NDT - taking the plunge: Hi everyone I am... - Thyroid UK

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NDT - taking the plunge

Kel8 profile image
Kel8
20 Replies

Hi everyone

I am currently on 80mcg of T3 only (taken as 20mcg four times a day) and although I feel better than I did on Levo, I am finding the ups and downs throughout day to be difficult. I am also still exhausted and suffering from brain fog!

I have decided to take the plunge with NDT as my Endo said he will supervise me on it by seeing me every six months. My question is, how many grains would I start with? I am considering WP Thyroid.

Any advice would be appreciated!

Thank you :-)

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Kel8 profile image
Kel8
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20 Replies

25 mcg of T3 is roughly equivalent to 1 grain.

Kel8 profile image
Kel8 in reply to

Thank you

Kel8 - have you considered taking your T3 just once or twice daily? Dr Lowe took his large dose once daily.

Kel8 profile image
Kel8 in reply to

I have never thought of this as my Endo recommended spacing it out during the day according to when I felt most tired. Could be worth a try. Thank you.

shaws profile image
shawsAdministrator

There is no history in your Profile of your thyroid problems.

I would suggest you try taking a reduced T3 in one daily dose and I'll give you a link to read. This doctor (now deceased) only prescribed T3 or NDT and for T3 this was his recommendation:-

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

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

Two excerpts from above:-

Second, I don't believe that "cycling" is a valid concept. Over the years, I've monitored scores of fibromyalgia patients who reduced their dosages after improving with the use of T3 (within the context of our entire protocol). Invariably, their symptoms and signs soon became as intense as before they had improved. When they increased their dosages again, they improved again. And once more, when they again reduced their dosages, their symptoms and signs intensified. In many cases, the patient's status worsened after a minor dosage decrease, and improved after a minor increase. The blinded controlled studies we have conducted of fibromyalgia patients taking T3 have involved "cross-overs." This means that without the researchers or patients knowing when, the patients were switched from T3 to placebos and back again. The studies showed clearly that in general, when patients were taking T3, their status improved, and when taking placebos, their status worsened.

These clinical and experimental findings argue against that idea of "cycling" enabling patients to maintain improvement after stopping their use of T3. With increases and decreases in dosage, the only thing that has cycled in our patients is their fibromyalgia status. So, do I believe that "cycling" will "cure" cellular resistance to thyroid hormone? Unequivocally, no!

and

Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

Kel8 profile image
Kel8 in reply toshaws

Thanks Shaws. I did have a profile at one point so not sure where that went! I have updated it now. My Endo recommended spacing out my dosage as I feel more tired and symptomatic at certain points during the day. I know when I need a dose as I get heart palpitations (a hypo symptom for me). The idea of one dose a day is interesting though and could be worth a try I guess as I am lucky enough to be getting T3 prescribed.

The article you gave also mentioned Propanolol and I do take this for migraine prevention. I have asked the Endo about it many times and he doesn't seem to think it matters that I take it with thyroid meds. It's so hard to get clear answers and help!

Thanks again.

shaws profile image
shawsAdministrator in reply toKel8

I take my dose once daily of T3. I am well, thankfully and have no problems now. I don't have to watch the clock to take T3 at intervals, avoid food, drinks etc. Some Endos believe T3 has a 'short' life (it does go into our bloodstream quickly, unlike T4,) but Dr Lowe, being a scientist, has said that T3 has to saturate our cells first and then its work begins for that one dose between 1 and 3 days. He himself took 150mcg of T3 in the middle of the night as he was Thyroid Hormone Resistant.

He also said that food etc interfered with the uptake of thyroid hormones and that it was difficult to find a 'window' where to fit in eating/etc and doses.

:)

Everyone

Kel8 profile image
Kel8 in reply toshaws

I am so glad that you are doing well now. It is very tricky with the multiple dosing as i forget and then take it too near to food etc. Dr Lowe sounds spot on to me. I will give it a go as nothing to lose.

shaws profile image
shawsAdministrator in reply toKel8

It is preferable one daily dose, as you say, it is very easy to forget and you cannot really be consistent.

I'm like you - heart lets me know when dose is due.

I assume you gradually were increased onto T3.

The idea of titrating the dose is good as, if we start on 20mcg or (25mcg) after two weeks increase by 1/4 dose and so on until we either feel well or palps begin, or pulse is too fast or we feel to hot, we step back to the previous dose. This should be our optimum dose. I found when on NDT because I felt I needed 'just a little' more, in fact it was 'little' too much.

If you have to take a very high dose to achieve 'normality' and relieve all symptoms it might mean you are thyroid hormone resistant.

Bearing in mind I am not medically qualified but with my single dose I feel 'free' if you like as I feel normal health and have energy and carries me through 24 hours.

:)

Kel8 profile image
Kel8 in reply toshaws

I dream of having normal health and energy! It's amazing that a small thing makes such a difference.

Yes, T3 was added to my Levo 20mcg at a time. Eventually I was on 100 mcg Levo and 60mcg T3. Still symptomatic so Endo suggested I try T3 only before the NDT route.

Thanks so much for your help.

Naomi8 profile image
Naomi8 in reply toKel8

Do you take Propanolol daily?My understanding is that beta blockers are antagonistic in effect to thyroid replacement therapy.I was told years ago by a well informed fellow hypothyroid sufferer that people who are hypothyroid should not use beta blockers.

I not been told this by any medical doctor.

I keep a supply for use in case of a panic attack,or if I take too much T3,but I only take perhaps 2 or 3 doses a year

Kel8 profile image
Kel8 in reply toNaomi8

This makes absolute sense to me as aren't people who are hyper given them?

i actually take 80mg in a slow release capsule daily and have done for years. I must admit that I am scared of stopping them as they are the only thing that control my absolutely debilitating migraines. That could be the key to why no thyroid meds seem to work for me though :-(

Naomi8 profile image
Naomi8 in reply toKel8

I think it is worth further investigation,but I have not been impressed with the doctors I have raised the issue with.They don't seem to do joined up thinking.I am very sorry to hear you have been suffering from awful migraines for a long time & that this is the only treatment you have found effective.

best wishes

Kel8 profile image
Kel8 in reply toNaomi8

Ah, thank you. Yes, the joined up thinking is very lacking!

Best wishes to you too.

shaws profile image
shawsAdministrator in reply toNaomi8

This is an excerpt, and you are correct about beta-blockers:

Beta blockers may decrease the peripheral conversion of levothyroxine to triiodothyronine. Oestrogen, oestrogen containing product (including hormone replacement therapy)and oral contraceptives may increase the requirement of thyroid therapy dosage. Conversely, androgens and corticosteroids may decrease serum concentrations of Levothyroxine-binding globulins.

A number of drugs may affect thyroid function tests and this should be borne in mind when monitoring a patient on levothyroxine therapy.

medicines.org.uk/emc/medici...

Contraindications with liothyronine surprised me:

chealth.canoe.com/drug/getd...

Naomi8 profile image
Naomi8 in reply toshaws

When I have requested beta blockers from 2 previous GPs before I moved,neither of them raised the issue of contra-indication

shaws profile image
shawsAdministrator in reply toNaomi8

I doubt they are aware - if we complain of palps that will be the prescription.

Naomi8 profile image
Naomi8 in reply toshaws

When I saw the heart consultant after being kept in overnight after going to A&E(Taking T3 3x5mcgs for 3 days triggered palpitations which wouldn't stop)After all the tests confirmed supraventricular tachycardia,not the dreaded atrial fibrillation,he told me beta-blockers were not of any use for my diagnosis.He knew his stuff!I didn't tell anyone I had just started on T3.Re started T3 after the all-clear & a few weeks later.Now my attacks of S.T are far less frequent than on thyroxine and resolve quickly(usually indigestion)The consultant advised ablation for a congenital heart defect causing an electrical issue.Hmm...

Ectopic beats very rare now.Very frequent with T4.

Kel, you might find this link/information helpful and explains the transition from T3 to NDT

stopthethyroidmadness.com/t...

Kel8 profile image
Kel8 in reply to

That is fantastic - so helpful. Thanks so much Melanie :-)

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