I feel the need to vent my anger

[Mandcol]

Last November I was unable to obtain the NDT that had kept me well for nearly 5 years and had no choice but to turn to my GP. He referred me to an endocrinologist as when given levo 5 years ago I was very ill. The endo prescribed levo and T3 after being left untreated for a month waiting for my appt. I tried for weeks to cope with how ill I felt on t3/T4 combo and after speaking to endo he said drop the levo. I did this and continued to have chest pain and exhaustion to name just a couple of the side affects. I spoke to the endo on Friday after being unable to cope anymore and hardly able to breath. He told me he could prescribe armour as I had previously been very well on NDT but only privately. £300 to speak to him, the cost of a private prescription every time I need more meds and £120 a month for the tablets! I have fortunately been given a source of thyroid S from a kind member on this forum and I am fortunate enough to be able to pay for armour if this does not work out. I am so angry though that having never cost the NHS anything in my life they will not support me to get well. What about people who can’t afford to go privately? It’s an outrage. Sorry to ramble and vent but it feels better to share!! Good health to you all x

[SlowDragon Administrator]

The endo prescribed levo and T3 after being left untreated for a month waiting for my appt.

Have you tested vitamin D, folate, ferritin and B12 levels

After a month with no thyroid medication vitamin levels will have been catastrophic

For any thyroid hormones to work well we need GOOD vitamin levels

[Mandcol in reply to SlowDragon]

Yes I had my bloods with vitamin levels done in December and I am taking folate, b12 and vit d as they were all low. My ferritin levels were ok. Thanks for the reply.

[Hypopotamus]

It is a disgrace. We are not talking about something made from opals, but a waste product that has no other use. There should be a supply of cheap NDT that the NHS can afford to give to those of us who need it.

Profiteering from the sick, and those who because of being sick are not well off is immoral

I share Mandcol's anger.

[Mandcol in reply to Hypopotamus]

Thank you, it feels good not to be on my own with this. I hope you are in good health x

[ClareP5]

Failing in their primary duty to do no harm - worth reporting the darling?

[Mandcol in reply to ClareP5]

I truly feel they are failing in their duty to do no harm. I am not sure it will make a difference but I think I will report him, if nothing else it will help went my anger!

[Mtym]

I am so sorry to hear about this. Sadly, after 18 years of NHS prescribed NDT post thyroidectomy my prescription was stopped last April. I have had to buy NDT since then. I have a new GP who has written to the local CCG twice asking for my NHS prescription to be reinstated but had had no reply. This is so wrong. I can’t take thyroxine, like you, as it makes me ill. I worked for the NHS and feel totally let down. I hope you can find a way to get treated properly on the NHS.

[Mandcol in reply to Mtym]

I cannot believe they just stopped your prescription! If you hadn’t been able to source NDT you would have been left very ill . I just don’t understand how this is justifiable for a few hundred pounds a year. My grandson sadly has cystic fibrosis and his meds cost £7000a month, fortunately the NHS are happy to fund this. I wrote 4 years ago to my MP about it but got nowhere. Now I just sign petitions when I see them and moan to you lovely people! Wishing you good health x

[Miffie in reply to Mtym]

My ndt was stopped years ago with no warning, my then new GP told me it was the same product re named. How unaware did he think I was? Granted I had just joined his practice but he knew I’d been on it for years having been diagnosed before levo was even available.

I always said when levo was first around given its status and ndt somewhat undermined it seemed the tail was wagging the dog! Silly me thought it would be resolved and they would be there side by side. 😟

I was a lot less cynical in those days.

[Mandcol in reply to Miffie]

Yes the whole stupid scenario makes us cynical! I thought doctors were in the business of making people better. I hope to now manage to source your NDT and are in good health.

[MichelleHarris]

Yes its disgraceful. I feel totally let down. There are petitions if you google x

[Mandcol in reply to MichelleHarris]

I always sign petitions when I see them as I feel so strongly on this subject, not just for myself but for all the hundreds of people who are left to struggle and find a way back to health themselves. It is disgraceful.

[HighlandMo]

I agree. It’s disgraceful that an amazing resource is denied us. We had a petition before the Scottish Parliament to try and make things better. Sadly, although many of the MSPs were supportive it eventually fizzled out.

[Mandcol in reply to HighlandMo]

That’s such a shame that it fizzled out. We all need to continue to make our voices heard if things are ever going to change . I hope you are in good health.

[Miffie]

When I approached my GP about starting back on levo as my preffered ndt was unavailable I was given a categorical, “well no, it’s not that simple”. She was happy I go off trying random self sourced products.

I was diagnosed with hypothyroidism over sixty years ago so assumed treatment would continue to be available despite a my ‘declining levothyroxine’ some time ago.

Perhaps I should have kept ordering and stock piling to sell on ?

It’s an absolute joke. At the time I was refused I had just surgery tests and results were TSH l< 0.014 miu/L [0.35 - 4.94]

Serum free T4 level 9.8 pmol/L [9 - 19];

Not worried about TSH it’s lurked around there for years and a very cheerful ‘ your free T4 is much better now. I was worried about you when it was 16 ish.

I am back on my fav ndt again but looking forward to seeing her face to face on Friday!

It beggars belief we are refused for a known chronic condition. No one has stopped my diabetes meds when I present with perfect results. Small changes to routine and quantity of meds but not actually stopping.

[n1mble2 in reply to Miffie]

Hi Miffie. I'm needing a new NDT supply - please could you tell me which one is your 'fave' one and where I might get it? Please DM me if need be. Thank you.

[Mandcol in reply to n1mble2]

Hi, I am not Miffie I am mandcol. I am happy to answer your question but unsure how to PM unless someone has sent me a PM!

[helvella Administrator Thyroid UK in reply to Mandcol]

Click on the icon of the person you wish to message - then click on Message.

Fragment of screen shot showing Message button.

[Mandcol in reply to helvella]

Thank you.

[Blackapril80 in reply to Miffie]

Hi Miffie I'm needing a new NDT suppliy-please could you tell me which one is yours gave one and where I might get it ? Please p m me , Thank you

[abirose311 in reply to Miffie]

IT IS ABSOLUTELY INSANE AND I AM UPSET AND ANGRY WITH YOU!

I have been prescribed NHS T3/T4 combination as a substitute for NDT by hospital endo 3 years ago. I became very unwell and brain fogged.

I understand that the (weak 20mcg) T3 costs NHS £200 a month .

My income has been dessimated by covid! I am suffering hardship, using credit and slowly accruing debt, to pay for my private endo and Armour.

I asked for help,

NHS short-sightedly refused, but they have sent an HC3 Certificate for limited help with health costs.

It does not offer help with medication but should all of my hair fall out from lack of thyroid hormone, I can now get a wig for £108. How splendid!

So the NHS will pay £200 a month for me to have inferior, less-effective medication with a daily dose of heart-damaging salt, instead of allowing me NDT, which really helps me, and that costs NHS a third of the price of T3

[helvella Administrator Thyroid UK in reply to abirose311]

medication with a daily dose of heart-damaging salt,

Not sure what you mean by this salt content?

[abirose311 in reply to helvella]

Sorry this is my mistake. I've always thought anything 'sodium' was salt.

I stand corrected.

But my point remains the same.

[helvella Administrator Thyroid UK in reply to abirose311]

It varies by make (some products include other ingredients which contain sodium - such as sodium citrate) but the standard view of the active pharmaceutical ingredient levothyroxine sodium itself is summed up here:

2. Qualitative and quantitative composition

Each Levothyroxine Aristo 100 micrograms tablet contains 100 micrograms levothyroxine sodium anhydrous.

Excipient(s) with known effect

This medicinal product contains less than 1 mmol sodium (23 mg) per tablet, that is to say essentially 'sodium-free'.

For the full list of excipients, see section 6.1.

medicines.org.uk/emc/produc...

Yes - most often, the issue about salt intake is the sodium content.

[Miffie in reply to abirose311]

Sorry you are having such a difficult time. I have to date been refused referral to an endo, still it’s been sixty odd years since my thyroid was destroyed by radiation treatment for a birth mark. Not uncommon in the early 1950s. Probably a bit late now for one. I had my prescribed ndt treatment stopped with no warning years ago and the explanation levothyroxine was “exactly the same, just a new name”.Clearly a GP who felt that any woman without a medical degree was devoid of intelligence.

I hope you are reassured by the helpful comments re salt that you have received from helvella . Take care

[helvella Administrator Thyroid UK]

Levothyroxine is about 2.88% (by weight) sodium. It contains no chlorine.

So, in 100 micrograms of levothyroxine, there would be 2.88 micrograms of sodium.

That is less than the weight of one single grain of table salt.

(Other ingredients might, or might not, contain sodium and chlorine. But that is, really, a different conversation.)

The word salt refers to the compound produced when a base reacts with an acid.

[Miffie]

Yes, yes, yes! At least she is currently making no complaints that I am self sourcing.

When she saw my MMH bloods with a TSH of over 1 she was super excited. No comment when she looked at fT4 and fT3 below range so I told her that personally I did better with thyroid hormones in range. Still silence.

Cannot wait for the phone call on Friday with the lab results she has been promised by endocrinology and the lab are are better suited to ndt treatment.

[Miffie]

I will, I rather suspect she will be lovely.