My GP never gave me any other options apart from T4 a year ago when I started on medication and whilst I have read here a number of you are following other options I have never felt in any position to explore further.
I have over the past couple of weeks folllowed up with another GP who specifically followed up with top Endos in our part of the U.K.
I was told in no uncertain terms that any other options apart from T4 are not only expressly not recommended but also likely to put my health at real risk.
All I can say is I am more than happy to try out vitamin supplements from online advice and take a risk, but certainly not on medical dosing options.
If people are doing this based on google then all I can say is good luck, but I am in no way prepared to go against 2 sets of medical advice.
I find these discrepancies among experts most odd to be honest.
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Danielj1
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From what I understand, the problems come in when you get someone who doesn't convert the T4 in Levothyroxine in to T3 very well. There are supplements that help this to happen, but there can also be genes that can stop or reduce this conversion, so no amount of supplement swallowing is going to help there.
There are many people who don't feel well unless they take T3 or NDT which contains T3.
There are GPs and Endocrinologists who will prescribe T3 but I get the impression they are like gold dust!
A previous advisor (a doctor) to Thyroid UK was wholeheartedly behind T3 and NDT.
NDT was used to treat hypothyroidism for years, before the big pharmaceutical companies invented levothyroxine.
If you are doing well on levothyroxine though, then there is no reason to look at other treatments. And you do have to feel comfortable with your choices, as you say.
I don't think many here are self medicating by Google, there is a wealth of patient experience here covering years of mis-treatment by the NHS that has kept them very ill, plus many members have had the wonderful experience of being treated by one of the most eminent thyroid doctors this country has the good fortune to have. Some have had the privilege of being treated by the late Dr Skinner, another doctor who could think outside the box and brought many severely ill people back to good health.
If the top endos in your part of the country are saying that T3 will put a person's health at risk, then I am sure those who can't tolerate Levo and have regained their health on T3 will disagree. But you have to remember that NHS doctors have to toe the NHS line or risk their jobs, you will know from reading the forum that there are some endos who were happy to prescribe T3 and saw their patients do well on it but are now being told they can no longer prescribe it. They won't have suddenly changed their thinking about T3, they will be thinking about keeping their jobs
Here's hoping you are able to fully regain your health on Levo alone, a lot of people do.
Thanks Susie, this has been incredibly difficult and time consuming to master the rules of T3 conversion and I will probably get there BUT if there is a safe lower stress alternative that other are being allowed in other post codes then why on earth does this part of U.K. fall behind.
Do you have a name for the top endo or are you not allowed to say. I have the name of Dr Peatfield but he’s the other end of the country. I have never felt so ill as I do now and have since half my thyroid was removed. I’ was prescribed a raise in T4 to 125 from 100 but this led to frightening palpitations which I’ve never had before. I’m sticking close to 100 now with GP agreement. However I’m still getting odd palpitations and feeling so bloated and ill. Waiting for blood results but they only do TSH. Will get private tests but the effort involved stops me I’m so weak and depressed. I’m not looking for sympathy but this post has run away with me- just the endos name
I didn't actually say he was an endo, just that he was one of the most eminent thyroid doctors and I was referring to Dr P He has been ill again lately and I don't know if he is seeing patients at the moment. If you make a thread specifically asking for recommendations in your area, or wherever you can travel to, maybe someone knows of a good doctor you could see.
You might like to read Dr P' s book, "Your thyroid and how to keep it healthy"...in it you will find answers to many of your concerns, and advice that may increase your confidence to ask more questions about thyroid function tests and possibly moving from T4 monotherapy to a T4/T3 combination.
Sadly we have to do our own homework, carefully and in a discerning manner, and thoroughly because we are all different and require individual treatment protocols. I doubt any of us would suggest there is a quick, one step solution.
You have arrived at the best place - follow the advice offered here and be very patient! There is light at the end of this long dark tunnel, I can vouch for that!
It’s a funny thing- I have that book but find reading it with understanding difficult. I’m an academic and a retired director of an examination board but the brain I once had seems to have turned to mush. At first I thought it was dementia but now see it’s the thyroid but such a powerful effect on every bodily system
It's a "tough trot" isn't it! I reached the stage where I could barely function. As for reading....six words along the page and I could hardly recall the first of them! I used to have a sharp brain which I relied on.... mine turned mushy too, but is less so now. This condition is no respecter of intelligence.
I'm afraid we must accept that progress is only possible if changes are adopted slowly and are carefully monitored. Before we start this journey it's important to understand that improvement is possible. You need to have confidence in your advisors (and you are in safe hands here)....and, crucially, yourself!
Take one step at a time otherwise you will become overwhelmed...it gets easier as you begin to understand what is involved.
First step...order a blood test kit (on line). I use Blue Horizon but there are others available. You can do this without leaving your armchair...a bonus when you feel totally enervated!
Once you receive the results post them on here and you will be offered the most amazing advice. Then it is onwards following said advice. I don't presume to advise on treatment - I'm just an advocate.
Determination, patience, time and reading/knowledgr will also help you ...have another look at a few pages in Dr P' s book!
I doubt this rant adds much to what you already know but I hope it sows some seeds of encouragement.
The inference is that anyone with a perfectly working thyroid is putting their health at risk. They will be getting T4 and T3 directly into their bloodstream continually.
T4 monotherapy is unphysiological. For at least some people, it simply does not work. When they are advised that there are NO alternatives they have to weigh up their options - which are:
Either:
Continue T4 monotherapy and suffer - mentally and physically - sometimes in extreme pain, with impaired muscle strength, impaired brain function, etc.
Or:
Try something else - desiccated thyroid, T4 plus T3 combination, T3 monotherapy - and accept the risks.
In many areas of medicine, a patient is offered some treatment and is properly informed, before signing a consent form. In thyroid therapy they are simply denied ANY choice and do not get properly informed. The "advice" you have received amply demonstrates that you are not being given a choice, doesn't it? (Well, no choice beyond take your levothyroxine or don't take it.)
I think it shows the starkness of the choice that so many people have decided to tread the "try something else" route. Many of those who have made that choice would formerly NEVER have gone against medical advice. Were scared of buying online. Had deep reservations about "pig medicine". Can't really afford to.
If you end up suffering as much as some, and I sincerely hope not one more person ever does, you too are likely to review your decision to follow the advice you have received.
(Possibly ironically, this is written by someone who does pretty well on levothyroxine. But I know beyond all doubt, not everyone does.)
That is the problem. Basically, in the UK right now, there is virtually no-one. Some might know - but few will put their heads above the parapets and say what needs saying.
It is because of this near-total lack of support for anything other than T4 monotherapy that so many end up going elsewhere than the established endocrinologists. People are willing to take the risks rather than put up.
As a minor, marginally interesting factoid, levothyroxine is allowed to contain a small amount of T3. Up to 1%. Inevitably some T4 can breakdown into T3 so achieving absolutely no T3 is difficult-to-impossible. Whether any particular make, dosage or individual tablet does actually contain a measurable amount of T3 is another question altogether. It just goes to support the idea that T3 isn't so dreadfully dangerous...
(I am not expressing an opinion as to whether you as an individual need to take T3 - or not.)
It is not unusual for medical consultants to have differing opinions on how to treat patients. This applies across medical specialities and often reflects ongoing research and personal experience. What complicates treatment of thyroid disease is the influence of the drug companies who developed levothyroxine in competition with natural desiccated thyroid. Producing a synthetic alternative allowed for patenting of the drug and long term income. It became more widespread from the 1950’s onwards and the drug trials that drugs have to go through today weren’t there at that time. Since then it has not been in the drug companies interest to fund research into alternatives as levothyroxine is widely prescribed and has become a sure fire source of income.
There has also been a move in medical training away from recognition of physical symptoms to the focusing on medical tests. This is fine if the tests are fit for purpose but truthfully in the case of thyroid disease this isn’t so. What is needed is a test to identify the amount of active hormone available at cellular level. There isn’t even consensus on the metabolic pathways across all tissue types at gp and consultant level. Therefore it is quite possible that differences in genotype influence the efficacy of levothyroxine metabolism amongst the general population, hence a significant minority who continue to complain of hypothyroid symptoms with ‘in range’ blood results.
Medics are as varied as the rest of us, some are better than others, many are brow beaten by the ccg’s and are drowning with current nhs targets. As in many things you have to shop around to find good ones. It is unsurprising that in this age of more easily available information more people are empowered to take their well being into their own hands and after being failed by doctors choose to self medicate. It is not a route taken lightly but reclaiming quality of life is empowering and life affirming.
Producing a synthetic alternative allowed for patenting of the drug and long term income.
That would make perfect sense. If levothyroxine had ever been patented. It wasn't patented in the USA and I don't think that it was patented in the UK.
One of the ironies is that Armour is owned by Allergan - a very large pharmaceutical company. Armour is one of the longest lived pharmaceutical products and it has survived over a century without product patents.
Far, far more NHS endocrinologists were very happy to prescribe T3 until pressurised by vast, and unjustified, price increase of 6000% in last few years
The fact 100 tablets of T3 now costs NHS approximately £960 has more to do with it now not being easily available, despite clear clinical need.
(Cost in Germany or France £25-£30 per 100 tablets and even cheaper in Turkey, Greece, Mexico etc)
There are however, despite this terrible cost charged to NHS, quite a few if us who do indeed still get prescribed T3 on the NHS. This is acknowledged by British Thyroid Association and the Government.
The question is how small a percentage of patients need addition of T3.
The Royal College of Physicians acknowledge approximately 10%.
Many Thyroid patients groups would suggest it may be much higher, around 20-30%.
There are just over 2.2 million people in the UK who are on Thyroid replacement hormone. Even if just 10% that needs T3, that is a LOT of patients. Approximately 90% being female
Research suggests approximately 16% of thyroid patients may have DIO2 gene variation, and therefore if on Levothyroxine need addition of small dose of T3
Look up details of Dr Toft. He used to be a great supporter of Levothyroxine only but has recently changed his views and recognizes that some people need T3. As long as blood tests of T4/3 are not over range, he agrees it is safe.
The comments he makes are in threads on this site. You should be able to find them easily but make sure you look at the recent positive ones. He was very against T3 a few years ago and has done a huge about turn.
Understandably many of the younger consultants, having spent years, and great deal of money, getting qualified are reluctant to openly stand up against their employers, financially induced guidelines.
Yet often these same consultants can prescribe T3 or NDT to the same patient, if seen privately.
After three decades of feeling so debilitated, very crazy, unable to work, I decided to stick two fingers up at all types of thyroid doctors and also GPs who refuse to listen to ME (as in I) as well. And took the decision to oversee my own medication and health. I gave them so many chances to get it right; they blew it every time. Since taking that decision I have gradually got it right on my own, but it does take a lot of patience and trial & error. Though I am a complicated case - really can't convert T4 into the usable thyroid hormone T3; and have thyroid antibodies = Hashimoto's. It was me who discovered both of these complications after about 33 years of illness. Good luck
I'm exactly the same as you. Diagnosed 25 years ago. Only ever given levothyroxine. After birth of my youngest son felt really ill, gained weight hair thinned tired constipated. My friend had consulted Dr P and after seeing him started on adrenavive and metavive as my T3 low and had very high antibodies. Now I'm a normal weight more. Energy no constipation but my T3 a little high and antibodies still high. I've still some way to go but hopefully getting there. I still haven't told the GP as I think I get intimidated. I'm also worried about my holiday insurance if anything goes wrong. But whatever my health must come first
It's a long time since I was told I had a thyroid problem and I suppose aplus point was that my GP had been recently diagnosed as well. So we both took NDT obtained on the NHS and as others have said it had been around about 100 years. Had no problems whatsoever. But a few years down the line there was a strike in Canada and I was without for 3 months! I asked to go onto Levo as with a young family I wasn't coping and thank goodness I was good Levo which I'd been on till getting onto 3 years ago. Since the menopause though I hadn't been feeling well and started thinking should I give NDT another go. I read a lot, joined this forum, asked questions and I then decided to go it alone though promised my GP I would tell the new Endo I was booked with. He said he would monitor me and things went well and I was getting my life back but because I had been prescribed this before I was happy to go back on it. It was a bit of a learning curve but I was used to listening to my body but I think it's essential to get testing including FT3 and fortunately I routinely get that, some don't! So going out of the box if prepared and having an expert who understands it shouldn't be a problem.
Just chiming in regarding why t3 might put your health at risk.
My doctor explained it to me one day:
T4 is prescribed instead of T3 mostly, because the body regulates how that T4 is used. While T3 is not.
- T4 travels in the blood continuously. Different body parts take from this pool of T4 as it whizzes past, and converts some of it locally (inside the heart, liver, gut, skin, etc) to T0, T1, T2, T3 as needed.
- T3 (Natural Dessicated Thyroid or Armour brand) travels in the blood and is instantly actioned by all body parts, bypassing the 'safe' regulatory nature of converting T4 to T3.
Some Nasty effects could be:
Overactive stomach
Heart Palpitations
Sensitivity to high temperatures.
All signs those parts of the body received T3 at the wrong time, or too much.
From a doctors and endos perspective, prescribing T4 is ideal. They do not have to worry about over and under dosing, and giving doses at the wrong time, and the wrong dose for the wrong type of person. They will always cover themselves first before prescribing T3, which is why you have to find one that is understanding and willing to try things.
Sounds wonderful MandB, the problem all hinges upon the ability of the body to "regulate" the production of the generation of T3 (and T2, T1 and T0). Many hypos can't do that hence the necessity of taking T3 externally (i.e. via a pill). All to the nasty effects you list are all true but that is the problem we all have to face, getting the dose (of extra T3) just right. Hence the weeks (sometimes months) of fiddling around with increasing the dose a bit, measuring our T4s, T3s and TSH and readjusting if necessary. However, it is worth it. I fiddled for about a year and paid for blood tests over and over but I am now and have been for years at 99% wellness. (That last 1%, in case you are interested, is that my T3 runs out at about 9:00 pm in the evening and I need to sleep - but I don't count that as a big deal).
Danielj1 Sorry, this may not be brief but I hope it offers encouragement!
I've had indifferent health for approx 40 years and was eventually diagnosed as hypo over 20 years ago. My then GP prescribed levo which helped a little but I still felt under par. Move on to approx 15 years ago and the diagnosis was fibromyalgia and I struggled on and also began internet searches because I was convinced my body was trying to tell me something else!
Over the decades I've had numerous scopes,scans, tests, medications,alternate treatments and so on. all the while I was convinced there was another key to unlocking my problems. Looking through NHS pages I found TUK and my health journey took a new route! I read much and started to follow the advice I found here.
I started with private blood tests and learned here that I had to optimise various vitamins and minerals ...and, crucially, that I was not properly converting T4 to T3.
Back to see a newly arrived GP...she eventually started to listen to me.
The last time (December 2017) I saw her I was slumped in a chair declaring that I felt really ill and was struggling to cope and saying "this is not me"! Again, she listened.....but unfortunately, the next week, had to be away for some time which left me seeing two others in the practice. It was clear to me that they had no idea how to treat me, one suggested I come back in 6 months and see my (now) usual GP. I was by then terrified of how I might be in another 6 months! The other was struggling with an endo who had cut her levo dose leaving her feeling "rubbish".
I decided to self medicate and with the guidance of TUK members I felt confident enough to buy T3 (from Mexico). I very carefully followed advice here and for the first time in decades I am seeing a blink of light at the end of a long dark tunnel.
I know it will take time, and I know I will need to experiment with dosages and I know that I must have blood tests along the way to ensure my results are as they should be....and, I also know that I have found that missing key!
You say, "If people are doing this based on google then all I can say is good luck, but I am in no way prepared to go against 2 sets of medical advice."
My response to your concern is one of understanding....I too was a doubter! There is much on Google that is misleading and ill informed but you need to be open minded and discerning. It led me here!
Excellent advice you have already had in the previous responses, I can only add.....grasp it with both hands, it could change your life! It certainly won't be a quick fix so don't expect that but, with that advice and your determination, it is the best way forward!
Don't waste time! I'm 72 and have lost so many good (health) years but with the correct tools to hand I'm now heading towards the light at the end of the tunnel...with a lighter step and much gratitude to the folks here!
If everyone could tolerate T4 in treatment, this forum wouldn't exist. There is no doubt that, in that happy case, thyroid hormone therapy would indeed be much easier. Unfortunately the real world is upon us and a significant number of people cannot respond to T4 only for reasons I have given in many posts here. Direct T3 therapy either NDT, T3 only or T4/T3 combination has to be treated with much more respect and control than T4 only. This does NOT mean these are necessarily dangerous and the exact methods for personal treatment have to be laboriously worked out personally. Leese has shown that it is possible to treat patients on T3 longterm without adverse consequences. The problem for doctors is that in prescribing T3 or combination or NDT, they and the patient have to be able to monitor and control much more closely and continuously than with T4, and neither doctor nor patient can routinely be expected to or able to comply in all cases.
Assuming you believe that they are experts. I was put on thyroid medication when I was 20 by endo who explained to me that my thyroid (and face) is swollen cos my thyroid is struggling to produce sufficient amount hormones. After couple of years the swelling was gone and she said ''great you no longer need to take the hormone'' as if by magic my thyroid learnt how to do the job properly by itself. What an idiot. Of course the swelling and my hypo symptoms came back. She treats my father now who only has half of his thyroid left and despite him complaining about being cold tired and constipated she keeps him on 50 mcg of levo cos his blood test are ''ideal'' and she is the ''expert''. In my experience you can sit in front of a doctor with every classic textbook hypo symptom going and all you get is the reading of your lab range results. You might as well talk to a monkey. The guidelines rules and if they stick their neck out their head gets chopped off. Hillary Clinton is on NDT and I assume she has one of the best doctors in the country who is not trying to kill her off with T3.
they certainly left her hypo for many years but my point was she takes ndt and as one of the richest women in the world, i doubt she would take it if it was dangerous x
It's all to do with cost and nothing else. Example buying T3 NHS pays around £250 per box which is a complete rip off.
Here in France the T3 costs around 3 Euros per box. Its a no brainer.
No wonder most health authorities have told GP etc to stop prescribing it to patients, this medication could make them well.
I know that you are not talking directly about T3 I am just using one example.
Since being on T4 only i have had low moods, confusion, blurred vision. My symptoms were constipation, hair loss and fatigue. The constipation has gone my hair is still crap and im still fatigued and have slow recovery after exertion. For me the addition of severe brain fog, anxiety and blurred vision are really not justification to accept this medication eg T4 only as fit for purpose as i could just take Senna and not get the brain fog and confusion and throw in some B vits for energy and im done. In my opinion being on T4 only lows our natural T3 circulating and starves the brain of T3 to ignite our dopamine and serotonin hence the black cloudy brain fog every single day. They just tell you to pop another pill like an anti psychotic which will give you a raging hunger so yourll want to eat everything which will increase your blood sugars and insulin and give you tachycardia and irregular heart rhythm but they cannot give you T3 because you have had heart issues. The whole thing is a joke.
I know my T4 only isn't bringing me to health its making me worse but not sure if my thyroid is making anything now that my TSH has been suppressed so low for so long. Im like the others here part of me is ready to take the risk at ordering T3 from outside the uk but am afraid and unsure which supplier i can trust and how much to take.
The main issue i have at the moment is at the dose of levothyroxine im prescribed my TSH goes way below optimal range 0.06 and it has been lower. I feel that all that extra unused thyroid hormone is effecting my liver and ive read that it can convert to rT3 and cause hoarseness which i get on that dose. My energy is better on most of the doses ive been given, even 50mcg so can not see why my TSH has to be so low. I feel that this unusually low TSH has causes my joints to be painful and my voice to become hoarse. Lower doses that ive been on have caused brain fog and confusion it just gets worse with the increasing dose. Even whilst on 125mcg and suffering insane brain fog i would still have to take B vits for energy and recovery after exercise which wipes me out and levothyroxine doesn't do anything to improve that. I'm gluten free and apart from the odd spot of dairy milk in a cuppa lactose free too. Ive improved my gut health and managed to eliminated all bloating and gas that i had, ive cut out sugars simple and complex, taken iron to achieve optimal levels but still im not feeling a healthy brain with crazy fog and even crazier weird looking eyes that i do not recognise as my own. From all that ive read and personally experienced on T4 levothyroxine generic its not idea it may reduce T3 and cause brain fog by reducing T3 available for the usage of four major brain neuro transmitters. Symptoms like dry hair and skin, feeling cold and anything that resembles functional health will not be achieved for me on levothyroxine. Im going to ask my Endo where do we go from here as my supplement monthly bill will probably buy me some branded versions that have been known to work better on a cellular level and without having to over medicate with this less effective generic version. In addition since that i have Hashimotos having an allergy free version my reduce my antibodies and save the rest of me whats left.
Post separate questions about your concerns on the forum - they will be hidden to most on existing threads like this - and different members will offer the information you need.
First you require to have extensive blood tests done (not just the standard NHS screening) to establish your thyroid hormone levels and any vitamin and mineral deficiencies you may have. You can find that detail by using the search button beside your avatar at the top of the page....previous related posts will pop up. It's another source of info if you haven't already done this.
I felt so ill that I saw self medicating as the only way forward, I'm now working to find the best T4/T3 combination for me...you must be determined because it's a long, slow and laborious journey so be prepared because there is no quick fix solution that I know of!!
To my mind looking at a major medical research institution website recently that conducts scores & scores of endocrine clinical trials & not even seeing so much as one single token study on ANY of these issues speaks volumes. Aside from sites like this one, the only hope I see is more women have joined the M.D. ranks (in the states). So statistically this could foster some greater firsthand thyroid understanding.
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Advice on Test Results and Reducing T4/Increasing T3
Success! Folate supplement has finally increased my T4 to T3 conversion!
TSH over 100, undetectable T4 & T3
