Ongoing side effects

[Garywuk]

Hi since my diagnosis back in 2004 I have had many side effects - from Fibromyalgia, Vit D deficiency, weight issues, sleep issues, etc etc. I'm currently on 125mg Levo - but want to try NDT as have never felt fully right using the synthetic versions. I need to find a consultant that is willing to let my try

[greygoose]

I very much doubt that the reason you haven't felt well on levo is because it's synthetic. It is an exact copy of the hormone, T4, made by your thyroid. However, there can be many reasons why it doesn't make you feel well: nutritional deficiencies, a conversion problem, an absorption problem, under-medication. But, you will never know if you don't get full thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

NDT has the hormones T4 and T3 that come from pig thyroid, but it's not really all that 'natural'. The pills still have fillers and excipients, because you can't make a pill without them. NDT doesn't suit everyone. I thought that NDT was going to be the answer to all my problems, but it made me even worse. I'm only well on synthetic T3 only.

So, by all means try NDT if you can get hold of it. But, I would strongely recommend that you get the full testing done first. For one thing, NDT is not going to help you unless all your nutrients are optimal. And, also it would be a very good idea to try and find out why you haven't got better on levo.

[SlowDragon Administrator]

Previous post shows low vitamin D, and sleep apnea

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

What are your most recent thyroid and vitamin results

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

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

Do you always get same brand levothyroxine at each prescription

Do you always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once for autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

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

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...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

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. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[SlowDragon Administrator]

125mcg is not a very high dose for a bloke

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

[shaws Administrator]

Welcome to our forum Garywuk and am sorry you have hypothyroidism. Unfortunately the 'powers that be' withdrew NDTs a while ago. Considering it's safety was proven from 1892 when first introduced and a lifesaver from then on for many hypothyroid people.

I think that there was a complaint about withdrawing NDT so maybe it can be prescribed.

Considering NDTs have proven safety since 1892 and was the first that saved many lives why cannot they prescribe it for patients who are still unwell on levo only.

[shaws Administrator]

This is a link to a doctor/scientist and expert on Fibromyalgia and you may find it helpful.

Unfortunately Dr John Lowe, an excellent doctor had an accident that caused his premature death but you may find the the following link re fibromyalgia helpful.

healthunlocked.com/thyroidu...