Hi. I thought some of you might be interested in reading the below attached Korean research article, if you've not already seen it. According to the UK based Functional Medicine Dr who has privately prescribed me a tiny bit of T3 since 09/21, the NHS are now relying on this 'evidence' to refuse T3 to patients who request it when they're on private prescriptions, and who want it prescribing on the NHS, which should be the case. It is beyond infuriating. Any thoughts? 🙂 liebertpub.com/doi/full/10....
T3 on the NHS thwarted even more? A convenient ... - Thyroid UK
T3 on the NHS thwarted even more? A convenient (to them) Korean research article.
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RhianR
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How depressing RhianR.
More 'Lies, damned lies, and statistics' from researchers from the same family. What are the odds of that! 😜
Hi, yep, isn't it just!!! And when I asked if this Functional Medicine Dr could recommend any NHS Endos to me who would prescribe T3 to me since she is prescribing to me privately (via her resident Endocrinologist), she said she couldn't and that none in the NHS would go against the mantra, especially because of this particular research - and that anyone currently on T3 is most likely to be taken off it and put back on T4 only 🙄 Obviously those who are still on it have to fight tooth and nail as we in the UK know. Very very depressing, yes.
RhianR,
I agree some have to fight tooth & nail, and perhaps in your area more so than most. My area is rubbish too. We should all move to Hampshire, Southhampton or the Isle of White! .
I see! Well I've got family down in Southampton/Hampshire there so maybe I should move!!! Please can you DM me any Endo names you may have for down there. Thanku 😊
RhianR,
I don’t know any endos in these areas as don’t live there. I was referring to the ‘open prescribing’ stats given to you in SD’s link.
If you subscribe you will receive this info yourself emailed each month and can follow where the areas of where the prescribing of T3 is most concentrated.
There are two private GP's that I know of close by the first is in Romsey and the second one in Winchester. I had a business in Southampton and some of my friends have been to the one in Winchester.
Sorry, but I disagree. I was prescribed T3 by my NHS endo in 2010 and I have not had to fight my GPs, who provide it, to stay on it. When my old endo retired, the new jump-up that I saw did try to take it away at the height of the price hike but, because he was in England and I was in Wales, he had no jurisdiction here and that shut him up instantly.
I was told by the endo I saw last month he would tell my gp to precibe it .the appointment was 8th Feb. I was told that he would be writing to my gp and me .I've had nothing also had blood's done as well but no letters or results.
Hi. That's good news for you! You may not remember but we exchanged a direct message on this very subject a couple of months ago, and you said you'd send me the name of your NHS Endo in Yorkshire but I didn't hear back. You said you would check your appointment letter as you couldn't remember who you saw. Please can you let me know via direct message the name on your NHS appointment letter? Your GP Surgery will have know who you were seeing if you cant find it. I can then try to progress a GP referral to them. Thanks very much 😊
I'm in East Cheshire, and my Private Endo here wrote to my GP in October 2022 asking them to prescribe T3 and they've refused. I cannot get the name of an NHS Endo in my area who has or will prescribe it. Even some Private Endos on the Thyroid UK list still want a GP referral so that's pointless since my GP has already ignored 1 Private Endos request to prescribe me T3. My GP surgery do not think T3 is "necessary", even though I've been taking it for 18 months now and feel some benefit. The dose via the Private Endo is all wrong ofcourse, but that's a whole different issue. If you can please direct message me your NHS Endos name I would be very grateful. I wouldn't say where I got the recommendation, although I'm guessing Zannadoo isn't your real name anyway, so no privacy issues! 🙂 Thanks again.
An Endocrinologist may request the GP to prescribe T3 for the patient, who may not because it was very expensive and the GP would have to pay.
The cost for T3 has now dropped to a reasonable price and is now an affordable cost so there's really no point in insisting that a patient cannot have T3 prescribed.
When I was first diagnosed levothyroxine (T4) gave me awful palpitations and husband and I were awake most of the night wrapping ice-cold towels round my neck whilst I sipped ice-cold water to try to lower palpitations.
The cardiologist had a connection to me during the night to record the palpitations and I now also take one bisoporal tablet before I go to bed .
When I had ran out of T3 the surgery refused a temporary prescription and I was desperate and the GP is a horrible doctor and I think he has a deaf ear when a patient requests other than T4.
I am fortunate that the new GPs in the surgery are considerate and do prescribe T3.
When some patients are forced to buy T3 from overseas, they may not receive what they ordered.
I wish you well and hope your thyroid hormone replacements work well for you.
p.s. if you wish to read my 'journey to be diagnosed - click on my name and it will take you to my 'page'.
I hope you find a good doctor (the one I have now is brilliant and helpful).
Thanks so much 🙏 Sorry to hear about what you went through & glad you've got a good Dr now. Having the support of a good husband/partner must help with pushing back. Mine was awful and never believed in Hypothyroidism! Now my ex-husband. To be honest I've lost hope of finding a good Dr now, as I've moved GP Practices 4 times since 2013 in the hope of finding a decent one. I was put on Levothyroxine in 2012 and like you, it's never helped me. Thanks again for replying 🙂
I cannot take any alternative to T3 (and I've experienced sufficient) so just let us help remove - whoever recommends the withdrawal of T3 - their thyroid glands and they can have the experience of a dysfunctional thyroid gland and that equals to no T3 issued whatsoeve - just T4 (levothyroxine(!!!
The 'Announcers' are so stupid that they think that we (who need T3) can be fine without it and to replace it with T4.
All our bodies are different and can reject or accept thyroid hormone replacements, but they have to be accepted by our bodies otherwise we'd feel very poorly.
I and my husband (who has no problems with his thyroid gland - thankfully) has had enough of trying to control my overnight palpitations and the Cardiologist who was trying to resolve these had no idea it was due to unsuitable thyroid hormone replacements (Levo also known as T4.). He took many overnight recordings. When my palpitations were resolved, Cardio had no need to do further checks.
I had so many overnight severe palpitations and had to wrap around my head/neck frozen wet towels to wrap around my neck whilst I sipped ice-cold water.
No longer have to do this as it is a horrible experience.
SlowDragonAdministrator
increasing numbers of patients are being prescribed T3 on NHS
As price has fallen number of prescriptions has increased…..rising by approximately 500 every 6-8 weeks
Typically 6 prescriptions per person per year
openprescribing.net/analyse...
Hi. Not according to my Functional Medicine Dr who only today sent this reply to my enquiries about NHS Endos who would prescribe T3:
"We have a lot of (Private) patients on it (T3) whose need is obvious and for whom there is a clinically massive benefit from T3. Unfortunately, the reverse is happening and the few patients we had who were on NHS T3 have now had this removed due to the findings from a recent south Korean study on T3: liebertpub.com/doi/full/10....
Also the same FMDr told me today that they're:
".....not aware of any NHS endocrinologists who would go against the guidelines to prescribe T3 on the NHS. Unfortunately, everyone's hands are tied and I don't see a way for T3 to be made available to you or any of our patients on the NHS. The guidance at the moment would be to simply switch you back to T4 if you were to see an NHS Endocrinologist".
well he would say that …..
But there are a few NHS endocrinologist who will prescribe T3
Guidelines state that in order to qualify for T3 on NHS an NHS endocrinologist has to agree you have clinical need and initial 3-6 month trial is via hospital pharmacy before ongoing care and cost taken on by GP
Hi. I'm sure you're right that there are some, but getting names is extremely difficult, and the list from UK Thyroid is not a commitment that any will indeed prescribe T3 on the NHS, and many want a GP referral - and mine is not going to say anything helpful about my case because they've gaslit me for 12 years and only prescribed T4 which I've told them for 12 years I feel sh*t on! Unfortunately the Endos recommended to me who have been "known to prescribe" are all down South, and they want a GP referral - and because they're not in my area, my GP won't refer.....ofcourse!! My GP will only refer me to Endos in the Stockport NHS Trust (as that's my area), whom I've seen before and the last one left me in tears.... so I don't want to go through that again. And so I go round in circles along with others on here. I cannot afford to keep paying privately for T3 because I've lost my career due to chronic ill-health. Any further thoughts would be appreciated, thanks.
How much T3 are you currently taking
Thybon Henning 20mcg on private prescription is not too expensive at 50-60p per tablet.
Prescription is for boxes of 100 via specialist pharmacies like Roseway Labs
thyroiduk.org/if-you-are-hy...
Hi & thanku for replying. To answer your Q, I was on 30mg Liothyronine from Sept '21, and then in their wisdom the Functional Medicine Clinic reduced the dose 3m later to 20mg, and then 10mg after a further 3m ..... which is the current dose. I get it from Roseway Labs via private prescription, but am about to run out, and due to big financial difficulties (as I've explained), even 50-60p per tablet is not affordable for me as a single person with a dependent. I take the 10mg T3 daily alongside a reduced 75mg Levothyroxine from NHS. I was on 100mg Levo until Sept '21 when FMDr wrote to GP telling them they'd prescribed T3, and asked them to reduce my T4 dose from 100mg to 75mg. Despite the T3 dose having been reduced twice since then, my T4 Levothyroxine dose has not been increased. Mind you, its never helped me in 11 years on that alone so hey ho.
My last TFTs in Aug ' 22 on 20mg T3 & 75mg Levo were:
TSH: 0.08 (0.27-4 20 mu/l) * my TSH has always been very surpressed on meds, with no Hyper symptoms.
T4 Total: 70.5 (55-181 nmol/l)
FT4: 11.5 (12.0-22.0 pmol/l)
FT3: 3.95 (3.1-6.8 pmol/l) * on 20mg it was 9.55 & TSH 0.01, which combined is also why they reduced the T3 to 10mg, despite my still reporting terrible Hypo symptoms.
Cortisol: 328 (nmol/l)
I.e 6am-10am 166-507 and 4pm-8pm 73.8-291
After these results the FMDr further reduced my T3 dose to 10mg. I have to confess I've carried on self medication with 20mg, but still chronically fatigued on that.
Dec '21 results:
Ferritin: 59 ug/l (10-150 ug/l)
Nb. previous results have been as low as 18/27/29/33/44
Serum Folate: 15.6 ug/l (>4.1 ug/l). The result in 01/21 was 6.2. I started self-injecting B12 in January 2021 on private prescription because GP happy with my Serum B12 being as low as 143 for years when the range is 145-910ng/l. Go figure!!!!
My Serum B12 is now top of the range now bc I'm self-injecting ut I still have severe chronic fatigue & burnout symptoms. Any thoughts?
My having the faulty DIO2 Thyroid Gene was diagnosed in 2022. The FMDr knew this but still reduced my daily T3 dose to 10mg, alongside 75mg levo.
I can't afford to have any more private tests.
Any thoughts? Many thanks.
Many members on levothyroxine plus small doses of T3 need BOTH Ft4 and Ft3 at least 50-60% through range
Aug ' 22 on
20mg T3 & 75mg Levo were:
TSH: 0.08 (0.27-4 20 mu/l)
T4 Total: 70.5 (55-181 nmol/l)
FT4: 11.5 (12.0-22.0 pmol/l)
FT3: 3.95 (3.1-6.8 pmol/l)
was testing done as recommended ?
Last dose levothyroxine 24 hours before test
Day before test splitting T3 as several small doses spread through the day
Last 5mcg dose T3 Approx 8-12 hours before test
ESSENTIAL to maintain folate, vitamin D and ferritin at optimal levels too …..not just B12
Are you taking daily vitamin D and daily vitamin B complex
Low B12
Are you vegetarian or vegan?
Looking at previous posts…..you have Hashimoto’s
Are you on strictly gluten free diet and dairy free diet
On almost any dose of T3, especially with Hashimoto’s, TSH is almost always extremely low or suppressed. Most important results are always Ft3 followed by Ft4
You will see many members have suppressed TSH on T3
Hi, many thanks & in reply to your Q:
1. was testing done as recommended ? YES
2. Last dose levothyroxine 24 hours before test. YES
3. Day before test splitting T3 as several small doses spread through the day. YES
4. Last 5mcg dose T3 Approx 8-12 hours before test. YES 5.ESSENTIAL to maintain folate, vitamin D and ferritin at optimal levels too …..not just B12. Are you taking daily vitamin D and daily vitamin B complex. YES. I take:
VITD3 x 10K IU every other day. Its a large dose based on advice from the UKs leading CFS expert, Dr Sarah Myhill. I was taking it daily for a long time.
2x METHYL MULTINUTRIENT (daily/ see pic attached) £60.00 for 30 tabs!!!
Vits C x 4k per day (Lamberts)
Omega 3 x 2 tabs(Bulk powders)
Vitamin E 400 IU x 2 tabs daily (Bulk Powders)
Nb. I was taking a few other things too like Adrenal Cortex and Adreset, but had to stop due to finances. Also, I was taking 4 x Magnesium Bisglynate tabs from Bulk Powders (as recommended by the FMDr), but they upset my stomach so much that I've given up (again). The only Magnesium I get is in the Methyl Multinutrient.
Low B12. Are you vegetarian or vegan? NO. But I probably don't eat anywhere enough fish or chicken, and I have no red meat. Most days I'm too fatigued to get out of bed more than 2 hrs a day in short bursts. I try to have some boiled eggs + I have nuts, bananas and water by the bed. I try to get to the kitchen to do fish or chicken and veg (no potatoes or chips) a couple of times a week, and no processed food - (as i used to be super fit and healthy pre 2010 although was always tired all the time, so do understand all about low carbs & having good fats etc and not half-fat/calorie counting. ). Due to CF I usually end up only cooking for my son as I've gone past it + I must provide food for him before myself due to income. This is the reality since I cannot work anymore & needing to buy the above recommended supplements and the B12 (Hydroxycobalamin + syringes), along with T3 Liothyronine.
Looking at previous posts…..you have Hashimoto’s. YES but maybe not now as that was diagnosed in 2020 and lots of changes since then. Are you on strictly gluten free diet and dairy free diet? NO, I'm not dairy free because following testing I'm not lactose intolerant - but I consume very little dairy, and only skimmed milk. Dr Sarah Myhill recommends CFS patients move to a Paleo/Keto diet which is high fat and good carb focused (and she says a cause of ME/CFS can be Hypothyroidism), so I do find the go dairy free info confusing.
I'm 99% GF, however, I do have the occasional blip....but if anything I eat far less of anything than I ought. I don't enjoy GF Bread or many GF substitutes, and notice they're often very high in sugar, so just avoid. It makes no difference to my weight though, and since 2010 I've gained 6 stone. I am on prescribed HRT since 2021 for perimenapause.
Thanku very much for reading & advice 😊
Supplements bottle ingredients
Your ferritin is low
Ideally look at increasing iron rich foods in your diet
Liver pate on gluten free toast, or liver once week
Red meat daily.
Vitamin D. That might be too high a dose
You might find my profile page helpful. Hashimoto’s, Dio2 and gluten and dairy intolerance
I maintain my Ft3 and Ft4 at least 70% through range.
Hi. Thanks very much and I will look at your profile page. Not sure how I'll be able have more red meat (given the overall situ), but I do like liver pate so I will definitely try that.
How much VitD do you take each day?
Please can you also direct me to any guidance on how to increase T3 intake to hopefully see a decrease in Hypo symptoms? I had some contact with Paul Robinson recently who you may know of, and when he asked what my TFTs were he said I was never going to get well on my T3 dose! He's Hypo and was told he had ME/CFS too, before he got a handle on T3 . I can post the articles he sent me, assuming it's OK to do so? Thx.
Only increase levothyroxine or T3 at each change
Personally, I would increase levothyroxine up first to 100mcg. Currently Ft4 is below range. This will increase Ft4 and Ft3
Which brand of levothyroxine are you currently taking
Retest 6-8 weeks later
Probably at next step increase T3 by 1/4 tablet. Taking each 1/4 tablet at roughly equal 8 hours intervals
Retest again in another 6-8 weeks
THANKU 😊
Cheapest TSH, Ft4 and Ft3 test is Monitor My Health
Gluten Free needs to be absolutely strictly gluten free
Suggest you try dairy free too
THANKU 😊
SlowDragonAdministrator
have you got the list of endocrinologists from Thyroid U.K.?
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
tukadmin@thyroiduk.org
Most are private, some are private and NHS…..some just NHS
The waiting times to see an NHS endocrinologist are terrible and you might possibly only see the junior assistant at consultation
Yes but as explained this is not straightforward. None are in my location, and many want a GP referral - and there's no guarantee they'll even prescribe given that the NHS Endos I've already seen over the past 10 yrs have refused even a trial.
I have read the article and do not think it is the basis for removing T3 at all! It confirms no extra risk of osteoporosis or AF. It suggests an increased risk of stroke in people in T3 for over a year but also suggests this could be due to previous under treatment of hypothyroidism. It is not a very good study and I can’t see how it could be used to remove T3 from anyone.
Maybe the functions doctor doesn’t want you to go to the NHS?
Slow dragon has access to actual numbers and the prescriptions for T3 are going up not down.
Don’t despair….. it will be OK
Thank you 😊 It's all so confusing. Clearly the FMDr thinks they're right here and is happy to leave the patient in a bedridden state and throw away the key like the NHS. That is the reality here. They won't want to risk being reported to GMC by the GP will they. And sod me .....the longsuffering patient. It is hard to see any future prospects of feeling well again after 12 years of feeling steadily worse and no Drs listening to my symptoms 😢 Thanku again x
It is quite likely patients on LT3 will be on higher overall thyroid hormone doses. The standard approach is to try LT4, if the patient still has symptoms try a little more LT4 and then perhaps LT3. The original study (I have a copy from British Library) does not report TSH, fT3, fT4 or doses of LT3, LT4. So, the study is of little use for comparing mono or combination therapy. It does show that patients who do need T3 have higher cardiac risks, this should instill a sense of urgency to discover why they don't do well on LT4 only and why they seem to need higher overall hormone doses.
NHS prescribing policies take rather longer than that to change direction.
if any NHS endos are reading this paper and thinking of changing their regions vote on their CCG's medicines management committee , they will :
a) have to wait till the next time their regional Liothyronine policy is up for review . (or set a process in motion to make that happen sooner )
b) then once it is under review , wait about a year while they get it together to find a date, have a discussion, get some feedback , find a date for another meeting, then update the policy .
i was following my local areas review of their T3 prescribing policy for 'new patients ' from Nov 2021 to Oct 2022 .. healthunlocked.com/thyroidu....
policy finally updated to allow new patients to have T3 trials in Lancs and South Cumbria in Nov 2022.
most regions were in favour , only one ( east lancs) was not.
There has been a steady trickle of new patient being offered trials of T3 on NHS on the forum over the last year .and it has not showed any sign of slowing down or stopping since this paper was published in august .
It's not a particularly damning paper .. it clearly says they don't know why the findings were not equal across all T3 groups, and that they were lacking enough data to even begin understand why this difference might be eg. no idea of level of TSH suppression , no idea of T4 / T3 levels etc . so they acknowledge no firm conclusions can be drawn from it .
By itself it would probably not be considered particularly 'strong' evidence as far as N.I.C.E guidelines are concerned .
Honestly, it sound more like a case of "we'd really prefer you to carry on paying us, rather than try your hand with the NHS" rather than true case of "nobody in the NHS will touch T3 with a bargepole after reading this study"
Thanku so much for replying again! 😊 I am so drained with all of this. Yes, your last para most probably reflects the reality here!
I wish funding bodies would stop researchers from regurgitating such thyroid stats based on TSH, and apparent links with heart and osteoporosis prognosis, that then go onto say ‘more work needs to be done’ linking to other factors like FT4/3 results ( how about mineral and vitamins too?)! I had a blood test on Feb 1st ( that only did TSH despite asking for Ft3/4 too) and have spent the last 6 weeks ‘arguing’ with two Gps, two receptionists and a pharmacist over the phone that a low TSH of 0.006 was ok with my private endo… the surgery had had an email from him mid Nov ‘approving this’, but no this wasn’t good enough. Meanwhile surgery was reducing levo prescription by 25 mcg to 75. Had to have another letter from him, resulting in yet another Gp phone call saying he would raise levo.back up but read the ‘ heart and osteoporosis’ threat back again for the 5 th time! I am cross with the surgery for insisting below range TSH goes with threatening the patient with heart or osteoporosis problems, and particularly when 5 different members of staff were duplicating the message unnecessarily at a surgery that you normally cannot speak to a medic for at least 3 weeks on the phone! I seem to remember in the last month an article was on the forum suggesting there was no proof a low TSH of 0.004, and above, was linked to greater risk of osteoporosis or heart problems…but I can’t find now…could someone give me a link to it?
it's here Judith healthunlocked.com/thyroidu.... (useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-as-long-as-ft4-and-ft3-are-in-range-.)
but if your TSH is 0.006 you wont be able to use that first paper .
~did you mean 0.006 or 0.06 ?
That paper found TSH 0.04 and 0.4 on levo had no greater risks than 0.4 to 4 did.
BUT if also found that below 0.04 the risks did increase quite sharply.
The second paper on that post may be some use if your TSH is 0.006 , as it found long term TSH suppression on levo did not significantly reduce bone density (as long as fT4 / fT3 in range) .. so that one deals effectively with the "you'll get osteoporosis" threat ,, but is no help with the "you 'll get A-fib and have a stroke" issue .
excellent, thank you Tattybogle, as well as going back chronologically I had tried ‘usual suspects’ like Diogenes and Helvella! No I’m 0.06 TSH…remembered the article correctly just not my own blood results…brain fog made worse by very long covid! I’ll look out the papers again and photograph them onto me iPad for future use! Thanks again.
For those who need a supraphysiological dose of T3 the only hope as far as I can see is to self source and self medicate....at least that has been my experience.
It's a hormone essential for life yet medics in their infinite lack of wisdom insist levo will do the job....at least mine did.
Thyroid Hormone Resistance ( in whatever form) needs to be treated wth high dose T3 to ensure adequate hormone reaches the nuclei of the cells and attaches to T3 receptors....my endo refused to believe I have RTH
I do have a form of RTH and I do need a supraphysiological dose of T3 ....and if I don't have it my health will seriously deteriorate.
I fly solo!
However, those who need smaller doses may find an NHS endo to prescribe, they exist as can be seen on this forum but they are as rare as hen's teeth....so technically your FMDr is wrongly informed. But in truth, not far off the mark.
They record side effects as....
Events recorded per 1000 person years...8.9 for osteoporosis, 2.1 for atrial fibrillation, 3.1 for heart failure, 3.7 for ischemic heart disease, 3.4 for stroke, 5.6 for nonthyroidal malignancies, 0.5 for breast cancer, 3.8 for anxiety disorder, and 4.0 for mood disorder.
How do they verify that each event is T3 related..... they may be coincidental.
It's hardly robust evidence....which ( conveniently) came first the cause or the effect!!
I have none of these conditions and won't deviate from T3 because of scaremongering. There is more robust research!
But..."they" will find any excuse they can to avoid the use of T3....it seems to terrify them!
Madness doesn't begin to cover the situation!
was not even sure what ‘1000 person years’ meant, even less so when told a ‘risk’ of 2.1 for AF….sounds such an insignificant amount to be either to be measured, nor to be worried about!
I understand it means the number of incidences recorded among 1000 people during one year....or amongst 500 people over two years if, for example, the observation time is longer
These results are far from convincing as you say.
Rubbish!!
Thanks so much 🙏 This is really interesting 😊 I have some T3 left, and think I need to bite the bullet and practice with self medication. Just not sure how to go about this, and whether to stop the T4 completely whilst i try more T4 or whether to keep that at 75mg and increase my T3 gradually over a 4 week period. Any thoughts? I am guessing I'll need to keep a regular eye on my levels by investing in TFTs via Thriva or similar which (as emphasised), I cannot afford. I've literally spent thousands on private Med care, tests & meds since 2020 and nothing left. And when I need to somehow buy another load of T3 via my FMDr, they'll nodoubt want to see my results before prescribing and that could cause issues. I can't remember, but I think some people can get it from abroad without prescription but I probably got that wrong! Any thoughts welcomed x
I think that response was for me!
I've detailed my journey to T3-only in my bio, it may be of interest.
I'm afraid there is no quick fix...it needs a lot of time patience and determination. That part doesn't cost anything!!
You could try pushing for a trial with an NHS endo...or you could try throwing caution to the wind and self medicating....but first you really need to understand how T3 works, how to use it and importantly how to monitor the treatment so that you do not over-replace.
My maternal grandmother spent her latter years bed ridden .....I've tried to join up the dots and I now suspect she had the same condition which I have inherited.
In my case I'm fairly confident I have cellular, rather than glandular, hypothyroidism.
Do you have a family history of thyroid disease?
Initially my GP was horrified when I explained my intention but she now understands why I went rogue and leaves me to get on with it
Yes you can buy T3 from abroad....but work with your FMDr if possible.
Good luck and please keep us posted.
Hi, and yes that reply was meant for you! Thanks for replying and the info. I'll look in your bio. I've lost all faith in the NHS for anything, and I can't work with my FMDr as they don't get it either. Reduced my T3 dose twice within 6 months after prescribing due to my surpressed TSH, when its always been surpressed even on just Levothyroxine & all my symptoms are severe Hypo! They have no critical thinking on this subject. Even though they self-medicate themselves!! Oh the irony. To answer your Q, the only family member I know of with Hypothyroidism is my Mother, and she was diagnosed late at age 60. She has been fine on T4 only Levothyroxine. She does not understand why I'm still so unwell, let alone why I developed ME/CFS, and gaslights me too, just like the NHS. It's really really upsetting to have ones own Mother disbelieve her own daughter - and not acknowledge that she (me) is suffering so badly that she has (through no fault of her own) become predominantly bedbound and housebound these past 5 years. Unbelievable doesn't cover it. As mentioned in the thread somewhere, I have the faulty DIO2 Thyroid Gene (homo). This must be from my Mother as she's Hypo. My Dad has passed and he didn't have any diagnosed Thyroid issues. My siblings do not have any Thyroid issues, and none of my Grandparents either (all now passed), not cousins do either in what is a very large extended family. So I must've got the faulty DIO2 Thyroid Gene from my mother's side but she has no interest in finding out. Looked at me blankly when I even mentioned having it! She thinks I choose to have to live like this, as opposed to the full, vibrant life I once led! Nobody should have to convince an NHS Doctor that they're ill on Levothyroxine, let alone they're own flesh and blood. Interestingly, if I were to tell my GP today that I "Felt that I was a Man, rather than a Woman", they'd be all over me like a rash to help me wouldn't they - and please excuse my sarcasm, but this is the sorry state of our NHS. And when I once sought help for horrific Domestic Violence I wasn't sign posted to a Women's DV Charity or Refuge. I was given antidepressants and told to decide whether I could forgive my husband or not 😞 Consequently I stayed in an extremely unsafe environment for the next 7 years with my child because of a female GPs terrible advice. I have no confidence in any of them. My Hypo symptoms over 12 years and low TFTs clearly do not count as evidence to the NHS of a serious problem requiring anything other than continuing with Levothyroxine, which does not help me! Thanks again for replying & take care yourself 🙂
Sorry you've had such a hard time RhianR
A couple of things have struck me...
You say you have the Dio2 polymorphism/ homozygous (CC genotype) which means the inheritance is from both parents.
Heterozygous means inherited from one parent ...TT genotype.
This should be considered by an endo for ( at least) a trial of T3
academic.oup.com/jcem/artic...
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
This paper states
The rarer CC genotype of the rs225014 polymorphism in the deiodinase 2 gene (DIO2) was present in 16% of the study population and was associated with worse baseline GHQ scores in patients on T4 (CC vs. TT genotype: 14.1 vs. 12.8, P = 0.03). In addition, this genotype showed greater improvement on T4/T3 therapy compared with T4 only by 2.3 GHQ points at 3 months and 1.4 at 12 months (P = 0.03 for repeated measures ANOVA). This polymorphism had no impact on circulating thyroid hormone levels.
In other words T4/T3 combo should benefit you!
If you haven't already consulted an endo your GP should refer you. If they don't then I suggest you speak to your practice manager and ask that you be given a reason for refusal....and stick the above paper under their noses as evidence!
I'm not surprised you feel so unwell and let down by the system, I'm afraid you need to have another go at them because you are being neglected and they need to sit up and listen
Easier said than done I know but your health is at stake....correct medication should go a long way to improving your health and with better health you will feel stronger and more able to tackle life
Suggest you write out a " plan of attack" by listing all the points you consider support your request for a trial of T3....symptoms, Dio2 effect, your poor quality of life etc Take that to any appointment as an aide mémoire
Not all medics are heartless and hopeless...can you see another GP?
Re TSH ....info here to add to that "plan of attack".
TSH is NOT a reliable marker, particularly after you have been medicated
thyroidpatients.ca/2021/07/...
You may already have gone down this route but if not then maybe something here will resonate.
Good luck!
I am currently at the stage where I am taking just 25mcg T4 alongside 55mcg T3. I arrived at this place by trial and error, but it’s my ‘happy’ place. I have tried adding more T4 and reducing the T3 as well as the other way around but have always come back to the above dosages as I felt worse. I find I need less T3 in the summer, so I usually drop down to 50mcg as the weather warms up and I find that suits me well. As I mentioned in my previous answer, I have not had to fight to keep my T3 being supplied by NHS Wales and I have an annual (thankfully telephone) appointment with the endo across the border who monitors and signs me off for another year’s prescriptions. So much of this in the 20 years since I was diagnosed with this condition has been down to educating myself on this forum and the ThyroidUK website and the plain experimentation with the T3/T4 dosages. I found my sweet spot, as many here have, and I hope you will too. I wish you all the best.
Hi and thanks so much for replying ☺️ I'm glad you've been looked after by the NHS, which sadly has not been my experience. How can different parts of the same organisation work so differently on this subject I do not know. I've been battling this since 2010, with a diagnosis in 2011. I am worn out. Without NHS support I will never find my sweet spot as you have via them. It makes no sense. I am Welsh too and originally from the Vale of Glamorgan, near Cardiff - and so perhaps I should move back home as I've always wanted to, and to try to get an NHS prescription that way!! Which part of Wales are you in? Best Wishes.
I’m in mid-wales near Welshpool.
I tried Metavive first, and it worked for a while. Then things got out of kilter again, and someone on here suggested, based on my blood test results, that I convert well and may need some T4. I did this, and then tried NDTs, as I felt - erroneously, as it happens, that it would be better, as I'd know exactly what was in it. It was ok for a while, but then they started mucking about with the ingredients and it was problematic ordering from the USA, so I then went back onto Metavive with T4. By this time, however, the NDTs had been useful, as I now knew how much Metavive II equated to an NDT, and the NDT states how much T4 and T3 is in it. But I benefited from T3 - but I couldn't do NDTs by themselves, as I always felt overmedicated. I needed the T4/T3 combo and had to work out via symptoms what my body was happy with.
I have sent you a PM I hope it helps you.
I will look & many thanks for replying 😊
The study found that L-T3 use (of any duration) resulted in an increase in risks of heart failure and stroke but not atrial fibrillation or osteoporosis; these findings were heterogeneous when divided by subcohorts, thereby raising the question of whether risk factors that were unaccounted for drove this trend
In other words, the increased risks were found overall; however, they were not consistently found across all sub groups. So the risk was associated with sub groups and so the generalised statement that t3 increases the risk is NOT true. There was an associated risk in some sub groups; however, this study is observational and what cannot be shown is causation. So the increased risk in some sub groups was associated with t3 use but could equally be due to another factor. So that other factor might be that people on t3 have by definition struggled to control their symptoms of hypothyroidism and typically have suffered for years with poorly controlled hypothyroidism before recieving t3 therapy. So another interpretation of the data could be...
In some sub groups of people on t3 there is a small (approximately 3 in 1000) elevated risk of cardiovascular disease however the cause of this increase is unclear. It could be a side effect of the medication or a characteristic of the subgroup on t3 such as an increased history of poorly controlled hypothyroidism or some other unknown factor or factors. Further research is warranted before any definitive conclusions can be drawn.
Thanku for replying 🙂
I am so sorry to hear of your plight. Its disgraceful that your GP won't refer you to an Endo outside your area. You are entitled to choose a hospital of your choice anywhere in England under the NHS Charter. I'd be inclined to research surgeries in your area and ask before moving if they will follow the NHS Charter. My GP also wanted to refer me to my local endocrinology but I refused as it is known to be led by a certain notorious endo who is extremely anti thyroid medication fullstop, believing its all psychological. Luckily they were happy to refer me privately elsewhere but refused to treat me with a combination thyroid med. I had to move NHS surgeries to get that and later on had to see a nhs endo but chose out of area. I don't understand why your Functiinal doctor got the GP to lower the levothyroxine......it shouldve been left and the Lio just added in. This because your ft4 was already low. It looks like your functional doctor is aiming to have your ft4 & ft3 levels bouncing a long the bottom of the ranges. This is too low. Most people need to be at least mid range, some of us need to be near the top of the ranges to feel well. So am not surprised you feel poorly.
Under the nhs chartwe you are also entitled to a first and second opinion from specialists. Those specialists can be of your choice.....however on the nhs technically you can choose hospital not specific specialist. One way round this is to see them privately first and ask to be transferred across to their nhs list. Many Consultants will do this, many do a mix of private & nhs work.
Please rest assured the NHS does prescribe T3 medications : liothyronine & NDT. Its true they are reluctant to do so & its true a definite clinical need has to be expressed by a nhs endo. its true some GP surgeries refuse to follow even nhs Endo recommendations. Under what right that they refuse to do so I have no idea! In that situation you have no choice but to switch surgeries to one that will!
It sounds like you are doing everything you can to support your thyroid but really it now comes down to getting the necessary level of thyroid meds required. I too was diagnosed, wrongly I believe, with CFS/MS & left to be ill. I had to fight hard to get an appropriate diagnosis but even when I did finally get treatment, then had to fight to get optimum treatment. The NHS refused to withdraw my CFS/ME diagnosis telling me that my Hypothyroidism was a consequence NOT the cause. Hmmm.
When you feel so ill it's hard to fight tooth & nail to get what you really need. It's what I had to do sadly. For me though I could scratch the money together to go private & buy my own meds for a few years whilst I fought the nhs system. Its all so so so wrong as the nhs are creating needless suffering & effectively disabling people. As am retired now I would struggle to do this now so I sympathise.
Thanku so very much for such a helpful reply - you understand perfectly - and I would like to DM you when I can muster up the energy to properly reply 😊 thank you again 😊
No probs. Glad it was helpful. 
Hi Rhian😊
There are lots of poor quality papers coming out of certain areas of the world where the mantra is publish publish publish. The fact most of it is very low quality is being recognised.
Some places you are regarded on the volume of work not the quality. These papers can be picked apart and the fatal flaws exposed because currently the whole research area is underpinned by some fairly bold assumptions and extrapolations.
It does hold back progress and I’m sure behind the scenes there will be some jockeying by medical journals to be regarded as the best, then the others, the ‘also rans’ churning journals where peers simply rubber stamp each other’s work to progress their careers.
The biggest problem is the easiest way to get published is to do work that reinforces the dominant thought in any subject and it reinforces the current paradigm. I call these people academic sheep.
So as those at the top of the tree (actually doing the serious research) realise the current paradigm may need more than a fair old tweak and change direction, the sheep are running down the track the opposite way.
As I start to get up to speed in the area, the glaring inadequacies of the research are not lost on me. In fact on more than one occasion I’ve been left speechless - my hubby would attest - a rare event.
There is some superb research out there but we cannot wait for that to trickle down so we have to self-advocate - this is not a ideal situation (UNDERSTATEMENT) but that why we coalesce into massive forums to push from the bottom up.
I’m going to pop this reply out as a post I think. 🤔
Thanks so much for replying ☺️ and what you say is really interesting 😊
Quite: quantity over quality, no original research…waste of funding and researcher’s time!
Ah but not quite a waste of the researchers time - publications get more funding- as long as it is published they are not too worried - funding secured and careers made.😬😱
Thank you for posting this RhianR.
Nothing is mentioned about if the patients were left to suffer untreated thyroid conditions for years etc. The study is so inconclusive.
Before treatment I was suffering terrible palpitations and was diagnosed with PAC (premature atrial complex).
Then I started having treatment for hypothyroidism first levothyroxine- which made me feel awful and then liothyronine mono therapy.
As my condition slowly got better, so the heart problems disappeared!!!
I am now approaching 70 and have been taking T3 alone for almost 10 years - I’m still here.
These studies should be treated with the contempt they deserve and we should all be empowered to speak up talk about the failings of them!
Glad you posted this though - we need to be forewarned so that we can formulate our arguments ready for visits to the doctors just in case they want to tamper with our treatments
Take care- hope you continue to get the treatment that works for you
diogenesRemembering
I've commented on this paper before. You should note the the p (probability) value for heart problems/stroke etc was 0.049. Anything above 0.05 is classed as meaningless - no correlation. 0.049 is (uncertainty apart) so close to 0.05 as to make no difference. This paper should not have been allowed to be published, with statements made from dodgy results. There is no relationship that could be safely assumed by this poor paper.
I currently take 112.5mcg T3-only, have no signs of overmedication ( I monitor almost daily); a heart scan has recently shown a perfectly healthy heart.
I'm approaching 78 years old and now coping with issues that I'm convinced are the result of decades ( a lifetime?) of decreasing cellular T3. My general health is considered good!
A form of RTH has been my conclusion...and my GP no longer panics about my having gone rogue.
I'm sick, tired and fed up of hearing the scaremongering tales related to T3 and of reading on a daily basis the suffering people are enduring as a consequence.
Of course T3 has to be understood, respected and used judiciously....but does this not apply to medication across the board!
Sorry, I'm ranting again but I've suffered to varying degrees for most of my life unaware that low cellular T3 was most likely the root cause and it saddens me greatly to see this perpetuated when there is a solution
Ah....but it would take time and knowledge to resolve this.
How many medics are able to offer these essential elements....so much easier to check TSH, offer LT4 and say " this little white pill is all you need to feel better ".
It didn't work for me, years ago, and it isn't working now. My then GPs had no idea why I felt so unwell so they decided FMS and CFS must be the problem.....NO!!
For those of us who do not respond to levothyroxine or the basic treatment most GPs mete out, so long as balderdash like this is published, and fuelling the views of incompetent medics... nothing will change.
Apologies for the diatribe.... and as ever huge thanks to you and your team for breaking that mould, and for opening cracks that light will surely reach through....in time.
Thanku very much for replying, and yes, it's really quite unbelievable that my own private FMDr (who had originally been my GP) sent me this paper as a way of telling me that I'll not get anywhere on the NHS! I quoted what they actually said to me in my first reply to someone on here but can't remember where it is. Somewhere at the thread start! Thanku again 😊
One has to wonder... Pharma produces T3 and T4. T4 alone will help many people, and Pharma profits from that. The addition of T3 makes almost everyone feel better, and Pharma will gain some profit from that. However... those who continue to feel unwell (as they don't get T3) will need to take other drugs to address the symptoms of being unwell, as well as the T4 that is only partially helping them. I wonder how much more profit is in the sale of all the other drugs required to fill the void that T3 may address? Call me a cynic, but it's all about the money
diogenesRemembering
Misusing p numbers is very common. Here's an article concerning bone problems which discusses the shortcomings of p value diagnosis.
Osteoarthritis and Cartilage
Volume 20, Issue 8, August 2012, Pages 805-808
Editorial Why the P-value culture is bad and confidence intervals a better alternative
J. Ranstam
This is an observational study. While I personally think that they can be as valuable as randomized studies, overall I have found that they have been shot down as unreliable evidence. So why would this specific one have any influence on prescription practices? My guess would be, because of cherry picking what fits the agenda. My impression is that thyroid disease is still very poorly understood and that relevant research does not always filter through to where it could be useful. In addition there are so many studies that contradict each other, it is extremely hard to discern which ones can be applied to health care. And, on top of all this, medical ruts are deep and inflexible. It was good to see though, that, except for heart attack and stroke, all other often quoted adverse effects have been ruled out. And, as always, more studies are needed. So we still don't know for sure. 
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