NDT Thiroyd & stroke risk

[Print1972]

Hi. I friend of mine started using NDT Thiroyd. I myself use this. However, she saw her doctor, who told her to stop using it immediately, as taking Thiroyd greatly increased her chances of a stroke. Is this ignorance on the doctors part, or has anyone else been told if a possible risk?

[Peanut31]

Hi

The more experienced members will be along shortly, but what the GP has told her is a load of 💩.

He’s just not happy because she’s not on the synthetic medication Levothyroxine provided by the NHS.

NDT was used years ago before they brought out Levothyroxine.

I’m on NDT Thiroyd as well, and out of all the thyroid medication. I’m doing better on this.

I wouldn’t go back to Levothyroxine at all as I never felt well.

I’ve not told my GP yet I’m self medicating, but, when I do I’m not listening to a man that I see a few appointments a year if I’m lucky, that last only 10 minutes at a time.

Best Wishes

Peanut31

[MaisieGray]

Utter nonsense. Dried animal thyroid was introduced in the last decade of the 1800's as a treatment for hypothyroidism and stopped being used only when the synthetic form of thyroxine was developed, and untrue rumours were bandied about by people with a financial interest in damaging its reputation. Many people use NDTs happily and safely. It doesn't suit everyone, but neither does T4 and T3. Your friend might want to ask her Dr to provide evidence in the form of validated studies, to prove his assertion.

[Framboise]

This is rubbish! I was once told the same by an endo, but I don't know why they think this. Mine said he had a patient who hadn't listened to him when he asked her to lower her dose of NDT, she had had a stroke and then wished she had listened to him! I just smiled sweetly because it wasn't worth arguing with him about the various causes of stroke. He was the same endo who wanted me to lower my dose until my FT3 and FT4 were at the bottom of their ranges because he didn't understand a suppressed TSH, and was convinced the TSH level was more important than anything else.

Your friend's GP almost certainly doesn't understand what Thiroyd is, or its history, or how it affects TSH levels and isn't prepared to learn about it. It's not entirely his fault though because GPs are taught that TSH is the only test to use and that thyroxine is the only treatment, and even if they do research further they are discouraged from doing anything different.

I didn't listen to the endo I was going to. I found a much better one, who now prescribes NDT for me and in a higher dose than I used to take. When two such specialists with the same training treat so differently, it's little wonder that GPs don't know what to do and that patients are having to self treat.

[SmallBlueThing]

Probably based on this, from an NHS leaflet:

What are the risks of T3 treatment?

T3 is much shorter-acting than T4, so levels vary widely during the day, even in patients on multiple daily doses. It is difficult to replicate the natural balance of T4/T3 in the circulation using T4/T3 combination therapy, risking side-effects from slight over-treatment in the long term. These side-effects include atrial fibrillation (an erratic heart beat which increases the risk of stroke) and loss of bone strength (increasing the risk of osteoporosis and fractures). Patients who are trying for a baby should not take T3, as it does not cross the placenta, so it will not support the development of the baby during pregnancy.

[humanbean in reply to SmallBlueThing]

Patients who are trying for a baby should not take T3, as it does not cross the placenta, so it will not support the development of the baby during pregnancy.

I'm sure I read somewhere that the placenta converts T4 to T3 for the use of the baby. I don't have proof though. So why T3 is considered to be such a devil's potion for babies I really don't know. Babies in the womb aren't alien creatures. I would have expected them to need T3 just like children and adults do.

[Hidden in reply to humanbean]

Because if mum only has the T3 from the pills (ie, no T4) and it doesn't cross the placenta, bub is left without crucial thyroid hormones? That's my guess from what that says.

[SaffyElle in reply to Hidden]

Yep. Some studies think that a lack of those hormones can cause autism in babies.

[Chippysue in reply to SaffyElle]

I don’t think so but please share if you find a copy

[Chippysue in reply to humanbean]

Need to know more about this, imagine the young women who can only take t3 only ? So they cannot have a baby ?

[SaffyElle in reply to Chippysue]

sciencedaily.com/releases/2...

[Chippysue in reply to SaffyElle]

I cannot see any mention of t3?

[Hidden in reply to Chippysue]

No but it suggests that T4 is crucial for the developing baby. Though they need to measure T3 as well, really, to make the study worthwhile.

[humanbean in reply to SaffyElle]

Thanks for that article, I found it interesting.

[Hidden in reply to SmallBlueThing]

I'm in the U.S. and my Endo must subscribe to the same information....(I have no thyroid) this information is not true for everyone. I was told after a bone scan earlier this year that I have mild osteopenia and my Endo was positive that my thyroid medication was too high and that it needed to be reduced or my bones would turn to dust and I would get heart disease (nice support). I declined her offer to reduce my meds because I had bone scan in 2010 that showed mild osteopenia and the funny to this is I had a thyroid and was not on any type of thyroid medication in 2010....I asked her to explain that one....I was met with silence....I think these so called doctors like you to remain sick and will make up anything to accomplish this and are just lazy.

I always been a trusting person when it came to my medical but after losing my thyroid to cancer and the lack of compassion my Endos have had with me over these 2 long miserable years I question everything and hold my grounds when it comes to my medications ....the reality is this is my body this is my choice and feeling better now is my goal not my bones down the road.

[humanbean in reply to SmallBlueThing]

I just found this case study of a pregnant hypothyroid woman relying on T3 throughout two pregnancies and her children were absolutely fine :

endocrine-abstracts.org/ea/...

[Marz]

Strokes are linked to high Homocysteine levels - and present when B12 is low at a cellular level. Am guessing this GP won't know that either ... 😊

[Hidden in reply to Marz]

Oh how interesting. I have been reading about B12. It seems we have an epidemic of low B12 due at least partly to the push for less animal food in our diets. I hope there isn't an epidemic of strokes to follow.

[Marz in reply to Hidden]

Low B12 needs to be accompanied by raised Homocysteine to be a stroke risk. Rarely tested ...

[Hidden in reply to Marz]

Is the high homocysteine an issue if B12 is adequate?

[Marz in reply to Hidden]

Good question ! But how do we ascertain adequate ? Do you know your Homocysteine level ? If into double figures it could be an issue ... Also what blood tests have you had for B12 - and what were the results ?

[Hidden in reply to Marz]

Me? None, I currently have no concern about my b12 levels as I now eat enough meat to have adequate iron. I see a lot of young women eating poor diets (low in b12 and iron) though

[Hidden in reply to Hidden]

Enough meat being approx 2x the dietary guidelines

[Marz in reply to Hidden]

I see you post in the IBS Forum - so it could be that in spite of eating meat you may not be absorbing well - so testing could be worthwhile Are you aware where B12 is metabolised ? You need good acid levels to cleave the B12 from proteins in the stomach for it to safely proceed on its onward journey ...

Not sure why you think adequate iron fixes B12 ? ... perhaps I have mis-understood.

[Hidden in reply to Marz]

I was on my phone and my response was a bit too cryptic!!! Sorry!

It is just that foods that contain iron tend to be animal foods and they also contain B12. A dietitian looked at my food diary with regard to how much of each nutrient I was getting and pronounced it very good - only tweaked a few things and encouraged fat in my diet, but basically was pleased with how much nutrition I was getting.

Yes, poor absorbing is likely, in my case. We are all so different. I used to know a young woman who had to give blood several times a year to prevent her iron levels from becoming toxically high! And there was me, taking iron tablets to nudge mine up to adequate, lol. If only we could have split the difference!! I have now reached a point where my iron is optimal. Strong family history of low iron, some had regular iron injections/infusions/tablets and some of us now prefer to get it from food where we can. There is also, it turns out, a strong family history of IBS and celiac genetics (erk) so I'm in the process of following that up, but it is going to be a slow process. I also have a hideously slow metabolism (measured by that same dietitian) so that may complicate things further.

I will see if I can find the information about b12 but it won't be today. The gist was with the push toward more and more plant food, many more people are now becoming deficient in B12 as their stores run down. Also there is a vegetarian B12 supplement which is apparently a pseudo B12 - the body can't use it :(. If they're eating more plant food, there will be less bio-available iron too...

[Marz in reply to Hidden]

Check out yesterday's post by Heloise - she posted a link to an on-line series called Interconnected. Sounds as if it would be good for gut sufferers 😊 Starts today !

Have you tried Magnesium and VitC for gut motility ? Also good T3 levels may help. VitD is anti inflammatory.

I do not have a Terminal Ileum so I self inject B12 weekly ...

EDIT: interconnectedseries.com/st...

[jgelliss in reply to Marz]

Great Post Marz . I would also include B-6 and Folate to lower Homocysteine levels .

[Marz in reply to jgelliss]

Yes of course - hadn't quite got to the remedy bit. 😊 x. Thank you ...

[silverfox7]

I was actually started on NDT over thirty years ago which was unusual then but my GP had also just been diagnosed so we stared at the same time. We are both alive and well and he is 70-80 in age and I'm not far behind him. I didn't stay on it for long, about 3 years. The NHS imported it from Canada and a prolonged strike stopped it coming into the country. With three young energetic children I couldn't cope so tried Levo and was ok on it so continued but things went manic when menopausal so decided to go back to NDT though spent several years researching, asking questions etc before I made the change and I haven't looked back. Think I'm almost in my 4th year but always try to keep up to date with what's happening in the Thyroid world.

When I first started out we weren't told about how important vitamins and minerals are. Things have changed a lot since I was first diagnosed but most days apart from taking medication you wouldn't know I have a thyroid problem! Over the years I've learnt to listen to my body, got through radiotherapy for cancer, thankfully didn't need chemo and my glass is always half full, never half empty!

So look, listen and learn but above all ask questions from fellow sufferers. Some doctors come over as been arrogant or dismissive but I don't think anyone can fully understand how we can feel unless they have been diagnosed as well.

So why am I still looking forward to my daily post? Well if I can help anyone I shall. I haven't forgotten those early visits for tests when I felt like death warmed up and been told I was 'in range'. My present GP admits hasn't got a clue. I'm fine with that but I'm sure in 10 mins appointment time I could squeeze in a lot of info given the chance!

Sorry gone a bit off topic but it is important to keep as informed as we can and equally pass this info on where we can. GP's have a huge workload and can't be expected to know everything though I'm sure a lot miss the point and are trying to treat the individual symptoms instead so for that reason alone they should try to keep up. Onwards and upwards!

[SmallBlueThing]

Straining due to constipation is associated with a seven-fold increase in the risk of a brain bleed, for people with a brain aneurysm. Even with under-range TSH, I never had easy bowel movements when on T4 alone.

I'm never taking Indapamide again!

[Hillwoman in reply to SmallBlueThing]

Indapamide? I take that, because it's the only diuretic that's ever worked for my severe overall oedema (also tried elimination diets, etc.). I know some people experience nasty side effects, but I've been okay with it, as long as I replace electrolytes through the day.

What was your experience with it?

[SmallBlueThing in reply to Hillwoman]

Constipation with Indapamide -- almost suicidal. Serum urea went over-range, but GP unconcerned. Glad it's helpful and tolerable for you.

[Hillwoman in reply to SmallBlueThing]

Sorry to hear about the effects. Sounds awful.

[serenfach]

I seem to recall some research that showed single Thyroxine medication had an implication for bone loss. I mentioned this to my GP and he said "yes" but still wanted me just to take T4! Maybe someone here can remember the research?