Help for people converting from T4 only (levothyroxine) to NDT

[Boon79]

I have been on 100mcg of levothyroxine for years and whilst some of my symptoms improved, I really wanted a better quality of life, as many do with hypothyroidism!

I've been scrolling the internet for conversions from levo to NDT as I've just made the switch, but I struggled to find anything helpful.

I've got to 1.25 grains of Thai Thiroyd over the past 2 weeks and many symptoms have improved apart from severe hip joint and back pain so I've been furiously searching the internet.

Ive come across a video on YouTube by Dr Weston Childs, a doctor who has treated many thyroid patients.

From vast experience, he suggests that:

50mcg levothyroxine equals 1 grain NDT

100mcg levothyroxine equals 2 grains NDT

and so on......

His advice is to start on 0.25 grains and up it by 0.25 every 10 days to 2 weeks until on the required dose.

I'll update this post in 4 weeks when I'm on 2 grains to hopefully tell you all that it's worked 😁

[helvella]

How much T2, T1 and calcitonin does desiccated thyroid contain?

Any that might exist is not controlled. Probably not even measured. There is very close to zero evidence that the amounts that might have been present in the original animal thyroids is both present in the final product, is capable of being absorbed and is in sufficient quantity to have any effect whatsoever.

[Boon79 in reply to helvella]

The T1 T2 for me personally is irrelevant. There are many glowing reviews for NDT and sadly here in the UK we only have TSH tested, and are sent on our not-so-merry way with levothyroxine.

At 39 years old I want to give NDT a try in the hope that 95% of my remaining symptoms vanish so that I can stop focusing on hypothyroidism and live the rest of my life.

Interestingly, about a month ago I received a pack from some clinical research body asking me to complete some forms and pass a pack to my GP the next time I get a blood test. Could it be that the NHS are realising that T4 isn't the best option?

[helvella in reply to Boon79]

I have no problem whatsoever with people taking desiccated thyroid, reporting their experiences of desiccated thyroid, and suggesting that others consider desiccated thyroid.

I am well aware that many do better on desiccated thyroid than the alternative medicines. (Though not everyone does.)

But if someone posts about its T2, T1 and calcitonin content, they should post some information (or links) to back that up. We see this claim repeatedly and, so far, no-one has provided adequate information. It does none of us any good to repeat claims which seem to be based on reasonable guesswork and supposition but have no evidence.

It would be interesting to know more about the clinical research body you mentioned. Do you have any more information available?

[Boon79 in reply to helvella]

I can't find the pack that I was sent unfortunately. I think I decided that if I was going to self medicate with NDT that it would be unfair to be part of it.

[shaws in reply to Boon79]

I hope so, now that the NHS have withdrawn T3 and it could be that those who had it prescribed have become quite ill now. Some bodies maybe not recover on levo alone. This is a link:-

verywellhealth.com/natural-...

[Parbrook in reply to shaws]

"the NHS have withdrawn T3"

Oh really?

As far as I know, CCGs are trying to stop Liothyronine being prescribed, but that is completely different from withdrawal by the NHS.

[shaws in reply to Parbrook]

Oh! really -YES and I am one who has been told by GP that T3 will no longer be prescribed. These are previous posts by many frantic members:

"Thyroid UK is a stakeholder of this consultation and will be attending meetings and participating in the consultation.

However, the first point we want to make is that CCGs across the UK have already decided that T3 should not be prescribed and have informed all surgeries and hospitals in their area to stop prescribing and withdraw T3 from patients who are already on it (which we consider unethical).

healthunlocked.com/search/p...

[Parbrook in reply to shaws]

The final decision to prescribe is with GPs.

In the case of Liothyronine, this now appears to be under the recommendation of an endocrinology consultant.

The following is an extract from the BMA on prescribing in general practice:

"Where a bulk switch is made at the request of the PCO or CCG they should provide adequate resources to facilitate the switch including the input of the pharmacy advisor and resources to inform patients of the change. Where it is reasonable to switch a patient then practices may agree to do so. However, GPs must always use their clinical judgement and, where they can make a clinical case for not switching a patient, they have every right to continue to prescribe as they feel is clinically appropriate. GPs continue to carry responsibility for their prescribing decisions."

[shaws in reply to Parbrook]

Well, mine made that decision despite knowing I was better on T3 than on levo. I think the above quote from the BMA may have been made after the uproar by many whose T3 was removed without warning or notice causing immense worry about their future lives.

[Boon79]

Thank you TheCat346. I assume from your post that you're on a similar journey?

I have 0 brain fog now and a lovely even mood since making the switch. I'm keeping my fingers crossed that NDT is the best option for me 🤞If the hip and back pain goes when I reach 2 grains, I'll literally jump for joy!

[shaws in reply to Boon79]

The following may be helpful. Copy and paste the tinyurls onto a new page. These are chapters from a book by a research scientist who was also an Adviser to TUK:-

tinyurl.com/ycxpz565

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

[Boon79 in reply to shaws]

Thank you for this information 😁

[shaws]

I am assuming because NDT is being made from pigs' thyroid glands and not other animals that it has to have some sort of consistency. The fact is that it was prescribed from 1892 up until the present but the NHS withdrew all NDTs instantly, despite people being well. They Authorities have never responded to this Statement by one of our Advisers. These are people who most probably have never had a dysfunctional thyroid gland and as has been stated previously elsewhere NDT was gradually phased out because doctors in other countries were paid to prescribe levo and gradually levo has become the most prescribed hormone replacement worldwide. (I am also not medically or scientifically qualified).

[Boon79 in reply to shaws]

As usual it all comes down to money 😡. It's a 'one size fits all' treatment offered by the NHS!

[Boon79]

Do you mind if I ask how many grains of NDT you take if you were on 200mcg of synthetic?

[shaws in reply to Boon79]

1 grain of NDT is said to be around 100mcg of levo. Obviously this is a rough idea as we, the patient, may absorb differently.

(I am not medically qualified and have hypothyroidism).

[Boon79 in reply to shaws]

Hi Shaws. Looking at the first post Iput on above, Dr Child's states that from experience he finds 1 grain to be the equivalent of 50mcg. By my experience so far, I tend to agree! I'm taking 1.25 grains and have hypo symptoms so will slowly make my way up to 2 grains as he recommends.

[shaws in reply to Boon79]

This is also a past post:-

healthunlocked.com/thyroidu...

[shaws in reply to Boon79]

I think it all depends on our personal metabolism as some people have to take very high doses to be well and others less. Dr Lowe only took a blood test for the very initial diagnosis and thereafter concentrated on titrating doses until patient was symptom-free and felt well.

He also concentrated on relief of clinical symptoms. That's how it was also done in the past before blood tests and levo were introduced. He was also a researcher/scientist.

Some need less. Some need more. Dr Lowe himself had Thyroid Hormone Resistance and took 150mcg of T3 daily in order that he could function and treat patients and do research. He was a critical analyst as well and could take apart others research and put together again.

web.archive.org/web/2010103...

There are other topics at the top of the page but it has now been archived due to Dr Lowe's death due to an accident.

[helvella]

Using logic without specific evidence would suggest:

Calcitonin is likely to be destroyed in the stomach;

The amounts of T2 and T1 will be very small, far less than the T4 and T3 content;

There is likely to be more DIT and MIT than T2 and T1.

Unless someone actually measures that amounts of T2, T1 and calcitonin in the products, and then measures whether they are absorbed and, hopefully, any effect that they have, we are just speculating.

[shaws]

I missed out link on comment below:

thyroidscience.com/Criticis...

[Boon79]

So it seems that 2 grains is probably the equivalent of 100mcg? But I guess we adjust to ourselves as individuals x

[helvella]

I don't think I have ever said that T2 is not important.

Both T3 and rT3 convert into T2 so it would be somewhat surprising if it were not important.

I was questioning how much is delivered by taking desiccated thyroid. How much is present, how much of that is actually absorbed, and how much of that gets to where it can be utilised.

My suspicion is that even if it is delivered, the amount will be so small as to be irrelevant.

Further, if someone is receiving adequate T4 and T3 levels, is there any evidence whatsoever that their T2 needs boosting? Individuals might not have sufficient T2 but can we assert that everyone who takes desiccated thyroid needs T2 (and T1) to be enhanced as well?

[helvella]

No, it isn't the only way to get T2 if you have no thyroid.

The vast majority of T2 comes from deiodination of T3 and rT3 within our bodies. The amount of T2 within a thyroid is low.

In years past, desiccated thyroid was assayed by iodine content. Though that has been supplanted by proper assays of T4 and T3, it certainly appeared there can't be much room for T2 and T1 when you have accounted for the MIT, DIT, T4 and T3 known to be present.

There is quite a lot of information about the importance of T2 and some discussion here:

frontiersin.org/articles/10...

You might notice that the amounts used in human experiments have been quite high - certainly way beyond the very few micrograms that could possibly be present in (some) desiccated thyroid.