Hi, I have been unwell for more than a decade (diagnosed and dumped onto the fibromyalgia shelf, which of course covers all health issues) but was diagnosed a year ago with hypothyroidism with a TSH of 39. The symptoms were always there, and I had asked for thyroid tests, and was told it was normal. I have now discovered I had a high TSH result of 6.8 way back in 2010 which was completely ignored even though I had classic thyroid symptoms.
I have been declining in health for over a decade but the last 3 years I have been getting worse progressively faster. I've been on Levothyroxine for a year now and have only got worse. I actually ended up begging my doctor to read up on a lot of the controversy concerning thyroid diagnosis and treatment and try to help me get NDT, even with a private prescription.
I gave her a copy of Dr John C Lowe's paper 'Stability, Effectiveness, and Safety of Desiccated Thyroid vs Levothyroxine: A Rebuttal to the British Thyroid Association', which she never looked at.
She did write to the endocrinologist about NDT; I had already warned her what the response was highly likely to be, but to be honest I certainly didn't predict what he had to say. I expected what he said about 'no evidence it is any better than Levothyroxine' and 'unlicensed', but what she took as the most important reason for not prescribing
NDT was the risk of virus transmission!
I am so disgusted that as far as I can see I am being denied medicine that might give me my life back, because of something that I can find no evidence of whatsoever.
But I thought I'd better check that I'm not missing something.
So I would really appreciate it if anyone can tell me how long NDT has been around and although probably highly unlikely, if there have been any cases of people catching virus from their meds please?
Thank you in advance.
Later Edit; I would like to apologise for writing this question and then not being around to answer the questions. I've been really unwell on top of the initial computer problem that stopped me in my tracks. Now I have a heap of things to catch up on. So I will come back to this very soon. Thank you for all the answers which I've not even managed to finish yet...
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Tismesue
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Hi there I'm new on here so I can't tell you about NDT etc but I was like you "everything's fine" including thyroid over the years.... how many thousands of people must get the same response! I can't imagine how ill you have felt with a TSH like that. I finally got tested for 14 different things recently and so many of them were not "normal". I am now addressing these things and I hope I will make a good recovery. I changed surgery recently after 20 years with the same one . My Endo has said BEFORE he meets me I will not be treated!! But a renal doc diagnosed sub-clinical hypothyroidism. I think that says it all. Started new Levo 50mcg 4 days ago. The members on this forum will be able to advise you about the viral issue. !! I was told I could get "heart rhythm problems" if I take Levo by the Endo by email to GP. It's just not acceptable denying people the correct treatment. my TSH is 4.25 and I felt ready to "keel over" so yours being 6.8 for all those years and then 39 must have been really hard to cope with. Is your TSH Much lower now?? Lots hugs xxx
My history is just like yours. My problems started also with "fibromyalgia" and I found out afterwards that my Tsh had been just under 4 at that time. I finally got a diagnosis of hypothyroidism when my Tsh was 35. Levo did help me initially though but they wouldn't go above a dose of 200mg before switching me to T4/T3 and then ndt because they couldn't get my Tsh to stay under 6. With hindsight though, I think the levo dose may just have been too low.
I have been taking ndt since 2009 and never once heard of any kind of viral transmission and have read an awful lot about ndt. It did cross my mind when armour was temporarily unavailable at the same time as the swine flu outbreak but it was not mentioned at all.
Claudia's mum, I think it's so sad that there are probably many people with undiagnosed thyroid problems that are living with a fibromyalgia diagnosis.
I have lost so much over the last decade, and can't help feeling a little bitter that it wasn't picked up when I had classic symptoms.
It worries me that there are so many people in the same position, and even if they got tested for hypothyroidism if their TSH is under 10! (in Uk) they may well be ignored as was mine. My doc has no idea and as my last test was TSH 9, she said it was subclinical levels so I should be ok. Shocking!
Thanks for your message Exhausted, sorry to hear you've been through the same kind of problems with your doctors, it's so hard dealing with all that on top of being unwell.
You ask if my TSH is lower now. My last test about 4 weeks ago was around TSH 9. I started at TSH 39, and due to lack of testing (my first test after starting treatment was 6 months later) resulting in over-medicating, it swung right down to TSH 0.09 . Then I requested tests every 6 weeks until I got my levels sorted, but still didn't get tested for another 3 months; in August this year it had gone back up to TSH 19.57! Then I did get a test 6 weeks later which put it at TSH 9 (I think).
My doc admits she knows very little about thyroid but has only just decided to refer me to the endocrinologist. (Looking forward to teaching him a thing or two lol)
However I have given up on them for now, as I have steadily got worse on Levothyroxine. I have decided to try NDT for myself and hopefully I will already know if it does work for me, by the time I get to see the endocrinologist. It will be interesting to see if they would then prescribe it for me, but if not, I will continue to self medicate. And please consider yourself hugged back.
Possibly it is connected to Swine flu virus? I don't know for sure, but a bit of googling has brought up a couple of articles dating back to outbreaks of swine flu in pigs and consumer fears about transmission. Dr John Lowe addressed this in an article in the journal Thyroid Science:
In that article Lowe mentions it is highly unlikely the virus could withstand the dessication process of NDT preparation, and no evidence of transmission had been found.
Also another more recent article (Mar 2016) talks about porcine epidemic diarrhea virus, but again mentions that the virus isn't transmitted via NDT
Frankly I think your Endo is using a scare-mongering tactic. If it were me I'd ask for actual academic articles to show that NDT does actually contain viable viruses, and proof of patient transmission. Don't try to make the claim without showing me the evidence!
I agree he could well be employing scare tactics, or even worse spouting his own ill informed personal opinions, and not expecting mere patients to question it.
There are hundreds of us on NDT and I've never heard of it transmitting viruses, sounds like an excuse to me! Still I'm sure admin will reply to you about that.
Have you had your thyroid antibodies tested? Like you I was left for years, then eventually was told I was hypothyroid and put on levothyroxine. YEARS later I discovered I had Hashimotos thyroditis (through private bloods) which is an auto immune disease.
I buy in my NDT <online>. It's improved my symptoms greatly.
Get your antibodies tested!
The fact that you mention fibromyalgia shouts at me.
Try going gluten free see if it helps as if you have Hashimotos it imperative to be gluten free. I also can't eat potato or tomato (nightshade group)
Potato makes my bones and joints hurt terribly. Huge difference when given up! I've gone from almost crying in pain walking up hill to hardly no pain at all and stomp up our hills now.
They've been poisoned by two fronts. Big pharma worried that Levothyroxine would lose it's billions of profit and some passionate non pork eating people, but it's rumour, rubbish and hearsay. This doctor is doing serious harm by believing in this mumbo jumbo. It's disgusting. I think you should complain officially. I think we should all complain officially in the same month, if the GMC received thousands of letters they might just start thinking and get out of their ivory tower. Gosh this makes me angry
I think the Guidelines of the BTA say that NDT isn't proportionate or some such thing. I'm going to have a look as I've not yet had time to read their 'new' guidelines. Here is an extract of what I've read in page and to me it is shocking as by now God knows where I'd be but am grateful to the Endo who added some T3 to T4 initially. From page 3 :-
L-T4 is the treatment of choice in hypothyroidism. The
goal of therapy is to restore physical and psychological well-
being and normalize serum TSH (Table 1).
•
The adequacy of therapy should be determined both by
clinical and biochemical assessment, and undertreatment and
overtreatment should be avoided due to their detrimental health
effects (Table 2).
•
There is insufficient evidence to recommend monitoring
serum T3 as a therapeutic target in hypothyroidism (Table 3).
•
A proportion of patients on L-T4 therapy have persistent
symptoms despite normal serum TSH levels. Such symptoms
should be acknowledged and alternative aetiologies sought
(Table 4).
•
There is insufficient evidence that combination therapy
with L-T4 and L-T3 therapy is superior to L-T4 monotherapy
(Table 5).
•
L-T4/L-T3 therapy may be considered as an ‘experimental
approach’ in compliant L-T4-treated hypothyroid patients who
have persistent complaints despite reference range serum TSH
values, provided they have received adequate chronic disease
support and associated autoimmune diseases have been ruled
out (ETA) (Table 5
–
6). There is currently insufficient evidence to support the routine use of such a trial of L-T4 and L-T3 out-side a ‘formal clinical trial or N of 1 trial’ (ATA) (Table 5).
•
Thyroid hormone therapy is not recommended in euthy-
roid individuals with (i) suggestive symptoms of hypothyroid-
ism, (ii) obesity, (iii) depression or (iv) urticaria (Table 7).
•
The routine use of thyroid extracts, L-T3 monotherapy,
As I thought the BTA have incorporated the ATA and ETA guidelines: i.e.
Summary of ETA and ATA guidelines
The key recommendations are summarized in Tables 1
– 10, and each Table addresses a relevant question reviewed in either or
both guidelines.
So worldwide there could well be a catastrophic backfire if patients then develop heart disease etc etc but it will be denied it was due to undertreatment of thyrod hormones as our TSH will probably be somewhere in the 'range' rather than 1 or below.
You asked how long NDT has been around. It has been around since the 1890s. Before NDT was developed there was no treatment for hypothyroidism and people died as a result, after years of dreadful health, both physical and mental.
But NDT changed that and gave people with hypothyroidism the chance to have a healthy life.
The credit is usually given to a man named George R. Murray. He started off by giving someone injections of sheep thyroid, but it quickly developed from there into the dessiccated thyroid pills that were used successfully for decades before levothyroxine was developed.
Regarding the transmission of disease from NDT... Does your doctor campaign against the eating of pork chops and sausages or is it just NDT that upsets her?
I've never come across it either. But it begs the question, how many products created by pharmaceutical companies are without risk to human health. And I would suggest the answer is "None of them".
I actually later remembered that the radio-active material used in the Shilling test (B12) became unavailable because of concerns over BSE. And has never returned to market.
If you're ever an inpatient you're likely to be swabbed for it. I tested positive, even though I was virtually vegetarian at the time. Unfortunately, MRSA is "out there", and has been for several years.
There is nothing wrong with well cooked pork or chicken for that matter which were also found to be full of nastys in supermarkets.
I wonder if he was reffering to some kind of prion like CJD there was a scare not long ago about human growth hormone type hormone replacements transmitting CJD. However I think these hormone came from extracts that originated in the brain of animals unlike thyroid hormones. Prion viruses are hard to kill and will survive an auto clave but we are not talking about brain tissue in NDT we are talking about a different part of the pig and so is bacon and sausages. I am happy to take my NDT and have never heard of CJD being present in pigs anyway. I was a bit concerned about taking NAX for a while as it contain pituitary which is a brain extract from cows. But the cows are from newzealand where they have never had CJD and the scare about this growth hormone arose when people became ill many years on from taking the hormone. It was taking many years ago before CJD or prion illnesses were heard of so little care would have been taken to make sure the heard stock from which the hormones came were clear etc. I would ask to see his evidence.
Hidden Human Growth Hormone came from the Pituitary Glands of Cadavers and was stopped in 1982 (I think). My son was on it from the age of 2.5 years until he reached 7 in 1982. A year later the synthetic form had been perfected and he was on this until the age of 19 when his full bone growth happened. HGH injections are now all synthetic.
As megarub says the CJD in 1990 was from cows fed in appropriately with the outcome of CJD in humans.
I think the people who had become ill had been treated a very long time ago, maybe hormones from cadavers as you say, I can just remmeber hearing about it and being concerned about taking NAX. I will look it up.
I have just look this up in NHS choices after googling cjd and human growth hormone. There was a bit of worry about people who had had the human growth hormone before 1985. It did come from cadavers as you said and it seems that unfortunately some people have had cjd as a result. CJD has been around for a very long time and I was nursing people with it in the 1980s. The cjd from inappropriatly fed cows is just one type. I think that after it was suspected that some people who had recieved human growth hormone became ill, it was advised that people who had received the non synthetic human growth hormone see their doctors so it might be worth looking this up yourself and maybe advising you son to discuss with GP. There was probably an infected batch at some point in history and some people have been very unlucky. I would imagine it would only have come from one cadaver so affected very few people. Hope this is not too worrying.
Hidden We were given very good information at the time and even joined a group of 'walking worried' who lodged their names with Lawyers in case CJD happened to occur. Some people who understood all about CJD got a certain amount of money for being walking worried, but as my son has special needs and would not understand what it meant exactly, then all we can do is wait and see. He is still eligible to claim if anything happens. The only thing bad at the moment is rubbish Levo and unfortunately we cannot claim anything for this! Thank you for finding out this information and for the most part we forget all about it and are more worried about the bad Levo when I know we have had better.
A rather poor Wikipedia entry states: "Desiccated Thyroid became a commercial treatment option in 1934 with Westhroid." en.wikipedia.org/wiki/Desic...
In the UK, the Burroughs Wellcome Company were producing desiccated sheep's thyroid "tabloids", in quantity from 1896. Tabloid was their trademarked name for a tablet, but it became a generic term for anything small, so they lost protection for the term.
Thyroid tabloids were first listed in the BMJ in 1893, in the "New preparations and inventions" column, ( archive.org/stream/b2045801... ) and Burroughs Wellcome would provide doctors with samples, in the hope of favourable write-ups.
The then Prince of Wales (later King Edward VII) was a user, losing two stones in weight. archive.org/stream/b2045801...
The Wellcome archives list correspondence from one of their travelling salesmen about Thyroid tabloids in 1901, so perhaps we can assume they were generally available by then.
Additional glandulars were later included in some preparations, see pages 23-26 (14-16 of the PDF): lib.uchicago.edu/ead/pdf/ce...
Probably starts with a 'V' and rhymes with Niagara!
At the end of the day, when doctors tut-tut at patients for going online and reading 'dodgy' articles about our treatment, perhaps they should be cautioned against doing the same, if they're going to pull tactics like that?
The earlier comment speculating about the CJD/prion possibility may be near the mark. In the UK in 1990s, farmers fed cattle food made from cattle and corrupted the food chain, with devastating impacts on livestock, and humans who were affected by eating this - IMO frankenstein - meat.
As the doc's comment was about a virus, I'd want to know
1. what virus?;
2. what evidence from what independent pee-reviewed research, carried out where, on whom and over what period to time?;
3. how reliable and valid - as research - is this science?
I doubt there is any science to support this ill-informed doc-quack comment, but the pharma industry use this schtick a lot to trash effective, 'natural' approaches to health generally, not only thyroid care.
I am so sorry you the OP are suffering like this. The problem as we all know is when you're feeling like **** you haven't got the strength to take these bully-doc-quacks on.
Tismesue, what a load of b*ll*cks this endo is spreading. helvella has investigated the many prescriptions written for NDTs on a named patient basis in the UK quite recently healthunlocked.com/thyroidu...
If it were dangerous do you think the US and Canadian pharmacopeia would list it for so many years ? Of course your misinformation spreading quack clearly knows better
Quite agree with @megarub many doctors will pull a face if you say you have researched on the internet but if they are going to believe statements like that about viruses then they should provide the supporting evidence. I would ask to see it and keep asking for an NDT trial - good luck though. I didn't even bother trying to ask for NDT because I knew, from my experience of my doctor, what the response would be so I am buying the one from Thailand and started it in August and am feeling better and better as the months go on. At some point I guess i will have to tell her!
Oh please!! My mother was put on Armour (only ndt available in 1958. She was on it for 30 years and was busy and energetic. She died of natural causes aged 87!! I rest my case. Armour has been recalled but so has levothyroxine. Nature Throid and West Throid never have been!!!
I have been on NDT for 15 years. I had already tried both T4 and T3 (well, T3 was successful, but I had terrible side effects!). I have had to buy my own, although I do now know a doctor who will prescribe (and supply) Erfa, but the cost is horrendous and I am fine on my Thai NDT.
The first thing is to try and persuade your doctor, who sounds quite amazingly open, to keep upping your medication until you feel better, or your FT3 tops the range by some margin. Most patients feel their best with TSH below 1, and FT3 and FT4 towards the top of the range.
If that doesn't work you could consider joining the ranks of self medicators. Its not without problems and risks, but for me gave me my life back, and I have learned to manage my doctors! I do live in fear of my supply drying up, though, and have about five year's worth in my freezer!
wanted to let you know that i found levo like a poison and nobody was listening to me for years . finally got T3 prescribed and just took that on it's own and a lot of lupus/hypo symptoms went away, haven't had to try NDT as felt well on t3 only and i can get the prescription! but would take it if t3 wasn't offered. I also found B12 (pernicious anemia) and folate low but above guidelines and supplementing this too has helped a lot with symptoms, although I have had to self prescribe and injected, no help from GP. Also Vit D and lots more, best wishes x
One of the popular NDTs has never, ever been recalled for inconsistencies but levo has quite a few times over the years leaving patients very unwell and probably told it was all in their mind as there was nothing wrong with levothyroxine.
In fact - extract:
Considering that Synthroid, the most widely used brand of thyroid medication, has been on the market for 46 years and is taken by eight million Americans, the action might seem odd. But it turns out that despite its long history and widespread use, Synthroid had never been approved by the F.D.A. The drug has had problems with potency, and the agency decided that it needed a formal evaluation.
I feel terrible if my tsh goes about 2 and best when it is between1-2 and the t3 needs to be in upper normal range and if on t4 only, you also need to test free t4....
many things can influence how well you feel on ndt or t4...
such as your levels of d3, iron ferritin, b12, they also can effect how you feel....
For me, i also had low progesterone, testosterone and estrogen ,and dhea as well so i was dragging myself to function....
a good dr can test all these thing or you can test your self with pullin gyour own blood test if you are really desperate and that is what i did.....and i then i took it to a bio identical dr that looks at everything /
when my tsh gets above 2.... feel so exhausted so i can not imagine how bad you feel but your vitamins need to be looked at bec they can effect how the medicine works.......it is so complex....reading every article you can find and books helps....and stop the thyroid madness online site and thyroid pharmacist site online has alot of helpful information.....you can not get too much information...i still do it bec soo many things effect other things.....and
you may want to check your adrenals with the 4 times a day saliva test...i just took that and bang...i had high and low cortisol...and was the reason i was feeling so weird...so i have to get more sleep and learn to relax......lol....
so many on here have such helpful advice and tips and that really helps me alot
I'm not sure what kind of NDT is available in the UK, but here in the States, Armour Thyroid (dessicated pig Thyroid glands) has been available for over 100 years. There is controversy among Dr.s here - and many efforts to thwart it's use, all unsuccessful so far. FDA has long approved this drug, and continues to receive consumer confirmation of it's effectiveness. One Dr., in trying to explain the controversy, said that some patients lack the digestive enzyme needed for effective dosage / constant delivery of effective dosage, hence Dr.s are loathe to get patients started on it, for fear of constant complaints / many return visits for fluctuating thyroid hormone levels.
As for the threat of virus - never heard of it. I have personally taken Armour Thyroid for over 30 years. It works great! With diet and vitamins, and anti-fungals, pro-biotics, sometimes I have been able to actually reduce dosage. So much better than Levothyroxine!!
I believe that anyone who has ever taken anti-biotics will have / has an auto-immune disorder (fibromyalgia, hashimotos, etc.). It follows then, that we can get out of this mess by reversing / correcting the gut imbalances created by the anti-biotics. (hence anti-fungals like Olive leaf extract, caprylic acid, etc.). Most of people over 40 also could use digestive enzymes - for the pig thyroid as well as for better digestion in general. (so much better than the purple pills!)
If Dr.s' refuse to listen to auto-immune patients / help them manage their disease in a personal preference way...then, patients must educate themselves / "heal thyself". Read all you can about "good gut bacteria" balance, and thyroid health.
Here is a website on NDT and how long it has been available: stopthethyroidmadness.com/n.... Happy healthy hunting to you!
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Thyroid or viral or life issues?!
