I sought a second NHS endocrinologist's opinion today who, I was pleased to learn supports T4/T3 combination treatment, and treats patients with T3. In order for me to qualify (tick box for her CCG) for a 3 month trial of T3, I was advised she would like me to reduce and eventually stop taking my prescribed Levothyroxine altogether to see how my TSH numbers would react. She wants evidence my February 2017 TSH 5.1 will be repeated, ideally she wants my TSH to rise above 5.5 range before she confirms and accepts my existing Hashimoto's diagnosis - though admits she's 95% sure I'm hypothyroid. Neither of the two 2018 Medichecks full thyroid tests, indicating poor conversion, nor Regenerous Ltd DIO2 genetic test evidence was acceptable, in her view, for 'ticking box A' to 'open Box B'. I'm sleeping on it, but first reaction was complete dread of returning to symptoms experienced prior to original 2017 diagnosis in the name of proving I 'don't have something else'. Part of me understands her logic, but the hoops laid before us seem to be increasing. Any thoughts would be most appreciated. Dr John Midgley's 2014 Talk to Thyroid Uk and Dr Toft's 'Counterblast' article were invaluable references to outmoded reliance on TSH testing. In fairness, the consultant agreed, saying she felt sure guidelines would change, but for now she has to work with current NHS doctrines. In order to obtain T3 under her CCG, I will have to reduce current 150mcgms Levothyroxine (TSH 0.233) and stop taking altogether before re-testing TSH to see where the range lies in four months. Would you do it?
Endo wants me to stop taking Levothyroxine in o... - Thyroid UK
Endo wants me to stop taking Levothyroxine in order to qualify for CCG approval of T3
Absolutely not, and certainly not for 4 weeks, let alone 4 months
Would they ask a Diabetic to stop insulin?
Do you have NHS test results from when you were originally diagnosed?
I stopped Levothyroxine myself (stupidly), 20 plus years ago, became extremely unwell very rapidly, so unwell they thought it was, brain tumour or MS.......and took months and months to recover
thanks SlowDragon for your reply and response which I really appreciate ... I earlier pressed wrong Reply button in error, hope you've seen my response within the wider thread. I would add I am so grateful to everyone for their support and comments, some observations I will certainly be taking forward in my letter to the Endo. Like so many here, I agree her proposal falls outside 2018 RMOC guidelines and worse, puts a patient at immediate risk with potential harmful long term consequences. Further, if a patient is placed into the position of being a guinea pig, there has to be a resourceful network in place to give the patent support. With that in mind, how is this even serviceable when the wait to see my GP is five weeks, the wait for a blood test, 6 weeks. Yesterday's appointment outcome raises a lot of fundamental issues.
thanks for replying, SlowDragon, yes, I had all my NHS test results - including my first recorded TSH at 5.1. This and the others were not deemed evidence enough. In order to qualify for T3, she wants Levothyroxine stopped for a while in order to replicate pre-2017 diagnosis, after which TSH will be tested. I fear she wants to raise TSH above 5.5 ... I was severely ill at 5.1 before Levo prescribed, but I've never felt 'well' on T4 alone and recent DIO2 genetic tests illustrate I have T4 - T3 conversion problems. High Thyroglobulin autoimmune antibody results, ranging from previous 3000 to current 1100 also failed to carry weight (could be 'something else'). This is the third clinician who has left this thread hanging ... though Chronic Fatigue Syndrome, coupled with Anxiety & Depression were raised as hot contenders today. The current diagnosis and treatment outcome for long-term thyroid patients alarms me. Current wait to see GP: 5 weeks, current wait for Consultant follow-up: four months. It can be very isolating when symptomatic.
I wouldn't do this if you paid me. It could take a year or two to recover from being severely deficient in thyroid hormones for four months. Things like heart damage, high blood pressure, extreme weight gain, severe depression, anxiety, psychosis could all happen, and there is no way to know how long it will take to recover - if you can recover.
Non-sufferers, particularly if they are doctors, simply have no clue how bad people feel if they are seriously short of thyroid hormones. Doctors think it is a minor problem, not life-threatening, probably because they think most health issues suffered by women are minor.
Thank you, Humanbean, you've echoed my immediate thoughts on drive home. I think I shall write to the Consultant echoing these serious concerns - I am worried about recovery time and potential harm, too. I am thinking about writing to CCG - where in NHS England guidelines does it instruct Clinicians to take patients off prescribed Levothyroxine in order to qualify for a T3 three month trial? I fear this qualifies for misinterpretation of guidance.
What bunkum! You take 150 mcg levothyroxine without being remotely over-medicated, yet she is only 95% sure you are hypothyroid!! Is she mad? But there is no CCG requirement that obligates you to prove you are "really" hypothyroid, that presumption already exists in anyone for whom mono-T4 therapy has proved unsuccessful/unsuitable - otherwise why would any Endo be supporting a claim for liothyronine for heaven's sake! Yes there needs to be some degree of evidence to support the request, but it is evidence for needing T3, not evidence that you are hypothyroid. By definition, that evidence can be proven only by looking at your hormone levels and symptoms WHILST taking T4, not when being without it. She's had a logic bypass by the sound of it. Whether or not you will become ill by withdrawing the T4 is important to you of course, but it is irrelevant to what she is proposing, because the fact is that what she is asking you to do is utterly bonkers. The RMOC Guidance is absolutely clear on this: "In very rare situations where patients experience continuing symptoms with levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may occasionally be appropriate." It does NOT say "in situations where the patient's T4 is withdrawn and their TSH goes sky high as a result."
You took the words out of my mouth! Raising TSH to over 5 only proves that you are hypo, it doesn't prove you need T3. For that proof you only need to compare your FT4 with your FT3 whilst taking T4 only. I think this woman is a public danger and should be certified!
Absolutely! High levels of thyroid antibodies will show you have autoimmune thyroiditis
The fact she is not overmedicated on t4 at 150mcg if thyroxine shows she is Def hypo!
And t4 to T3 conversion is all that is an issue here.
I absolutely would not agree to come off thyroid meds for four months !
If I absolutely had to do something I may reduce dose by 25mcg and restest in 4-6 weeks to show that TSH rises with less t4.
How absolutely ridiculous ! I can understand them not wanting to give T3 because they don't believe in it but to take you off t4 which they know has to be taken is nothing short of negligence
I read yday a pharmacist told one of our users that t4 was same as T3! Didn't think anything could top that for absurdity 😯
I wonder if the endo is reading the "and other potential causes have been investigated and eliminated" to read that she has to prove her symptoms are from.hypothyrodism in general (!)
I have the November 2018 RMOC Guidance, I took it along today but never had a chance to refer to it. I think it's important to refer to in a letter to the Consultant. My CCG confirms they reviewed it at committee on 7 December and will be reporting soon. thanks again for helpful reply.
Just a forum point sy28 , but as Marz said above, if you want to reply directly to someone's comment in a way that will alert them to your response, you have to click on Reply directly beneath theirs. If they haven't clicked on Follow under your post at the head of the page, they are unlikely to know you've responded to their comment. 
ps the Consultant's view was that she is investigating and eliminating 'other potential causes' by requesting I comply with her instruction to reduce and stop taking Levothyroxine over a four month period until I see her again with revised TSH results. Her concern being it could be dangerous to prescribe T3 to a patient with an underlying 'something different.' Personally I pressed her on looking at things in a different way, requesting a three month trial of T3 alongside a reduced course of Levothyroxine, but this was seen as an unacceptable route for her request to the CCG. I think clarification is needed from the CCG, with reference to November 2018 RMOC.
She is setting you up to fail in more ways than one! Stopping your levo is not going to convince the CCG that you need T3, it's just going to convince them that your consultant is a sandwich short of a picnic! She hasn't even understood the CCG rules, let alone how to treat a thyroid.
Hi there
I had a similar experience with Nhs endo -
I actually offered to drop some Levothyroxine in order to bring my TSH into range -
on the understanding I could be given trial of T3 alongside the reduced T4 dose.
I presented my dosage levels along with my blood tests over the previous year showing instability on T4 and that to feel relatively well on monotherapy I needed my TSH to be suppressed.
Prof Toft's article was dismissed, the fact I have Graves Disease and had had RAI ignored.
I was denied a trial of T3 due to having a suppressed TSH.
There was no discussion on my well being - no help or advice on what else I could do.
There was no doctoring in the true sense of the word - I had a suppressed TSH -
I failed her test - that was her justification for saying no and keeping her job.
Why are we having to crawl through hoops, making ourselves more ill in order to be
considered - but never guaranteed - help from a endo who doesn't understand the
problems we face in the first instance ?
I was referred back to primary care where my doctor refers to me as a conundrum.
I am now self medicating - less stressful and am quietly confident.
Take good care,
T3 would only be 'dangerous' in someone with other causes if your T3 was overcorrected!
I'm sure your bloods show low t3 so it doesn't take a genius to figure out that's not the issue.
T3 deficincy is also dangerous !
Most doctors have issues with T3& heart problems etc so why don't they just screen you for heart problems first instead of reducing levo
Please DON’T FRICKIN DO IT!
After being ignored with a TSH of 5.30 in Summer of 2013, I finally was getting my health together after starting NDT in 2014 from a Naturopath.
Was taken off of it because of a suppressed TSH in 2016, to “recover” my TSH. After 10 months of hell, I was put on comparatively low doses of thyroid replacement and am still recovering. Two and a half years later I am still trying to, at bare minimum, catch up to where I once was.
Do not make the same mistake that many of us victims of gaslighting had made when we listened to the “experts.”
I would urge you in the strongest possible terms not to follow this consultant's plan. She is being grossly irresponsible in even suggesting that you take this course of action to 'earn' some T3 treatment. It is not justified by any guidelines or literature I've ever come across. You have proven hypothyroidism; you do not need to go on proving it. Stopping a patient's essential replacement hormone to see what happens is wholly unethical.
It would also be counterproducive in other ways: there is no guarantee that your TSH would rise sufficiently high, sufficiently quickly to convince her, and your health may never return even to where it is now. She is treating you as if your thyroid physiology is a mechanical system, and not a dynamic one that might adjust to changed circumstances in unpredictable and possibly permanent ways, e.g by epigenetic adaptation.
Thank you Hillwoman, do you mind if I quote from your response
Sounds like a human experiment ....this is crazy lets take away your meds so we can see how sick you can get...good grief.
You write so eloquently I am quite sure your letter will surely convince the correct authority....
Why/how in Gods name do we find ourselves in this ridiculous conundrum.
I stopped Levothyroxine for one week this year, as each time I took it, it was having an adverse effect on me and reducing my strength that I was on the floor literally. During the week I stopped it my strength was resolved. However, my TSH shot up to 29 within 10 days. It took months to get it back down with range. I switched to NDT which also hasnt been great but I do believe the T3 element within it has helped me.
Do not stop Levothyroxine unless you have another thyroid medication to take you through. Four months on nothing is a recipe for disaster. One week and my TSH went sky high.
In reply to your question NO
Sounds like torture to me. Four months? When I came off Levo for 4 WEEKS my TSH shot up to 60! You will be really ill after 4 months. Even if this is the ridiculous and demeaning hoop you have to jump through for the ultimate goal of T3, there is no way it will take 4 months for the Levo to drop and TSH to rise. She’s only 95% sure you are ill? You will also lose any stability you have on your medication Nd have to start from scratch again. Why doesn’t she just regularly test your T3 to prove you are always/mostly below the normal range? What guidance is it she is following? Was it written by a sadist? FFS, it’s outrageous that hypos constantly have to prove they are ill to get medicated and then prove they are still ill to resist under-medication. No one asks a diabetic to come off insulin ‘to check the diagnosis by seeing if you go into a coma’. Ohhhh it makes me so angry! 😡
sy28 Can I ask please where you are in the UK? Which CCG are you under? I've been working with the Lords groups on the dossier, and now on subsequent work with them. This could be useful information.
You are being treated like a guineapig. If there is to be a shift to T3 medication, either with T4 or without, it has to be done smoothly without lowering your overall thyroid hormone dosage. TSH has to be lowered by the medication at least to 1 if you are to feel well at all. There is no excuse for an approach of "withdraw all therapy and see how ill you get". Changing medication is not like going to the wardrobe and changing shirts (skirts). It is a gradual thoughtful process, not proceeding in large changes, but gradually, giving time for the effects of each small change time to exert themselves.
Hello sy28
This is exactly what I did. Not because the endo asked me but because my GP insisted there was nothing wrong with me on Levo and I could see no other way. I had no medication for about 6 months and ended up with TSH at coma level, yet somehow I was still functioning (thanks I think to having practised Whole Yoga for around 40 years) and in truth I was not feeling that much worse than without Levo, despite the huge difference in blood test results.
GP saw me at that level, though without knowing I was not taking the meds and before test results were in and said "Well, you don't look hypo!", so you see I was really up against a brick wall which was why I did stop the Levo.
Although I have seen others say don't do it, if, in the long run, you end up better for it I would do it. I am much, much better now, I live a fairly normal life and can, after about 20 years of not being able to, enjoy socialising instead of feeling absolutely ghastly. I am out of pain in my muscles and joints and enjoy exercise again and can think and easily do ordinary house-running tasks that seemed monumental before.
It's only a viewpoint and the decision is clearly yours, but I thought this might help you choose.
"You don't look hypo"? What exactly do you need to look like to look hypo? Personally, I feel that the bags under my eyes, my poor balding head, and my brittle crappy-looking nails make me look hypo, but since doctors are not taught symptoms of hypo, I have never had any doctor tell me that I look hypo. (Have just been started on T3, so we will see whether adding that to my treatment can make me look less hypo IMHO.)
Well you see I didn't look like that, I was not overweight, have long, strong nails and very thick, healthy hair and good posture. It runs in the family, we have good skin colour and my father's wife, as he was having a massive heart attack, was told "don't worry, he is fine, it's just anxiety, you can see from the colour of his skin."! It's a disadvantage when a gp is convinced there is nothing wrong with you! Better to look as bad as you feel!
Hi thyrold, i realise this is an old post, but i’m thinking of stopping levo, due to the horrible side effects i’ve experienced with it. This stuff has made me a million times worse than i ever was with a tsh of 27! If you don’t mind me asking, how are you since stopping medication?
I definitely wouldn’t do it to see if my TSH shoots up.. my TSH on diagnosis was 91, T4 was 0.02!!
There must be another option
I think the consensus of opinion is pretty obvious
In your shoes, I would tell your endo that she should find another guinea pig and you wont be playing her stupid game, and if necessary you will source your own T3. It's absolutely unbelieveable that they are willing to risk their patients like this and make them so ill just to tick a box, what happened to listening to the patient and "first do no harm"?
Just bonkers! I wish there was some way that doctors could have symptoms that mimic un-, or under- , treated hypothyroidism for as little as a week then they wouldn’t insist on such disabling suggestions. I wouldn’t do it, adding T3 (by DIY) to Levothyroxine took me from someone who was 24/7 on a sofa to someone functioning at more like 90% of the true me!
I wish there was some way that doctors could have symptoms that mimic un-, or under- , treated hypothyroidism for as little as a week
Giving them a high dose of carbimazole for a week or two should do it.
Ooh, that would be interesting...but they wouldn’t get some of the symptoms that are noticeable after a bit longer like those extra pounds/ stones, hair falling out etc etc!
True.
They'd have to be treated with carbi for the same length of time that people are left hypothyroid and untreated. In my case this was at least 22 years. But based on what I know of the effects of hypothyroidism now I would say I've been hypothyroid since childhood, so that would be 50+ years.
I would not put your health at risk for these people supposed to be looking after us. If you have a diagnosis why do they need another one and make you ill to get a second diagnosis. I had a TSH of 4.76 (0.3-6) in 2006 and was eventually diagnosed in 2016, then undiagnosed ...two months later ...as they deemed my TSH not high enough at 4.24 (0.3-6) and T4 of 9.9 (9-22). The NHS did a similar thing with me last November 2017 and asked me to stop everything suddenly as an experiment .. but after 12 days I became extremely ill and
I had to restart my thyroid hormones again myself. But even a T3 of 2.1 (3.5-6.5) and a FT4 of 7 (9-22) wasn’t LOW enough for them!!!!! They maintained that I had not stopped long enough and as my TSH did not quickly go up and was 0.1 (0.3-6). So despite being severely hypo and low pulse they refused to treat me. They would have preferred me to be medication free for 3 months and probably bed-ridden just to see a TSH they liked. But at what cost to the patient! I’ve been self-treating with T3 since and made a full recovery but it took many months to recover. The last NHS endo I saw advised me to continue to buy my own thyroid tablets abroad!!!! It’s a national scandal the way thyroid patients are being treated. I would never ever make myself ill again or be used as a guinea pig for their draconian TSH test. I can breathe now without the use of inhalers they gave me and I singlehandedly doubled my kidney function by self-treating. I made a full recovery. Take care of yourself and don’t allow them to experiment with your precious health. They diagnosed you once they don’t need to make you ill to make a second diagnosis. All the very best xx
Hi.
I am so interested n what you share about your kidney improvement. I am kept terrorized by "the damage you might do to your already sick kidneys" Please. Will you share more about what action you took
Bee
Hi Sark1
Sorry to hear that. I was diagnosed by a kidney specialist as having Sub-clinical Hypothyroidism when my TSH was 4.24 (0.3-6). I had very high blood pressure and high cholesterol which concerned him also. All perfect now and my creative levels halved. My kidney function was eGFR 48 at that time and had been around that for 22 years after kidney surgery. Around a year later after my thyroid was treated (by self-treating) my kidney function was eGFR 92.8!!!! You could send me a private message to chat to me xx
I wonder if there's an element of punishing you for wanting such a (needlessly) expensive treatment. If they make it as difficult as possible for you to get T3, maybe you'll go off the idea. In the days when T3 was cheap, my endo just reduced my T4 and added T3- she was pleased that I felt so well. I'm shocked that your endo wants to make you ill again. Does she know how cheap T3 is in other countries, and that our government could do something about the cost here if they wanted to?
Even 10 yrs ago, when it was at its cheapest, I had to make a formal complaint in order to be prescribed T3, not least because my GP took advice from the hospital's biochemist who assured her that T3 was never prescribed or needed out side of an ITU and not other than intravenously for myxoedema coma (even though the tablet form was nevertheless listed in MIMS) ..... The problem is partly the obscene UKprice nowadays, but equally it's the erroneous teachings and beliefs that persist about it.
The Endo confirmed her source of T3 is Concordia.
As your endo is open to the idea of T3, could you ask her to write a (free) private prescription so you can buy it from Germany at a fraction of the UK cost? Then you can see if you feel better on T3 while you decide what to do about the CCG.
Sorry I meant to write "not that much worse than with Levo" - not without!
I have read all the other replies to you and see there is great concern about you stopping. Perhaps I should make clear that I was very unwell on Levo and getting worse and worse, despite several successive GPs trying different doses, up and down. I could see no other way to get help than to stop and demonstrate that I really was not benefiting from the Levo and was genuinely very ill.
If you are not in the same position then I can see the sense of everyone else's urging you not to take this course of action.
Whatever you decide, I wish you the very best of luck.
As an afterthought, how about consulting a different endo, that is something I did. The first said no to T3 and told me to increase Levo. My GP straight way said no, we could not go higher, and so agreed to refer me to someone else and I found an endo who is supportive of T3, though it means a long-ish journey.
Thanks for replying thyr01d ... unfortunately this was my second opinion NHS referral - my GP says she is unable to refer me a 3rd time
Oh dear, you re in a rotten position. If I were in your shoes I would write a letter, maybe to both your GP and the endo, possibly to one copied to the other, saying something along the lines of wanting to follow the endo's advice but being afraid of the potential consequences and asking if there is an alternative, a different and safer way to proceed to the same conclusion, 'since that's what you believe is the right ultimate treatment for me'.
I find letters effective, especially if very politely written, and I find being willing to be lead and guided by medics whilst seeking to be cared for throughout the process produces good results. I think medics are often insulted by people thinking they know better and patients being awkward and difficult and that respect genders respect.
A personal view, no probs if this isn't for you, just aware that I have succeeded despite the starting point being an obstructive GP who insisted she would absolutely not refer me and that the surgery would not prescribe T3.
Thanks thy01d, I spoke to the Endo's secretary yesterday who was helpful and confirmed a letter won't be received by GP this week.... and Endo's away from Friday. This timing suits me, I'll respond when a letter's received. Appreciating a momentary spell of calm and important family time. x
Good grief is your endo trying to kill you! It's just bonkers, what happened to first do no harm.I got t3 from my endo without having to jump through these kind of hoops, they must be a sadist.
This whole treatment of us all is a debacle! It's a farce! What is wrong with the medical folk!? They all seem the same we all have to keep fighting to live, fighting for our own health.
I couldn't function at work when I stopped Thyroxine for just 4 days....
Where would we be without the help from this wonderful site 😊
Only if she signed on the dotted line to pay for my healthcare until I was well again. She’s an idiot
You might find this link of intellectual interest - it's an article from the BMJ published in 1949 entitled "Myxoedematous Madness". It describes people who were referred to a hospital, many because of psychosis. In each case they were diagnosed in hospital with long-term untreated hypothyroidism (which used to be called myxoedema, and very occasionally still is).
ncbi.nlm.nih.gov/pmc/articl...
Thank you, humanbean. Dr Toft referred to a similar example during his 24 November, 2018 Thyroid Trust talk, The Management of Hypothyroidisms, which I attended. Your link is another useful reference when writing to the consultant, cc'd to my GP. I await a copy letter from the consultant, to my GP, confirming the content of yesterday's appointment and proposals I have to meet for T3 trial eligibility. I emphasis I have not agreed or confirmed my agreement, but feel it will be necessary to confirm with my GP I do not agree with the Consultant's outline proposal of my stopping Levothyroxine for a four month period. I want to avoid any confusion as soon as possible concerning repeat prescribing Levothyroxine at NHS primary care level. The first consultant I saw confirmed Levothyroxine prescription must stay in place - it's a travesty he 'didn't believe in T3'.
One thing to bear in mind about that article I linked to... I'm pretty sure I remember helvella saying that in those times the strength of NDT pills was lower than it is now. So the apparently high doses given to the described cases wasn't as dramatically high as it first appears.
I believe, but could be wrong, that Thyroid BP was lower potency per grain than the USA products.
(If only information from years ago were as available and accessible things are today.)
Also, the assessment of potency was very largely on the basis of iodine content. Which is not a reliable approach. One of the reasons for Armour being regarded so highly in the early part of the 20th century was that they also used an animal lab to assess potency on top of everything else.
‘Doesn’t believe in T3’. WTF? Its not a bloody religion. Its existence is proven. Scientific fact! You really can get the tablet form too - it’s not a myth. (Though it is becoming somewhat mythical on the NHS!) Good grief. I’m glad he didn’t say that to me. I wouldn’t know whether to laugh or slap the idiot. I’m still waiting for the day when the price of Levothyroxine soars and the price of T3 crashes. I can hear them all now saying ‘you don’t need that Levo, it does nothing, in fact, I don’t believe in it. You need T3. It’s exactly the same as T4. You don’t need that blood test for T4. It’s irrelevant. It’s T3 only all the way...’
This attitude speaks volumes about the medical professions take on thyroid disease. Wrong on every level.
I can't believe this so called expert is doing this. She has no concept of what this malfunction does or how it effects us. Stay well away!
thank you, silverfox7 - your comments and that of other members of this forum is keeping me strong and clearing my head.
A good question to ask this doctor might be would she do it? or advise her daughter to do it? If you got an answer I'd bet the ranch it would be no.
Don’t forget that TSH is highest first thing in the morning so when you do have your blood test, make sure blood is drawn around 8 am.
thanks Muffy, ordinarily I follow this advice. In this case the consultant has requested the impossible. I can never envisage organising a blood test following a four month denial of Levotyroxine ...
Hi!
Apart from offering you an entirely misconceived seriously harmful approach to assessment for
needing T3, it must raise a query as to whether this Endo is fit to practise regarding thyroid matters.
You have taken a vital step in coming here for views but other patients follow advice from blind faith in the expertise of a specialist when referred.
Providing the same proposal is confirmed literally in writing, & you get a copy, as well as asking your GP for a further referral to another Endo, can I tempt you to ask him if you should write with concern and requesting investigation to the GMC, copy to the Hospital where the Endo is based and copy to the CCG?
But swiftly followed by or, would that be better coming from him/her, your GP?
And watch your GP’s reaction when you also comment that surely, any further referrals to that particular Endo from the entire GP Practice regarding thyroid matters surely must now be questionable?
Please do keep us posted!
Hi MikeM46, I have been mulling things over all day today, I picked up your response this morning and it's really helped perspective. I think it would be helpful to speak to the Endo's secretary to find out when her letter is likely to come out to my doctor. My allocated GP's next available appointment is five weeks away, I'm wondering if it would be helpful to see another GP in the meantime. I think I ought to update my GP, in writing, voicing concern that I find myself between two contradicting Consultants. The first, who did not believe in prescribing T3, referred me instead to CFS clinic under primary care, 'in order that I might meet similar people and share experience'. He disputed evidence of autoimmune antibodies, yet confirmed I was to continue Levothyroxine medication indefinitely. The second consultant, seen on Friday, does believe in T3 and prescribes her patients T3. She is also supporting a lobby for combination T4/T3 treatment to become more widespread, yet, after divulging that information to me, I was given the choice of stopping my Levothyroxine altogether in order to revert TSH numbers to 5.1, 2017 diagnosis. She doubted Hypothyroidism diagnosis was correct at that time, given my TSH level was within range. Later, 2018, evidence, including out of range autoimmune antibodies, rT3 ratio indicating conversion problem, DIO2 genetic test proving positive for inherited polymorphism, made absolutely no difference to her decision. Despite being '95% sure' my symptoms were due to Hypothyroidism, she would not revoke the notion I had to stop Levothyroxine according to her specified time, in order for her to satisfy her CCG T3 prescribing guidelines. Apologies, I realise I have just repeated what you already know from previous post, but I'm still processing the insanity of the position I'm in. Further, there's no guarantee I'll be met with sympathy on returning this dilemma to primary care - the doctor who serves on local CCG committee, confirmed to me, surgery policy is to encourage those patients currently treated with T3 to come off it and revert to mono, T4, treatment. I have kept the photo-copied 'existing T3 patient information letter' he gave me in my growing file of evidence. Going forward, would you mind if I quoted excerpts from your reply to me - I'll wait and read the Consultant's letter first before addressing difficulties I have with narrow patient choice offered during her appointment
Hi back,
Trying to be brief ...
Your “case” for T3 unfortunately sits in an extremely negative context as you know only too well! & additionally clinicians are allowed to make their own judgements on the pros & cons subject to doing no harm of course. So in pursuing T3, yes, you do need to also take into account potential unintended consequences.
But with regard to this Endo’s suggestion of ceasing T4 medication and for an astonishingly lengthy period at that, while it is quite ironic that the proposal was made in support of obtaining approval for T3, it is so misguided and dangerous that it really questions not just professional capability but raises the possibility of causing actual serious harm in these circumstances.
So ... such a difficult set of circumstances for you to find your way through!
But whatever, do not cease your present T4 medication as suggested!
You can't get blood drawn first thing?
This is dangerous advice/ suggestions. People who go into a mxeodema crisis often do so after stopping thyroid meds. It beggers belief.
How well do you feel on current dose?
Thanks for asking that question Domino06 ... In truth, I am still recovering from an enjoyable time travelling to London to attend November 24 Thyroid Trust meeting. Ordinarily, such recovery time shouldn't be the case, but it's becoming the norm following 'out of routine' events. I'm finding eyesight disturbances unsettling, I report they seem worse when I am tired. Fatigue is still an issue. Tinnitus is raging at the moment and I reported insufferable insomnia to the GP recently. I want to sleep yet the off mechanism switches back on. Despite taking 150mcgms Levothyroxine, I'm mostly bumping along the bottom, then out of nowhere, like yesterday, I revert to my old self and things get done. I succeeded unpacking Christmas decorations today, so the cottage is finally feeling festive. How long the Christmas tree stays in the bucket is another matter.
NO!
In Truth, nothing shocks me anymore with the medical profession. I was asked to come off my medication for 3 months and I refused. The Endocrinologist believed I had wrongly been diagnosed, even though my original blood tests showed high TSH, low T4 and high antibodies.
The NHS took away my NDT and put me on Levothyroxine and I felt so unwell. I would now rather source my own T3 from overseas, the support on this forum can help you with that. They have helped me enormously.
I will be arranging a DI02 test and will write to my MP about my treatment or lack of it! My levels still need tweaking and we all know what it's like to cope with an event or busy day, you seem to pay for it over the next few days and that's with medication.
You shouldn't have to prove anything to the consultant. Good luck to you and I hope you find your way through all of this.
Did you do it?
Hi Feelingfailed, I reduced from 150mcgms to 125mcgms three weeks ago. NHS and Medichecks blood tests are booked next week. I'm less convinced by NHS approach to TSH testing only. I feel I need to produce further evidence of poor conversion (2 previous blood tests reported poor conversion could be an issue) plus FT4, FT3, TPO and Thyroglobulin antibodies ranges. I have Hashimoto's), hence resorting to private testing as back up. Once I've discussed next week's test results, together with serious ambiguities in Consultant's second letter, with GP, I'll decide whether to reduce Levothyroxine by a further 25mcgms, to 100mcgms, or whether to complain.
And how do you feel health wise with starting reduction? Have you noticed any changes? 🌼X
Hi Feelingfailed, yes, I noticed changes quite quickly. I started recording symptoms on Day 6 of reducing from 150mcgms to 125mcgms. It's now Day 21 and I'm in bed for a second day, I think due to physical exertion while painting on Friday. I experience similar physical crashes even on 150mcgms, when pushing my energy. What I'd forgotten was how bad I used to feel psychologically as well as physically when under-medicated. I think what I am being asked to do poses a real and unnecessary risk to my health, more so in light of the consultant letter's last comment: 'I completely accept that she may now have developed a more fulminant autoimmune hypothyroidism given the strongly positive antibodies'. I feel vulnerable and helpless today.
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