Stop this Thyroid madness : Hi Everyone. I'm new... - Thyroid UK

Thyroid UK

130,634 members153,923 posts

Stop this Thyroid madness

mishky profile image
17 Replies

Hi Everyone. I'm new to this forum. Was diagnosed with hypothyroidism about 15 years ago although I can't remember exactly. On the main website I'm reading a lot about people still having life limiting symptoms despite being on levothyroxin and trying to maintain a balanced diet. My list is endless and I am sick of feeling like this. I'm also reading about desicatted thyroid. Has anyone in the UK (London) successfully been prescribed this by their GP and how has it made a difference if any?

17 Replies
Treepie profile image

If you read more and on the Thyroid UK site you will see that you need to provide recent TSH ,FT4,FT3 ferritin,folate,B12 ,D3 and antibody results to get good advice. Some swear by NDT but will be unlikely to be prescribed it on the NHS .Most purchase via he internet.

HelenDufficy profile image
HelenDufficy in reply to Treepie

Do you need a prescription for purchases?

Peanut31 profile image
Peanut31 in reply to HelenDufficy

No your don’t need a prescription to purchase NDT.

Most people purchase it from abroad from a reliable source.

As Treepie has said please supply your thyroid results including ranges and someone will then help with a supplier.

Best wishes


HelenDufficy profile image
HelenDufficy in reply to Peanut31

Thank you

Treepie profile image
Treepie in reply to HelenDufficy

See replies below to original query.

mishky profile image
mishky in reply to Treepie

Thank you I had some bloods last week although I fear not the full panel.

mishky profile image
mishky in reply to Treepie

Hi Treepie

My recent results are:

TSH 1.64 0.35-4.94MU/L

Serum free T4 15 9.00 - 19.00pmol/L

My gp does not offer F3

Ferritin 105 16 00-204.00ug/L

Folate 11. 5 3.10-20.50ug/L

B12 660 187.00-883.00ng/L

Vitamin D 83 0.35-4.94mu/L

Many thanks

Hashi-Monster profile image
Hashi-Monster in reply to mishky

It’s better to start a new post to get more replies.

Your nutrients and thyroid are improving

Treepie profile image
Treepie in reply to mishky

You have disappeared for a month! Suggest you start a new post as Shaws said with these results.Most GPs do not test FT3 which us why so. many on this forum use private testing. Vit D result looks odd but the othets look OK but more expert folk nay comment if you start a new thread.

shaws profile image

Welcome to our forum and I am sorry you are hypothyroid and have not yet arrived at an optimum dose of levo, i.e. one that makes you feel well.

At one time we were only prescribed NDT - natural dessicated thyroid hormones - made from pigs thyroid glands and saved lives since 1892 before that we died a horrible death.

If you are in the UK, we used to get NDT prescribed if not improving on T4. Many improve when T3 is added to T4 but they've now withdrawn that too.

You can source your own NDT or T3 (to be added to T4). We don't put information on the open forum for prescription medications but members can respond by private message. NDt contains all of the hormones a healthy gland would produce, i.e. T4, T3, T2, T1 and calcitonin.

Put up a new post asking where to source NDT and asking for a private message to be sent to you and post will be closed for info on the forum, but you will be sent info from those who have it.

Some private endocrinologists may prescribe but you'd have to pay for consultations and NDT and if you wish to go this route email Dionne at TUK:

When you select a name put up a fresh post asking for a private message to be sent to you if they are sympathetic or not.

mishky profile image
mishky in reply to shaws

Hi I recently had some bloods but my GP does not send patients for T3 tests for some reason. Where do I post my results so far ? I asked to go for vit D, folate b12 and having ferritin tft (t4 and tsh) tests again.


Ferratin 82

freeT4 12.7

ThSH 2.24

FSH 4.3

HDL 1.7

LDL 3.8

cholesterol to DHL 3.5

(is liver function significant)

shaws profile image
shawsAdministrator in reply to mishky

Always put up a fresh post so that more will read and when you state your results you also have to put the ranges too. These figures are in brackets after the result. The reason is that labs differ in their machines and so do the ranges so we need the ranges to comment upon the results.

It is a big learning curve :) but we learn a lot by reading others post and widening our knowledge.

You can copy and paste the above onto a new post for comments. You need an increase in dose to bring TSH to around 1 or lower.

SlowDragon profile image
SlowDragonAdministrator in reply to mishky

They don’t test FT3 as they don’t want to find out if it’s low, because they have been told can’t prescribe T3 due to ridiculous high price currently charged to NHS

Do you have Hashimotos? Diagnosed by High antibodies

mishky profile image
mishky in reply to SlowDragon

So far just hypothyroid. Few people on here started messaging me privately with their recommendations of good endocrinologists. I'm also waiting for a list of previous recommendations from others

SlowDragon profile image
SlowDragonAdministrator in reply to mishky

90% if hypothyroidism is due to Hashimoto’s

Medics don’t understand it or treat it so don’t test for it

But if you have Hashimotos then looking at hidden food intolerances is important. Most common is gluten

marigold22 profile image

Hi and welcome. This fantastic thyroid forum has helped me to recover my health, having been initially diagnosed in 1981 - with hypothyroid, but in 2017 I proved with private blood test it's Hashimoto's. I have learnt so much valuable knowledge from wonderful members here. I would not have had any chance of gaining the necessary knowledge to recover my health without this forum and the members on it. Very sadly, what happened to me is still happening to newly diagnosed very ill people. It's a total travesty and neither I nor other knowledgeable members can understand what is happening or going wrong. We read here on a daily basis of medical negligence on the part of GPs and endocrinologists. It seems to us that the government wants a percentage of thyroid sufferers to simply fade away silently.

Very best of luck; keep reading and learning on here; ask questions. By the way, I didn't even begin to recover until I was on T3 only - T4 was poisoning me. However T3 only was just the beginning. All my vital nutrients had diminished after decades of illness; so you will need also to get as many vitamin/mineral blood tests somehow (beg for them on the NHS but those you can't get, get privately).

mishky profile image

Thanks so much for your response. I'm so glad you're on the way to recovery. I pray that my journey to recovery is not too painful. I feel like there's so much to discover xx

You may also like...