I came across the following interview, which might be of interest to members.
Members who haven't come across this doctor before - he was an Adviser to Thyroiduk before his death which was due to an accident.
ndnr.com/anxietydepressionm...
He would never prescribe levothyroxine - only NDT or T3 for those patients who were 'thyroid hormone resistant'.
I love this article and am sharing. Thank you!
Dr Lowe is missed very much as he was a sensible person but what aggravated him most of all was the payment to doctors (in USA) to prescribe certain medications by the pharmaceutical companies and he stated that's how levo became the No1 prescription instead of NDT. Re NDT the BTA made False Statements about this very useful hormone replacement and they did not respond to Dr Lowe when he sent them the following Rebuttal. He requested a response every year for three years before his death but they never did respond. He would never prescribe levothyroxine - only NDT or T3 for patients who were resistant and who only recovered on T3 alone.
drlowe.com/thyroidscience/C...
I watched a documentary called Sick to Death and it talked a lot about how Big Pharma has come in and ruined what was a well working treatment plan. Do you use T3 exclusively or in combination?
I take T3 only. I've also tried combination but T3 only did the trick for me.
Same for me I've been on t3 only now for a couple years could not tolerate the levo even as a combination made me really ill I'm doing OK on the t3 only some days feel a little low but I'm doing well
It is amazing that when we are given the 'right' thyroid hormone replacement for us that we can recover our health.
I am shocked that the BTA et al have removed NDT (without notice) and causing extreme anxiety to people who were well upon it and considering it was the very original replacement from 1892 onwards. This Association sounds very harsh and thoughtless and it might benefit us, the patients, if those that make these decisions develop a dysfunctional thyroid gland themselves and do not improve on levothyroxine alone.
Hello Shaws good evening interesting read thank you. Dr Lowe was a pioneer and godsend before his unfortunate death.
Afraid that the link is not working - other replies obviously suggest it was working. 
Edited:
Working now! 
Thanks Shaws......after Dr Skinner who literally save my life, Dr Lowe was my go to. Both sadly missed.
The wrecking of ndts is scary at the mo.......am still wondering which one to go to next as Acella's NP has been hit. Is this big pharma at work too?
Try chewing six or seven coriander seeds in the morning after brushing the teeth. This will help you to reduce your TSH
Hi, unfortunately i have only ever been offered levothyroxine in uk in my 52 years of being diagnosed at 6yrs old. Mostly i have been okay on it, but as ive never had the opportunity to take anything else its impossible to know if it would make a difference to my health. Also they dont test you properly over here either, so many people end up being told they are borderline but are suffering unecassarily due to there bodies trying to fight against an underactive or overactive thyroid gland. Its all about cutting costs im afraid and doctors being paid by pharmacy companies to use there products instead. Greed is the main reason for people suffering.
I m on a very low dose of levothyroxibe since 2015, 25mg. Doctors says my hypo is not a real issue, as values are within range, but since 2013 I haven’t been able to get pregnant again, I struggled to loose weight and I often have body aches.
I don’t know if this is due to levo thyroxine, but it looks like nobody really minds to investigate further...
Why don't you ask for a print out of your blood results & you can see for yourself what's been tested & where you are in the "range".. ThyroidUK recommends that folate, ferritin, vit B12 & vit d are tested also, they all need to be optimum not just in range..
I know, but here they only check t4 t3 and tsh..
marianna1978. I've looked at your Profile page but there's no history of your thyroid journey except your name.
A dose of 25mcg is far too low, in fact it is an incremental dose, i.e. we usually begin on 50mcg and thereafter 25mcg added until our TSH is 1 or lower .unless you're very frail with a heart disease.
The following sentence:-
"Doctor says my hypo is not a real issue, as values are within range, but since 2013 I haven’t been able to get pregnant again, I struggled to loose weight and I often have body aches".
We do not want 'within range'. We want optimum when diagnosed and given thyroid hormone replacement, usually levothyroxine. The aim is sufficient dose of levo and to have a TSH of 1 or lower and also the Free T4 and Free T3 have to be in the upper part of the ranges. I know your GP will probably not do the frees but it might be worthwhile getting a home Full Thyroid Blood test. These are postal tests, i.e. you receive a package with the instructions and make sure you're well-hydrated and they're finger pin-prick test, or the lab can make an arrangement for you.
It is common for women who're hypothyroid to have difficulty conceiving, or may have miscarriages.
Do you follow these steps when having a blood test:-
The very earliest blood draw, fasting (you can drink water) and allow 24 hour gap between last dose of levothyroxine and the test:-
I think I'd change the doctor if he/she was mine as the 'numbers' of your test seems to be the priority rather than your clinical symptoms. 50mcg is the usuall starting dose of levo with 25mcg increments every six weeks. It may be worthwhile getting a home blood test.
The fact that hypo females can have difficulty getting pregnant or may have a miscarriage, the doctor has to ensure the woman is on an optimum dose and everything else (vitamins/minerals) are also optimum.
Always get a print-out of your results, with the ranges for your own records as it makes it easier for members to respond re your results.
I'd advise the following and I will also state I'm not medically qualified but had to diagnose myself and by then my TSH was 100.
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
thyroiduk.org.uk/tuk/about_...
It seems to a majority on this forum that few doctors really know or understand how best to diagnose or treat those who've a problem with their thyroid hormones, so we have to learn ourselves with the help of members on the forum. Many who've
had similar experiences.
p.s. always get a print-out of your results with the ranges.
Thanks a lot, i will post my results, I had it done few months ago, and according to the GP and endocrinologist I will need to recheck in one year.. so frustrating
Put your results (with the ranges) onto a new post so that you'll get more fresh comments.
Looks like spam to me.
Agreed.
What looks like spam?
I have been on it for 9 months and seen huge benefits that NHS medicine has never helped. I didn't post anything on here until I was sure. I stopped taking it for a while to see, within about 3 weeks all my issues and bleeding from bowl and stomach started again. Gallstones flare up as well. So I don't think it's a spam thing.
In fact I have found my eyesight has actually improved since taking it, and my friend's father his cataract have disappeared since taking it. Remarkable. I have witnessed cancer patients cured and Also seen a growth the size of a golf Ball in somebody's neck disappeared completely.
It's up to you if you believe me, but I WILL continue taking it to be pain free and well. My thyroid levels have improved since taking it. I wonder if I will need to take thyroxine and wear glasses in a year or so.
I guess if you are thyroid hormone resistant you are resistant to Levo? So probably would do better with an alternative. We are all different, I feel many of us who are doing OK on Levo don't post much but find the presence of so much help and advice mostly reassuring.
The article is a bit long winded and difficult to follow.
Couldn't see any reference to FM and thyroid. Perhaps I'm being tired/blind.
Where do people buy T3 if it isn't prescribed on the NHS?
Fibrofoggy
We can't discuss where to source prescription only items without prescription on the forum. You can make a new thread to ask for information by private message. Your post will have replies turned off so that no information is posted on the forum but will stay visible and anyone who can help will respond by private message.
Thanks.
I don't want an exact supplier. I was simply curious to know how people sourced something that I assume pharmacies don't stock.
If people get it from the net, how do they know its contains what it claims and is of good quality?
Thank you for highlighting the article. Very interesting. From my own experience it’s taken 10-years to finally get help and the treatments I’m being offered seem to be working well - so far!
The help I’ve received from Imperial college london NHS has been systematic and thorough.
In my case my on- going symptoms have always correlated with my antibody levels. I have Graves’ disease and therefore elevated thyroid stimulating hormone antibodies but not TPO. My antibody levels have been brought down by taking an immunosuppressant. The treatment was kick started with high dose IV steroid infusions. All my ‘other’ symptoms - joint pains, brain fog, ‘depression’ and general malaise disappeared, almost immediately, and haven’t returned since taking immunosuppressants only. My treatment will last a year, then the hospital will review but most importantly the Drs listen to me and are guided by what I say in combination with lots of blood results. I am on levothyroxine only and it seems to be working well for me but it certainly didn’t when my antibody levels were sky-high.
I’m now working on writing to the newspapers and a complaint to Kingston hospital for their mismanagement over 10-years.
I think the biggest lesson for me has been how the disjointed and disconnected treatments offered by NHS contributed to ineffective treatment. Drs didn’t listen to me or communicate with each other, sending me round and round to a point of complete despair and sense of hopelessness. I am now hugely thankful to the dedicated medical team at imperial college and have told them their approach needs to be shared so it can be made available to others.
From helplessness to hopefulness 🙏.
I have Graves' disease and I am on my second remission now after a thyroid storm in July of last year. Why are you being given a imunosuppressant? I find that extreme for thyroid antibodies is there a reason for this? I have high thyroid antibodies which are 4000 but I feel fine at the moment and don't want to take anything that might suppress my immune system. I have just read your profile and see you have been given RAI which I have no intention of ever doing unless I get thyroid cancer. A friend of mines daughter who is early 30s has been told by her NHS consultant to have her thyroid removed because she is on block on replace and I have told her to join this site before she does anything that drastic. I know some people have no other choice but I will never kill my thyroid ever.
Hi Lora7again
My antibodies were at 0.6 when I 1st had Graves. After RAI they went to +40 and my Graves’ eye disease totally out of control. Thereafter the antibodies have only come down with IV steroid and now immunosuppressant. None of this would have been what I chose to do but unfortunately I didn’t know about ThyroidUk then and put my faith in my endocrinologist. I e since changed Dr, don’t masses of reading and am much better informed.
Obviously it’s impossible to say if my antibodies would have spiralled had I not had RAI but I firmly believe that was the cause. I would now say to anyone being recommended RAI to do lots of research.
With respect to the immunosuppressant it’s one given to people after a kidney transplant so it’s more about damping down self defence rather than generally suppressing my immune system. Hope that answers your query. 🙏
Hello Shaws,
I don’t know too much about Dr Lowe and his work but I will look up on your link. I had Total Thyroidectomy in early 2015 I have been on Levothyroxine 175mg. I did once mention T3 to my Doctor but was told NHS does not prescribe it. I’m doing ok and I have been well since my diagnosis and treatment of my SLE (Lupus) in later November 2015.
The fact that you feel well on your dose of levothyroxine shows that it is working for you. I have my thyroid gland and felt awful on levo.
I used to get T3 prescribed by GP and that's because the endocrinologist added it into a reduced T4. When I stopped T4 altogether the better I became.
When I first began adding T3 to T4, the change in my body was immense but they phoned me after the latest blood test (about 7 or 8 years ago) to stop taking T3. I refused so I had to reduce T4. I had no qualms about reducing T4 as I felt so unwell on it and had an immense change when some T3 was added. I then went onto T3 alone and sourced my own eventually.
Research has shown that many who've no thyroid gland feel better with a combination dose T4/T3.
Thank you for highlighting the article by Dr Lowe. I am a perfect example of T4 only being prescribed. I am now 80!, I know! and still trying to get it right. I was on levothyroxine only for over 40 years, following a partial thyroidectomy in the early 1970s. I really never felt well, always tired, which led to depression and anti-depressants. the usual symptoms were there on and off all those years, and although I suspected the thyroid, the information was just not available to work it out and my doctors always said my results were normal.
When the internet really got going, then I was able to see what the problem probably was.
Doctors of course, still not interested. So I obtained NDT myself and basically, it was like a miracle! Also, took recommended vitamins and minerals. All symptoms, including acute stiffness and painful joints (diagnosed as fibromialgia), and severe heartburn (capsules from the doctor), gradually disappeared. And the wonderful thing was that I felt good and comfortable inside. Thats the only way I can describe it. The forums and information online was a lifechanger, and I am so grateful.
I still try new ideas that could be helpful. and I am not perfectly superfit, but I am well and consider myself very lucky to have this information available.
Dr Lowe was so sensible and if only our medical practitioners would find time to re-assess this, it would help so many people still struggling.
I agree with you re doctors like Dr. Lowe, a humane doctor who wanted to relieve patients awful symptoms where levo wouldn't. We need more doctors like him who'll stand up and be counted. He also resigned his licence so that he couldn't be pursued for treating people instead of 'taking more notice of a blood test result' rather than relieving their clinical symptoms. He could still advise patients of the best way the could relieve their symptoms and get back to normal health.
I am glad you are now in good health and know what suits your body which permits you to have a healthy lifestyle.
The majority of doctors used to diagnose/treat patients as did Dr Lowe, but nowadays we've gone backwards, it seems to me. Also the majority of doctors are afraid of losing their livelihoods if they're caught prescribing anything other than levothyroxine despite knowing that T3 can help many patients even on a T3/T4 basis.
Thank you for this article - the problem is, like he says, the doctors being loyal to the drug companies and not the patients - I'm just shocked that despite all the evidence out there that patients cannot get the correct treatments here in the UK
Those doctors who are the 'top of the tree' regarding thyroid hormones seem to go 'off on their own journeys' with little thought to those patients who are relying upon them. They also restrict the prescribing of any other thyroid hormone replacements which may alleviate all of them in certain patients - if they were allowed a trial.
They have also made untruthful statements about a product used since 1892 still available today and from then on patients didn't die a horrible death. If patients want to trial it, they have to source it outside the NHS whereas it was the only replacement hormone before blood tests and levothyroxine became the standard, both of which give the manufacturers lots of profits. Plus the 'extras' which may be needed to try to control still remaining symptoms.
One of Thyroiduk's Advisers, before his untimely death, sent the following to those who should be better educated in symptoms and options in prescribing, and despite three yearly reminders before his untimely death they never did have the courtesy to respond - do they care at all about relieving clinical symptoms? It would seem not and the majority are males - would that make a difference as it is females who are the majority who have hypo.
drlowe.com/thyroidscience/C...
The following is by Dr Toft who had a change of mind and is also Physician to the Queen when she's in Scotland. Even this statement made no difference. So it would seem to be those 'at the top of the tree'also disregarded his comments and ability to make things easier for us, the patients.
tpauk.com/main/article/dr-a...
The Scottish Parliament has agreed that whatever thyroid hormone replacement that is needed to restore the patients' symptoms can be prescribed, be it NDT, T3 alone, or T3/T4.
A case was brought before them by Lorraine Cleaver:
thetimes.co.uk/article/thyr...
After she posted her story she was fortunate to have consulted the 'last man standing' i.e. Dr Gordon Skinner who was the doctor who saved her life - (for so doing and for his treatment of many other patients who sent 10,000 testimonials to the GMC when he was being tried for prescribing other than levothyroxine) he saved her life too and she's restored to good health.
It was unfortunate that Dr Skinner died through a heart attack - about 2 or 3 years ago and his staff - who loved him dearly and stated that everyday was a happy time working for him have collated all of their research and are hoping to publish when funds permit them to do so.
This is a story we see the world over, the need of the drugs companies to make them and their shareholders rich overrides the health of the nation.
I am medicated for Hypothyroidism, Heart disease (which I believe was caused by 30+ years of having an underactive thyroid but no treatment because I didnt fit their criteria yet) and now Fibromyalgia. I have very many life changing symptoms and the meds cause more damage. I have just gone a year without heart meds due to mess ups between doctors and cardiologists, relying on angina spray only for my unstable angina chest pains. I now have a new doctors surgery and the doctor is disgusted that I was left with no meds for all this time. He has prescribed more meds and more side effects, but in the past year I have had better health and fitness (apart from all over muscle and joint pain) without the medications, than in the past 4 years on medication. I personally think after my own research, that the statins are the cause of the pains, but because I have heart disease they won't consider anything else but loads more medication.
I know there must be better ways of preventing all these illnesses and helping people with them without all the expensive drugs with side effects. The last doctors wouldn't do blood tests for my thyroid, before reducing my thyroid meds to try and stop my pain, my Hypothyroidism just got worse. They then spent a year discussing this pain and trying things out before referring me to a Rheumatoligist (as requested by my original cardiologist in 2018 - a year previously, because I had raised inflamitory markers) but after waiting months for the appointment, it was cancelled by the hospital who told the doctor to consider Fibromyalgia - no tests were done for this but I am now attending a pain clinic over 100 miles away to be given more medications for pain relief under the diagnosis of Fibromyalgia.
What gets me is the cost to the NHS and patients to attend all these appointments with no improvement. The NHS in this area, now specify that medication cannot be prescribed any more if patients are able to buy it themselves. I get this and I am in favour of this as general everyday medications were being prescribed and patients were being charged the fee of £8.50-£9 for paracetamol and asprins etc where these could be purchased for pennies at the supermarket. But the Medications that are proved to improve peoples lives are not allowed to the people that need them, clearly because somebody somewhere isn't getting paid enough to supply them.
I'm sorry I could go on forever about this subject - If you ever have a campaign on to get the NHS and government to change their policies - I'm there !!!
Yours is indeed a very sorry story and unfortunately there are many on the forum who struggle.
The fact is that if we can read up about Fibromyalgia, why cannot they?
Thyroiduk.org.uk is trying to change attitudes of the medical profession towards those who have a dysfunctional thyroid gland, and you can become a member if you wish.
thyroiduk.org.uk/tuk/About_...
I am also very sorry reading your awful story. The problem is they cannot contemplate how very unwell we feel and that every day is such a struggle.
Once upon a time - all doctors knew the clinical symptoms of hypothyroid and we were prescribed NDT (in use since 1892) and it was gradually increased but False Statements were made about - it in order to get it withdrawn from being prescribed. Who are these people who have our lives in their hands, just seem to wash off their responsibilities.
Is it time an experiment was made and they had their thyroid glands removed?
Dear Shaws, I am impressed by your knowledge on thyroid resistance. I think I am one of those where only T3 helps me. I have tried every single configuration of hybrid ndt or t3/t4 but only pure T3 works for me. However, I feel better if I take one big dosage in one single dose instead of spreading out. My question for you is on dosage. What dosage have you seen that works best in resolving aches and pains? It seems like I need minimum 50mcg T3 only in one go to resolve my aches and pains. Please advise! Thank you
Dr John Lowe (RIP) was the expert on T3 and he would only prescribe NDT or T3 to patients who were 'resistant' to thyroid hormones.
I had an instant, positive, reaction to T3 in that it resolved all of the awful severe palpitations (that awakened me during the night when on T4 alone) and husband had to get small towels (frozen) from the freezer and I wrapped it around my neck whilst sipping ice-cold water and controlled my breathing to bring pulse down.
I was on 50mcg T3 but now take 25mcg - both doses helped me feel much better and on 25mcg alone I have no clinical symptoms. I have adjusted dose myself as I sourced my own T3 but now I've been diagnosed with an unusual autoimmune condition it has been represcribed.
50mcg of T3 may sound the same as 50mcg T4 but it isn't as T3 is the active thyroid hormone and 25mcg of T3 is the equivalent of 100mcg of T4. Keep in mind that I'm not medically qualified and it only by my own experience I can respond.
I am glad you feel much better and it is an immense relief when we do so.
LARYNGOPHARYNGEAL REFLUX A statement made by Dr John Lowe (RIP) that some members may find helpful and it will prove that the BTA
letter to prince charles for dr skinner. Please read and perhaps consider sending one of your own. I think it is an issue he would support.T3 -Induced Recovery from Fibromyalgia by a Hypothyroid Patient Resistant to T4 and Desiccated Thyroid
To those who remain ill, Thyroid Expert Dr.John Lowe says this about t4 and proper thyroid treatment..
