How do you switch to NDT: Hi everyone, I just... - Thyroid UK

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How do you switch to NDT

xdianex profile image
10 Replies

Hi everyone, I just wanted to ask how people go about swapping from levo to NDT? My doctor won’t prescribe it for me and just tries throwing antidepressants at me every time I see him.I’ve been on levo for a good 18 years and only rarely have I felt well 🤔 I’m now on HRT as well after arguing I wasn’t depressed and my symptoms feel hormonal. But I’m thinking a lot is still down to my thyroid so I’m wondering if swapping would help 🤔

Tia Diane

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pennyannie profile image
pennyannie

Hello Xdianex :

I switched from 125mcg T4 - Levothyroxine to Natural Desiccated Thyroid the following day.

I had read around the subject, and felt confidant to give it a go :

It has meant I am " outside " the system, and I don't think this decision should be taken lightly.

I'm with Graves post RAI ablation in 2005 and only ever treated with T4:

I first went through the conventional channels, but was refused both trial of T3 - Liothyronine and NDT and so when my ferritin, folate, B12 and vitamin D were up at optimal levels I started self medicating, first with T3 added to my T4 dose and later with NDT which I prefer as it feel softer on my body.

Do you have any current blood test results to share with forum members as there maybe something there that is easily rectified for you to achieve better health.

T4 - Levothyroxine does work for the majority of people, once core strength vitamins and minerals are maintained at optimal levels and T4 is built up into the top quadrant of the range.

Jazzw profile image
Jazzw in reply to pennyannie

It has meant I am " outside " the system, and I don't think this decision should be taken lightly.

Absolutely—I’m in the same position and while it seemed the only thing to do at the time, several years down the line I find I worry more and more about being able to source NDT, whether I’ll be able to continue to afford it and, as I get older, what I might be erroneously putting down to thyroid medication issues instead of a new problem.

So I’d say, make sure you’ve exhausted all options with the NHS first. Because once you go down this road, it’s not so easy to turn back.

Jeppy profile image
Jeppy in reply to pennyannie

Thanks as helps me iwant to swop to ndtPls may you pm me about getting some if you dont mind

SlowDragon profile image
SlowDragonAdministrator

Before considering changing over you need to get FULL thyroid and vitamin testing

What were most recent thyroid test results from GP

HRT will almost always result in needing dose increase in levothyroxine

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.

Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

SlowDragon profile image
SlowDragonAdministrator

As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet

Persistent cough can be linked to lactose intolerance

Or acid reflux…usually due to low stomach acid

See in recent posts you have been prescribed PPI omeprazole ….most hypothyroid patients have LOW stomach acid

PPI are for high acid

xdianex profile image
xdianex in reply to SlowDragon

Hi SlowDragon I was on Omeprasole for silent reflux but they took me off them after a few month because of osteoporosis. I try to stay away from gluten as it bloats me same with milk. I’ve asked for print out of tests that have been done at the doctors and they told me I have to write and ask permission. I’ve also asked for my results to be shown online but they won’t do that either. My last TSH result was 0.68 and that’s all they would tell me. I know from previous medichecks tests that my vitamin D is really low and have been taking 4000 to try and bump it up. My ferritin was also on the low side so I’ve been taking iron at night. My dose of levothyroxine is 150 and brand changes every time.

I will post my old medichecks results but think I’m gonna do a new one.

SlowDragon profile image
SlowDragonAdministrator in reply to xdianex

If your lactose intolerant you need lactose free levothyroxine

Teva or Aristo

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

xdianex profile image
xdianex

TSH from may

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pennyannie profile image
pennyannie in reply to xdianex

The accepted conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 : T3 / T4 with most people feeling at their best when they come in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.59 so going out from centre, showing poor conversion.

This will improve when you build up your core strength vitamins and minerals :

I read that ferritin needs to be over 70 for Levothyroxine to work and when my ferritin was at 22 I was sent for an endoscopy and colonoscopy.

I now feel at my best with a ferritin of around 100, folate at around 20, active B12 at 75 + and vitamin D at around 100 :

xdianex profile image
xdianex

Vitamins

Colour

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