It is worth persevering!

[Desperate100]

I thought fellow RLS sufferers would be interested in the following sequence of events. Following advice from people on this website I wrote the following letter to my doctor:

"Dear Dr C,

I have suffered with severe Restless Legs Syndrome for four months now, often not being able to get to sleep until 5 am. This has affected my life considerably, I dare not drive, for example. I saw Dr B about it, but she initially prescribed Ropinirole for the condition, which research shows eventually makes the situation worse for between 40 -70% of people. Life would become unbearable if this happened to me. Dr B went on to prescribe Gabapentin, but not in the quantity needed for it to work on RLS.

In any case the most recent research – extracts and references enclosed - has shown that if a person suffering with RLS is deficient in certain iron levels, an intravenous infusion is the best first line response. Please note that I have already been taking oral iron supplements for nearly two months.

Dr B agreed to specialist blood tests for iron, and I enclose the results. As you can see from the attached research, I am below the normal range for Transferrin, and below the level of Serum Ferritin recommended for people suffering from RLS.

Dr B considered that there was no more action to be taken, so I did some research of my own which resulted in my contacting the Haemotology Department at St. George’s hospital. I posted the letter on Thursday 15 September, and they have just rung me today (20/9) to say that they will consider my case, but will need a referral from my doctor. I would be extremely grateful if you would do that for me. Their address is: Haemotology Department, St George's University Hospitals NHS Foundation Trust, Blackshaw Road, London SW17 0QT.

Many thanks for your consideration,"

Today I got a text from Dr B which read as follows:

"Thank you for your letter which was addressed to Dr C but he is on leave.

I have made the referral to St George's as requested and will be very interested in the outcome as this may be useful learning for me. I note that I had not personally seen your recent blood test results.

Kind regards, Dr B."

Well, it might be that an infusion does not work for me, but it might, andhere we have a GP saying that she is willing to learn! She is part of a large practice, and with any luck she'll pass that learning on!

Thank you to everybody in this group who has helped me get this far!

[martino]

it’s good that the doctor has helped you and is hopefully passing on the knowledge gained

[SueJohnson]

Terrific news and also that she is willing to learn when so many doctors aren't.

[Joolsg]

Absolutely delighted to hear this. Dr Rhodes & the haematology team at St George's are wonderful. They gave me an infusion on compassionate grounds in 2018 and have also treated at least 2 others for RLS.

I really, really hope it works for you. They'll do a follow up blood test after 6 weeks and you'll know within a month if it is helping.

If it works, we should report the results somehow so that other UK hospitals follow & start to give iron infusions routinely as soon as someone is diagnosed with low ferritin and RLS.

[Hidden]

I think Dr. B has become disillusioned with iron infusions. He refused TeddiJ an infusion and she saw him in person. And I’ve heard of other people he said no to. There might be a good reason he is less enthralled these days? The rule on here (self-proclaimed) is that first you try oral ferrous bisglycinate (around 50mg) an hour before bed on an empty stomach. I know you use the patches (and I have as well) but they’re sketchy at best. One trial showed that they did not raise serum iron. Plus the iron enters your bloodstream much more slowly with the patches such that if you put it on before bed not much will have entered your blood by the time you’re ready to sleep. I would try the oral iron before you run for an infusion.

[TeddiJ in reply to Hidden]

Hi-I took note of this post, too, until I realized they are not talking about THE Dr. B, but rather a Dr. B in the UK.

You are right, THE Dr. B refused to give me another infusion. One reason is because I had an infusion in April 2021. He also did not feel that I should get my ferritin back into the 300's after it had dropped into the low 200's. He stressed to me that if the correct iron is not used, then infusions do very little for RLS patients.

[Desperate100 in reply to TeddiJ]

Yes, sorry, I'm in the UK. A.d my 'Dr B' is a woman.

[TeddiJ in reply to Desperate100]

That's ok-I saw the pronoun in your post, which clarified things quickly-lol. Best of luck!

[Jumpey]

Go you! Well done.Great doc too. Good luck with the infusion.x

[Gmc54]

hmm, my lady doctor is a Dr B, you don't happen to live in south Lincolnshire do you...... long shot I know

[Desperate100 in reply to Gmc54]

Hi! No, I'm in North Hertfordshire.

[Qalba]

Thank you for sharing your experience. It provides a roadmap for others to research and persevere. I hope an iron infusion occurs and brings you relief!

[janland]

what an amazing story .. so hope you can get your iron infusions and get the restless legs sorted .

I know exactly what it’s like having had this condition with periodic limb disorder as well dreadful jerky legs at night for hours ..

I’ve had soooo many blood tests but always told “normal iron levels “.. and nothing gets done except I’m offered those awful drugs that give augmentation . I tried one once and felt so I’ll next day sick and dizzy

I just don’t want to go down the drugs road especially as the gps haven’t looked into what the cause of it is ..

I had blood taken last week and so next week I’ll have results and speak to gp on phone again and I’m expecting her to say normal again but of course it wasn’t a specialist blood test ..

It needs to be a finely detailed blood test for ferritin and serum transferrin which I’ve actually never heard mentioned before ?

It’s that the blood iron that gets into via blood brain barrier ?

I feel so tired each day through lack of sleep .. I just wish the gps would help me .

Best of luck to you

Regards

Jan

[SueJohnson in reply to janland]

It needs to be a full panel iron test. If you haven't had your ferritin tested, that is the one to ask for, and of course normal which many doctors will tell you is not normal for those of us with RLS. You say you don't want to go down the drugs route, but why not when they can completely control your RLS? Certainly you don't want ropinirole nor pramipexole but gabapentin and pregabalin have no risk of augmentation. Why suffer when you don't need to.

[TeddiJ in reply to janland]

Jan-until you get your plan sorted out, order some red vein kratom powder online, as "tea." Possibly from Scotland, since you are in the UK. It will stop the rls in minutes and give you much needed sleep. Many of us on here have used it or do use it, no prescription needed.

[Hidden]

How do you not need the iron every night???

[Hidden]

Gotcha. Does the iron provide immediate relief for you?

[SueJohnson]

If you do take it every night - take it 24 hours apart.

[Hidden]

How much iron do you take?

[Hidden]

Well, I don't blame you. Even so-called "mild" RLS is usually enough to keep me awake. Why suffer? Take the iron every night. OR, if you feel like being wowed, wait till the "tingling" starts then take the iron and see if you can feel that sensation evaporate after about an hour.