So, called my gp this morning to get results for blood tests. Serum ferritin was 90, so I asked him if I could have some iron tablets to make it higher. He basically went off on 1, saying, at the end of the day, I’m not the dr he is and they have to follow certain guidelines, and reading things on the internet doesn’t help, even if it’s a specialist site for rls. I could have cried, in the end he backed down and said I could have some before slamming the phone down. So all day I’ve been having panic attacks because of this,, he really upset and pissed me off. Why do they behave like this? I thought drs were supposed to be caring. He is the 2nd dr at this practice I don’t want to deal with now. If they only knew how horrible this disease is. It’s 3.18am now and I’m soo tired, I’m crying all the time, been pacing the room. Really struggling at mo, with rls and panic attacks, plus I’ve now got water retention on top.
Horrible GP: So, called my gp this... - Restless Legs Syn...
Horrible GP
Hi leelee49
I hope you managed to calm down and get some sleep?
I was the same as you just the other night so I totally understand, you are not alone!
Are you on any medication? If so what? Do you try anything else?
I had my blood test results back yesterday and ferritin was 75 so I will probably be having the same argument with my GP too 🙈 god help them I am going armed lol
lucy x
Hi Lucy
I’m on 150mg pregabalin at the mo, I’m trying to stop it though cos of all the side effects. That’s all I take for rls, I use magnesium oil in a spray on my legs, and have magnesium citrate powder sometimes. Managed a couple of hrs eventually. Hope you have a better understanding gp than j did 😊 x
Leelee, I am so sorry. It IS a struggle. And he wasn’t helpful at all. At least you want to feel heard. Did you show the recent iron paper? sleep-journal.com/article/S...
Can you see it this way? You now know that your ferritin is ‘only’ 75. Btw did you get the other iron values, especially transferrin saturation? Anyway, your ferritin is low enough to not easily create iron overload. Why don’t you just buy iron ( bisglycinate) yourself and take it once every other day to - slowly - raise your ferritin. And ask for another test half a year from now to check progress. Don’t take supplements the last few days before the test.
You may also want to try - is it DicCarlson’s approach? - to take a double dose. All on an empty stomach before bed.
Thankyou LotteM
Even if I did show him the link I honestly don’t think he would read it, he’s coming across as if it’s his way or the highway, thankyou for the link anyway, will keep it at hand in case I get to see another gp. I’ve now got the iron tablets, which he said to try for 6 weeks then go back for another test, so will see how it goes. X
I understand and understood from your previous post. About his way/highway. Just find your own way.
Did he say 3 tablets a day? And did you get ironfumerate? If you take 3/d, chances are high for constipation. And your iron level do not increase any faster than taking one tablet every other day. Choice is yours. Good luck. I hope it helps, if only a little.
I had my blood taken for an iron test a few days ago and can phone today or tomorrow for the results. I had stopped taking iron well over 6 months ago.
Leelee, I'm assuming you are in the UK because of what you describe and I just wanted to say you are not alone, I've had similar experiences and at one point completely lost faith in the NHS because of the attitude of several GPs I saw. The doctor who finally agreed to refer me to a sleep specialist only did so because I wouldn't leave his office until he did something. And his parting words were 'you don't have a sleep disorder'. I do, RLS and PLMS, and now see a lovely NHS consultant. The first thing she did was check my ferritin, saturation etc and advise that I needed to be on iron - my GP had had the very same results and said there was nothing wrong.
The consultant has explained to me that sleep medicine is in its infancy in the UK, has minimal funding, and is not part of general medical training and the majority of GPs will not recognise the symptoms. In my area the NHS will not fund DA patches unless I try every available tablet form, regardless of whether the patch is preferred by my consultant. But the NHS is not going to change any time soon.
I see you are on pregablin - did your GP prescribe this or did you see a specialist? If you haven't seen one, I suggest you say you need to see one because the preg is not helping. (I was on 100mg for two months and it was hell - my GP wouldn't intervene and said I had to wait for my next consultant appointment. She took me off it immediately. Interestingly, she said that women suffer more side effects than men - bet your GP doesn't know that!).
If you feel up to it (and I know hard it is with this condition to even motivate yourself enough to get a medical appointment when you know it wil be a battle) you could ask to speak to the practice manager about your experience, focused on the lack of specialist knowledge rather than the GP's attitude, and ask if you can see a doctor who has some knowledge of the condition or can refer you to a specialist.
Very best wishes x
Initially I was seeing a gp who had a bit of interest in rls and who let me guide him in a way, but he went and bloody left didn’t he. He said to take the iron tablets for 6 weeks then possibly arrange to see a neurologist at some point. LotteM I’ve got ferrous fulminate and taking 1 a day, will see how I go with the constipation as to whether to take more.
Leelee,
That just shows how short-sighted your GP is. If they can discuss, rather than dictate what treatment might be useful he can learn something and be sure you'll be honest with him. Although, none of us are trying to pass ourselves off as "doctors", we can only say we're the specialists about our own conditions.
Still, as you found out , his behaviour resulted in you require more help from him.
Luckily, I have had some decent GPs at times when I needed them, so I know they are not all rubbish.
I hope things work out OK for you.
Lindy14
Hi Lee
I’m angry for you. My GPs are the same but I now ignore them. Remember that some GPs feel threatened by patients doing their own research but those of us with RLS have to learn as much as we can. Don’t let him upset you.
I have increased my serum ferritin from 67 two years ago to 204 ( just got results back today) on my own by buying oral ferrous bisglycinate ( gentle iron) from Holland & Barrett and skin patches fromUS company called PatchMD- they have a bogof offer at the moment.
I only take the gentle iron pill and patch every other Night ( someone on here posted that your brain will block absorption if you take it every day).
I am beyond delighted as it’s really difficult to get ferritin levels up this high without an infusion.
My RLS has improved dramatically over the last 6 months and I believe that’s because my ferritin levels have increased from 167 to over 200.
I also take 150mg pregabalin and 25mg OxyContin but have recently reduced the pregabalin by 25mg.
You have to avoid magnesium orally 2/3 hours before or after pregabalin as they interact. also avoid using the spray until 3/4 hours after taking pregabalin.
The pregabalin side effects of weight gain/ water retention/ dizziness/ double vision can be reduced by taking it at night and not in the day.
The weight gain and retention settled for me after 3/4 months.
Stress makes RLS worse so forget about him- you can get your levels up without him!
Stay strong and I hope you feel better soon.
Jools
Thankyou jools for the info and words of comfort. It’s frustrating to think that gp.s are supposed to be here to help us, but no, not all want to because they feel threatened. I will from now on, obtain my own medicine if I can purchase it elsewhere.
This all sounds dreadful. I feel angry when I think of you taking 2 years to raise your ferritin level when it could have been done in two weeks. I understand that GPs are restricted to a list of treatments, This sounds pretty insulting to the GP. Does this only apply to patients getting treatment on the NHS? Does a sleep or neuro specialist have more independence - so could they prescribe an iron infusion? If so can you demand (nicely) to be referred to a specialist? If so can you ring every sleep or neuro specialist within 100 kilometres and tell them what you want then ask them if they are willing to prescribe an iron infusion for RLS? Perhaps specialists are allowed more latitude in what they prescribe.
Is it possible to visit a clinic on the continent? I know of someone here (Australia) who has a medical condition and the best and up-to-date treatment is not available here so she is going to go to a clinic in Germany that has 10 years experience with this treatment. You can get it done in Australia at a couple of places but they have experience with perhaps 5 patients in the last 5 years so you have to ask if you want them learning on your body. Perhaps there are clinics in Holland or France that would be easy for you to get to and might routinely do iron infusions for RLS. It would just be a day trip. Its not like an iron infusion is some very specialised process, in fact its just a matter of sitting still for an hour provided you are somewhere that can cope with an allergic attack. Its a routine event for lots of people with things other than RLS.
Its very depressing to know that perhaps 20% or more of us could be cured with a quick and easy, and SAFE treatment that some committee has decided is not for us. I am sure it would cost the NHS less than the years of drugs they would happily pay for.
Hi Graham
There are a few people on this site who have managed to persuade their doctors in the UK to refer them for an iron infusion. Specialists at Exeter hospital and the Royal Brompton in Chelsea are 2 hospitals I know of that have given iron infusions. The top UK RLS experts at King's College Hospital in London, led by Prof Choudhuri refuse to carry them out ( I have asked them about it).Dr Kirsty Anderson, another RLS specialist at Newcastle Hospital is of the view that iron will not help much; she thinks a serum ferritin level of 75 is more than adequate. So even among RLS specialists there is a difference in opinion. There is a lot of anecdotal evidence that raising ferritin helps but we need more solid research in this area.
The only research is happening in the USA. We need to be more politically active if we want to push for more research. Here's hoping.
The problem is mainly that no one knows for sure whether low serum ferritin is the main cause of their RLS. I suppose it's trial and error - it's only after you have had the infusion that you will find out whether it helps the RLS.
I have been following a vegan diet for the last 5 months after reading Raffs' post in which he says the vegan diet stopped his RLS. But in that time my ferritin levels have risen from 160 to over 200 (I found out only yesterday my levels had increased over that same period to 204). Now I don't know which has led to the improvement in my RLS- the diet or the ferritin increase. I still get RLS 3 or 4 nights' a week ( instead of every single night despite taking heavy drugs)- just more mildly.
I think I will carry out an experiment where I eat meat, chicken and fish and dairy for 2 weeks to see if the RLS gets worse, then I would know which has helped.
It's not just the UK that's reluctant to give iron infusions for RLS- there are people on this site from all over the world who report difficulties in getting them. RLS really is at the bottom of the heap worldwide when it comes to diagnosis and treatment and being treated as a serious neurological disease.
How awful. Doctors should NOT behave like that. It’s patient abuse. Please make a formal complaint. Write down everything he said before it becomes blurred in your mind. Then get a complaint form and submit it.
So sorry it happened.
Hi leelee 49
I too have recently been diagnosed as having low ferritin after blood test...
At last I've found a doctor who was looking for cause of rls.
I totally sympathize with you.rls drives one to tears..no sleep is dreadful.
IV had rls full on for about 5 months now.. most of the summer and I've got daily commitments so I've just got to keep going..
Anyway..was at last prescribed iron tablets..the first 4 different lots didn't agree with my stomach..even though I tried half dose etc.
I told one of the docs this and he just said.. well eat more iron rich foods.. there's nothing else.!!
IV even bought my own iron tablets from Tesco and health shops which aren't as strong but cost a lot too.
So my choice is
Have an upset stomach all day..pains cramps wind diarrhea etc or restless legs at night..
I'm eating more ref meat and liver and greens lately.. although I prefer fish and chicken.
I've read shellfish is high in iron too..so I guess more of that.
Iron medicine might agree with you ok.?
Please be happy that you've found the reason now..
But my question is..
Why are my iron levels (ferritin.. stored iron) low anyway..?
What caused this?
I'm retired..and fairly fit and active..
I'll keep on with trial and error iron medicine.. floradix or Spatone is good now and again but doctors stuff stronger.
I'm currently using "ferrous fumerate".
But ever so cautiously.
Do hope this has helped you.
Be nice to hear how you get on
Best wishes
Jan
Hi jan, thankyou, I’m also taking ferrous fulminate, got to take it for 6 weeks then go back, hopefully when I go back I’m going to be referred to a neurologist.
Hi Lee Lee..
Thanks for reply.
One learns a lot on this forum.
Others have said about taking supplements 2 hours after evening meal.. makes sense when you think of rls time approaching plus body can assimilate during night which lessens day time side effects.. hopefully.
Also every other day for dose.. rather like myself.
I'm going to send for those patches too.
I wonder if I could be referred to a neurologist too ?
It would get to root cause..
Lack of or low dopamine I've read ?
Best wishes and hope things get better for you
Jan
Oh LeeLee.
How awful, and even more awful that so many others know precisely what you're talking about, having been there themselves.
At what time of day did you have blood taken? And had you taken iron tablets the day before?
I ask because there is a distinct circadian rhythm to serum ferritin. It is at its lowest first thing in the morning, but it will be higher if you took iron tablets or an iron-rich meal the night before.
So, note to self and others, have your blood drawn as early as possible, and avoid all iron supplements and most animal products a day or two before in order to get a more accurate reading. (Even then it may not be the truth, as it is not necessarily an accurate picture of the brain).
When you do take a supplement, take it two hours after the evening meal, not the morning, as uptake in the brain is highest at night.
I think the best measure, barring a spinal tap or a brain biopsy (!) is the way the patient feels. If taking iron has improved symptoms, and if stopping iron increases them, then it's as plain as the nose on your face.
And you do not need a doctor to give you iron, just go to the health shop for Gentle Iron, and take sufficient that you will get 60mg elemental iron per day. I think it was Dr Earley who said that he could see no reason to take it every two days, rather than every day.
complain to the medical council. If others do the they'll gradually build up a dossier on him as a problem doctor. I'd also try to find a more sympathetic doctor in your vicinity.
HiEe lee. Show the GP this link, maybe then he’ll understand our 24hr torture, anytime of day/night.
Hope you get some peace and relief.
I hope HealthUnlocked allow the link to show.
Get iron bisglycinate (gentle iron) from Holland and Barrett if you are in the Uk. Wait until it’s in the penny sale though. No problems with stomach with that and I have the most delicate stomach going. It’s actually in the sale this weekend.
Absolutely appalling! And I was a GP. Ashamed of my species. I apologise on behalf of the profession
Could you afford to buy iron supplements and not have them prescribed?! Try for a couple of months and, if helpful, go back to different GP?? So sorry you are struggling..
If you need iron you have to remember to take it on an empty stomach, with vitamin C of the complete variety, not just ascorbic acid. It is also important not to have any tannin (i.e. tea) or milk, or any other iron inhibiting foods/drinks at the same time as having iron supplements or foods containing iron (eg meat, eggs etc) otherwise the iron will not be absorbed properly. All the information is up there on the web if you look for it. Good luck
I just wanted to add to this post that I read certain "non essential" treatments are being stopped by the NHS and vitamins were one of them, unless you have a severe disease, so I suppose it again will depend on who classifies RLS/PLMD and whether you can still get them. Personally my GP stopped prescribing vitamins years ago and I have had to buy my vitamin D.
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