Ndt: Hi where can I buy ndt without private or... - Thyroid UK

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carroll998 profile image
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Hi where can I buy ndt without private or nhs prescription please and if I take 125mg of thyroxine a day how much ndt would I neex to take a day. My tsh is higher end of normal but my t3 always at lower end or just below normal. Unable to loose weight and feel tired easily. Please pm only . Thank you in advance

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SlowDragon profile image
SlowDragonAdministrator

If your TSH is at higher end of normal you need dose increase in Levothyroxine

Can you add the actual results and ranges on latest results

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many people need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if FT3 is low

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Getting vitamins optimal is likely essential before trying NDT

And getting Levothyroxine dose high enough to bring TSH down to around one and FT4 in top third of range and FT3 at least half way in range

After total thyroidectomy its likely you will need some T3 ....wether you add T3 or try NDT

carroll998 profile image
carroll998 in reply toSlowDragon

Hi sorry should have said t4 always at higher end tsh at lower and t3 at lower if not below

carroll998 profile image
carroll998 in reply toSlowDragon

My bloods ie vit d, ferritin are all good. Am on vit d3, Magnesium for hypoparathyroiism and calcium since my total thyroid removal 2 years ago. Here are the bloods and ranges you asked for tsh 0.12 range 0.05 to 4.4, ft3 3.8 range 3.5 to 6.5, ft4 18.2 range 10 to 20.0

SlowDragon profile image
SlowDragonAdministrator in reply tocarroll998

So you either need to try increase in Levothyroxine that will take you over range FT4 and see if FT3 improves

Or try adding small dose of T3 or try NDT

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctort

please email Dionne at

tukadmin@thyroiduk.org

Also ask Dionne for list of recommended thyroid specialists endocrinologist who prescribe T3 or NDT

Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Optimal Vitamins

Vitamin D at least around 80nmol and around 100nmol may be better

B12 and folate near top,of range

Ferritin at least half way in range

carroll998 profile image
carroll998 in reply toSlowDragon

Hi thank you so much my b12 and vit d is spot on my ferritin always low does not improve even tho I take iron pills. Interesting to know I can increase my thyroxine level tho once again thank you 😊

carroll998 profile image
carroll998 in reply toSlowDragon

Oops tsh range 0.50 to 4.4

pennyannie profile image
pennyannie

Hello Carroll

Just as a point of reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.

The body runs on T3 and has to be able to convert the prohormone T4 into T3 and conversion can be compromised if vitamins and minerals are not optimal.

Personally I think if there has been a medical intervention and the thyroid surgically removed or ablated with RAI both these vital hormones need to be on the patient's prescription for if, and possibly when needed. Some people can get by on T4 alone, some people simply stop converting T4 into to T3 at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient, which generally sees both T3 and T4 in the upper quadrants of the ranges.

Your conversion is compromised as your T3 at just 10% through the range whilst your T4 is at roughly 80% through the range. The addition of some T3 might do the trick, and you might like to try and get this through the NHS.

The thyroid is a major gland responsible for full body synchronisation, your metabolism and internal central heating system, and also your mental, physical, emotional, psychological and spiritual well being.

You might like the following book :- Your Thyroid and How To Keep It Healthy - I know it sounds irrelevant as you're without a thyroid, but its so necessary to know about this major gland so as to try and compensate for it's loss. It is written by a doctor who has himself hypothyroidism and is an easy, insightful, and sometimes funny read.

I'm with Graves having had my thyroid ablated in 2005, and now managing Graves, thyroid eye disease and hypothyroidism. I was refused a trial of T3 on the NHS last year as my T3 was suppressed and so I trialled both T3 and Natural Desiccated Thyroid myself. I have chosen to stay to on NDT as it contains all the same known hormones as that that we have lost, and it feels " softer " on my body and I'm getting my life back after becoming very unwell and finding no help or understanding within the NHS system. It is a slow build but I know I'm now going in the right direction.

carroll998 profile image
carroll998 in reply topennyannie

Arh thank you for your advice, I have ordered some ndt from a site recommended from a lady on here <supplier name removed>. Before I begin transition from thyroxine to ndt need to inform endo as have experienced atrial fibrillation in the past, not had for 4 years. I also have hypoparathyroidism siince thry removed my thyroid 2 years ago. I have asked for t3 but they're not able to prescribe it and my atrial fib goes against me too. At present I take 125mg of thyroxine so will need to know equivalent in ndt, can you help. I have gained 2 stone and even when I am upto exercising it makes no difference. My legs feet and lower back ache so much and energy levels not good. Once again thank you Caz

pennyannie profile image
pennyannie in reply tocarroll998

Hey there again,

When you switch over to NDT you do not start with an approximation of your current Levothyroxine dose. You need to read and follow instructions on how to medicate with NDT. I stopped 125 T4 one day and started with 1/2 grain of NDT the following day, and stayed there for a week, there after, week by week, slowly adding half or a quarter grains as to how I felt. Some people split their dose into an a.m. and p.m. others take it all in one go - one hour before food, or two hours after food. You dose to the relief of symptoms and when you have taken that 1/4 too much, you'll know, so you drop back down that quarter, and that's your dose, as there is no need for blood tests.

One grain of NDT usually contains 39 T4 and 9 T3 along with T1, T2, and calcitonin with in its listed ingredients.

I also take adrenal glandular support and my lower acheeeeyyyyyyyy back is greatly improved. Only introduce one supplement at a time, so you can assess any improvement and if it works and suits you.

Lucylockett30 profile image
Lucylockett30 in reply topennyannie

Hi Pennyannie can you Pm me with where you get the Adrenal Glandular support from

helvella profile image
helvellaAdministrator in reply topennyannie

Desiccated thyroid made to standards (e.g. using Thyroid USP desiccated thyroid powder) declares its T4 and T3 content and these are numerically near to what you say with only very small differences between makes.

However, I'd not call T4 and T3 "ingredients" - they are simply some of the constituents of the Thyroid USP.

When it comes to T2 and T1 and calcitonin, no company makes any claim to contain these substances. RLC (makes of Nature-Throid and WP Thyroid) acknowledge that their products may contain some T2 and T1. But in a healthy human, virtually all T2 and T1 is produced within cells when T3 is deiodinated to T2, then T2 to T1. So the thyroid is not a significant source of T2 and T1. Why then would we expect pig thyroids to be?

There is little to no evidence that T2 and T1 and calcitonin are actually present in real desiccated thyroid products, even if present that they can be absorbed successfully, nor that any quantity which even theoretically could be absorbed is likely to make a difference.

Remember that both T3 and reverse T3 deiodinate to T2. This is far more than has ever been suggested thyroid tissue ever contains.

Calcitonin is a protein which is very likely to be destroyed by enzymes in the digestive system.

Don't take this as a criticism of desiccated thyroid. For some reason, some people seem to do far better on desiccated thyroid than other options.

pennyannie profile image
pennyannie in reply tohelvella

Thank you Helvella,

Yes, I should have stayed with my " usual " wording regarding "NDT containing all the known hormones " and simply repeated what I had already detailed.

I don't know where " ingredients " came from and yes, the only detail of any breakdown of the NDT is the approximation of the value of the T3 and T4.

carroll998 profile image
carroll998 in reply topennyannie

Is half a grain half half of 1 tablet. ?You have been amazingly helpful thank you x

helvella profile image
helvellaAdministrator in reply tocarroll998

It depends on the tablets!

The north American products come in a variety of dosages. Something like one quarter to three grains. The Thai products come only in one grain tablets.

One grain translates as 60 or 65 milligrams of desiccated thyroid powder - but some companies use 60 while others use 65.

pennyannie profile image
pennyannie in reply tocarroll998

Hey there,

Yes, NDT is referred to as " grains " as opposed to tablets, but it looks like a tablet.

When I started on 1/2 a grain I believed it was half the value of the whole, so took it to mean that my T4 intake was around 19 and my T3 intake around 4.5.

Don't forget you have a stored amount of T4 Levothyroxine in your body to run down, so as your Levothyroxine runs down, you will be building up your new store of T3 and T4 from the NDT.

I don't remember any uncomfortable side effects from swopping over, in fact my sleep became much deeper and I felt more relaxed on waking.

Just remember,

T4 needs to convert to T3 in your body and T3 is said to be about 4 times more powerful than T4.

P.S. You might need to consider buying a pill cutter and a container to put your

" bits " in.

carroll998 profile image
carroll998 in reply topennyannie

Got a pill cutter. Because I have hypoparathyroidism too be interesting to see how much my symptoms improve or don't depending on whether they are due to lack of t3 or hypopara. Because I have pulsating tinnitus too I will know of any changes in my heart . Dropping to bits arent 1 😅😂

pennyannie profile image
pennyannie in reply tocarroll998

Ditto the " bits " but now I've got something that " sticks " a bit.

carroll998 profile image
carroll998 in reply topennyannie

Eh?

pennyannie profile image
pennyannie in reply tocarroll998

I was referring to the NDT sticking, loosely translated to mean working ?

carroll998 profile image
carroll998 in reply topennyannie

Don't get you..sorry

pennyannie profile image
pennyannie in reply tocarroll998

No worries, it's probably one of my silly pennyisms.

SeasideSusie profile image
SeasideSusieRemembering in reply tocarroll998

carroll998

I have removed your reference to the supplier of NDT. Please remember posting guidelines do not allow us to name suppliers on the open forum, they can only be discussed in private messages.

25. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.

carroll998 profile image
carroll998 in reply toSeasideSusie

Hi sorry I am aware not to advertise but I forgot

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