RLS Blood Test

[Boxer215]

I have just had a comprehensive blood test & will be grateful if someone can remind me what results to look for before I meet my GP. Thank you.

[Hidden]

You should be able to get all your blood test results online if you have requested access.

If not you can ask for access or ask for a printout.

I tink you can rely on your GP to tell you if any of your results are abnormal.

The only result that you really must know the exact result for is your ferrtin level.

If it less than 75 then you could start on an over the counter iron supplement.

If it over 100, but under 200 then you'll have to look further.

[Madlegs1]

If your GPs name is Dr Acula ,then you should keep well away from him ,in all matters regarding Blood. 👻Ah! Come on! It's very late on Paddy's Day!😝💚. And I've been watching Endeavour all evening.😏

[WideBody]

Ferritin > 100

Transferrin Saturation Percentage > 30% under 20% make a plea for an infusion

Iron test should be done in the morning and in a fasted state. Do not supplement with iron at least one week prior to the test and TELL your Doctor your have been supplementing. Supplements will inflate everything.

[DicCarlson]

This is a good explanation of iron test results...

bloodtestsresults.com/iron-...

[Graham3196]

From what I have read if you have RLS and your Ferritin is less than 350 then the first thing to do is raise it to 350. In some fraction of the RLS population this will produce an immediate relief. In others relief may come after a while, perhaps12 weeks, Some will have a partial relief and some will find no useful effect. This will usually require an intravenous infusion (IV) AND you must make sure that your doctor does not have a good reason not to do it. I found many doctors who advised against it but couldn't answer the question "What might be the danger?" Generally some silly answer like "All injections carry some risk such as infection" All my GPs agreed that they couldnt identify any good reason why a normal healthy person would be harmed by increasing ferritin to maybe 700. They agreed that if I was older then they would worry about my kidneys and liver and perhaps other important bits. But 350 was certainly safe because I was otherwise healthy.

Some patients find it is a temporary fix but it can last for years in some cases. Some patients for whom it is temporary reveal some condition causing loss of blood internally. I understand that this includes things like ulcers, cancer and other things that are probably good to know about so they can be treated.

Big anticlimax for me was that it didn't help me.

I was interested that the site DicCarlson referred to says fasting is not required for ferritin testing yet American doctors apparently recommend it and some Australian doctors say to fast. Just to be consistent I always fast, Its easy to fast for 10 hours. It is also recommended that you get the blood tested by the same laboratory every time because high ferritin levels are hard to measure and different labs might use different processes that might cause fluctuating and misleading results. I might have experienced this when I accidentally used a different lab and my ferritin dropped from 250 to 120 (approx) and then recovered to 250 again at my regular lab with no change of treatment.

[Hidden]

Further, as regards ferritin, guidelines do suggest an oral iron supplement to start with if your ferritin level is less than 75.

It is possible to raise ferritin in this way to at least 100, at whch level I've read reports that say about 50% of RLS sufferers will have some benefit.

If ferritin is above 75 then it becomes difficult to raise it further because of the limitations of how much can be absorbed due to the action of a hormone, hepcidin.

Hepcidin's normal function is to limit iron absorption. Some people are unfortunately born with a hepcidin dysfinction and subsequently develop a condition called haemochromatosis. Unless this condition is treated, and continuously treated for life, then it is fatal. Sufferers often experience disabilties because of it.

An IV iron infusion is a more effective way of raising the ferritn level. This is because it bypasses the absorption limitation caused by hepcidin. Absorption is 100%.

Research published in 2020 suggested that it is fully effective in 60% of RLS sufferers who subsequently require no medication. Another 20% gain partial benefit, but 20% gain no benefit at all.

The treatment was said to be effective for 24 weeks after which another infusion is required.

Unfortunately such infusions aren't so easy to access in the UK. They are not recognised as a treatment for RLS as yet. Hopefully they will become so. You may be able to get an NHS haematologist to prescribe an infusion. You could pay privately.

Because an infusion bypasses the hepcidin limitation there is a possibilty of suffering the same consequence as in haemochromatosis i.e. iron overload.

However, no doctor, presumably, would run the risk of this and would at least carry out a test for serum transferrin saturation before considering it.

It would be dangerous to give an iron infusion to somebody with a transferrin saturation over 45% as this is indicative of haemochromatosis.

[WideBody in reply to Hidden]

I just wanted to add that I have a huge problem absorbing iron. Hence I now have to supplement. 8 weeks after my infusion, my ferritin was 114. In 4 months with oral supplements I raised my ferritin to 273. My ferritin is currently around 300 and I am trying to bring it down SLOWLY.

Personally I did not see that much benefit above a ferritin of 200, so I plan to keep it there.

I should also mention, I was low in Vitamin D and that seems to be common, both in the gereral population and with RLS suffers. Vitamin D blocks hepcidin which blocks the absorption of iron. So if your low in Vitamin D, it can affect iron absorption.

[Hidden in reply to WideBody]

It doesn't sound to me as if you do have a problem absorbing iron. If you can raise your ferritin from 114 to 273 with supplementation I believe you have done very well. It's accepted that once ferritin is 100 it is extremely hard to raise it any further.

However, I am surprised that the infusion only raised it to114, but you do say that was after 8 weeks only and it can take 3 months.

I have heard that most of the population is vitamin D deficient and in the UK at the moment there is a government scheme whereby you can get it for free.

As you say correcting vitamin D deficiency can help relieve RLS.

I'm not sure why you want to reduce your ferritin unless you want to reduce your iron intake. The main point is what your RLS is like. Infusions are supposed to have a 60% success rate and another 20% have partial success. It doesn't work at all for 20%.

If your ferritin is currently 300 and you still have some RLS then you could try raising it further

[WideBody in reply to Hidden]

Getting the infusion was amazing. Supplements at first were helpful, but I do think there is a point of diminishing returns. Mine benefits stopped a bit ago. I would like to keep my ferritin around 200 for several years to help build my iron stores.

I believe that long term low dose administration of iron is preferable to yearly 1000mg injections. Not everyone can accomplish this, i fully understand that. I was told to keep supplementing at a low dose to “keep the motor going”, but I am testing every 4 months till things smooth out (hopefully)

Once I realized I had a deficiency, I started to wonder if there might be others. It is a bit more difficult because Vitamin D, magnesium etc.. do not have tests for “stores” just levels. The human body is really good at maintaining levels to the detriment elsewhere. Vitamin D has been helpful, magnesium and potassium even calcium (yes it is) are on my list to take daily.

I have turned into a pill junkie and most of them are mineral supplements. 10/10 way better than any dopamine agonist drug.

I honestly believe it’s helping.