LDN and Hashimoto's

[Jemari]

After 8 years on synthetic T4, then T4 and T3, I switched to NDT (Naturethroid) last November (prescribed by my GP on a private prescription). I have felt so much better, more alive and clear headed. Thyroid sorted, immune system not.

I still get crazy allergic reactions to things I used to be fine with. These include skin rashes; upset stomach; itchy, runny eyes and nose, sore throat; headache. I can't tolerate eating wheat, most antibiotics, wearing wool or any type of jewellery, perfume, pollen ... the list keeps growing. Anti-histamine sometimes helps, sometimes not (especially not for my skin rashes). Something hit me last week (pollen, perhaps) and I felt totally wiped out for four days.

I also have been diagnosed with IBS, a biopsy shows my villi are damaged, and I have acid reflux and digestive problems on a regular basis. My diet is usually healthy, I don't eat meat, but I do eat fish, vegetables and fruit, and I try to avoid gluten. I drink a lot of water, but seem unable to tolerate wine (red and white) recently. These digestive problems really interfere with my enjoyment of life.

After 10 years on PPI's (which I stopped early last year) my GP thinks, from recent blood test results, that I do not absorb vitamins and mineral properly. I'm having B12 injections and taking various vitamin supplements, which may or may not be working (if they aren't being absorbed). My GP is looking for a specialist to investigate this further for me.

So much for background, I hope I haven't bored anyone too much.

I have asked to try LDN (low dose naltrexone). My GP has agreed to prescribe it privately on my next visit, after he has done some research about the correct dose. He thinks I should start very low (0.05 mg).

My question is this (OK, there is more than one :-). Has anyone else with Hashimoto's tried LDN? If so, what dose works for you? Has it helped to better control your immune system responses/allergic reactions? Are you aware of any side effects?

I know we are all different, but I am very interested to hear how other people with Hashimoto's get along with this drug.

Thank you for your time and for any responses in advance.

[Marz]

I have contemplated LDN and was almost there with it Something made me pull back. I have Crohns - diagnosed over 40 years ago - along with Hashimotos - diagnosed in 2005. Anti-bodies still high and cortisol raised.

I am very surprised to read that you have been on PPI's for so long - isn't it meant to be a short-term treatment ? Surely that could have caused mal-absorption and other issues.... Maybe you need to be completely GF and I have read that dairy and eggs can cause lots of problems too. It really is a minefield and as you say we are all so different.

Healing the gut is difficult. Hopefully someone will be along soon that has taken LDN - there are some who are taking it I believe.

I wish you well and hope you soon find the answers...

[Jemari in reply to Marz]

I started a reply and lost it!

Thank you for your message and good wishes.

I now know I shouldn't have been on PPIs for so long. When I read a review just over a year ago, that said they can affect absorbtion, I stopped taking them. My GP during those years (I'm in the UK) just kept prescribing and I knew no better.

I have a new GP now, who is very helpful; he found I wasn't absorbing B12 and arranged the injections for me. He also prescribes NDT and will prescribe LDN, so I am lucky, even if I do have to pay for these meds.

I was GF for 18 months (that was hard, because in travel a lot. I ended up on a 24 hour flight with only fruit and nuts to eat, because I don't eat meat) but it didn't really seem to make a big difference; I still had symptoms. I am being tested for celiac again in two weeks (I've been gluten free again for a few weeks, so have to reintroduce it before the test) because of the biopsy and continuing digestive issues.

Why did you decide not to try LDN?

I will give LDN a try. I long to find a magic bullet, but we are so complex, I realise it is unlikely that such a drug exists.

I hope you find answers to your health issues soon and wish you good health for the future too.

[Marz in reply to Jemari]

..think it was my Physio/acupuncturist who put me off if I am honest. I had done all the work contacting the website - forwarding the evidence of my conditions - completing forms and so on. My Physio is currently giving me a months FREE acupuncture treatment - twice a week - in an effort to reduce the AB's. He has Hashimotos so has a special interest. So now I am a lab-rat

Anyway my Crohns has been peaceful for many years albeit still there - according to a colonoscopy I had over a year ago. The biopsy says low grade lesions. Compared to how things were when I was a frantic career girl with endless surgeries with complications - things seem calm and peaceful. I was thinking more about the Hashimotos as my Anti-TPO has only dropped to 800+ - having been over 900 before going gluten free. So it must be dairy/eggs in my case I think. Am still gluten free as I really believe it is better for us ALL. Think I am just gluten sensitive. The coeliac tests are so unreliable unless you have the full array done by Regenerus Labs - ( they do the tests that Cyrex in the States do )

Everything I have read about LDN sounds excellent and if I was younger and suffering I think I would certainly try it. After years of illness I seem to be enjoying a time of renewed energy and wellness as I hurtle towards 70 !! Maybe its the Cretan lifestyle and weather

Will look out for your posts and hope to read of your upward progress

[Hidden in reply to Jemari]

If you have pernicious anaemia, then you have low stomach acid as the 2 go hand in hand.

[Jemari in reply to Hidden]

I had low b12 but not PA. Do you know what tests there are for this? I've tried the bicarbonate test, which indicates low acid, but would like my GP onside with this idea too.

[Jemari]

Thank you. I do take probiotics and multivitamins, but haven't tried slippery elm. I'll give it a go. Hopefully, I'm absorbing some of what I'm taking.

[Jemari in reply to Jemari]

Do you know how we can tell whether our problem is low stomach acid or high stomach acid, please?

[Hidden]

Hi, there is a FB group made up of people who are using LDN fOR Hashimoto's.

BTW, you sound like a classic coeliac - could you give up gluten completely? I bet it sorts out most of your symptoms. Usually villi damage equates to a coeliac diagnosis. Gluten interferes with absorption, once i stopped gluten my absorption improved massively and my Hashimoto's antibodies went right down

Agree with the other poster who suggested betaine - i started that with creon and it's realy helped my absorption too.

NHS is well known for misdiagnosing low stomach acid as high stomach acid (amongst all its other failures)

[Jemari in reply to Hidden]

Thank you for your reply. I did give up gluten for 18 months, but still had bad digestive problems. I am off gluten again, but need to go back on prior to the next blood test. Thank you for the tips, and I'll look for the FB page also.

[Clutter in reply to Jemari]

Jemari, start eating gluten asap. Coeliac Society or Assoc recommend eating normal gluten ie at least 2 slices bread for 6 weeks prior to testing.

[Jemari in reply to Clutter]

Thank you, Clutter, my GP said to eat gluten for two weeks. I'll get onto it right away.

[Jemari in reply to Hidden]

The FB page looks great, thank you again for pointing it out to me

[Spanglysplash]

Nightshade veg can cause lots of problems for people with Hashimoto's as well as dairy and gluten.

[Jemari in reply to Spanglysplash]

Thank you, so many of my favourites in those. It's hard giving up so much sometimes, but worth it for good health.

[greygoose]

I haven't taken LDN (yet) but my understanding is that you start on a low dose and work up to 4/4.5.

I Don't have a doctor that will prescribe, which is why I hestitate to take the plunge. So, please, please keep us updated with your progress. I can't wait to hear how you get on.

Hugs, Grey

[Jemari in reply to greygoose]

Will do, thank you. The inconsistencies in the NHS are very frustrating.

Return hugs!

[greygoose in reply to Jemari]

Well, I Don't have to deal with the NHS, because I live in France. But we have our own problems, as you can imagine!

[rsae56 in reply to greygoose]

You can join the group on fb

LDN Receach group- Low dose Naltrexone

There you can get info of how to get a prescription from another doktor if your GP will not.

Lots of great stuff on their info page.

I m having an appointment the 3.11 at a pain clinic (living in Denmark) to start LDN. I wouldn't hesitate to give it a chance.

[greygoose in reply to rsae56]

Well, I'm sure you're right. And if i were able to attend a pain clinic to start LDN, I wouldn't hesitate, either. But that's not the case, I'm afraid.

[rsae56 in reply to greygoose]

Sorry but you misunderstood me. I simply ment that on the fb group you can get info about doctors that prescribe LDN.

No connection to the pain clinic... my fault

[greygoose in reply to rsae56]

Ok But I doubt they know anything about doctors in France. Joined anyway.

[Jemari]

Hello again! Sorry I have been so slow with an update.

I've been on LDN for some months now and I feel great. My energy levels have improved tremendously. My digestive issues have been a lot better (although I still have a few upsets). My skin (touch wood) hasn't flared up either, and I've not had any bad allergic reactions. I do have very vivid dreams sometimes, but I don't mind that. It has helped to transform the way I feel, so much more like my "old" self.

My hair still falls out, my eyebrows haven't grown back (I can hope!), and my nails flake like crazy, but these are probably absorbtion issues. I still need to see someone about this.

Sadly, I had to change my GP and my new GP says he won't prescribe NDT or LDN until I see an endocrinologist, who will have to approve it. That will be like finding a needle in a haystack, I fear. He also won't give me my B12 injections, now 6 weeks overdue, until he gets my notes from my previous GP. It is so disappointing, like stepping back in time. I won't give it up and have found alternative supplies, if necessary, because I just feel so much better on this combination. I do get fed up having to battle with the NHS though.

Hope you are all keeping well and happy.