Is anyone using natural Thyroxine replacement, ... - Thyroid UK

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Is anyone using natural Thyroxine replacement, if so how is it working for you?

Karl profile image
Karl
12 Replies

I have been taking Levothyroxine for the last 5 years following a total Thyroidectomy following the discovery of follicular Cancer, and I can hand on heart say that no day has passed where I am not tired and I mean exhausted! come 6-7 o'clock.

Surely it cant take 5 years to sort my levels out? i'm not sure that the synthetic Levo is working properly for me? also I have never had a T3 replacement is this needed?

No Doctor or consultant has given me the option of natural Thyroxine, either Armour or the others on the market, and I just wanted to if anyone else was using natural medication of synthetic?

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Karl profile image
Karl
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12 Replies

Lots of us do, although the majority of us taking it dont get it on prescription and have to get it from abroad ourselves (there are a few lucky ones that get it prescribed but very few).

You could always try asking for a trial of T3 if you feel the thyroxine alone is not working properly, you never know, you might have a GP willing to listen and at least try it or send you to an endo that will. Just dont get your hopes up!

Mouse profile image
Mouse

I am one of the lucky ones who get Armour on prescription. I still have my thyroid and only take a tiny dose but I am definitely better on Armour than I was on Levothyroxine but it has taken a while for my body to adjust to it.

PinkNinja profile image
PinkNinja

If you have had a TT then natural thyroid (NDT, Armour is one brand) is likely to suit you much better. It might be worth trying to persuade your doctor. If he won't listen, ask for an endo referral. You may have some luck.

I am taking NDT (Nature-throid) and, although I'm not yet up to my optimum dose, I am already feeling a lot better than I did on levo. I'm still not quite right but at least I have noticed a significant improvement. I love the fact that my brain is actually working now and I am coping quite well with the stress of Christmas and work (very busy half-term!) The big test will be January where I usually slip into a deep depression because of the winter and the fact that I no longer have Christmas to keep my going. I am hopeful but keeping my fingers crossed!

Carolyn x

shaws profile image
shawsAdministrator

It took me four years to finally find the solution for me. I had to go private and after trying several NDT's have found one that suits plus a little T3 and I have normal health now and no insomnia nor other unpleasant symptoms particularly the ones whilst on Levi. My GP wont prescribe.

Hello and welcome,

You might be interested to check this page on the main Thyroid UK website thyroiduk.org.uk/tuk/treatm...

Some people do well on thyroxine, some on NDT and some on T3 - or then again a mix of a couple of these. It's a very complicated science and as you'll have gathered from the comments above many people take a little while to find what works best for them.

Good luck, Jane x

thyroiduk.org

helvella profile image
helvellaAdministratorThyroid UK

Be careful not to think of it simply as a "Thyroxine replacement" - the prescription desiccated thyroid products such as Nature-Throid, Erfa and Armour contain T4 (thyroxine) AND T3 (liothyronine).

ritz profile image
ritz

i was on levo for 4 years and just got worse, i went to see dr s privatly and changed to armour and t3 - not a myrical cure but much much better, i work full time and can stay awake!..........not much energy when it comes to housework - but not sure i can rarely blame that on being hypo :)

julietta profile image
julietta

I have been on NDT for about 7 years now and have been well most of that time. I was on levo for two years before that and felt more and more ill. I have Armour on a private prescription and before that bought it myself from abroad. My GP agreed to prescribe it privately as I had heard rumours that the company abroad may stop exporting to individuals, ( which hasn't happened) but he won't give it to me on the NHS, sadly but I shall work on him !!

I would say you need T3 - it sounds like you're not converting T4. to T3 properly. I would do as Fedupsusie says and talk to your G P about it - best of luck.

Clarebear profile image
Clarebear

I am one of the lucky ones who gets Armour on NHS prescription from my GP :) I was on levo for about 6 months but tests showed it wasn't converting very well and I managed to persuade my reluctant endo into supervising me on a trial of NDT. He prescribed it for me on a private prescription and my GP watched my gradual improvement with interest and surprise (as did my endo). Last summer he could see I was pretty much back to normal so agreed to prescribe it for me on the NHS,. I realise I am very lucky though :) xx

Karl profile image
Karl

Thanks for all your replies.

Can someone tell me what an Endo does? sorry if that sounds ignorant.

Whats worse for me is the tiredness, Its frighting. I wake up tired, and by 1830 im ready for bed. I have a stressful job as I run my own business. I was perfect before the op so I put it all down to not having a thyroid. I find it odd that I have never been prescribed t3.

My gp, and there are four who i rotate around blame it on a range of symptoms, blood pressure weight stress, yet I was fine pre op and only thing that has changed is the Thyroid has been replaced by Levo.

I feel guilty for my wife as I can irritable and grumpy, and having little to no energy to play with my daughter is upsetting. Its not her fault.

I will speak with my GP as I am due a flu jab next week and also a 6 month visit to my consultant who last time I had asked had never heard of Natural Thyroxine replacement which is now slightly alarming seeing as though its been around since the 50's

NtombiSA profile image
NtombiSA in reply to Karl

Hi Karl.....I suffered badly with M.E. or Myalgic Encephalomyelitis for eight long and dreadful years. What you describe sounds a lot like the total exhaustion and brain fog I experienced. I often wonder if this disease did not damage my Thyroid. Hypo-thyroidism definitely causes fatigue....but nothing like the debilitating 'right through to your bones' exhaustion and depression that I experienced with M.E.

I hope with all my heart that this is not the case with you, as there is little that can be done for M.E. sufferers. The symptoms eventually slowly get better.....and you feel as though you have come out of a 'hundred year' sleep! Some people repair more quickly than others.

Karl profile image
Karl

I was at my consultant this morning, I asked her again about Armour and she sighed shook her head and said no. Its not right as there is no way of telling what level of T4 is in it like you can with synthetic.

She didn't dismiss it she just said she was not happy to trial it.

we then discussed lifestyle and career choices and how it could be psychological to assume that its a Thyroid problem.

This is the same Doctor who has never heard of it two years ago.

I am so losing faith in the NHS, I get the opinion of 6 different GPs and 3 consultants who all give different non definite answers to my problems.

Is Private the way to go?

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