Finally done the ferritin test

[mand82]

Stupid doctor didn't put the ferritin test down when he made me have a blood test last week so I kicked up a fuss and he got me to go back to the hospital and take the ferritin test today so should know the results tomorrow if he can be bothered to read the results last time it took him 6 days to read the results before the reception could tell me what the result was as the doctor has to put it up on my records the results ,

[nightdancer]

How did it turn out? What did you get for a level?

[mand82]

Well the doctor read the results and the reception said the doctor has put down its all normal

I through a wobbly saying I told the dam doctor I want to know the actual levels of the test they put me down for a call back from the doctor who was supposed to call me back Thursday but he so far hasn't got of his dam back side and rang me not so happy how hard is it to put levels on the results page on my records or ring me back grr will take a walk back to the surgery later today and complain

[mand82]

Grr just found out the reason the doctor didn't ring me back yesterday was the stupid receptionist put me down for a call back next Thursday instead grr, they are getting the doctor to ring me back today now just gotta wait by the phone

[Hidden]

that's disgraceful, hope you get your call, and your results today, fingers crossed

[mand82]

Got a call back doctor said my levels are 32 told him I have all the symptoms of rls so he made another appointment to discuss it further ,

[Hidden in reply to mand82]

Hi, it needs to be 50-70 if you haver RLS mand82, so its a bit low really

[mand82]

K, but still have all these symptoms that are like rls but doctor doesn't seem bothered to do much about it and its affecting my sleep

[Hidden]

well he should at least give you some iron see if you can get your levels up a bit more, tell him/her what you have seen on here that others take, print some info of and take it to the doctor stick to your guns your entitled to treatment

[mand82]

I've told him before if he doesn't know much to just send me to someone who knows more about leg pain/sleep disorders who can sort this out better as he doesn't seem to know anything,

My legs are always painful/aching all the time more at night I get the crawling feeling up my legs at night I can't keep my legs still have to keep moving them every 2 seconds I get those hypnotic jerks every night and only walking and moving my legs seems to calm the pain/ache end up tossing and turning all night I go bed at 10pm and its gone 2/3am by the time I've managed to fall asleep and during the day I'm so dam tired I forget things and can easily fall asleep I just wanna find out what is wrong and get it treated so I can get a better nights sleep and feel more awake during the day and don't have pains and aches in my legs at any time if the day etc

[nightdancer in reply to mand82]

Have you had your Ferritin level tested. You can't just start iron without getting a test to see if you need it. IF your doctor does not know how to treat RLS, then insist that you get a referral to at least a neurologist, since RLS is neurological. 65% of all cases are inherited. rlshelp.org is a good web site for information, by one of the leading RLS experts in the US, and the treatment page, plus the list on that same page that lists foods and "drugs to avoid". It helped me a lot many years ago when I first needed to find a good doctor.

[Hidden]

ask to be refered to a neurologist, RLS is their field

[Hidden]

Today is July 19. I am very hopeful that you have results and a treatment

plan in place. Keep us posted. Please. =)

[Hidden]

Iron is one of those medicines that you can't self medicate.

It can damage the liver. It's metabolized there.

Few if any died or had serious harm from taking a multi vitamin that

contains iron. SOMETIMES food solves the problem much faster than

the pills work..

Red meats like duck, beef, lamb, goose, dried fruit, especially

dried peaches are high in iron..

Also raisins, prunes, figs and apricots (dried) are great..

Pack some of those things to eat while you are in the car, or

make up a few baggies of the dried fruits to help yourself out.

Fortified cereals work okay as well.

[Hidden]

My doctor told me that the cheapest iron that you can buy is the

one to use. It works faster than some of the slow release ones.

It can cause cramping though.

Take that iron with something high in vitamin C so it is absorbed

better. =)

I am not a doctor, not a nurse, so I am just passing on what my doctor

told me about getting iron, ferritin levels up a little faster.

[nightdancer]

Some doctors say "normal", because they are looking at what an average "normal" is for a person without RLS. it is right that it should be between 50 and 70. ON an average person without RLS, normal is 12-15.

[Hidden in reply to nightdancer]

Nightdancer, It took me 10 months to get my level to 50 from

36, I am shooting to go even higher. I have the green light to

eat high iron foods. I was 8.2 iron level before I started to

eat high iron foods in combination with vitamin C foods.

My iron is at 15.9.

My RLS is driving me nutty tonight, as usual. I am seeing

a neurologist to help me dig my way out of sleepless nights.

The doctor put me back on more than the max dose

recommendation of Mirpex. I feel pukey tonight from taking

10mg nightly. I called to make sure that the dosage prescribed

is correct. It is. The pharmacy said that's the usual dose for

people... that cannot be true. It's not helping me anyway.

I took 5 .0125 tablets up until about 3 weeks ago.. the neurologist

said that since it wasn't helping me, she took it away.

It was my Rheumy that put me back on it because it's making

my numbers in my blood horrible. Lack of sleep is to blame.

He also recommended a light narcotic which I refused.

I told him that I had built up a tolerance. Hopefully the

cortisol in my body will settle back down if I ever get to

sleep tonight.

[Hidden in reply to Hidden]

Woweeee, 10mg of Mirapex...!!! Way way to high.... 4mg is the highest dose to take for RLS. i am not surprised you feel ill..

Wish i knew what to suggest for you Yikes, but taking that dose of 10mg of Mirapex, is NOT the answer. I dont know what your doctor was thinking of..

I really feel for you....hope you get better help when you see your neuro...

[nightdancer in reply to Hidden]

Elisse is 100% right here. Nobody takes 10 mgs, unless they have Parkinson's , and that is even high for them. According to everyone who deals with RLS, drug companies, pharmacists,experts etc, say 4mgs is the maximum therapeutic dose for RLS. Who did your doctor say that 10 mgs is the max dose for RLS? You are being set up for a bout of augmentation eventually, and on that dose, that is almost a given. 10 mgs would make anyone feel "pukey". yuck.