Have had hypothyroid for a few years now due to radiation treatment I had 8 years ago for hodgkin's lymphoma. Was initially trying to manage with kelp and other thyroid boosting supplements but tsh was still rising. So I guess the radiation has damaged my thyroid hence why I am now on levothyroxine. However recent studies have suggested people on long term use of levothyroxine are at higher risk of all cancers.... wasn't aware of this FFS. Wondering if the NDT might have the same potential risks? But impossible to say as have not been any studies. However I want to try the NDT instead and wondering if possible to get it on NHS otherwise will cost a fortune and simply don't have the budget for it.... any help would be greatly appreciated.
Adam
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Adzman1994
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As SD has said, NDT is about impossible to get prescribed on the NHS. Getting T3 added can also have its issues but its a lot more doable.
Can you share with us your most recent test results with what time of day the test was and when you last took Levo before the test.
Have you had key vitamins tested yet? This is essential to many people feeling well.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Hi mate. Booked in for blood test assessing b vits and ferritin etc in feb so will let you know. last blood test though my tsh was 5.2 and free t4 around 13 I think. Increased dose to 75mcg of levo since. Have also always been symptomless for my hypo function even before starting levo when tsh was fluctuating between 5 and 12. obviously doesn't mean it isn't affecting me at some level not perceivable. Want to try NDT to regardless don't trust levo. Is t3 any better than levo do people think? less risk perhaps?
You have said that NDT is not sffordable but Levo + T3 is a much cheaper option at least. It doesn;t sound like you necessarily need it at this point as you have yet to optimise your Levo treatment and find out if you are conveting well.
Its quite likelythat all the studies havent been done yet so we dont have a full picture of why levo users might be at higher risk. It could alsobe that they arent on enough Levo for instance or they dont convert T4 to T3 well and would benefit from added T3.
Start a new post when you have your vitamin results.
Most of the NDT is still T4. I was put on Levothyroxine but never felt well on it . Oddly close relatives on it are absolutely fine. After three years I tried NDT in sheer desperation because I felt so awful and it improved matters very rapidly so I must have needed the T3 in it.
I noticed all the prescriptions for NDT on the nhs have suddenly disappeared from the dispensing data. The areas I remember were Wirral and SE London so if you’re in either of those areas it might be worth doing some digging. It’s probably been totally banned 🙄 patient choice is not an option for us we are dictated to by idiots from on high I’m afraid. Treated like children not adults able to decide for ourselves what thyroid hormone therapy suits us best ☹️
I’d try Levothyroxine and see if it suits you first you have away to go to be optimised (TSH 0.2-0.5, T4 and T3 in top 1/3 of range).
Jeez, this week keeps getting better and better! I had a quick look at the two studies on cancer link to long term use of levo, the earlier from Sweden (2020) and the second from Taiwan (2021). I need to have a proper read but even so, a few things strike me. The Swedish study claims a ‘slight’ connection, the Taiwan study ends by saying it’s a valuable treatment which should continue to be used.
I have never seen these studies before and as I say, I need to look a little further - I can’t see anything recent as yet, nor indeed any suggestions from medicine as to alternatives, if indeed they are needful - but I’m tired! Tomorrow!
You’re currently still only on 50mcg the standard STARTER dose Levo
Obviously you need to push GP for next increase to 75mcg
Retest again in another 2-3 months
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Yes am on 75mcg now. however want to try NDT to avoid future cancer risks being on levo longterm... will have to get private most prob but will still try gp / endocrinologist anyways....
It strikes me as feasible that levothyroxine does NOT in any way cause cancer.
But if someone is hypothyroid, especially if significantly so, then any cancer cells which exist might be slowed in their growth, albeit possibly only marginally.
Might be me being stupid but I cant see how in these studies of people on levo they can tell whether the cancer is due to the levo or due to being hypothyroid. especially when the care of hypothyroid patients is so poor. Are the people studied adequately treated or is just in range considered enough to rule out the illness and blame the treatment.
I thought having an autoimmune disease was linked with a higher risk of cancer and most people on levothyroxine will have Hashimotos. Plus the link with weight and people may be too tired to live the healthiest life. I understand why you’re concerned though.
I'm on NDT. Have been for 17yrs. I developed BC 11 years ago.....aggressive. I had full works. I've been in remission for nearly 10years. So NDT did not prevent me from developing BC. At the time an Endo I saw wanted to lower my thyroid hormones below range...she was aware of the T4 link to cancer......but did not explain it to me! My oncology team were horrified and ignored this and am glad they did. My oncology team wanted my thyroid hormones optimal.
I'm still on NDT..
It's more complex. And in the UK where the nhs has been wiping out the use of ndt it will be impossible to research if there is a difference in cancer rates between ndt and levothyroxine as there are very few patients left on nhs ndt.
Cancer is a complex subject and different forms behave in a different way. This is the case even under the umbrella term of breast cancer.
I'd want to see definitive proof that levothyroxine itself causes the problem or is it an imbalance because of conversion issues, consequences of hypothyroidism patients not being treated optimally, patirnts not being treated at subclinical stage earlier enough.........the consequences of both these factors leads patients to be over weight unable to exercise , higher incident rates of high BP, cholesterol rising.......alongside other signs of the body mot working well. And if the body isn't working well does it affect gene expression and incite cancer cells.
The Endocrinology fraternity have long abandoned looking at the consequences of lack of treatment or undertreatment. Alongside the inability to recognise poor converters. Instead have used terms such as Personality D when patients have ongoing symptoms.
So is it Levothyroxine or other factors like late diagnosis of hypothyroidism, poor treatment, etc.....
Excellent points made here. Some very knowledgeable cancer experts i have been following for years think theres a link.... seen many women with BC with longterm use of levo... but your right could.be due to improper.conversion or a whole range of separate factors. We just dont know. But are you saying your endo was aware of the link then? thats interesting...
This was an Endo I saw once . Her approach to thyroid treatment was to grossly under treat. She would've put me back into a hypothyroid state to then leave me to tackle aggressive breast cancer involving a long treatment plan and several.operations. It was madness!I didnt see her again.....went elsewhere..
I've seen 5 other Endocrinologists and it has never been mentioned.....but then I've been on ndt not levothyroxine.
Hypothyroidism is linked with increases of weight, cholesterol & blood pressure alongside low exercise tolerance....alongside other dysfunction such as hairless, cessation of menstrual cycle etc... Several of these factors are generically linked to increased risk of cancer without pre existing hypothyroidism.
So is it how the condition is treated causing the increased risk, the way the body metabolises a synthetic product or something else. It's a dont know. But a link is there.
It has long been the case that a lot of those taking desiccated thyroid find their own supply. Of them, all too many do not tell their GP or other healthcare people so records will be distorted.
Not meant to blame them, there are all too many reasons not to "admit" it, but to observe the issue.
True. Personally I've always informed my GP and the dosage am on. It's incase I'm ever admitted into hospital unable to manage my treatment myself. I've no idea what would happen now the clinical need is acknowledged and I remain under a nhs endo but the nhs are not supplying ndt. It's a scary thought. Sadly the nhs has created an underworld of hidden treatment by their long standing campaign to remove ndt and by their poor treatment of hypothyroidism.
This entrenched stance has got in the way of progressing and developing more knowledge, research and effective approaches to treatment especially for the poor converters.
Ideally, everyone would. It would be recorded, including changes in dose. Even if the doctor disagrees.
But if the reaction of a doctor is very negative, or even just expected to be so, like refusing further levothyroxine prescriptions and testing, it is so very obvious why many don't.
Indeed. As you say the consequence is that the true scale is unknown. Likewise how many are taking levo plus lio or lio plus Armour or even levo plus lio. Worse still it may be skewing research study results as they will be listed as levo only.....when maybe it's a concoction they take.
I also inform my GP and Hospital Endo, who is kindly keeping me under observation still, even though I obtain my NDT through a private Endo. I feel this keeps me in the loop in case I need operations at Hospital. The Endo is generally happy that I obtain my own NDT and I do have regular private blood tests, because I feel that NHS do not do thorough testing and only doing TSH is absolutely useless for me and my Son. I also give them copies of all my private blood tests. My private Endo has just taken it upon himself to contact my NHS Endo and GP and update them of his findings.
That's interesting. I didn't know you could have private & nhs endo together like that.. I'm still trying to get funding....as the nhs paid for it first 17yrs. However nhs england states that private treatment excludes you from nhs funding!! What a nonsense it all is!!! Sigh...
I'm not sure it is usual, but think my NHS Endo just likes to know how things are progressing for his own knowledge. I am not sure it is because he particularly likes me either, as have had pretty poor treatment from him in the past. He is also my Son's NHS Endo, so think he might like to keep me on side. I got told a straight NO when I asked about T3, so did not even bother asking about NDT. Far less hassle treating myself with the help of a good Private Endo, even if it is quite expensive. I just use Private Endo to obtain Private prescription.
Nightingale would you be ok to message me the name of your private endo.? Might be good back up for me....I'm currently under a nhs endo who support my ndt treatment but is out of area so can't give me a nhs script as his ICB won't allow it.
Trouble is once you tell them they blame every problem you get on it and it affects how you are treated because of their stupid prejudices. The last one told me to stop taking it - I said “What? And DIE!” I told him I had no thyroid function I was hypothyroid for life and needed thyroid hormone replacement therapy for life I’d been diagnosed and optimised by an endocrinologist on Levothyroxine but had not felt well on it and tried NDT and found it superior so took that instead. It’s as if I’d said nothing and was some loonie self medicating with no thyroid problems at all. Don’t these morons listen and take notes or read one’s history no they just make it up as they go along, so prejudiced against NDT they’d rather their patient died than take it . I’m refusing to have that stuffed dummy again. God knows what they’ve put on my notes - kill her off KHO
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How do I get my NDT on the NHS
I've been prescribed NDT! !
NDT should be prescribed on the NHS.
Is it the NDT (Thailand)
After years happily on 50mcg thyroxine is it possible dose needs altering?
