NDT

[Cathydickson]

I can't tolerate T3 or T4 (Thyroxine or Cytomel). Doc is refusing to give me a private prescription or a prescription on a "named patient basis" for NDT. Ive also been told by different GP that if I dont take Cytomel I will get Myxedema and die. Need help urgently. My TSH is 12.31, free t4 is 9.1. Six weeks ago my total T3 was1.7.

[Anthea55]

Welcome to the forum, Cathydickson

You certainly need treatment.

It may be the fillers in the tablets which disagree with you. Have you tried other brands? There are some which are lactose free. Your GP may not know about them all.

This link to Thyroid UK lists the products available in the UK, with their ingredients.

thyroiduk.org/tuk/treatment...

Can you get a referral to an endocrinologist?

Yes, I know about docs refusing to give private prescriptions. Mine explained that she couldn't give me a private prescription as I'm registered with her as an NHS patient.

[Cathydickson in reply to Anthea55]

Hi Anthea, thanks for your reply. One of the problems that I have is that I have tachycardia ( I have ME/CFS) and the thyroid meds exacerbate this and make me extremely ill. Possibly the NDT would do the same but I would like to try it all the same. Ive looked up names of private docs in my area and will contact them and see what happens. Ive had a referral to Endo a few months back and he said my thyroid wasnt that bad and sent me away. Now my GP says I could die of Myxedema if I don't take the meds. Who is right? Over recent years I've tried meds from different companies (Thyroxine and Cytomel) and I've always had the same horrendous results. I feel like Im banging my head against a brick wall.

[Pamela0106 in reply to Cathydickson]

I'm so sorry you're in that position. I haven't tried T3 yet but I'm hoping it works wonders for me.

I know you can't tolerate it but if you haven't already done so, could I ask you to read and sign this petition to help stop the withdrawal of T3 from the NHS? If be super grateful.

change.org/p/itt-campaign-g...

[Cathydickson in reply to Pamela0106]

Done.

[Angel_of_the_North in reply to Cathydickson]

Yes, untreated hypothyroidism can result in heart disease and myxoedema coma, dementia and death. Before the discovery of thyroid hormones, thats what happened to people with thyrpid problems - a few years of being laughed at in the loony bin followed by death.

It's most likely to be the fillers which cause problems - could be worth trying a hypo-allergenic liquid thyroxine - or low vitamins and minerals making it impossible for your body to use the hormones.

Do you have the results for B12, folate, ferritin and vitamin D? And the results with ranges for TSH, free T3 (total T3 is not a useful test) and free T4. Any antibody results?

Tachycardia can be a symptons of hypothyroidism and heart patients are often given T3 after surgery,

[HEA72]

Hi Cathydickson, I too cannot tolerate any thyroid meds anymore. I've tried different brands of T4, T3 and NDT. NDT fared the best for me for a while but I soon became intolerant to that too. I too have 'CFS'.

I've since discovered that I have hypoadrenia, which can be exacerbated by thyroid meds in some people and maybe why I became more intolerant to them as time went on? I've also discovered I have heavy metal and chemical toxicity, which are inhibiting my thyroid, adrenals and mitochondrial function. I still have my thyroid, I don't have Hashimotos, so I was instructed to come off the thyroid meds by my doctor because of the awful side effects I developed. With the guidance of my doctor, I'm now off the meds and following a heavy metal detox programme in hope that this will allow my thyroid to work for itself properly and a return of health for my adrenals and mitochondria..... fingers and toes crossed for that one!

I'm therefore wondering if exploring heavy metal toxicity is an avenue you've tried?

The more I read about heavy metal and chemical toxicity in chronic illness, the more I wonder how many of us with CFS/ME/FMS and thyroid issues etc have this as the underlying cause?......

[Cathydickson in reply to HEA72]

Hi Hea72, thanks for your reply. I have ME/CFS too and am so allergic to meds of any kind. Even dental fillings and local anaesthetics are a no no for me. Im in the UK and my NHS doctors are worse than useless about thyroid and ME issues so I know they wouldn't entertain me asking about a heavy metal and chemical detox. Ive recently been in touch with a doctor online and he sounds sensible, but it's early days with that one. I also see a private doctor and take lots of supplements to try help my adrenal function, hoping to improve my thyroid function that way. I will ask her about the heavy metal detox etc. May I ask how you found out that you had heavy metal, chemical toxicity? Take care. Hope things work out for you.

[greygoose]

I think your doctor is exaggerating a bit. You're not going to drop dead tomorrow! I think you've got several years before myxoedema sets in. Your TSH is high, but I've seen a lot higher - mine was 45 at one point. Don't know how low your Frees are, because you haven't given ranges.

But, with a TSH that high, you do need to go on something reasonably soon, or you could start feeling very ill. Are you willing to buy your own NDT? If so, change the title to your thread, asking someone to PM you with their trusted sources. I'm sure plenty of people will.

[Clutter]

Cathydickson,

It's likely to take years before your thyroid levels become so low that you go into a myxoedema coma and die but your quality of life will be very poor if hypothyroidism is left untreated and your health will suffer, eventually, irreversibly.

Have you tried liquid thyroxine? It can work for people who are intolerant to the fillers in tablets?

Email [e-mail] if you would like a list of member recommended endocrinologists and private GPs. You should contact their offices to see whether they will prescribe NDT.

If you want to buy NDT without prescription write a new post and ask members to recommend sources via private messages. Some people need to try several different brands before they find the one which suits them.

[mhackett234]

Eat 2 or 3 distinct meals per day with NO SNACKING. Follow a low carb diet, high greens, fish diet. This may be the opposite of what you are doing now. In other words, "if what you are doing isn't working, stop doing it". Some people use OTC "Betadine" (Potassium Iododide solution for scratches) liberally on their skin as a backup source for getting enough iodine into the body. Doctors are bound by strict regulations to cut / pharma-dose / radiate for almost everything that ails you. Doctors are high-paid cutters / dosers / radiators of patients who haven't taken care of themselves. Docs are very limited in training, knowledge, etc to help most patients. Sadly medicine has evolved into "If my patient dies, well, at least the insurance company gave me a quarter million dollars for using yet another failed treatment during the last 15 years of their suffering ."