I currently take 2 and 3/4 grains of thyroid s, my gp is happy for me to take this and supports me fully. He referred me to the endo last year to see if they could prescribe me something rather then having to self source and I have just had a call from the consultant who has suggested that I stop my thyroid s for a month as my t3 is too high, when I retest in a month she predicts that my t3 will still be too high, or at best in range, and so they will only be able to prescribe t4 ( levothyroxine ) and then if and when necessary t3 will be considered.
I don’t know what to do..... I feel completely petrified at the prospect of stopping my thyroid s and having no thyroid meds at all for a month. I can’t imagine what that will do to my system? I am not optimal at the moment but I feel a million times better then I ever did on thyroxine alone. So to stop my meds for up to a month to only reintroduce thyroxine at the end of it is seems unimaginable.
My main aim when seeing the endo a year ago was to get a prescription to help me going forward, but I was always aware it was a long shot and so I would self source from the numerous options available from Thailand, but as you are all aware these are now non existent and I only have a couple of months worth of thyroid s left so I have to have another plan, but I am just not hopeful that the nhs are in the right path? Please help me, I really don’t know what to do for the best. My husband has suggested we try and go private, but I know that is going to cost a fortune and we just don’t have it to spare at the moment.
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dizzy1979
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New NHS guidelines tell endos to take anyone "who doesn't have a clinical need" on T3-containing therapy off it and onto levo only purely because of the cost of liothyronine. NDT is not recommended by the NHS so that's probably another factor. If you feel good on Thyroid S then keep doing what you're doing. I have the impression that most endos know nothing about proper treatment of hypothyroidism.
I am fighting a losing battle aren’t I, I feel ok, I have been better for sure, something is def off right now, but what I am not sure. My t3 is high but everything else was optimal thyroid wise. B12 and d were low.
"NHS England guidance states that prescribers in primary care should not initiate liothyronine (L-T3) for any new patient, and that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine (L-T4) where clinically appropriate. Prescriptions for individuals receiving liothyronine should continue until that review has taken place."
"3.4 Products That are Not Recommended for Prescribing
● Thyroid extracts (e.g. Armour thyroid, ERFA Thyroid), compounded thyroid hormones, iodine containing preparations, and dietary supplementation are not recommended. The prescribing of unlicensed liothyronine and thyroid extract products are not supported as the safety, quality and efficacy of these products cannot be assured"
Dizzy unfortunately to get and to maintain an NHS prescription for t3 we sometimes have to jump through their hoops against our better judgement. This has happened of times.
This doesn't mean that we don't have frank discussions with endos or that we don't stand our ground sometimes but it also means that we can't antagonise them or seem to be awkward too much.
This doesn't help your situation but I wanted you to know that you are not alone at having to go against your instinct.
I appreciate that we have to play the game, but I can’t imagine life without meds for a month? I would be useless! I work full time and have a family to look after, I wouldn’t be able to function. The registrar I have been dealing with is sympathetic, but says her hands are tied and she can give me anything except t4 until my levels say otherwise. But will they even prescribe t3 at that point?
Dizzy I once over medicated on my ndt and had to stop taking it. I was told two weeks I thought that would be impossibeo and was genuinely scared. But actually I was fine. I was really surprised. Its is important to keep the t3 in range as too high can cause harm if raised long term.
Since then my B12 was low but in range. Addressing that has made a massive difference. My temperature finally move back into its pre thyroid range and I had to reduce my ndt dose a little. I was amazed and delighted. Clearly b12 must help with uptake of thyroid hormones into my cells somehow.
Thank you. I wish nhs endos would believe this. I feel ok. But have been better. I s as m running low on thyroid s and was considering the endos as an option for future meds but it seems that is not going to happen and now need to figure out a plan b for when I run out.
I don't follow. You seem to have misunderstood what I wrote. I literally said that the NHS does not support the use of NDT... And the guidelines make it clear that endos are under pressure from the NHS not to prescribe lio, and to take people off it if they can justify doing so.
That is incorrect Zazbag if the clinical need is there the nhs will support a ndt being prescribed Scumbug is right. However you have to prove there is a need. Once you have been reviewed and the need agreed prescribing should continue. That is a fact as I am one fo those people who has been reviewed & continues with ndt being prescribed.
Its therefore extremely important who you choose to review your thyroid meds. Money does play a part in this -for me becomg ill on levo only and having to have to have so many different meds to ameliorate all the symptoms levo did not address cost more than the ndt........something worth looking at when you are putting your case forward. The other being is that ndt is still much cheaper than liothyronine.....
You have to show that you have a conversion issue these days -that is your T3 is low despite being well medicated on levothyroxine. Or that you have significant physical symptoms despite being well medicated or you are unable to tolerate levothyroxine. They dont let you usually go straight to ndt but if youve been on ndt for years already they have to be careful they are not causing you harm by stopping it......this is something you can politely challenge them on.
Liothyronine is more expensive then ndt......well it was last time I looked.....so thats a plus on your side that ndt is cheaper.
If the endo recommends ndt then your GP has to agree to underwrite it on a named patient basis. In practise what this means is one doctor has their name attached to that agreement -usually the most senior doctor and if its been recommended by a specialist they feel more secure over doing it. Some GPs wont underwrite it and then you are faced with shopping around the surgeries to find out from their practise manager if they will take you on on that basis. Its an ardous process and you have to be persistant and be prepared for the long haul.
I will admit that when I first went through it it was less stringent then it is now but it took me 3yrs and all the while I self funded my ndt & surgery knew that and admitted it was the best med for me.....hence my switching surgeries in the end.
In your case though they have to prove they wont do harm by switching you to levo after your too high hormone levels has come down. You do have the right to a second opinion but pick very carefully who you see.
No apologies needed thank you for the information, I will be challenging them going forward, all be whilst I am self sourcing and medicating which I am sure will irritate them even more and not help me get anywhere with them. But it is my health and I am sure not one of the endos who are lolling after me have a thyroid issue.
The website I sent you has been totally fine for me, and I consider the cost to be worthwhile for the improvement to my quality of life. I have an appt with an NHS endo on Monday and will be requesting that they take over prescribing it for me, but I'm not getting my hopes up. If I have to I will keep buying it myself. Obviously your thoughts and situation might be entirely different, but I just want to reassure you that it's not difficult to get these meds from the website I sent you, it just takes a week or two for them to arrive and you have to pay a customs charge.
I really appreciate your help, it’s definitely a help to know there is an option to purchase. These are not as costly as the other website, still more than the self sourced thyroid s, but it looks like the days of those are long gone. Thank you again
Very expensive is relative. If it means you can keep working and earning money, that allows you to pay for it, then I consider that worth the investment. Why throw years of your life away being fobbed off by the NHS when the solution is right there?
Do we know that it is even going to be available again though? Even then if it is I still have nothing to use once my supply runs out until then. I will need an alternative as I can’t face levothyroxine alone.
But for me they want me to be off the meds for a month, and then she said they will give me t4 only, unless test results show I’m out of range. Despite me telling her that for 16+ years I felt like I was dying a slow death on t4 only and as soon as I introduced ndt I felt human again.
The thing is, when you tell people things are difficult and expensive, you discourage them from looking into it and finding out for themselves. It's not difficult to get it, and the expense is relative to the person's situation and how desperate they are to feel better. People should be given the information and allowed to decide for themselves whether they consider it expensive.
Be worth travelling for this Dizzy......thats what I did and it was worth it as to be honest it was a tick box process as had been on ndt for years. GP did bloods before my visit and sent to him. I think he saw me three times in 5 years....then recommmended long term treatment as was stable. Sadly now retired or Id pm you the name. Thyroid uk hold a list of thyroid friendly doctors -be worth checking in with them. Is it Lynn she needs to contact - anyone know?
Hi and I’d like to say first off. Don’t worry. I was shocked when I was told the same and sought help here too. Although I was told STOP EVERYTHING. yet here I am still some year on not taking anything and my endo was convinced I’d relapse back into them.
I think it was called Stop n Block
I kept some just in case I relapsed but didn’t need them. So far.
If you mean Stop and Replace, this relates to people with Graves (hyper) , who do sometimes have periods of remission. But this post is about hypothyroid, so it's highly unlikely that dizzy will be ok with no hormone replacement at all
There's two separate issues here, one is whether they will prescribe levo , without you 'proving' that you need it by withdrawing all exogenous hormone for month, which sounds like Endo is questioning your original hypothyroidism diagnosis. Surely if you already have an accepted NHS diagnosis they should continue to provide Levo without a break ?
The second , is whether when 'settled' on Levo they will agree to give you a trial of T3 on top .There's no guarantee of this , but there is no logical reason to be off all replacement for a month before being put on levo to see what your FT4 FT3 are like on it. If they did a straight swap from NDT to LEVO they would be able to test for FT4/3 after 6 weeks, and it would be representative.
Unless they are questioning your diagnosis... can you prove it ? was it NHS that diagnosed you and put you on Levo in the first place.
I'm just thinking aloud , sorry it's not much help. you must be worried sick. But i'd not fancy a month on nothing at all either, it seems unnecessarily dangerous.
If you can find no other option but to go back on levo until you can find a better alternative , i think it would be much safer to do it without the month off, and if your GP is supportive , would he not be able to prescribe Levo ?
Thank you for your thoughts. I was diagnosed by my old gp when I was 23 so 17 years ago, after feeling like death for almost 2 years but just putting it down to biting the candle at both ends! My current gp has also prescribed me levo, and I have blood tests results form 2 years ago whilst I was still on levo so I don’t think they could possibly argue the fact that I am Hypo? ( not that it would surprise me if they did ). So I get the gist that because my tsh is suppressed as it should when On ndt and my t3 is raised ( I am unable to find a sweet spot of medicating at the mo ) they want me to go cold turkey for a month and then see what my levels are, the endo suggests that my t3 will still be raised ( despite me telling her that t3 is short lived ) and my tsh will be in the normal range ( of course because by their guidelines I am hyper currently. So I get their illogical nhs thinking, but as specialist who deal with thyroid issues daily, they are missing the bigger picture that if I stop ndt it will leave my system very fast and I will be on deaths door for mo the trying to get to a good level again. I don’t want levo alone, I spent over 15 years on that feeling horrendous, ndt has given me a new lease of life, and although I have days where I don’t feel great I have far more days where I feel normal again.
I totally get that you don't want Levo alone..15 yrs is long enough to know . And i can't follow the logic of a month off, a month is longer than needed to get T4 and especially T3 out of your blood , but if your TSH has been very low for a long time , a month may well not be long enough to allow it to rise again.... they know this , that's why they won't retest after dose change for 6 weeks, and they know it may take much longer than that after Hyperthyroidism ( which they are effectively accusing you if being) so they seem to be aiming for the middle ground and crossing their fingers. I bet they will insist on including TSH level in their treatment decision though. they don't seem enlightened enough to ignore it.
No one knows what someone's TSH will actually do though, eg. i still have my thyroid , (no idea what state it's in after 20 yrs autoimmune hypo) and once stopped Levo for 12 days and then took 2 days normal dose and retested...... TSH went from it's usual 0.05 to 7.89! which surprised me how fast it had gone up, considering it had only been 6.8 at diagnosis. (my FT4 was the same as usual)
Bearing this i'n mind, i'd push them harder for a written explanation of what they are expecting to achieve by withdrawing for a month ie. are they interested in your FT4/3 or TSH ?
And without wishing to worry you more than you already are, i'd ask for some written reassurance that someone with Very low FT4 and FT3 for 3 weeks would not be at greater risk if they were to get Covid in that period. which they would not be able to provide
Unless you can find a more intelligent Endo, it does look like the only way to be allowed to try T3 with this one, is to allow yourself to be made ill for months with no guarantee you'll feel well again if they give you some.
I wish i could actually help with what you really need , but i'm still stuck on Levo , and have already lost everything, so have nothing more to lose by playing the stupid game.
The position you have been put in makes me so angry.
I’m pleased that worked out for you, I am hypo not hyper my t3 is slightly raised at the moment with my current meds so they want me to stop all meds and retest in 1 month
You said the Endo said they’d consider t3 so it’s not off the table. Maybe just stop meds for a week pre the appointment To get everything down (but not out) and optimise vits then see where you’re at levels-wise? But can’t really see why he didn’t just suggest a switch from your ndt to Some t3 and t4 then a retest. Maybe you could call him or email your concerns for your physical and mental health, the impact on your ability to work, your marriage..! I’d really labour exactly what will likely happen so he knows what he’s going to put you through.
Instead of going cold turkey (no meds) for a month why not try reducing your current dose by half (don't tell GP)and then test . Do you have any current results you could add to post?
I'm not a fan of just stopping meds nothing good will come from it since you're already stressing over it.
This is my plan now, I am going to try and get to optimal levels and then plead my case that it works and see if they will prescribe ( unlikely I know )
I would contact my GP and explain under no circumstance do I feel comfortable stopping my thyroid meds but Im willing to meet you half way and reduce them UNTIL after the blood test.... either way your at their mercy!
A good knowledgeable endo would know that your TSH will be suppressed on a ndt......what matters is the T4 & T3 levels and how you feel. Id switch endos asap.......this one sounds like knows little about thyroid (typical) & will treat via the TSH level which will make you ill.
Wouldnt recommend stopping for just a week unless you are prepared to admit thats what youve done......otherwise the blood test results will supprt y our endos underhand means of saying you dont need the added t3 in.
T3, as I'm sure you know, varies a lot throughout the day, and I usually leave 12 hours at least since my last dose of T3 before any bloodtests. Sounds like you need a second opinion from a different Endo - I had to use that route ( I am a poor converter so T4 went too high, Tsh non existent, and T3 in the pits - and the first Endo was only prepared to mess about with T4 levels. I used medichecks ( there are other companies ) to do a full blood assay one month after my gp had done one- and discovered my diet, a healthy one by Western standards, was not helping - removed gluten , dairy, and soy, upped D3+K2 and B group , and that worked for me - the second Endo gives me a (free) private prescription for T3, which I source in Europe. ( cost £90= for a year's supply ) T4 still from the NHS. Don't give up- your GP can refer you to a different Consultant - they don't like doing it, but - it's your health - you have to take charge.
Thank you so much. As of yesterday I have been gluten free, so still early days, and I have ordered different Vit d /k as the oral one I take doesn’t seem to be sting enough. I will ask for a different referral for a second opinion, you are very lucky to have sourced a endo who will help you. Can I ask where you found him/her please?
I am based in Suffolk, UK... unfortunately, the first Endocrinologist I saw was a friend of my GP, but my Gp came up trumps and said if I wanted a second opinion, I was entitled to request one... he gave me a list of NHS Endocrinologists, and one of those is monitoring my condition and giving me the private prescription - which the German pharmacist accepts ( I order online but I do have to send the original prescription to them ). It helped that I had started taking my own blood tests, in addition to the NHS ones... the evidence was pretty irrefutable... Even though I was able to prove a clinical need for T3 though , it is not on the NICE list of prescriptions, so you may find yourself sourcing it elsewhere. Also , I found that I have to watch which brand of Levothyroxine ( the T4 ) , I am prescribed - the bases vary and some of them give me dreadful headaches - nothing to do with the active ingredients, just the base... Good Luck...
I’m So pleased to hear you are now able to get the meds that you need. Would you mind sharing the details of your nhs Endo? I happy to by my mess if I can get a prescription from them?
Hi, I am so sorry you are being pulled in this direction. The endo’s suggestion makes little sense to me. I hope it is ok to ask a question, I am from the USA so this situation makes me really curious...in the UK you couldn’t just not return to this endo and not take his recommendation and continue on with your other doctor? I went to a doctor last year because I had C. Diff (potentially deadly bacteria) and his recommendation was for my to get bariatric surgery at a weight loss clinic. The idea was so outlandish and out of left field that I never returned.
I hope you work this out and are able to continue on how you see fit, as you are often the one who knows best. The help here is always so comforting and spot on. xos
Hi, I am indeed able to just walk away from this endo and continue with my sympathetic gp, which is what I will do, after I speak with my gp in the week.
I just wasn’t sure if you were required to follow through on doctors’ orders in the UK. Getting a suggestion like that from a doctor would confuse me and make me doubt myself, thankfully this community is so helpful. I am really happy you’re going to continue on with what feels best. Take care!
My gp referred me as he is unable to prescribe me t3 or ndt, but he warned me they will probably be useless and if I didn’t like what they suggested it didn’t matter as I didn’t have to go back. I am also extremely grateful for the advice and support from this site, I have received so much helpful information over the years of using here and for that I will be forever grateful.
I understand your concerns at giving up for a month, it is a long time. To be honest they will not know if you do it for less. However with the chance of T3 being prescribed I would be tempted to go at least two weeks. I say this because I find trying to do as they ask gets a better response very often. My annual bloods came back to my new GP about four months ago. She was a little concerned as T4 was raised and as ever TSH suppressed. She asked how I felt and said woukd I pkease recuce NDT a bit and retest in 3 months. OK I thought I have just ordered new private tests as I do not feel the best. They came back T4 at top,of range and T3 at 90%, I knew a drop might be an option, and it was. The week before the GP tests were due further reduced the dose. It came back with T4 at rock bottom. Telephone call to suggest I need to increase again or I will be quite poorly. Now she knows I can be trusted and is happy to help me. We have intelligent conversations about the value of TSH, the importance of T3 and that I most certainly do have hypothyroidism. This excercise showed how it pays to go along with medical professionals sometimes to achieve the desired result.
I self medicate on ndt because it suits me best. It’s what I was originally treated with. I have had zero thyroid function since radiation destroyed my thyroid in the early 1950s. No blood tests unti the 1980s when it turned out I was low in range, fabulous GP took me to 75-80% into range. I was totally blown away, life was so easy, that soon ended when three years later we had moved and it was back to minimum dose again. That remained the case for years, even in 550mcg levo a day I was as every GP said “ absoloutely fine”. I always remembered how easy life was for those three years in my thirties. Finally after continued rock bottom T3 and feeling pants I asked for a referral to the local T3 friendly endo. For reason I was refused was because you don’t have autoimmune thyroiditis why would you need an endo? No thyroid at all no problem, take levo. NDT was dangerous you are better off now.
After moving home a new surgery this time the excuse was “your symptoms, increased weight gain, bloating, hair particularly grim, nails splitting, thinkening skin on soles of feet , swollen tongue ( so bad I was only able to take fluids using a straw). Are not related to thyroid in any way. In fact
I wonder if you have any thyroid health problems at all, I think it’s anxiety. I will not stop your levo script at this time but we need need to wean you off.”.
I assure him he was the first to think this, perhaps the consultant who carried out an ultrasound and found the smallest thyroid ever was wrong. I advised if he refused the referral I would be taking NDT and that was it.
I then saw my named GP and she agreed to monitor me.
The silly boy has now left as has my named GP. My new named GP is the very helpful lady I spoke of at the start of my long essay.
As I say in your situation I woukd drfinitey reduce enough to get the worst bloods possible and then let the endo prescribe T3. I would be happy to be in your shoes, I have not come close to getting T3 despite very obvious conversion issues. Good luck
I am so sorry to hear of your struggle. I really don’t think bad labs will help with t3 being prescribed tbh, I feel like they are just trying to get me off “dangerous” meds as they refer to them. I will speak with my gp next week and see what he suggests. I think I’d rather be referred to someone else for a second opinion tbh.
Your post came through to me via an email notification. I'm rarely on here but I wanted to come and show some solidarity.
It's a long story but, simply, I'd rather perish than ever take Levo again. Alas, the last endocrinologist I saw told me that nobody in Sussex will ever prescribe me NDT. My only NHS options are Levo or Levo & T3 (both of which I've tried, as well as T3 alone.) I can't afford to go private.
It was at that point I switched to Thiroyd. It was far from perfect but I was definitely doing much better without Levo in my diet. When Thiroyd was discontinued, yeah, it's fair to say that I went into a bit of a tailspin. All I could see ahead was Levo again. I was totally at the end of my thyroid tether so I went left field and switched to Thyrovanz. It turns out that my body is far more accepting of bovine than it ever was porcine or synthetic varieties.
I kinda wish I'd not spent the last decade of my life struggling with something I knew was killing me, just because endocrinologists who've met me once won't listen and won't vary from the script. I don't want to be a rogue patient. Of course I'd rather work an endocrinologist. But needs must.
I so relate to the long journey you're on. And I very much hope you also find a suitable alternative. Keep going.
Thank you so much for your message, it’s really helpful to hear that your doing so well with thyrovanz, I did look into that briefly before but Went with the thiroyd and then thyroid s option instead, however dependent on what happens with Over then next couple of weeks I may have to look into this option again. The nhs endo was due to calm me yesterday or today but I haven’t heard a peep..... I had my bloods done last week and upped my thyroid s straight after, I am feeling more human again, thank god! In the meantime it dawned on me that I pay nearly £450 a year for private medical cover with work, and I managed to get an appointment booked with a private endo for next week, however, even if she can prescribe ndt for me I am not convinced that I can afford the ongoing private prescription costs, these seem to be really high, especially in comparison to thyroid s. But it is a life line and I will see if she is able to prescribe if she will be able to take me on as a nhs patient, if so I will continue with her. If not, nothing lost, as I won’t have to pay for the consultations or tests she requests. I feel I’d have more chance of finding a magical unicorn then sourcing Thyroid s in the foreseeable future and so I am looking at other self sourced options. I have completely forgotten about thyrovanz so thank you for the reminder. I seem to go into a complete meltdown when ever I have contact with the nhs endo, and like you will never take t4 alone again. I felt awful for so many years, I will not go back to that. X
I do hope your appointment goes well. As you say, nothing to lose by talking to somebody else who might help. There are good endos out there. They're just hard to find... but, yeah, even if you can get a prescription written up, it's the ongoing cost... I also couldn't afford it, especially when my body is quite definite that it prefers a high dosage.
It's such a personal thing as to which brand suits you. Thyrovanz is what's been best for me this far. I really don't miss the stress of trying to order stuff from Thailand.
My situation is complicated by me having ME. For some inexplicable reason, medicating my thyroid aggravates my experience of POTS. Standing up has become a real problem for me. Nonetheless, I do still feel much more like my usual self.
I'm also making sure that I'm topped up on the relevant vitamins and minerals.
Best of luck with your appointment. Let me know how you get on!
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