I am reading here a lot about Ferritin levels. I have been posting recently about severe Augmentation issues from Pramipexole and a neurologist is now putting in place plan to use Carbamazapine in increasing levels with the aim to ultimately reduce/eliminate Pramipexole. My body struggles with some of these potent drugs as much as it does Pramipexole. However I have just had yet another blood test. My GP this morning told me that all my levels were normal. Something in me made him ask about my Ferritin levels. He reeled off the last three blood tests : 13, 23 and 15. He said these were within normal levels.
Again something in me caused me to I put "RLS and Ferritin levels" into Google. I was horrified by what I was reading. My ferritin levels have always been as low as these for years and years. Then I land here and read that ferritin levels should be 150 + . Even my neurologist has not mentioned anything to my doctor other that to repeat blood tests and "ensure her ferritin levels are replete" whatever that means.
I feel utterly confused and saddened to think that along with years of trying to handle augmentation that has gone on unrecognised, my ferritin levels are also being seen as 'normal'. I am unsure how to get this sorted out once and for all. I just feel totally defeated. Does anyone know what these low Ferritin levels mean???? I feel so thankful for the support I know is available here.
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HilsK
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Yes, the doctors are correct any level of ferritin above 12ug/L is "normal".
This would mean if YOU were "normal" in that you did NOT have RLS then your BRAIN iron levels would be the same as anybody else who is normal.
However, you are not normal, in the sense that you have RLS. In order for you to have normal brain iron levels, your ferritin needs to be about 200ug/L.
I don't know what the neurologist means by your ferritin being "replete", but it's clear your GP is completely ignorant!
It is well documented that if anybody with RLS who has a ferritin level below 75ug/L, seventy five, then they should start on an oral iron supplement.
I might have written you before about this, if so, sorry for repeating it. Ignore your GP, buy some "gentle iron" ferrous bisglycinate from H&B and take it every two days, NOT daily. Swallow it 30 mins before or 2 hours after eating, in thecevening, along with a glass of orange or a vitamin C tsblet. Take a double dose, but only every other day.
If you want to sort this out, you can raise your ferritin level to at least 100ug/L by oral supplementation. It may take several months, but you don't need a doctor. Ignore your GPs misinformation.
If you wish, you could give your GP the above link, and the link below which shows that the very FIRST thing done to treat RLS is to consider iron therapy if ferritin is between 50 and 75ug/L.
This is an anti-convulsant used to treat epilepsy, nerve pain, neuralgia and bipolar disorders.
I've never heard of it being used for RLS. I've never heard of any RLS expert recommending it. The National Institute for Health and Care Excellence (NICE) don't recommend it.
The alpha 2 delta ligands gabapentin and pregabalin ARE recommended for RLS and they are anticonvulsants, but they work in a different way.
Here's a link to the NICE prescribing information for RLS. All recommended drugs are as listed here.
The neurologists prescription of carbamazepine seems really idiosyncratic and without evidence. I wonder if your neurologist explained why this particular drug.
I hope it works, it may do, but as I say, there's no evidence that it does.
Thank you. I know you are repeating some of what you have said .. I just feel the medical profession are continually at loggerheads with everything about RLS etc. If I showed you the consultants letter to my GP, you’d cry. And he’s working at one of the top neurological centres in the UK. Holland and Barrett are getting a visit in the morning . Thankyou again.
I don't think I' d cry, I'd probably get very angry.
I think overall that the NHS is rightly reputed to be one of the top health services in the world, but I do despair at not just the ignorance and poor judgement of some health professionals, but even moreso the arrogance and unethical conduct of hopefully a minority.
Unfortunately this is not just in relation to RLS.
It's not just that some doctors are ignorant or make mistakes, it's when they refuse to acknowledge these or even try to cover them up. Serious life threatening mistakes! I'd even say fatal.
I do think that some consultants particularly do feel they have some power and authority over people. I think this is tacit rather than conscious. They forget that they are public servants and therefore accountable to the public.
A lot of us have cried repeatedly because of doctors and their mistaken treatments.
Then, as Manerva suggests, we get angry. Then we get smart by reading and reading and reading.
This is a DIY disease, sadly. Hopefully, after learning everything we can - which is a lot - we will find a doctor who listens. A doctor who does not take his ego to the office. I am lucky enough to have one of these, but it still took years of study and difficulty. And tears.
Just one observation- " normal" is a meaningless judgement with regard to blood tests, it should read " within the range experienced by this particular laboratory"
Secondly- when the neurologist asked that ferritin be kept " replete" he would have been expecting it to be kept at the very top end of that range, is at least 200 or 300 depending on the particular lab.
"Replete" denotes what our family consider "full to busting" after being at Grandma's for Sunday dinner!
( Yeah, I know-- I was never good at the numeracy lark)
"Oh My Holy God" is what he prison guard said when he discovered Andy Defrense missing from his cell in Shawshank Redemption movie.
I'll use that here...OH MY HOLY GOD!
I wonder often about RLS suffers that simply had low iron stores with a somewhat simple solution to their RLS, but were led down a different route - with a pharma solution, and days and nights of agony. My RLS story could have easily gone this same way.
I had raging RLS - even in my arms - no sleep - maybe an hour or two per night. Thank God I discovered the Johns Hopkins website and this one quote "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy on average improved RLS symptom after 3 months." My Ferritin level was 49, percent Saturation was 22%. I "discovered" iron by using Blackstrap Molasses (it contains a small amount of iron) and is frequently listed as a home remedy. The first night the Molasses "cut into" the RLS. I started on Ferrous Bisglycinate Chelate and it literally stopped the severe symptoms within a week. Ferretin went to 105 within 3 months.
Docs originally didn't know what I had. I had to tell them it's RLS. They then offered a DA - Requip and said it was the ONLY solution. Thanks to this forum and other websites - I knew better.
Love your upbeat reply in a day of many tears. Thank you so much. I too read the John Hopkins site details of ferritin .. showed it to my GP today. He doubts me because of what the idiot consultant neurologist had written. He has asked for a 2nd opinion.
I have told him I am not going to hang around and wait till he sees sense. I have given him 5 other references too to check out.
I have today, and there's more to this than I can write here, put in a formal complaint to tyeh hospital against the consultant. He will have to meet with me in person. I haven't ever done this before but I have had enough.
The last straw came with the new IRLSSG diagnostic guidelines for RLS. Because during the severe augmentation I experience (due to 22 years on pramipexole), the extreme fatigue I get in my muscles can cause severe cramp ( I dared to mention the word 'cramp') The consultant has told me that means I don't have RLS ... because I don't now fit into the new guidelines: Number 5 to be exact. Can I have augmentation of RLS from pramipexole without having RLS ??
His diagnosis now is : "Widespread pain syndrome and involutionary limb movement". I have told him to go and find a rugby player with cramp and confront him with that diagnosis because whatever words the rugby player uses to describe him wont be a controversial as the ones I'm dreaming up!
Box ticking, non-listening medics are so very dangerous.
You can see why I need some sanity and a way to help myself. Thankyou for making me smile. XX
Just a reminder that some of the doctors who are widely respected such as Doctor Buchfuhrer and some at Johns Hopkins suggest raising your ferritin level to around 350, with medical supervision. Not all RLS patients need to go so high and some find they are relieved by raising ferritin to 100. But if 100 doesn't help you then there is still reason to hope that 350 might. The only sensible way to reach 350 is by intravenous iron infusion, oral probably won't get you that high and certainly not quickly. If you do not fit the criteria for being anemic you will have some resistance to getting an iron infusion on insurance or public health service. You will probably have to pay for it and it will cost several hundred dollars, at some places it might cost $1000 so get a quote and shop around. It has to be worth trying because the relief is total for some people and permanent for some people. For others you can get between zero and the 100% relief and its just a lottery. How much an hour would you pay for sleep?
Doctor Buchfuhrer says that only Injectafer, INFeD and Feraheme are suitable injectants for RLS relief.
Some doctors worry about such high levels of iron but I couldn't find any doctor who could explain what harm I might do to myself. They spoke of kidneys and liver but agreed that many people have natural iron levels at about this level and seem not to suffer problems. Some people with very high natural iron levels do have a problem but no one I spoke to was willing to say there was any appreciable danger below 500. I haven't had access to a hematologist to get an opinion. It would be interesting. A couple of doctors actually said the risk of any penetration of the skin was finite and should be avoided if possible. I pointed out how often I allow a medical person to puncture my skin as a routine part of almost every hospital visit.
There is a Spanish doctor who is said to have a technique for measuring the iron level in the brain by using ultrasound (trans cranial ultrasound). (Doctor Diego García-Borreguero Díaz-Varela) He also is said to have developed a special treatment for people with low brain iron and high blood ferritin. I haven't seen any research results. ( Note A leading expert in ultra sound in Melbourne (Aus) declared it to be nonsense because they can't use ultrasound through the skull. I think I was talking to a closed mind but I am sure she has more experience than me so its just something else to confuse us. ) Before Corvid-19 I was hoping to visit Doctor Diego and get him to have a go at my head. Some one in the forum ( Heatherlss ) met the man and said he was a wonderful person so that's a good start. Reportedly he will treat you via Skype but I expect you need a very cooperative local doctor or specialist to do the work.
Just to let you know, there is a guy who joined the forum recently who has been treated by Dr. Garcia-Borreguero for the last two years. You will find some details of his experience in this thread: healthunlocked.com/rlsuk/po... and I guess you could pm him for fuller information about Dr. G-B.
Graham You ask how much would you pay for sleep? This has now become a real issue for me. I am 73 and a full time Carer. I do not have the ability or indeed money to go and find these specialists who have the knowledge can provide support and help for people with RLS. In the UK we have the NHS which may seem free except that we pay towards this through National Insurance all our lives. This infusion if provided free is you are severely anaemic, say after a haemhorrage. I had to have a course of them after childbirth. But very low ferritin levels in the blood?? No chance
Apparently there aren't even consultant neurologists (never mind GPs) never know working in our NHS who know anything useful about PLS/RLS/ severe Augmentation let alone can supervise this treatment. At least it seems in the North of England. There are some who work privately who you would need a mortgage to even get an appointment with them. That is immoral.
If someone can tell me differently I will be so grateful. A high level expert .. a Professor .. who asserts that he helped set up this website, works like this Privately in London. What about the many 100,000's of people who need this treatment ... remember RLS affects in the UK about 10% of the population. I had an email from a Canadian lady yesterday .. its the same everywhere. There is a Duty of Care which is being ignored.
ABOUT FERRIC CARBOXIMALTOSE INFUSIONS DR. GARCÍA-BORREGUERO.- SPAIN
I have been a patient of Dr. Diego García-Borreguero and I can tell you that he is an eminence as a neurologist and psychiatrist when it comes to sleep disorders. It has its own clinic in 2 provinces of Spain (Madrid and Bilbao) and also in Santiago de Chile, its clinic in Madrid is called Instituto del Sueño and is based at Paseo de la Habana 151; telephone +34 913 45 41 29. You can find it online, and also consult on line.
As for serum iron infusions, I have to tell you that 35% of the patients obtain a total improvement and should not take medication for at least one year, another 35% obtain a partial improvement with a notable reduction in the dose of medication. Unfortunately there are 30% of patients who do not obtain positive results.
The price of each infusion is around 1000 euros and it takes at least two to achieve positive results.
I know patients who have been treated by him and have fortunately changed their situation completely, from leading a miserable life to not having to take medication, repeating an infusion a year.
Unfortunately due to my conditions I could not undergo this therapy.
This is really good to know but I live in the UK. I cannot even find a neurologist that KNOWS about RLS/PLS in this country that does not work Privately. There are plenty in London but they charge HUGE amounts of money to have even a first appointment. They can do this because there are so few doctors who care enough to inform themselves about RLS. You say the iron infusion in Madrid costs 1000 Euros . That is an enormous amount of money.
There are possibly 1000s of people who need this. It is immoral what is happening here and in other countries ... An eminent doctor who helped set up this website is one of these doctors who works only in Private Practice. His interest he names as "the social burden created by Parkinson's Disease". If he turned his attention to the social burden created by RLS /PLS then may be we would begin to be heard and things would begin to change. He is in many groups who COULD change things, could awaken the NHS to this need but does he? Well I have written to him to find out where he stands on this. I await an answer,
Indeed, it is a disgrace that few people have the economic capacity to access the most innovative treatments for Willis-Ekbow disease (Iron infusions or Transcranial Magnetic Stimulation), with fewer side effects and longer lasting success. It must be understood that this is the case because there are few doctors who investigate and because they have to make their research profitable, which is not paid for by the National Health System either. However, my last contacts with doctors related to this treatment inform me that prices have dropped by a few hundred euros (to 800 per session), and will continue to drop as more doctors practice the treatment. But the really sad thing is that we do not know when the treatment will be generalized and will be assumed by the National Health System.
But we must pressure the doctors to inform themselves, or even bring us the research reports and new drugs, so that they are informed at the same time. Likewise, we must pressure the National Health Systems to admit these treatments in their care protocols, since they are less harmful to the patient and in the long run more economical for the national health system.
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