Iron levels -- borderline -- IV indicated?

[Avart]

Hi,

This is a great forum and I have read the linked Mayo clinic guidelines but would appreciate some help on interpretation of my iron levels, I am a big guy 220lbs, who has been on mirapex for years (at up over 2.0 but for bipolar depression) slowly coming down, I also had RLS, now I am at 0.75 but with definite augmentation that nothing is helping. I will go down very slowly, but my iron levels at most recent test:

NOTE THAT I did NOT stop iron beforehand (i didn't know, how many days should I stop before next test?) AND I did eat red meat night before!:

IRON BIND. CAP.(TIBC) 298 ug/dL

UIBC 238 ug/dL

IRON, SERUM 60 ug/dL

IRON SATURATION 20 % <----this seems very low, borderline on the Mayo guidelines for IV

FERRITIN 130 ng/dl

Any thoughts? By guidelines I am "above" 100 Ferritin, but is 20 saturation low (?yes?) for that amount?

Has anyone had any luck finding doctor or locale in Northern California for Infusions? My sleep doctor, is not very good, well informed, says "do not know where/how/insurance coverage issues".

Thank you! I am quite miserable. my Bipolar 2 Depression gets worse when mirapex below 1.0 and yet, RLS augmentation has been terrible. Gabapentin worthless for me.

[SueJohnson]

Below 20% would indicate you need an iron infusion but there is nothing to say you can't have one above that amount and it would help with coming off mirapex. Also since you did not stop taking iron 48 hours before including in a multivitamin your ferritin number is not representative of your true number. It is higher than it would have been. As far as your Mirapex you were on 4 times the maximum dose for RLS. which is .5 mg You may know this but to come off Mirapex, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Did you try gabapentin before you went on mirapex or after. If after it is no wonder it didn't work. If before - how much were you on and did you divide the doses by 2 hours taking no more than 600 mg as it is not absorbed as well above that. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

[SueJohnson]

You might want to refer your doctor to the Mayo Clinic Updated Algorithm on RLS as yours obviously isn't uptodate or s/he would never have prescribed a dopamine agonist at that high an amount

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Avart in reply to SueJohnson]

Thank you very much! Yes I know mirapex dose was high but it was for bipolar depression. Only tried gabapentin after the mirapex. Hopefully depression can be contorled as I reduce mirapex as it does have unique benefits for me in BP2 on mood that few other agents have had...hopefully things different this time.

[SueJohnson in reply to Avart]

There are 2 antidepressants that are safe for RLS - trazodone and wellbutrin.

[Avart in reply to Avart]

sue, thank you so much for your replies you have helped so many on this forum with your experience. I just got labs redone, this is two months after the labs in my original post. This time I made sure no iron supplements for 3 or 4 days before, and no l meat the day before, tested fasted.

iron total 51 mcg/DL

TIBC 337

Transferritin sat 15%

Ferritin 73

How should I interpret these?

I am shocked how low as I have been taking iron regularly, I guess it does make a huge difference stopping in advance. I switched to the heme polypeptide form as well. From iron bisglycinate, and to about every other day (sometimes I’d forget if I took the day before and I led always erred on the side of taking instead of not).

It seems I am a good candidate for IV iron. I reviewed MAYO guidelines and gave to my NP. She is not well versed in this form of treatment. What would you suggest have you any experience with the different forms of IV or dosing? I am wondering given my size (225lbs male) if i will even feel an effect after the first one, and how long it usually takes “us” to notice difference.

Also, would it be wise to taper off the mirapex before the infusion or after? Does the increase in iron after an infusion “make up” for the loss of agonist as one tapers down? I wonder if besides the RLS allievation people notice other benefits that surprised them after IV infusion?

I have been on Wellbutrin for a whil, 200mg SR in morning with another 100mg SR around noon, unfortunately, it tends to disrupt sleep although I do notice a mild benefit for RLS.

It is going to be very tricky for me to withdraw from mirapex as I originally started it for bipolar 2 depression, where it has uniquely beneficial effects, but can require higher doses. I have already noticed negative impact on mood coming down from 1.25 to 0.625. Spent years depressed and anhedonic before mirapex really worked well for that element uniquely.

Anyway I’m going on and on, but appreciate your thoughts on my numbers.