Natural Desiccated Thyroid : Has anyone in the... - Thyroid UK

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Natural Desiccated Thyroid

Lolalottie profile image
11 Replies

Has anyone in the U.K had success in obtaining this treatment from there G.P?

I am finding Levothyroxine is not treatingm my symptoms which seem to be getting worse the older I get.

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Lolalottie profile image
Lolalottie
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11 Replies
Lalatoot profile image
Lalatoot

Lolalottie NDT is not licensed for use in the UK. Because of this any doctor prescribing it must personally take responsibility for its use. Very few NHS doctors will take this risk; private doctors may be more likely to. Many of those on here who use NDT import it from abroad and self-treat.If you could post any recent thyroid blood results and vitamin levels on here folks will suggest how you could improve your treatment whether that be with supplements or additional thyroid hormones.

Lolalottie profile image
Lolalottie in reply toLalatoot

Thank you. I need to obtain my blood results from my doctor.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

First thing is, do you have any recent actual blood test results?

if not will need to get hold of copies.

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 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

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

Do you have autoimmune thyroid disease

What vitamin supplements are you currently taking

Low vitamin levels are more common as we get older

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 and money off codes

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

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

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

If you need to get testing

Only do private testing early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Come back with new post once you get FULL results

Don’t book a private consultation until after you get full thyroid and vitamin testing done

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 or NDT

tukadmin@thyroiduk.org

Roughly where in U.K. are you

Lolalottie profile image
Lolalottie

Thank you for this information. I am on 50mg levothyroxine. I have recently discovered I have a large growth on my thyroid that is not believed to be cancerous due to it being pale in colour. I am not sure where Togo from here but my doctor did a blood test which I was informed was ok. I need to obtain details of this from my doctor's as you have suggested.My levo seems to be the same producer.

I take Citolopram 20mg per day.

I am taking B12, Apple cider vinegar and a Thyroid support tablet I purchased from Amazon( quite recently)

I feel I need to test my adrenals as this has never been looked at.

I presume the next step is to contact my doctor's surgery.

Feeling overwhelmed and unsupported so thank you for all your advise.

Lolalottie profile image
Lolalottie in reply toLolalottie

I am based in Plymouth, Devon

SlowDragon profile image
SlowDragonAdministrator in reply toLolalottie

Approx how much do you weigh in kilo

As a very rough guide dose of levothyroxine should be slowly increased upwards in 25mcg steps until TSH is ALWAYS below 2

Most people when adequately treated will have TSH around or under one

Most important results are always Ft3, followed by Ft4

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

Typically dose levothyroxine is likely to be approx 1.6mcg levothyroxine per kilo of your weight per day …..so unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day

How long have you been left on just 50mcg

Generally any supplements called “thyroid support” are a bad idea. Vast majority contain iodine or kelp. This can make symptoms and levels worse

Until on a decent dose of levothyroxine there’s no point considering adding T3 or NDT

Come back with new post once you get results from receptionist, or getting online access to your medical records and test results

Lolalottie profile image
Lolalottie in reply toSlowDragon

I have been on 50mg for some years and weigh 10stone 10lbs

Gingernut44 profile image
Gingernut44

You definitely need to get hold of your test results. Ring your surgery and ask the receptionist, not the doctor, for a print out. Tell them that you’ll come and collect them - give them a couple of days. Don’t be fobbed off, they are legally yours. 50 mcg is only a starter dose and you’re most likely under medicated.What “thyroid support tablet” have you got. Can you give us a list of the ingredients. On the whole, it’s not a good idea to take these sort of tablets as they may contain things you shouldn’t take. It’s far better to test Vit D, Vit B, folate and ferritin first to know which supplements you need.

Re-read SlowDragon ’s reply to you.

Medichecks have an offer on at the moment for 21% off until 1st August.

Lolalottie profile image
Lolalottie

Thank you. My present dose has not been changed for some years.

SlowDragon profile image
SlowDragonAdministrator in reply toLolalottie

First step is get copies of your blood test results

How long since thyroid and vitamin levels were last tested

50mcg is only a STARTER dose

Bloods should be retested 6-8 weeks after each dose increase

Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS below 2

Most people when adequately treated will have TSH around or under one

Typically eventual dose after 12-18 months on levothyroxine will be approx 1.6mcg per kilo of your weight per day

Levothyroxine doesn’t top up failing thyroid, it replaces it

Essential to be on high enough dose

10 stone 10 lbs = 68 kilo approx

68 x 1.6 = 108mcg as the likely daily dose levothyroxine required

Some people need more than guidelines, a very few people might need slightly less

But it’s highly likely you are very under medicated

When left on inadequate dose levothyroxine, we develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Insist on vitamin D, folate, ferritin and B12 levels being tested as well as thyroid

Or test privately

Only do private testing early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Having been left on very small dose long t8me, you may need to increase dose levothyroxine very slowly, especially if vitamins need improvement too

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

SlowDragon profile image
SlowDragonAdministrator

Can you tell us exactly what this thyroid support is

Most are a very bad idea as contain iodine or kelp

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