Feel better on T4 than ndt? - From SSTM

[shaws]

This is a new post from Stopthethyroidmadness.

stopthethyroidmadness.com/2...

[diogenes Remembering]

Too simplistic! Many people get along perfectly well with T4 only. Some of those think they do, but could do better with different therapy. I don't like the implication here that T4 only is never adequate. That simply does not fly!

[bantam12]

Shaws this was posted the other day and it still really annoys me ! Levo bashing again !!

[shaws Administrator in reply to bantam12]

i didn't see it posted and I do know millions take levo and who aren't looking for advice on forums.

[Hidden in reply to shaws]

Yes I agree I read this the other day. I was unlucky on Levo but thousands I am sure are fine on it but of course why would they be on a help site.

[Clutter]

Shaws,

I think it is extremely patronising of STTM to tell people that they are wrong when they say they feel better on Levothyroxine than NDT. NDT does NOT suit everyone.

[shaws Administrator in reply to Clutter]

I know that as I have gone the rounds with all variations of thyroid hormones.

[weescone in reply to Clutter]

I presumed I’d be ‘well’ on NDT. I ended up not. I’ve been questioning myself the whole time. STTM by my side I thought I’d be well.. 😕

[Clutter in reply to weescone]

Weescone,

How many brands did you try? STTM fora don't seem very interested in people who don't do well on NDT.

[weescone in reply to Clutter]

I tried Nature Throid, thats all. Initially I was on Levo, then endo added T3 into me mix. To be honest the T3 sent me loopy. Heart & head all over the place, til it settled down. However I don’t know for sure but, the T3 seemed to highlight other issues I hadn’t noticed so much before.. so, thinking of when I go back to Levo, come off T3 also

[shaws Administrator in reply to weescone]

All our vitamins/minerals have to be optimum too and I think many doctors ignore this fact.

[weescone in reply to shaws]

You’re right there. He tested my Thyroid TSH, FT3 & FT4. But nothing else

[Hidden in reply to shaws]

When I was on Levo and posted on this site I was informed regarding my vitamins/minerals. It turns out that all of these were optimal with no gut problems either but I still couldn't tolerate Levo nor can my sister or niece. Not allergic to any fillers etc,etc, either.

It would be good to find out why? Perhaps we will never know.

[shaws Administrator in reply to Hidden]

I, too, cannot tolerate levo but it took a long time plus trying other options (which we have to do on our own) before finding a solution for myself

[babsi in reply to Hidden]

Fillers are more important then you might think. French Levothyrox (Merck) has changed it´s formula in March 2017. Without telling anyone. There are thousands in distress because of it. Tuesday will be a big reunion in Bordeaux.Class action lawsuits are being prepared by Christophe Leguevaques. Check him out.

[Hidden in reply to babsi]

I was already off the Levo before it changed. I know that lots of people on here have problems with fillers etc. I am sorry to hear that people are ill. I will check out Christophe Leguevaques. Thank you.

[Hidden in reply to babsi]

By the way my sister and niece plus myself are all in different countries but still cannot tolerate Levo of any make.

[shaws Administrator in reply to Hidden]

Our bodies react differently to different medications but regarding thyroid hormones despite the Associations insisting that levothyroxine is all we need, our bodies tell a different story and many cannot tolerate it. Myself included. So liistening to our bodies makes more sense.

[Hidden in reply to shaws]

I totally agree.

[Clutter in reply to weescone]

Weescone,

If NatureThroid didn't suit you could have tried other brands before deciding to go back to Levothroxine.

[weescone in reply to Clutter]

My source wasn’t keeping up with demand, and I left it late, hoping they’d restock..

[Clutter in reply to weescone]

Weescone,

There have been shortages of NatureThroid and WP but there are other brands of NDT available.

[weescone in reply to Clutter]

At one point there wasn’t anything. I contacted the company, and they said they were in the process of making some 1 grain. It’s all been too much effort and uncertainty.. really too much

[Clutter in reply to weescone]

Weescone,

Armour, Acella NP, Erfa, Thyroid-S and Thiroyd have all been available during RLC's shortages and NatureThroid 1 grain has been available for weeks and more recently 1.5 grains too.

[weescone in reply to Clutter]

I wish I knew where to get it from. I contacted the company when there was nothing listed at all, and they said they were working in getting some 1 grain Nature Throid out. But there was literally nothing left

[weescone in reply to Clutter]

Checked source now, still out

[shaws Administrator in reply to weescone]

Sometimes we have to try several NDTs - it's the same with levo - one make may not help.

[weescone in reply to shaws]

It was putting the fearin me too, not having reliable source for the NDT, ended up having to go back

[shaws Administrator in reply to weescone]

We have to be sure we have reliable sources of whatever we find the best for us as individuals otherwise it causes lots of anxiety especially if it dries up for one reason or another.

In the UK, we used to get NDT prescribed but, like ~T3, it was removed despite being in use for many years. Then the following was issued:-

thyroidscience.com/Criticis...

[Baobabs]

Personally I would like to see more research into how these various types of treatment work in the body. For example why do we still have no idea how much FT3 actually reaches our cells? Also if medics only test TSH there is no real knowing what is going on with FT3 and 4. I’m also rather hesitant on relying too much on how we feel. How we feel could be supported by so much more research evidence if some ‘body’ was of a mind to pursue it. Thyroid disease appears to be so shrouded in mystery we could all do with an improved dose of empirical evidence to support good feeling and wellbeing.

[shaws Administrator in reply to Baobabs]

As a start I think all Endocrinolgists should undergo proper training as some of the remarks they make to patients who are relying upon them to bring back some good health, is demoralising to the patient who feels they aren't being listened to and are struggling, many for years.

Patients are desperate and hoping against hope that the consultation will brighten their lives and the Endo will do everything in his/her power to resolve the clinical symptoms. Patients usually leave their consultation demoralised with no light in the horizon. After all we believe they have passed their exams and are qualified but many on the forum have been so disappointed.

In the UK they have been instructed to not prescribe T3 now when research by several researchers have proven that it can help enormously. Neither do they test the FT4 and FT3 which can show whether or not the patient is converting T4 to sufficient T3.

I can say that how we 'feel' is the best judge of whether or not the dose/hormones are optimum when all symptoms are resolved. Many doctors only look at the TSH and ignore/don't know any clinical symptoms. Symptoms are the reason we are diagnosed initially (or should be).

[shaws Administrator]

As a start I think all Endocrinolgists should undergo proper training as some of the remarks they make to patients who are relying upon them to bring back some good health, is demoralising to the patient who feels they aren't being listened to and are struggling, many for years. Patients are desperate and hoping against hope that the consultation will brighten their lives and the Endo will do everything in his/her power to resolve the clinical symptoms. Patients usually leave their consultation demoralised with no light in the horizon.

In the UK they have been instructed to not prescribe T3 now when research by several researchers have proven that it can help. Neither do they test the FT4 and FT3 which can show whether or not the patient is converting T4 to sufficient T3.

[weescone]

Yes, fully understood. I spent 2.5 years researching and reading. Went on NDT & T3. Ended up over loaded with info. Trying to balance a tightrope of ducks in a row constantly. Huge financial pay outs for private bloods, meds & vitamins etc.. no support from an Endo who refused to see me until I came off NDT, and still, feeling crap. And now I can’t get NDT I’m headed back to Levo. I’m lost at sea and am sure I’ll nefer find a way back. It’s just far to tiring and complicated. It got me 🙁

[helvella Administrator]

shaws,

"We all have had a tendency to believe that our doctors know what they are doing with NDT or T3."

Really? A classic Janie comment which is utterly belied by a huge number of posts here. I suggest the percentage who actually do fall into a tendency to believe is small. By far the majority of UK GPs have little to no understanding of desiccated thyroid or T3. Quite often they seem not to know of their existence.

[shaws Administrator in reply to helvella]

Yes, you are correct - especially by your last two sentences.

Some of our Endos or doctors have never heard of NDT or prescribing T3 either.

[Nanaedake]

I would like to see more research in particular areas too.

For example, I would like clarity of care for hypothyroidism minus antibodies and care of hypothyroidism plus antibodies and care of hypothyroidism after partial or total thyroidectomy.

At the moment the treatment and care of hypothyroidism are all lumped together but is it possible there are differences? For example, are those who've had surgery as prone to low vitamin levels and gut dysfunction as those with autoimmune conditions? How long does it take after thyroid surgery for the HPA axis to reset and how does this relate to symptoms? How does this compare to the response by the HPA axis in people who have autoimmune thyroiditis and gradually creep into hypothyroidism giving the body time to adjust? What does this mean for the type of care patients should be offered post thyroidectomy?

One difficulty for those who have thyroidectomy is that they have not previously experienced hypothyroid symptoms and are then put on a high dose of thyroid medication so it's impossible for the patient to work out what their symptoms mean. If doctors can't interpret symptoms and relate them to insufficient and too much medication then the patient has no means to work out the best course of action to resolve symptoms.

[Kell-E in reply to Nanaedake]

I was thinking along the same lines. There is such a disparity in conditions that they should be different disorders altogether. I have had a total thyroidectomy and almost everything printed is not dealing with that. So you constantly have to extrapolate to figure out what might work for you. Nice post!

[Nanaedake in reply to Kell-E]

I've had a partial thyroidectomy but am on high dose replacement. I've asked several doctors whether that means that my thyroid produces any thyroid hormone of it's own now and no one can tell me. I can't find any research. So, my question is, does a thyroid emit any T3 at all when on high dose replacement or is the patient reliant on the conversion process of T4 to T3 and nobody can tell me that either.

This seems to be very basic and essential knowledge to optimise treatment after thyroidectomy whether total or partial. Some doctors have told me my thyroid emits T3 but then they can't explain how that is the case when TSH is suppressed. Others have told me it does not so clearly they don't know. So, knowlege is zilch in both primary care and endocrinology. Doesn't give us much hope does it?

One doctor told me I couldn't have T3 because a partial thyroidectomy emits T3 but couldn't explain how, if it wasn't emitting any T4 of it's own, it could emit T3.

[Hidden in reply to Nanaedake]

It's harder for you no one can help with your questions it's easier for me I have no thyroid

[Kell-E in reply to Nanaedake]

I had one GP refuse to use iodine containing contrast for a CT scan because my TSH was suppressed and she didn't want me to have a thyroid storm. Um, I don't suppose that you can have a thyroid storm without a thyroid? Try to find that in writing. And of course, using plain logic would be unacceptable.

The other thing I have wondered about is binding proteins. Binding proteins fluctuate with estrogen. I have seen in writing that binding proteins don't matter much overall because if you have more then your free levels fall, your tsh rises, and your thyroid produces more hormone, making your free levels right again. Okay, but what if your are only taking pills? Again, dead silence.

You are kind of in no-man's-land with a partial thyroid. And then there are the people with central or secondary hypothyroidism...

[Hidden in reply to Kell-E]

Yes everyone is different I found it fairly easy after on 18 months I self medicated and am now well.

There are so many variables no wonder people find it hard, especially people with many other health issues.

It would be great to sort the differences out, but how?

[Kell-E in reply to Hidden]

I think we are sorting it out for the medical profession as we speak

[Hidden in reply to Kell-E]

I hope so!

[Hidden in reply to Nanaedake]

I am well after joining this site reading up and then testing and altering my medication myself with the help on here. I hardly had any care after my TT in France but the operation and surgeon were great, it was aftercare that was lacking.

I don't go to the Doctor or Endos now I just trust the people on the site.

[silverfox7]

I don't have antibodies and hence don't have many of the problems others do and it times I feel I have a different desease. Not complaining at all but maki g more divisions could have its pluses

[Nanaedake]

This has turned into a very interesting thread but raises more questions than it answers. I wonder if there is anyone we could address our questions to who could give us answers?

For me it highlights that medicine and science has given very little thought to hormonal health, which is a key factor in all women's health (that's half the world) since women's hormonal system is designed to be much more sensitive and adaptable than the male system in order to facilitate childbearing.

Of course it is a concern for men with hormonal imbalance too and it would be helpful to know what differences exist due to biology, which is yet another factor.

It seems health resources have been directed to critical care and diseases that dramatically shorten life whereas the fact people have had to live for years without any quality of life unnecessarily has been ignored. It certainly demands a more compassionate approach.

[shaws Administrator in reply to Nanaedake]

I agree very much with your comment. It seems to most of us on the forum that the Professionals know little other than prescribing levothyroxine plus other prescriptions for the symptoms. Also they tell us that our symptoms have nothing at all to do with hypothyroidism - that's because they know none of them in the first place so are given other prescriptions rather than an addition to the thyroid hormones preferably some T3.

[nightingale-56]

It all depends on the make of T4 that works,or doesn't, for me and my son. Norton Levothyroxine and Goldshield Eltroxin worked fine , with good blood levels and good blood pressure, blood glucose and temperature. Neither of us have been any good at all on generics (or any other makes) since 2010. I can't believe that we have both been allowed to suffer for this long, with GPs, Endos and Pharmacists all passing the buck to say that nothing is wrong. I hope they can sleep easy at night (or preferably not) knowing that they have ruined people's lives.

[shaws Administrator in reply to nightingale-56]

It is more than shocking but wholesale negligence and has shown up their complete ignorance and incompetence on the pretence of being doctors/endos. In the meantime people searching on the internet for solutions - that is not right. It may be fine to search your disease but we shouldn't be searching for a solution on how to get well and some sourcing their own hormones but, with regards to hypo etc we have to if we want to at least attempt to relieve disabling symptoms.

[nightingale-56 in reply to shaws]

I agree with all you have said about Doctors/Endos shaws . I only wish I could put it in the Court papers I am sending in at the moment, but don't think it would further my cause.

[shaws Administrator in reply to nightingale-56]

It might be if you include Dr Toft's article.

healthunlocked.com/thyroidu...

and the 'Frontiers of Endocrinology within the following link:

thyroiduk.org.uk/tuk/newspa...

[nightingale-56 in reply to shaws]

Thanks for suggesting that information shaws , but what I really need is information on depletion of vitamins and minerals by drugs. Just applying for Deputyship of Welfare for my son.

[shaws Administrator in reply to nightingale-56]

Maybe you'd have to search side effects of the particular drugs and how the vitamins/minerals are affected by them..

[nightingale-56 in reply to shaws]

Drugs.com used to be good, but not so now. Will have to search.

[nightingale-56]

shaws I found some good sites for nutrient depletion from medication and all the papers have gone off now. I will now try and append the sites:

Prescription Drug Depletion Chart

A Practical Guide to Avoiding Drug-Induced Nutrient Depletion/Nutrition Review

Clinical Management Series: Natural Medicines Comprehensive Database

Drug Nutrient DepletionChart

Hope these sites are useful for people.

[shaws Administrator in reply to nightingale-56]

Thanks for that nightingale-56 (you've been a busy bee right enough )

[nightingale-56 in reply to shaws]

Luckily, I found a bit of energy today and surprised myself with what I have achieved. Started Thybon Henning T4 six weeks ago and surprised myself with what I have achieved today.