Ferritin Level

[BonnieB]

I have just received the results of my first ferritin lab check...119, standard range 10-291 ng/mL. I haven't had an appointment with my doctor yet (1/12/2012), so I'm just a little anxious to know what that means. I know that anything below 50 mcg/l is not good, but not sure how it relates to the "ng/mL" measurement. I am guessing that my ferritin level is okay. My RLS have become much worse recently and I was more or less hoping that the cause for the worsening would be low iron, since I thought that would perhaps be an easier problem to fix. If anyone can tell me whether the 119 is within the acceptable level, I would appreciate your response. Thanks.

Bonnie

[Polar Bear]

BonnieB, I know that us sufferers of rls/wed should hope for over 50, and aim for
100.
If standard range is 10 - 291 then I reckon anything within that range is considered acceptable
including your level of 119.
I can understand that with your worsening symptoms you hoped that maybe 'all it would take'
would be to increase your iron. Thumbs up, your iron is good.

Now you have to think about what could be happening to cause you to have a surge in your
symptoms, any meds that should be avoided, any particular foods, or a time of stress, or perhaps
it is a 'bad spell' and will settle back to what would be normal for you.

[badnights]

ng/mL is same as mcg/L

Your ferritin is fine, so as PB says, look to other causes. Also don't forget the disease is progressive .... what you are experiencing might be the natural progression of the disease.

However ... I know from your other posts that you're taking Mirapex. Have you considered whether you might be augmenting? Following is an overly technical list of diagnostic criteria for augmentation. Basicallly it's an increase in severity or earlier daily onset or spread to other body parts, caused by the very medication that's supposed to be helping you. It's a very common effect of the Parkinson's class of drugs in RLS/WED, and the best way to treat it is to switch meds. That would not be such a bad thing, if you have to switch anyway because of the vision problems.

For you to be augmenting, all of the following must be true:
- you have had an increase in symptom severity on at least 5 out of 7 days the previous week
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment

Also, either B or C has to be true:
B.
persisting paradoxical response to treatment: RLS symptom severity increases some time after a dose increase and improves some time afer a dose decrease
or
C.
earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours OR and earlier onset by 2-4 hours accompanied by one of the following
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment

[BonnieB]

Yes, I think I have definitely experienced augmentation. I am completely off Mirapex now and am only taking Vicodin during what would be considered normal sleeping hours. That helped initially, but now, nothing seems to help. Inasmuch as I have already had a serious side effect from ReQuip, I don't know which drug would likely be a good choice now. I will be seeing my doctor 1/12/2012. He is not going to be happy that I stopped taking the Mirapex.

I appreciate all the helpful feedback I have received on all my posts. This board is a wonderful place to gain knowledge about RLS.

Bonnie

[badnights]

BonnieB there are lots of other things to try, if your doctor is willing to work with you. Let's see what he suggests. The next thing to try might be an anti-convulsant in combination with the vicodin, so you don't have to raise the vicodin dose as high as you might have to otherwise.

[BonnieB]

Thanks, Beth. I'm just overly anxious I guess and hoping that someone had had a similar experience and had found relief in something else. My doctor is not easy to talk with, and I dread meeting with him for that reason. I have a fistful of information I have printed concerning RLS but I doubt he will be interested.

Also, Beth, I received the CBC results and it shows my MCHC at 30.3 (lab flagged as low), with standard range being 31.0-36.0 g/dL. I have read info on the MCHC and wonder if that could have any effect on RLS. Yes, I know the easy and smart thing to do is wait until my appointment on 1/12, but I am just trying to gather as much info prior to as possible so that I will be better informed. It seems that my MCHC has been decreasing since 2009. My appointment for 1/12 is for a physical, but I am going to send a note to the office ahead of time and request that the physical be re-scheduled so that I may use this appointment to discuss my RLS issue. They will only handle one problem at a time.

Also, I gathered some info from ehealth for my daughter concerning anemia, and I was amazed that so many of the symptoms of anemia are similar to the Mirapex side effects. I am in no way suggesting that I am anemic because I know that I am not, but was just surprised that there was so much similarity between the two, almost all of which I have. I have about 8 out of 10 of the Mirapex side effects, depending on which brochure you are looking at.

Apparently, when I increased the Mirapex dosage from two to three tablets for a short while I created additional problems for myself with augmentation. My doctor told me I could do that and when it was no longer working as well, I thought I was safe in doing so. I wish I had not increased from two to three because since that time the symptoms are almost as bad in my arms as in my legs. I'm thinking perhaps the change in dosage contributed to the worsening, but maybe not. Who knows? I am happy to say that my vision problems have improved since being off the Mirapex, but can't really know, I guess, if Mirapex was the cause. I really don't want to go back on the Mirapex to determine for sure because of the number of serious side effects of Mirapex. I don't mind the typical side effects, i.e., nausea, rash, occasional headaches, etc., but these are scary.

Thanks for your suggestions and encouragement.

Bonnie

[ViewsAskew]

I don't know of anything related to MCHC, but it makes sense that it could be a factor - it's saying the hemoglobin concentration is low. And a low level indicates anemia. Anemia is known cause of RLS. But, that's my logic, lol, not a doctor's!

[badnights]

I ditto Ann. The lowered iron is a cause of concern because RLS/WED is fundamentally a disease of the transport mechanism for iron across the blood-brain barrier. RLS/WED is far more common in regular blood donors, and others who are low on iron for whatever reason. It's hard to talk to dcotor who are hard to talk to but I can't help at the way I said that... .I should write this stuff a little earlier in the day.

I'm glad you're off Mirapex. But what are you on? Are you on nothing while you wait? Were the symptoms bad while you got off of it? Has the augmented level returned to your previous base level of symptoms or have they stayed worse, still in your arms?

I am rooting for good changes in your life.

[BonnieB]

Hi Beth,
Nice to hear from you. I saw my doctor today (this was the appointment I dreaded). My appointment today was initially set up in advance for a physical, but I sent an email to the office requesting that the time allowed for a physical be changed to a regular appointment because of a more urgent issue I needed to discuss with my doctor, i.e., RLS. Right off the bat he proceeded to tell me that I should have called the office to change the appointment because he was booked solid today and could have used the time and my email was not checked by the office staff until it was too late to make use of the time I gave up. (I sent the email in the morning on 1/9/2012, which would seem to me to be ample time.) They offer the email service as a way of communicating with their office and I prefer it to waiting on the telephone line to get to talk to someone; however, if they are not going to check their messages, then I feel they should remove that option as a means of communicating with them. Though I wanted to, I didn't say that to the doctor.

I discussed the side effects I was experiencing with Mirapex and said that I had stopped taking the Mirapex. I described the many side effects that I was experiencing and while I had no way of knowing Mirapex was causing them, I felt that I had made the right decision in getting off the Mirapex because it was too much of a coincidence that if 15 side effects were listed, I had 12 of them. Since the majority of them came on suddenly, i.e., worsening of the RLS and others that I could only attribute to Myrapex, I felt justified in stopping the Mirapex. I suggested perhaps we could try something else since the Mirapex had left me at a point where I could barely function during the day. He said I could try ReQuip. I explained that I had already had a horrible experience with ReQuip and did not want to go back on that. He said I could try a lower dose than I had been on before??? (A lower dose than I was on when I stopped was not effective.) I said no thank you. He then said that he had nothing else to offer; those were the only two drugs approved for RLS. I said so what am I to do? He then took out his little pocket computer and proceeded to thumb through that and said perhaps he could put me on a muscle relaxer or send me to a neurologist to see if he would know of snything. I said okay. He immediately prescribed clonazepam, sent the request to the drug store, and said make an appointment for your physical on your way out.

Well, you know the first thing I did when I got home...checked on the clonazepam...especially after the pharmacist said I'm not fond of these drugs; they are very habit forming. So much for that, but at least I'm going to finally get a good night's sleep, and I'll worry about all that tomorrow. Wrong. I took the pill around 11 p.m. and at 12:03 a.m. I'm up again. Back on the computer looking for home remedies, etc.

Now, I'm done with my complaining, I'll answer your questions, and thanks for asking.

I just recently found that the only way I could get any sleep at all was to take two Vicodin (5/500) when I went to bed. That allowed me to sleep at least a couple of hours. Since I had the Vicodin on hand for a bad back, I just stopped taking it during the day and saved it for nighttime. Of course, this was my short term plan until I could see my doctor and my way of just getting by.

No, the symptoms did not return to base level. The symptoms are still at the worsened level, and still in my arms. As a matter of fact, the symptoms now seem to be starting in my arms shortly after I sit down in the evening and eventually move to my leg(s). Before this incident, it was almost never or very rare that I had a problem in my arms, but I did have it just before coming off ReQuip.

During the night I have checked on the names of some doctors in my area who treat RLS and perhaps I'll follow up with one of them. Right now, I'm not sure what is best to do.

Thanks again, Beth, for your interest.

Bonnie

[rthom]

Bonnie
Don't know if this helps but i also take clonazapam. I take it to get to sleep, as it does nothing to keep people asleep--thus your problem i bet. Anyway, i do keep it on hand and use it for those times when night after night you can't fall asleep, but definitely need a better idea to keep myself asleep. For these reasons I don't use it as one of my normal regime, but i do like it to help me doze off on those really difficult times. (I like the fact that i don't wake up feeling drugged in the am, but that's just me.)

[ViewsAskew]

Hi Bonnie,

So sorry for that result. Primary Care doctors aren't often that informed - they can't be!

Clonazepam isn't helpful for many patients - I think one study suggested it helps 30% or fewer people. It's also suggested that the ones it helps, it helps because it knocks them out so the symptoms don't bother them.

Vicoden, on the other hand, is a moderate opioid (plus acetaminophen). The vast majority of us respond to opioids. So, now surprise there!

I do hope that the symptoms return to a lower level in time. The RLS/WED specialists say that there is no such thing as permanent augmentation. Yet at least 3 or 4 of us here have experienced it. They say that it's a natural progression - that the disease worsened during the period we were augmented. I think it's much more likely some switch was turned on and they just don't know what they switch is!

I had almost no WED symptoms in late 2003 when I first started taking Mirapex. I had horrible PLMs. I was exhausted from years of not getting any deep sleep. Within a week on Mirapex, I had daily WED instead of once a month or so. Doctor had me take more of it eariler. Soon I had it at 7 PM instead of at 10 PM. More drugs earlier. Then I had it at 4 PM instead. More drugs earlier. After a year, I had it 24/7 and in both arms and legs. I started doing research, and couldn't find much at all. A few studies were out, but the doctors weren't aware of them. I found this site. I went to a WED conference and met doctors who understood it. I emailed Dr Buchfuhrer (Dr B to many of us here). At this point, it was 18 months later and I had no job (couldn't work), no life, and had lost a lot of cognitive functioning (just too tired to process and think). During this time, I tried twice to stop the Mirapex on my own and couldn't do it, as well as, for a short while, listening to my original doctor who made things worse by putting me on Requip and then Sinemet. Idiot (and that is me being nice).

Long story short, with Dr B's and my primary care physician's help, I got off the Mirapex. I wanted that miracle of going back to once a month WED. But, I would have settled for once a night at 10 PM!

I never got that. I still have 24/7 WED in my arms and legs. I can say, though, that 7 years later, the WED has diminished some. It's not as intense in the daytime and I can manage it when it's here without using drugs. It's rarely in my arms now, and it used to be all the time. It still does if I get behind on a dose, but it's not a regular circumstance.

I hope that you experience a greater lessening of symptoms that I. Mostly I hope you find a doctor that can help you figure out what to do next. That can be a struggle as there aren't that many great WED doctors out there.

If you don't have one close to you, consider flying to one. That's been a lifesaver for several of us. I really couldn't afford to do it, but I couldn't afford to be so miserable and tired that I couldn't work, either. Getting to Dr B allowed me to create a plan, figure out a solution, and provide support to me when what we tried didn't work. He answered my emails every night and worked out new plans with me allowing me to actually have some input into the solution.

I still don't work full-time, but when I have the work (I own my own business) I can put in a 40 hour week. It's hard, but I can do it. I do best working 20-30 hours, max. I couldn't work 2 hours a week a few years ago.

Guess the point of this much-too-long story is that even if things have changed permanently, there is hope that they can be better.

[Chipmunk]

Ann,
Thanks for sharing that. I also quit my job because it was killing me, slowly and painfully, I might add. I am doing better now but wonder if I'll ever be able to work full time again. I would love to go to med school but I don't know if I could hack it physically. I hate being limited by my body.

[rthom]

I too had to re-think my work, i was off for a while and now have to work when i'm able--self employed is a must in my books. Bit lonely though.

[ViewsAskew]

Ann,
Thanks for sharing that. I also quit my job because it was killing me, slowly and painfully, I might add. I am doing better now but wonder if I'll ever be able to work full time again. I would love to go to med school but I don't know if I could hack it physically. I hate being limited by my body.

I want to get a PhD quite a bit...but I just don't see how I can do it. I understand your frustration. Maybe someday 8

[Chipmunk]

My Ph.D program let you go part-time -- maybe yours would too? (or you could come up here to Madison