Iron Results

[puzzler1]

Hello to everyone.

I'm sorry I've been off the forum for so long but really don't have much to add to the constant wonderful advice given here.

My RLS is still very bad every day in arms and legs (always scoring 39/40 on the RLS rating scale) despite taking Temgesic (buprenorphine) and gabapentin.

I have a very helpful and understanding doctor in 'Healthcare for Older People' department at the hospital and they recently agreed to test my iron levels.

The results are:

iron 9.6 umol/l

Transferrin 32.4 umol/l

Transferrin saturation 15%

I'm also taking steroids for Polymyalgia (along with omeprazole, TheiCal-D3 &, Alendronic acid (once a week)), Levothyroxine, Edoxaban and Etzetimbe.

The doctor has suggested taking an iron table alternate days but I'm pressing them for an iron infusion which I have had previously in 2020, because I have a lot of trouble with my stomach which I put down to the number of tablets I'm on.

I've looked at the recommendation for iron levels but they often have different names or units. Could anyone help with some guidance please. I've noticed that high iron levels seem to be recognised as being more important now and wonder what levels of iron I should be aiming for, for refactory RLS sufferers.

Thank you

[Joolsg]

You need serum ferritin levels to be above 200ųg ideally. You haven't listed serum ferritin.Your serum iron level needs to be above 60ųg. And transferrin saturation above 25%.

The omeprazole stops iron absorption and so won't be helping.

If you can try gaviscon or gaviscon advance, they would be better for RLS. Talk to your gastro enterologist..And try a really good probiotic like Symprove or VSL to improve gut microbiome.

So yes- you need an iron infusion.

Which is your nearest hospital? Some haematology departments are aware of the link between low brain iron and RLS and will arrange an infusion.

What dose of Temgesic are you taking and when? I'm surprised it isn't covering your symptoms.

[puzzler1 in reply to Joolsg]

Hi Jools, thanks for your reply. I've asked for the missing ferritin result. Hopefully it's just an omission off the letter and I won't have to have another blood test.

So is a ug the same as a umol/l ??

Yes, I'm surprised the temgesic doesn't cover my symptoms but I can only take 3 without suffering bad side effects with hot flushes. I also take 7 gabapentin split into 2 doses.

Thanks for all your help.

[Joolsg in reply to puzzler1]

msdmanuals.com/professional...

The umol/l is a different measure than ųg but your iron level still indicates deficiency.

3 x 0.2mg of temgesic is average but many people need higher doses.And Buprenorphine definitely causes sweats/hot flushes.

I know pregabalin has been used to help hot flushes. Maybe switching to an equivalent dose of pregabalin (100mg pregabalin = 600mg gabapentin) might reduce the hot flushes.

pmc.ncbi.nlm.nih.gov/articl...

Do you take temgesic at night only?

[puzzler1 in reply to Joolsg]

Yes at night only.

I currently take 4 gabapentin at 8.15pm, another 3 at 9.00pm. Then 2 temgesic at 10.00pm and then another 1 temgesic at 10.30. But it's not working!

Thanks again

[Joolsg in reply to puzzler1]

You clearly need a higher dose. Or switch brands. I find that only ACCORD Buprenorphine gives me 24/7 relief. If I take Sandoz or prefib brand- I get 2 hours of RLS every evening between 8 and 10pm.So ask for Accord Buprenorphine and take 0.2mg at 9-10pm and 0.4mg just before you fall asleep.

Or increase to 0.8mg and try switching to pregabalin to reduce the hot flushes.

[SueJohnson]

Your Transferrin saturation 15% is below 20% which is regarded as the minimum.

Your other results are also low, but you don't list your ferritin which is the most important one. You definitely need an iron infusion. 8 weeks after you have it ask for full panel iron test to get your ferritin included in the results. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.

[SueJohnson]

Your Polymyalgia which causes inflammation. Inflammation causes hepcidin to be released Patients with ongoing inflammation poorly absorb iron from the gut because inflammation increases hepcidin so tell your doctor that since iron tablets won't help you as a result.

Omeprazole makes RLS worse for most. Assuming you are taking it as an antacid I suggest you switch to gaviscon advance. Be sure it is the Advance one. Don't take your antacid within 2 hours of your gabapentin and also if you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason.

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods).

[TeddiJ]

The fact that they did not test your ferritin, when you have such terrible RLS...AND you are discussing a possible iron infusion, tells me they know nothing about RLS (or maybe even key iron issues).

Can you go to any of the doctors recommended by our group instead, so that every inch isn't such a battle? Any dr. who truly knows RLS knows to include a ferritin test.

[puzzler1 in reply to TeddiJ]

Thanks for your reply TeddiJ. I'm hoping the missing ferritin result is just a typo omission off the letter. My doctor is actually very supportive but is off on maternity leave at the moment. Thanks again

[SueJohnson in reply to puzzler1]

Her office should have the results.

[SueJohnson]

Is that the NHS Royal Devon hospital located in Exeter? I keep a list of good doctors in case anyone else asks, so it would be great if you could give me your doctors name.

[puzzler1 in reply to SueJohnson]

Hi Sue, Thanks very much for your replies and advice. I'll talk to my GP about changing the antacid and I'm also going to ask about changing the steroids as violetta254 suggests.

Regarding my hospital consultant, she works in the 'Healthcare for Older People Dept' at the RD&E Hospital. Dr Suzy Hope. She has been excellent with regards to letting me try a variety of medications and back in 2020, after some persuasion, allowed me Temgesic as recommended by Shumba on the forum. At the time I was still coming off pramipexole. The temsegic was an absolute lifesaver but gradually as I tapered right down and stopped the prami, it's effect became much less.

I currently take 4 gabapentin at 8.15pm, another 3 at 9.00pm. Then 2 temgesic (2x200mg buprenorphine) at 10.00pm and then another 1 temgesic at 10.30. But it's not working!

I would recommend that any older person (I'm 78) who is struggling to find a neurologist, that they see if there hospital has an 'older person' dept because I think they are much more likely try drugs to make you feel more comfortable and may be more accessible. But generally we have to suggest what to try (with help from you forum experts) and usually they agree to prescribe what I want. They are not RLS experts - but who is, in the NHS? I get a lot of support from my husband on this. We also sent a video of my night-time pacing and swinging my arms trying to find relief, and I think this made a significant impression on my doctor. The problem is, if you don't show them how you're suffering, they just don't GET it.

They also let me have botox recently but it was a minimum dose which had no effect. I'll post separately on that with doses etc.

Thanks for all your help Sue, my husband keeps me up to date with all your help on the forum along with Jools, madlegs, and all the others. Are you UK or USA based?

[SueJohnson in reply to puzzler1]

Thank you for the name.

If you can't get an iron infusion there is Doctor Wayne Thomas a haematologist at Plymouth.

On the gabapentin , the usual way to take it is 600 mg 1 to 2 hours before bedtime and then 100 2 hours before that. If you don't want to take that much at one time, I would at least switch it so you take the 400 mg at 9 and the 300 at 7. Taking them closer to 2 hrs apart means less is absorbed.

[violetta254]

If you are taking steroids for Polymyalgia Rheumatic, , they can make RLS so much worse and even cause RLS (I assume you are tapering down as you are supposed to do with PMR?). I couldn't take steroids at all without staying awake all night with RLS. Would your doctor consider moving you to methotrexate for PMR? My husband took methotrexate for PMR after the initial dose of steroids and it worked just as well and has less side effects than steroids. He is now off of PMR meds completely.

[puzzler1 in reply to violetta254]

Thanks very much for your reply. That's very interesting and I'll ask my doctor about the methotrexate. I've been taking the steroid (prednisolone) for over a year and started on 15mg and I am now down to 3mg a day. Everyone (including doctors) tells me how bad it is to take steroids!

[SueJohnson in reply to puzzler1]

methotrexate is safe for RLS.

[violetta254]

3 mg is very close to getting off of the steroids. Has your RLS improved any as you reduced? If you haven't had any flares, you should be off in a few months, if you start to get flares, then methotrexate would be much better. How fast are you weaning off? That can cause a problem too if you go too fast. Don't go any faster than about 1/2 mg a month.