listen to what you say, writes notes that pretend things were said when they weren’t (and vice versa). Oh, and speaks such garbage it’s hard to take anything they say seriously.
Of course, chances these day are you may not even be seeing a fully qualified doctor but one of these PA (physician associates) instead… thankfully, I’m able to avoid my GP surgery like the plague at the moment, but were I to be in need of their services I would be checking to see who and what I’m seeing! 😠
Could even be a cleaner, mind you would they be any less knowledgeable about thyroid than your average GP? Who knows, they might even be an improvement 😆
I've recently spoken to a number of specialist within the nhs , 2 parathyroid surgeons and 4 endocrinologists , although at least 3 endocrinologists were the most awful and obnoxious people I've ever met, the last one I saw just recently at least had the backbone to actually admit her hands were tied by nhs restrictions and rules due to nhs policy.
Although she apologised for not being able to help me it really didn't cut it, i still left her clinic as worse off health wise as before 😡
If we are going to have AI in the medical profession , I don't think they should be programmed by inferior endos 😂 that would be defeating the object ..self learning bots would probably be a better choice ...ho and maybe they could learn some bedside manner 😄
If we are going to have AI in the medical profession , I don't think they should be programmed by inferior endos 😂 that would be defeating the object ..self learning bots would probably be a better choice ...ho and maybe they could learn some bedside manner
Yes that’s the risk
But …….if AI could learn on the job and assimilate knowledge we might finally make progress
birkie, I would phone or preferably email so-said ‘head honcho’, or at least his secretary, with a short description of your health history. Especially concentrating on your difficulties taking Levo and to ask the question directly about NDT, well before considering coming all the way to the RVI in Newcastle.
This could work out as your basis for a complaint, wasting minimum time and effort - when you get a reply.
This guy, head of department, is the guy responsible for very much of the National Guidelines and we know how biased and destructive they are. To my knowledge the department (ICB and local GPs) is hardline ruled by him. The statistics of T3 prescriptions in the area are plain to see.
If you get a reply you could use this to make a concrete complaint, rather than waiting around for another ‘painful’ consultation with him or one of his sidekicks.
The ICB and each GP practice within Newcastle do not pay even for T3. The published statistics also back this up. It’s been written in my GP letters referring me to endocrinologists both private and NHS.
OMG this is the worst region for thyroid treatment , and this is the last hospital anyone with thyroid issues should attend , the Prof in charge has a serious problem with .
1 - Thyroid patents
2-Female thyroid patents
i know this sound dramatic but i cant put it any other way .
i have been following your journey as i am in a similar situation myself and yesterday received another blow . I'm sorry i cant offer any solutions .
I have no idea whether it’s the worst area but I do strongly suspect it’s the case. Extremely bad luck for us living here! Originally I am Scottish and went privately back to Scotland only to find that endo was trained by the ‘head honcho’ we are talking about. Dare I say £500 wasted!
We have ‘a man on a mission here in charge’. I always find people like that extremely dangerous. They are either incapable of looking left or right or have made that decision themselves. It makes life easier to have no conscience. It’s more influenced by politics (small and large P) than being medical or patient oriented. It’s just a similar set up of any modern ‘business’. Pure self interest.
Similar to many others on the Forum, we are in charge of our own cases here - as best we can.
I actually turned down Newcastle RIV this year simply because I have been travelling back and forth to Liverpool [ diagnosis of primary hyperparathyroidism] and I just had an appointment at Liverpool then my appointment for Newcastle was the very next day..[ on appointment letter] so I cancelled it , and endo sent me to Carlisle which was another wast of time, as the endo refused to help saying the nhs are not licensed to pescribe ndt she then put me back to the gp.This gp as now referred me to an endo at Newcastle RIV...again ..and I mentioned the travelling was getting to me , I also mentioned Liverpool, would there be anyone in Liverpool who may help? Crickets....but truthfully I asked my parathyroid surgeon the same question when I last spoke to her, and she was in the same mind frame...nhs endocrinologists don't pescribe ndt😒
So what the hell can I do?
I can't keep asking my son to pay for thyroid medication for me, his looking to buy a house soon , and anyway why the hell should we as thyroid patients rely on family members to buy our medication 🤷♀️
I do fear that there will be no one within Newcastle RIV that can help me , and I will be sent away again 😡 and what's annoying is my TSH is 45.6 and will just keep increasing if I don't get the correct medication...sickening really😡
When my TSH went to 0.5 on t3 the gp nearly had a fit..[ I obviously couldn't stay on it to long due to side effects but in the short time I was on it it did raise my t3 level and decrease my TSH....gp wanted me off t3...and so did the endocrinologist they won I was taken off it😡😡😡😡😡
I'm so sorry. You will be told it's all in your head that you are unwell, in fact you are probably not hypothyroid... if you can invoke your patient choice to see someone in a different area. Others on here will have experience of how to do this.
Like to see then try your not hypothyroid...my TSH is 45.6 ...and rising...mind you not one endo is bothered about my high TSH level...all 4 I've seen were not in the least bit bothered 😡.
But by God..let your TSH be low or be under range and the endocrinologists and GPS will have a fit😡...are these so called specialists just dumb or thick🤦♀️ because surely a high TSH level is just as bad as a low one.
I guarantee if I were taken into hospital today and my bloods were taken the first thing to be mentioned would be my high TSH.....cretins😡😡😡😡
It seems to me that if Newcastle is actively hostile to T3 and NDT then why bother referring any patient there who cant tolerate Levo or who remains unwell on it and is looking for alternatives. It makes you wonder if doctors are setting up their patients to fail.
They have set me up to fail 4 times now😡 Firstly knowing I cannot tolerate synthetic thyroid hormone and secondly knowing my TSH is way out of range at 66.9 and 45.6...wouldn't you think they'd be concerned about a patients health before dismissing them because the flipping nhs don't pescribe ndt .
Honestly... it's like a monty python sketch....sorry I know your bloods are awful but we're the endo police....we do not pescribe the medication you need👮♂️
It's the dead parrot sketch 🦜 only it's not a parrot....its a human being 🤦♀️
I wouldn't go to a Newcastle endo if you paid me! Head person is vehemently against T3, let alone NDT. I suspect his team are told to act the same.
I think it's a fair way for you to go to Leighton & Macclesfield hospitals Cheshire? But there's someone who definitely agrees and prescribes NDT there. Pm me if you want to
Think you need to follow TaraJr's advice and ask to be seen at the Cheshire hospital she mentions and definately DON'T accept the Newcastle appointment , where NHS referrals are concerned. Other members have made clear that in Newcastle, NDT and T3 is outlawed, and the anti thyroid medication of even T4- Head Honcho is there, and rules with an iron fist.
At the moment you do not know if NDT is going to suit you either. The only alternative would appear to be injections, if NDT does not suit. OR, which T3 tablet or capsule did you try that did not agree with you? TSH came down to 0.5 and raised T3 level, which was progress. Is your Roseway NDT compounded for you with olive oil or something you may not react to, or is it Armour NDT? If the Roseway NDT doesn't suit, you could ask Roseway to trial you on Thybon Henning T3 which is £60 for 100 tablets of 20 mcg strength , which can be quartered. Roseway dispense it on a private prescription. Because they have maize or corn in them I felt they would upset my stomach, but they appear to be fine for me. If your son ends up having to finance your thyroid prescription , this is the cheapest option, and Thybon does need the Roseway private prescription, as it is off license as far as the NHS is concerned. I have a feeling you may have had Roma T3 capsules in the past which do not agree with a lot of forum members.
I think I had the thybon, teva also roma just tried vecemile unfortunately none I've tried both t4 t3 have worked for me, there aren't many options for lactose free and I'm very sure it's other fillers also that cause me gastric issues. I fully take on board the honcho at Newcastle😡 and are going to again refuse to see anyone there, I'm going to draft a letter to the practice manager stating.." although the gp I saw on Monday July 15th as made a referral to a endocrinologists at Newcastle RVI , after looking into the likelihood of being pescribed ndt at this hospital ,it appears there is no one who can say with certainty I will be prescribed it, this journey to Newcastle will be very hard for me , but to go and get sent home without the proper8 thyroid medication because the nhs don't pescribe it would be detrimental to my already fragile health.
I will then mention Tara's advise going to Cheshire to see the specialist there and explaining why...this nhs I'm under [ Cumbria] have played about with my health in both thyroid and parathyroid for to long now 😡 I truly fear something is going to happen to me...be it a heart attack, or stroke😔
You won't have tried the Thybon Henning T3 as it is private prescription from Roseway , usually. It isn't licensed for NHS to prescribe. It does have corn or maize in it, though.The Roma T3 you tried isn't well tolerated by some. Vencamil is T4, and Teva T4 has mannitol, not well tolerated by many. Teva T3 has maize starch and is provided by NHS and would likely be the best of a bad bunch of NHS T3, but likely to be chopped and changed to other brands, frequently on NHS.
I would avoid maize/corn normally, but although in Thybon Henning T3, I seem to tolerate it. If NDT doesn't end up suiting, you could try the Thybon T3 on private prescription from Roseway.
I can only have one private prescription ..the ndt by rosway, my sons paid for it and I can't ask him to folk out for another prescription 😔 he is buying a house soon, entering into a mortgage, I can't ask that of him ..I'm thankful he as paid for this❤️ so 1, if the ndt works I've to try to persuade the nhs to pescribe it..2, it doesn't work and I'm back to square one 😔 not good for my physical and mental health😔
If NDT works you are unlikely to get the NHS to prescribe it, although TaraJR has directed you to an NHS endo who does prescribe it, out of area. Look at the problems Waveylines has had recently trying to keep her Ndt prescription when she has a cast-iron,proven need and has had it on NHS prescription long-term. Cut -backs in the NHS will only continue, and Ndt will be very hard to get prescribed as a new patient, especially out of area. The NHS , as you know, goes at a snail's pace as far as being seen goes, even when urgent, and even in an extreme case such as yours. You can try. If you don't try you won't get it. Even if you are lucky enough to succeed, it will be long after your Ndt prescription runs out.
If you can only have one prescription of NDT, when that runs out, it would be worth the £60 to Roseway to try the Thybon T3, which is a 20 mcg strength tablet. Initially you would introduce it as 5 mcg which is a quarter of a tablet. You may be lucky in that you may be able to tolerate a quarter of a tablet at a time. I avoid corn and maize but seem to tolerate Thybon okay.
Some forum members have their thyroid meds with food and just accept that it may not be absorbed as well as taken away from food, and may need a higher dose to compensate. If you had to try a tablet again, perhaps take it with a meal that you know you tolerate well, to see if this helps you tolerate the tablet.
It is thinking one step ahead so that you have a plan when the sole Ndt prescription you have runs out. I think your Ndt from Roseway would be far in excess of £60 and is something you could budget for from now on for when your prescription runs out, which is better for your physical and mental health, in the long run (having a clear way forward). You are already a Roseway customer now so will have access to further thyroid meds within a short time scale which is great, BUT, you would need to fund it yourself. Ridiculous I know, but realistic, I'm afraid.
Well I'm on disability allowance I don't have extra money hence my son helping me...I don't smoke or drink I have no luxuries I budget my money very carefully..disability living allowance doesn't go far😔 that's why I've been fighting the nhs...if I had the spare money each month I'd never bother the nhs...but on top of the thyroid medication I've to find the money for private bloods to😡
Don't know who your M.P. (member of parliament)is, and if it is someone new after the recent election. Might be a good time to acquaint him or her with your situation and get him or her to earn their stripes, Birkie.
You have been treated dreadfully by the NHS over the years and you have a right to expect better. I think you should discuss all this with your M.P. and see if they will help you get satisfaction.
When I came back from my last endo appointment I was as mad as hell, my son came with me for support and couldn't believe how incompetent the endo was,she went on about ndt not being pescribed because of mad cow disease 😆 I posted the story..now we all on here know that's cow 💩 because its pig thyroid not cow thyroid they use and I told my son I was thinking of contacting my mp..think I just might look into that👍
I know wheat and corn effect my gut to ,I can't stomach cereal I stopped all breakfast cereal when I noticed I had bad stomach and gut pain after eating it, and I tried whetabix, musilie, everything I just decided it was best to eliminate it, when I did I had no stomach/gut problems [ this was way before I lost my thyroid] I was diagnosed in 2015 with reactive colitis and lactose intolerance went dairy free and eliminate a lot from my diet🤦♀️ lost my thyroid in 2019😔
I wouldn’t hold out on Newcastle endos… I saw an NHS endo their privately years ago who totally ignore my FT3 was 0.06% in range and suggested many other things were keeping me ill. Since then I have noticed this man still holds sway in thyroid research and ‘replacement’ consultants are very anti T3 never mind other hormone replacements. Earlier this year went to a Gateshead/Newcastle Falls specialist and before I had even sat down to discuss fainting she had laid into my TSH levels despite the fact a non- local endo had been happy with them as FT3/4 in midrange.
Oh dear ,after a disastrous appointment with an Endo at Durham & Darlington NHS i was wondering about Gateshead being an option . Guess i can scratch that idea .
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