First post in RLS forum help / advice needed

[hashiman]

Hello all I wonder whether any one can offer advice on relief from RLS symptoms which have now become unbearable. I have been diagnosed with Hashimoto’s Thyroiditis and Low T other than that I am generally fit and well , but I suffer terribly with insomnia , I was diagnosed wrongly with sleep apnoea last year and unsuccessfully tried Cpap after a few months the consultant said I should have never been prescribed the machine and that was that ,but I never got to the bottom of my insomnia , recently I watched a programme on BBC I think about people with sleeping disorders and one guy couldn’t sleep and his legs were moving none stop all night and my wife said that’s exactly the same as you,I’ve had this for years tried a bar of soap at the bottom of the bed which made no difference. A couple of months ago I tried taking 30mg of codeine before I went to sleep this worked amazingly for a month but then stopped working so I upped dose to 60 mg and it worked for a short while but now I’m back to square one with 3 - 4 hours sleep per night . Can anyone offer any advice as I’m at my wits end with this now. I do supplement iron solgar 25mg and my last iron check (ferritin)was 256 ug/L range 30-400.

[Hidden]

Hello, sorry to hear about your insomnia. Thats always been the worst aspect of RLS for me.

Some information.

It's likely that your RLS is due to your hypothyroid. I do know that this can cause RLS symptoms and they may improve, but not necessarily as your thyroid is treated and becomes stable.

About 80% of RLS sufferers also suffer Periodic Limb Movement Disorder (PLMD). This is where, as you describe, your limbs, legs or even arms move involuntarily usually in your sleep. Many PLMD sufferers do not realise they have it unless someone tells them!

PLMD doesn't necessarily wake people up, but it could do, even if you don't realise you've been moving in your sleep. The movements can be quite violent.

It's suprising that if you had a sleep study this wasn't picked up.

What I'm not clear about is whether you have insomnia because you can't fall asleep due to the symptoms OR you can fall asleep but wake up shortly after. Or, heaven forbid, both!

Either way, if you're looking for medical treatment that will help you with this, symptoms, insomnia and PLMD the treatment is more or less the same.

Opiates are known to relieve RLS symptoms and Codeine is an opiate, so it's not surprising that you found it helped at first.

However, you should not really be taking an opiate for RLS and especially doubling the dose without consulting a doctor. In addition, codeine isnt the best opiate for RLS anyway. It's not really potent enough, meaning there's a poor ratio between its effects and its side effects. If you take enough to be effective for your RLS, side effects will be signficant, not to mention tolerance and dependency. Since you felt you had to increase the dose, this is tolerance and it can lead to addiction.

Thdere are safe ways of taking opiates, that isn't one of them.

If you consult a doctor you may find either that they're unwilling to prescribe a opiate for RLS, or they may suggest seeing a neurologist to see if they will prescribe an opiate. It's possible , but unlikely they'll give you a prescripton. Oxycodone is a more usual opiate for RLS. There are others if you read other posts on this site.

What's more likely is that they'll be willing to prescribe a "first line" RSL medication i,e, one's that are tried before anything else.

I believe, if they're not up to date with RLS treatment. quite a few doctors may suggest a "dopamine agonist", pramipexole, ropinirole or rotigotine. (You may be told their brand names , check the generic name).

This is NOT a good idea. It is now recognised that the long term problems these drugs cause can far outweigh their benefits. It seems many doctors still prescribe these without warning of these problems or even knowing about them.

More recently and now more increasingly accepted are a class of medicines known as gabapentin or pregabalin. These may have their own problems, but they do NOT have the same issues that the others do, so are preferable. They are also better at helping sleep than the others.

You can try all the non-medical remedies that you may read about in this forum, as well As you have Hashimotos, they're probably less likely to work. I wouldn't say that ferritin, which you seem to know about, is a problem for you.

It helps to read as much as you can about these and there's no harm in some healthy scepticism. There's no way of telling, for some of what you might read, whether it has any scientific basis, is safe or even if it's sensible.

Bar of soap?

[hashiman in reply to Hidden]

Hi Manerva ,

Sorry for the long reply !

Many thanks for taking the time to reply to me with such a detailed overview. Just for some background info, I was diagnosed with Hashimoto's and Low T four years ago but probably had Hashimoto's in all my adult life, if not earlier and Low T was diagnosed probably 2 - 3 months after the Hashimoto's diagnosis . I am currently taking 175 mcg of levothyroxine TSH is optimal so this is now as stable as possible and I have recently swapped Nebido injections for Testogel as the the injections were effectively running out after about 8 weeks leaving me in a pretty horrible sluggish state for 4 weeks (the injections were given every 12 weeks) it has been hard knowing what was making me feel so poorly Thyroid or Low T but now using the Testogel I certainly have a zest for life again, which I used to just put down as growing older (I am currently 49) I am in no means ill or unfit though I go the gym 3 times a week and practice yoga 2 times a week(prior to COVID restrictions) and cycle regularly, although I cant help thinking this exercise sometimes makes my RLS worse especially my calves. So with this increased 'vigor' I now want to solve the final piece of my jigsaw which is Insomnia caused in part I think by RLS ?

When I had my sleep study for sleep aponea the hospital sent me home with a device which I put on and it monitored my heart and oxygen levels (I'm guessing) but I'm also guessing here that it didn't monitor limb movements as there were no sensors in these area's . When you are prescribed CPAP you have to declare to the DVLA (Driving agency) that you are being treated and if you don't use it for the prescribed amount of time per night you get your driving licence taken from you and as a company director this would be fatal to my business so when the consultant said it wasn't working as my condition wasn't bad enough and took the machine back I didn't pursue my condition any further due to the gravity of the situation that having no driving licence would create. Just for note although I am exhausted in the day on occasion but I am not sleepy and if I was sitting in an armchair would unlikely fall asleep.

So onto sleep when I go to bed I have no problem falling asleep I just have a problem staying asleep . I generally go to bed around 10.30 pm and awake between 12am - 3 am and struggle to fall back to sleep until around 4.00 am.more recently I just lie awake and take the view that at least my body is having a rest ! I have always been a restless sleeper when i was young i used to drive my mum nuts with the state of the bedclothes in the morning and no do my wife , I am always trying to find the cold bit in the sheets for my legs .

I guess the best thing will be to now approach my GP after the coronavirus abates and ask on the availability of gabapentin or pregabalin thanks to your advice.

A bar of soap in the bottom of the bed is an old wives tale for cure to restless legs apparently but I would give anything a go to try and stay asleep !

Many thanks again

[Hidden in reply to hashiman]

Hello again.

Thanks for sharing more detail. Not so long.

I second what Lotte says about consulting Dr Buckfuhrer as he is an internationally recognised expert in RLS. Not many RLS experts around I'm afraid.

Here's a link to the web site

rlshelp.org/

I think Lotte meant "You should NOT experiment"

I'm sorry, I misunderstood your previous response a little, I thought Low T was Thyroid, now I'm wiser. However I'm not sure if it's a factor in your RLS.

I see the home monitoring you had wouldn't have picked up the PLMD, which you certainly seem to have. The pulse oximeter (thing on your finger) would have picked up your oxygen saturation levels and CPAP is usually only prescribed if it dips below a certain level.

I'm still of the opinion that your early waking is related to your RLS/PLMD.

Since your Thyroxine levels/TSH are stabilised, I'm guessing that it may not be the only factor in your RLS, there may be, at least, an element of idiopathic RLS in there.

The gabapentin/pregabalin is just my suggestion. Dr Buckfuhrer appears to have a greater tendency to recommend an opiate, but see what he says.

If several things works for your RLS then it's a matter of personal preference.

Sorry, bar of soap is a joke. This forum does see quite a few posts from people convinced it works, along with drinking tonic water, various herbal remedies, and high tech sounding electronic devices that claim to work without any power supply or even any contact with you.

[hashiman in reply to Hidden]

Thanks so much for your advice I will email Dr Buckfuhrer prior to arranging an appointment with my GP . Things have been a lot better the last couple of nights I’ve got a portable aircon unit and I’ve been sleeping with that set a 17 degrees I actually got 7 hours sleep both nights ! The cold seems to calm my RLS down .

[Hidden in reply to hashiman]

Great, I also find that I sleep better if it's cooler. Don't need aircon here though, just turn down the radiator.

[LotteM]

Bi Hashiman, Manerva has given you good info. However, Hashimoto's is a very serious and progressive disease, I understand. It may be wise to consult a knowledgeable dr. The easiest will be to email Dr Mark Buchfuhrer in California US. He answers quickly, within 1-2 days. His email is [e-mail]. He also has a website with lots of information, especially about all kinds of meds that can (or shouldn't) be prescribed for RLS. His website, rlshelp.org, also lists many patient letters and his replies. Because of your Hashimoto's, the standard approaches may not apply.

I second Manerva that you should experiment (too much) on your own. In the UK it is difficult to find a knowledgeable doctor, the best is to have a GP that is willing to listen and do her/his own research. We can point to loads of info re the standard approaches, but, as said, you are far from a standard patient. Good luck and keep us posted. And, do come back if you have more questions etc.

[hashiman in reply to LotteM]

Hi LotteM,

Thanks so much for your reply. Thanks for the contact details for Dr Mark Buchfuhrer, I will certainly send an email to see if he can point me in the right direction with treatment. As I responded to Manerva above , once the the Coronavirus abates I will book an appointment with my GP and pursue a treatment but any advice prior to this appointment would be invaluable as I have found out using this forum for my thyroid treatment.

Thanks again for your help