Doctors will have more lives to answer for in the next world than even we generals.
~Napoleon Bonaparte
Is it possible that what was already awful….can be MORE awful?? Apparently so in the UK (United Kingdom).
If you are a thyroid patient in the United Kingdom (UK), the absurdity is increasing, becry patients!
Absurdity Part One: Yes, like everywhere else, UK hypothyroid patients have been put on T4-only, aka Levothyroxine for decades with the idiotic expectation that it would convert to the amount of T3 one needs. It hasn’t for all too many.
But the absurdity deepened.
Absurdity Part Two: Next came the idiotic idea that a TSH lab test (a pituitary hormone, not a thyroid hormone) had to get over 10 before one would receive any treatment. Over 10? Really?? How many of us have had a TSH in the 2’s with raging hypothyroid symptoms! The answer: a lot. It’s NOT about pituitary hormone that LAGS behind what is going on.
Insanity Part Three: 2017 saw the worse become total insanity: the National Health Service (NHS) stating that T3 (the active thyroid hormone) has “little or no clinical value” thus removing the availability of liothyronine (T3-only) medication as an alternative or adjunct thyroid replacement therapy. And with that removal of T3 medication from the NHS, patients have watched doctors go absolutely loco, loopy and wacky.
A nightmarish example by UK hypothyroid patient Elaine, told to lower her T3
Here are her own words of what is happening to her:
I was on 55 mcg T3-only via the NHS for over 4 years (with some improvement, even if not optimal). But earlier this year, the new Endo who I saw for my osteoporosis diagnosis insisted that the osteo was in part caused by my suppressed TSH on the 55 mcg T3 (False. See below), and started me on (with my agreement) a mix of T4/T3 to be slowly introduced.
First I was on 25 mcg T4 (in July) and less T3 at 35 mcg.
Then was moved up to 50 mcg T4 and down to 25 mcg T3 after 2 months
Then I was moved up to 75 mcg T4 and down to 20 mcg T3.
Immediately with the last change, my immune system began to deteriorate and I got frequent colds, even though it was summer. This sickness issue has continued. My immune system was already precarious, but it worsened and I had immunoglobulin tests which confirmed this. I have low IgA and low IgG, but not low enough that they would refer me.
I then had 4 migraines in a week, rather than once a month as I had been doing.
So I have stopped the regime and backed the T4 down to 50 mcg and the T3 up to 25 mcg. The trouble is that it doesn’t feel like enough. My energy is flat and my joints are beginning to hurt. I have written to the Endo but I suspect that they will not agree with my reasons, and that I will be pressured to conform ‘for the sake of my bones’. But I cannot allow myself to become more ill just to suit their agenda. I was even told by the thyroid nurse that I would not feel as well on this regime!!!
I think ultimately I may be forced to treat myself to have any quality of life. I have begun to stockpile T3 which I have bought privately to prepare myself for this scenario. Not good, either way at any rate.
Why did Elaine get osteoporosis? Does a suppressed TSH equal bone loss??
Elaine’s osteoporosis may have had nothing to do with a suppressed TSH–the latter which is quite normal, with no issue, when one is on NDT (Natural Desiccated Thyroid) or T3. It is NOT the same as a suppressed TSH with Graves disease!!
In fact, when optimal on NDT or T3, which suppresses the TSH, patients have REPEATEDLY reported strengthen bones as revealed by testing, and/or a reversal of osteopenia.
Instead, Elaine was still hypothyroid.
The evidence? She had adrenal issues/low cortisol as proven by saliva testing. Finding oneself with low cortisol is COMMON for those who have been forced to live for conversion alone with Levo or Synthroid. And the side effect? Thyroid hormones like T3 don’t get to the cells well, and instead, start pooling high in the blood. She did find herself with a high free T3 long after she had taken her thyroid meds–too long after.
Bottom line, contrary to the suppressed TSH with Graves disease, it’s NOT a “suppressed TSH” from being on T3 which is causing bone problems. It’s about still being hypothyroid!
1) T3 regulates bone turnover and mineralization in adults. http://www.endocrine-abstracts.org/ea/0004/ea0004s5.htm
2) The skeleton is considered as a T3-target tissue https://www.karger.com/Article/PDF/345548
3) Thus, all the factors required for locally regulated T3 action, including thyroid hormone transporters, metabolizing enzymes and receptors, are present in cartilage and bone indicating the skeleton is a physiological target tissue for thyroid hormone throughout life https://www.karger.com/Article/PDF/345548
4) ….during bone formation, T3 stimulates osteoblast proliferation, differentiation and apoptosis, and increases the expression of osteocalcin, type 1 collagen, alkaline phosphatase, metalloproteins, IGF-1 and its receptor (IGF-1R). Subsequently, during bone resorption, T3 increases the expression of important differentiation factors of the osteoclast lineage such as interleukin 6 and prostaglandin E2 (5). Moreover, T3 acts in a synergistic manner with osteoclastogenic hormones such as parathyroid hormone (PTH) (9) and VD (10). It has also been demonstrated that T3 increases the expression of mRNA of the ligand of receptor activator of nuclear factor-κβ (RANKL) in the osteoblast, which activates RANK present in osteoclast precursors a key step in the osteoclastogenesis (7). http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-27302014000500452
5) Without sufficient T3, then, normal bone remodeling is disrupted, and bone resorption happens at a more rapid rate than bone building. The result: decreased bone density and osteoporosis. https://saveourbones.com/can-a-slow-thyroid-cause-low-bone-density/
And the above five examples only touch the surface of the information out there about T3 and your bones. Read this: https://stopthethyroidmadness.com/bones/
Bottom line, UK thyroid patients have it rough when their National Health Service has withdrawn the availability of T3 to patients who outright need this powerful thyroid hormone…and when doctors are clueless and push patients to lower the T3 they are already on…and to levels which do NOT work.
* See the April 2017 Guest Blog Post about the NHS stating that T3 has little or no clinical value: https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/
* Here’s why Levothyroxine has not worked as reported by millions of patients, whether from the beginning or the longer they stay on: https://stopthethyroidmadness.com/t4-only-meds-dont-work
* Here’s a UK-based facebook group attempting to fight for better treatment in the UK: https://www.facebook.com/groups/ITTCampaign/
* Are you a Hashimoto’s patient? Here are ten questions you need to ask yourself: https://stopthethyroidmadness.com/10-gut-health-questions/
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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22 Responses to “Can things get any crazier for UK Thyroid Patients? Apparently so. Horribly so.”
vooxxy
Yeah I’am very similar to this woman my oncologist took me off t3 60mg which i was doing so well on and swapped me dramatically to t4 what do you think happened. Exactly and now im suffering the consequences of this t4 t3 combo not working and of course what happened my adrenals got so drastically low and o whats that endos dont recognize adrenal fatigue?!
NHS is a joke ENDOS are a joke!
kaylee
Janie – hello long time no chat! Way back in 2000ish I found you and Mary Shomon and for years you helped me until I got as stable as I think is possible under my circumstances, thank you so much. My problem now is I’ve moved to France and found out that NDT is NOT sold here – what??? And that it is even illegal to bring it into the country, for a doc to prescribe it etc. Though I went to a doc here and he wrote a 3 mo. prescription for armour for me without blinking an eye – but did tell me I could not buy it here. So I have been trying to find it ever since and finally am in the process of ordering out of Belgium – but am told by a person on another blog to keep my mouth shut, that I should not post such information as it is all illegal – I said why would the doc have written it and the reply was – you think docs know what is and is not illegal? So I have a couple of questions that I am hoping you can answer since you seem to have info from around the world – first is it illegal in France for NDT? Second is there a better source for it – somewhere – I am going to pay €236.00 for a 3 month supply of ERFA and now have read on your blog that people are having trouble with it. But I was told Armour was REALLY expensive. Not sure if my ins. company is going to accept this and cover some of the cost or not. Any help from you or anyone in France would greatly be appreciated.
Sally Padgett
Just as they are doing with vitamin B12 injections too…
Ange
Am told today that my doctors practise is considering with drawing my prescription for ndt that I have been on for 10yrs! I am under a NHS Endocrinologist (a stipulation of my doctors general practise) who has endorsed this treatment but so far not been consulted over its withdrawal. In part this has all been hastened on by the fact Ive had to ask for a different ndt namely Acella NP as I am currently on WP which we all know is not currently being manufactured (no signs of it reappearing lol).
I am disgusted by the NHS. I went through a lengthy period trying to make levothyroxine work and all it did was to make me increasingly very very ill and requiring a host of other medications to offset all the symptoms of hypothyroidism that levothyroxine could not do. Next I was put onto a bit of Liothyroxine in addition to the levothyroxine. I improved on this combination but despite breaking up my dose of Liothyroxine into smaller ones to take through the day I found I got spikes and didnt feel even. Then came ndt…..& oh my what a contrast! No spikes and once I found the brand that suited me I finally started to recover. This process to get onto a ndt took six long years. Six years of ill health in which I nearly lost my job. I am not going back to that terrible world because of a certain Endocrinologists Body politics have combined with cost cutting NHS measures to prove a point to its hypothyroid patients. Namely that if one isnt well on levothyroxine we are mentally ill. Am outraged & furious and this is one patient who will not lie down and take it!!! Am rolling my cuffs up and am prepared to fight!!!
Janie Bowthorpe
Oh my gawd. To withdraw a medication which has improved lives worldwide is insane. We are behind your fight all the way.
Nevine
I would like to talk to you in regards to your book. What is the best way to contact you ?
Caroline Gilyeat
I live in the UK. I’ve been on T3 for many years and my GP still prescribes it for me. The chemist has never expressed a difficulty in obtaining it either.
Due to various recent (Atrial Fibrillation dx September 2016) health concerns I was referred to a consultant to review my complex medical problems. I had Thyca in 2006 and had my Thyroid removed and RAI in 2007. My TSH is undetectable and has been since being on my recent Thyroid meds (50mcg T4 and 60mcg T3) with low Free T4 and high Free T3. I think my GP gave into me because I begged her not to reduce the dose of my T3. However the consultant was concerned that most of my problems were due to being very Hyperthyroid. He referred me to the Endocrologists (after missing an appointment years ago…I was never sent another appointment) only to be told they would have nothing to do with my care while I was non compliant.
I am worried that it was the T3 that caused my AF….along with Mitral Regurgitation so I have recently stopped taking T4 and T3 and changed to NDT. When I feel I’m doing ok on it, I’ll let my GP know that’s what I want to do. Only I have no idea how much I should take and it worries me that I have no one managing my Thyca treatment.
KarenBates
I too have AF, I had a small stroke in 2015 and have since had an Ablation and my heart’s doing great. However, the thyroid is as bad as ever. I was told at the hospital that I was on too much thyroid medication and that it probably caused the AF. (This from an MD.) But since then I have felt pretty bad because my naturopath lowered my meds ( I had been on only T3-compounded). He put me on Nature-Throid and in the last year or so and I did feel it was the most even of any Thyroid meds I had ever taken. And I have been on them all, as I have been dealing with this for over 40 years. However, I really missed the T3 as I felt the best on it. He did add 5mcg of T3 about two months ago. I have another appointment in two weeks and I hope to get him to raise them both up. I am on 195 mg of Nature-Throid with the T3. My adrenals are pretty good and I am in the process of adding more Vitamin D and C.
I am so frustrated with my thyroid and 40 years of trying to get it right. I am afraid to bump up the meds too much for fear of making my AF bad again but I am getting old symptoms of low thyroid that I haven’t had in years!
KarenBates
Here are some recent labs. Free t4-1.04 range 0.93-1.70ng
T3 132 80-200ng
T4 Thyroxine 6.1 4.7-11.3ug
TSH 0.005 270-4.200ulU/ml
Janie Bowthorpe
It appears you did the total T3 instead of the free T3–correct? Not a good test, if so.
Janie Bowthorpe
KarenBates, doctors will say that based on a low TSH….the latter which is a very normal occurence on NDT or T3…and it does NOT cause adrenal fatigue. And doctors who lower your thyroid meds based on TSH are those we run, run, run from. Read https://stopthethyroidmadness.com/tsh-why-its-useless
sid palla
I’m a 65 years old hypothyroid female and i’ve been on LEVOTRIN (t4+t3) along 27 years and i´ve felt almost fine (but not excellent as when I took PROLOIDE, a NDT discontinued circa 1990). Two years ago I added 10mcg T3 at night and improved my sleep (despite the fact that my doctor did not agree)
Well, in november 2016 GlaxoSmithKline Argentina lab stopped selling Levotrin and T3. They say that they cannot get T3 anymore because of their supplier´s problem (i do not who they are). So just only T4, for everyone…
My doctor told me that no lab in the world synthesizes T3 anymore
I tried to get a similar formula of the hormones combination in Chile and I did but it was not easy because of the same problem, meaning T3 has been discontinued, apparently all around the world
I don´t know what to think about this, whom to trust
Is that true? Where to ask?
Do you have information?
Thanks in advance
Corina
T3 is vital to a lot of patients well being. I’d be a walking zombie without it. This is insane, i wish they would listen to the patients that have to live with this shit on a daily basis.
Elaine
I am the ‘Elaine’ in the article. There has been a further development from the NHS on my case. I had a very rapid reply regarding my recent letter to the Endocrinologist about being too ill on 75 T4 and 20 T3 to continue with it and telling them that I was backing down to 50 T4 and 25 T3 – reply not sent to me the patient, but to my GP, with a copy for me. Basically, they have just discharged me into the care of my GP but at least they haven’t told the GP to take me off T3 altogether which was my concern and seem prepared for me to stay on the 50 T4 and 25 T3.
Hopefully my GP (if history repeats itself) will be willing to leave me alone and do my own thing. She might be more concerned if she knew that I do not intend to stay on this dose though. My immune system has been horrible since July and I do not want to carry on like this feeling constantly ill with low grade colds or worse.
I will probably next drop back down to the 25mcg dose of T4 and maybe stay on that for now, and increase the T3. Eventually questions will be asked but I feel I need to try and get back to the state of health I had before my regime was changed. Of course they believe that they are helping me with regard to the osteoporosis, but whatever the reasons for that, I feel my quality of life has been put at risk over changing me back to T4 and reducing my T3.
Perhaps too I will need to try to address the adrenals issues which is a bit more complicated as I had already done my best to help that with the aid of herbal medicine and also more recently, natural progesterone, but perhaps it hasn’t been enough.
Janie Bowthorpe
Hi Elaine. More often than not, we have to give ourselves the cortisol our adrenals are not giving us in order for thyroid hormones to adequately get to the cells. And we treat based on saliva results not much older than 3 months.
Janie Bowthorpe
Understanding Chapter 6 in the revised STTM book is crucial…and it all applies to Adrenal Cortex as well.
Elaine
Thanks Janie. I had better have another adrenal saliva test done soon….. and buy the book! 🙂
Cate
Hi Elaine and company.
I’ve managed to head off serious thyroid complications by using ‘low and slow’ dosing of Lugol’s Iodine, plus a serious AIP diet and finally high dose vitamin C, also known as ascorbic acid, to heal my shaky adrenals over the last ten years.
The greatest help to me was stopping inflow of socially accepted poisons in to my body using diet templates such as Mark Sisson’s primal diet, Weston A. Price’s traditional diet, and AIP paleo, which I still use to this day.
The women at Iodine Workshop on facebook are magnificently knowledgeable on dosing with Lugol’s, and serious thyroid patients have come off meds completely by healing themselves with it.
High dosing therapeutic use of vitamin C was taught to me by a similar group to heal my adrenals; on FB the name to look up is ‘Vitamin C and Orthomolecular Medicine for Optimal Health.’
Between these three protocols and using herbs/teas etc. within the traditional foods template, a body can heal itself of every modern disease. Probably all the old ones too.
Baghera
Please sign the petition to improve the standards of thyroid treatment in the UK. We need 100,000 of UK signatures to make sure this petition is discussed in the UK Parliament: https://www.change.org/p/itt-campaign-group-improve-thyroid-treatment-for-millions-of-people-stop-the-withdrawal-of-t3
Tracey Case
General Practice doctors have no idea how thyroid hormones work. You woul expect endocrine specialists to know better, but they don’t. I’m taking 37.5mcg T3 (split 3 doses) and half a grain NDT. I have no thyroid. I am homozygous DIO2. Last endo visit:
“You look well…how are you feeling?”
“Great, thanks”
“I’m concerned about the amount of T3 you’re taking…your TSH is almost non existent”
“I have no thyroid…why should I have larger amounts of TSH. My TSH is suppressed because I’m takin T3. What is my FT3 result?”
“Upper end of normal”
“That’s where it’s supposed to be isn’t it?”
“Well, yes…but I’ve never seen a patient taking as much T3 as you. I think you should reduce your dose”
“But I feel well, and my blood tests are normal for someone taking T3”
He the went on to take my pulse a couple of times and declare that it was normal. Asked me to extend my arms a couple of times and declare that there was no tremor. Checked my skin and declare that was normal too.
I felt like a walking miracle. I think he expected me to have a heart attack or something during the appointment.
That is how much they understand!!
Donna Grant
The Endocrinology Profession is to blame for the MESS that is Thyroid treatment. ” THEY” , make these recommendations and write the Guidelines. ” THEY ” are the biggest barrier to better Thyroid treatment.
Continuing with the Status Quo, year after year after year. Both with the material taught in medical school, and the very flawed recommended Guidelines for bloodwork and treatments.
Our treatment in CANADA is not any better.
The makers of T4 rock the Endocrinology cradle.
T4 only medication AND The TSH test , both have failed miserably.
Treating EVERY TYPE of Hypothyroidism, with the exact same guidelines.
1) Hypothyroidism caused by a slow functioning thyroid( a Hormone Production problem)
2) Hypothyroidism caused by a Hormone ” conversion ” problem.
3) Hypothyroidism caused by Thyroidectomy
4) Hypothyroidism caused by Radioactive Iodine treatment (RAI)
5) Hypothyroidism caused by an Autoimmune disorder.
Lets treat them all exactly the same , even though they each have different causes.
The Endocrinology Profession needs to be brought before a THYROID COMMISSION which should be formed to investigate the mounting problems with thyroid patients and years of gathered data.
The Endocrinology Profession must be changed.
Pat Davenoort
Three years ago when I first went to my newest doctor I knew that she only prescribed t4 but I liked how she listened. She spent 3 hours just transcribing my medical records and asking questions. When she saw how well I was doing she started taking an NDT too!