Graves’ disease and LDN: Has anyone with Graves... - Thyroid UK

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Graves’ disease and LDN

MiniMum97 profile image
5 Replies

Has anyone with Graves been prescribed Low Dose Naltrexone (LDN)?

If so, how did you get it prescribed and did you find it effective?

Thank you.

5 Replies
Zazbag profile image
Zazbag

I'm taking LDN for Hashimoto's, it has lowered both my thyroglobulin and TPO antibodies by 13% and 16% respectively in 6 weeks. I'm not on the full dose yet. I got it from Dickson Chemist: dicksonchemist.co.uk/new/pr...

MiniMum97 profile image
MiniMum97 in reply to Zazbag

That’s interesting! Hope you continue to see improvements. Thanks for the link.

pennyannie profile image
pennyannie

Hello MiniMum

If you check out the Elaine Moore Graves Disease Foundation website there is much research into alternative, and more holistic options for Graves patients, and includes information of LDN : and yes you need Dickson's the Chemist:

Reading your history, when I was diagnosed with Graves I thought the answer would have been a long awaited diagnosis of hypothyroidism, the other end of the scale.

I'm now after RAI managing lingering Graves, thyroid eye disease and hypothyroidism, and finding no help with my continued symptoms have resorted to self medicating with full spectrum thyroid hormone replacement, and much improved.

Just wish I knew all that I know now back in 2003/5 because I certainly would have questioned my no treatment options, and I would have refused the RAI .

There are some interesting articles on Thyroid Patients Canada - highlighting antibodies resulting in some people living with Hypo/Graves as the 'normal ' for them.

Sorry, can't get my head around cut and paste :

MiniMum97 profile image
MiniMum97 in reply to pennyannie

Hi Pennyannie Thanks for your interesting reply. I will check out the things you suggest.

I have been asked to consider RAI or thyroidectomy. It seems like such a big hammer to crack a nut. And you effectively taking out a fully functioning part of your body and not actually treating the underlying condition. I will still be at risk of TED and have lots of inflammation throughout by body including BMS which could all be linked to the underlying autoimmunity.

I don’t fancy RAI at all. A study last year linked it with an increased risk of cancer as I sure you know. It makes sense to be. I’d always thought irradiating your body so much that you can’t come in contact with other people is never going to be good surely!

And a thyroidectomy is an op so comes with loads of risk and of course scarring. Obviously there is also the particular risk to your parathyroid glands plus you will then def be hypothyroid for life.

The more I talk through these options the more I want to try some other things first and see if I can hold out for project Davisd which is only a few years away (if it comes to anything of course).

It’s interesting what you say about the articles on Thyroid Patients Canada. As you have seen I fluctuate between being over and under active. I have tested positive for Graves but no sign of hashis on a thyroid ultrasound. When I spoke to the endo he said that Graves’ abs can sometimes both block and stimulate which may be why I am fluctuating between the two. I’ll check out the articles you suggest.

Thanks for taking the time to reply.

Xx

pennyannie profile image
pennyannie in reply to MiniMum97

Hey there - I think if you are ok on the AT medication, when needed, maybe this has to be the current, best option.

Both other options uptimately leave you without a thyroid and currently the NHS routinely only prescribe T4, Levothyroxine.

A fully functioning working thyroid supports you with T1.T2.T3.T4. and calcitonin - and it just seems logical to me that other options should be available on the NHS just as it used to be some years ago.

I have been very unwell, and refused both T3 and NDT on the NHS and have had to resort to buying my own full spectrum thyroid hormone replacement, in order to regain my health.

Professor Toft the eminent endocrinologist wrote a very interesting article in 2017 as he retired from his illustrious career both from within and outside the NHS : The full aticle is on here somewhere, -Thyroid Hormone Replacement - a Counterblast To Guidelines : in which he states :

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Grave's dissease, irrespective of age or number of recurrences of hyperthyroidism. '

I think he knows and has seem a lot more than most of us on here put together, and find his article so relative in what it does and doesn't say, to anyone dealing with a thyroid issue.

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