blood levels

[Rushgram]

please help me interpret my blood levels :

Ferritin 39 ( I know this is very low)

TIBC : 50.7 umol/L

% saturation : 0.47 1.00

Thank you

[SueJohnson]

Your ferritin is low but your % saturation is on the high side. It should be less than 45% although some say 50%. What range did it give on your test results as some labs are different. Nevertheless you need to see a hematologist as your low ferritin for RLS would normally mean you need an iron infusion or at least to take iron. The problem is that your ferritin is normal for others but for RLS you want it to be at least 100.

[ChrisColumbus in reply to SueJohnson]

(Even different parts of our supposed 'National' Health Service use different figures for TSAT reference ranges: I suppose most common is up to 50% for men, up to 45% for women, but I've also seen top figures of 40% given for women, and occasionally up to 50% for post-menopausal women)

[Rushgram in reply to SueJohnson]

A screenshot from test results:

I am taking oral iron. 150 mg every second day. I know my doctor would not be on board with a referral to a hematologist because when I asked about an infusion she said to first see if I can raise the ferritin level with oral iron. She also said that because my other levels were high she didn’t know if an infusion was appropriate.

Test results

[SueJohnson in reply to Rushgram]

Which iron are you taking?

[Rushgram in reply to SueJohnson]

Sue I feel a total mess. I have reduced the Pram from 0.5 mg to 0.125mg ( latest reduction about a week ago). I was taking Gab. 600 mg before bedtime and since latest reduction also needed to take a Tyl #3. The last 2 nights I had to take 2 Tyl. #3 and I still had no relief. Up all night. I don’t know how I’m managing to function at all. Last night I also took another Gab - so total 900 mg. I hope there will be relief soon. The only thing that’s keeping me going is reading that it will be worth it.

[SueJohnson in reply to Rushgram]

Have you been reducing by more than 1/2 of a .125 tablet every 2 weeks and letting your symptoms settle before reducing further? If you haven't then go back up and try reducing that way. If so you might want to go back up a dose and get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

You really need something to help while you are reducing. Can you get cannabis? Or ask your doctor for a low dose opioid TEMPORARILY (emphasize that to him/her) to help you come off it and print out the portion of the Mayo Algorithm on opioids to show him/her.

Hang in there. You can do it!

[SueJohnson in reply to Rushgram]

You can also get cocodamol OTC which can help. It is a low dose of codeine with tylenol.

[Rushgram in reply to SueJohnson]

Hi Sue Thank you for your response. My pills are in 0.25 mg denominations. I should have had 0.125 mg which would have made this easier. So I went from 2 pills to 1 1/2 and then to 1 , and now to 1/2 of a pill. This has been the most difficult reduction.

I have Tylenol #3 so that is an opioid correct?

When you mention cannibas, do you mean the kind you smoke or in another form? I am in Canada so it is legal. What would I buy and how much would I take?

I am trying to avoid upping the Pramipex because I am afraid of going through this torture again. I’m hoping that my body may start to adjust to the reduction.

Should I be taking a higher dose of the Gabapent.. ? Last night I took 900 mg all together but having reviewed the information here I think it is better to take 600 mg and the remaining 300 mg 2 hours later?

I thank you from the bottom of my heart b

Pam

[SueJohnson in reply to Rushgram]

You are right about the gabapentin. Take the 600 mg 1 to 2 hours before bedtime and 300 mg 2 hours before the 600 mg one. And I wouldn't increase it any more until you are off pramipexole and your symptoms have settled.

Yes you want the marijuana you smoke. It relieves symptoms after 1 to 3 inhalations. This typically happens within 5 minutes and lasts 1 to 2 hours.

Yes the tylenol #3 is the same thing as the cocodamol I was mentioning. I missed that it was tylenol #3 that you were taking. Since that has less codeine than the prescription codeine and codeine in any case is a weak opioid, I would still ask your doctor for a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

You should reconsider not increasing the pramipexole as it will take a lot longer for the symptoms to settle at the dose you are on. On the other hand if the marijuana relieves your symptoms enough or you can get a low dose opioid then yes don't increase it.

And which iron are you taking?

[Purpleyam in reply to Rushgram]

Hi, I am also in Canada and this is the cannabis oil product that I use. It won't leave you groggy in the morning. I've been using it ever since I started weaning off Pramipexole as well. Good luck, you can get there!

Cannabis aid for sleep.

[Rushgram in reply to Purpleyam]

Thank you. I’m just seeing this now. What form is it in? I tried the stuff you smoke and it didn’t agree with me. Please refresh my memory-,is it alleviating your symptoms?

[Purpleyam in reply to Rushgram]

Hi Rushgram, this product is in oil form, taken with a dropper. It helps me get to sleep and relax. I take Gabapentin and Tramadol for the RLS.

[707twitcher]

I have similar iron levels - close to high end of normal iron, low-ish ferritin, but iron saturation close to 50%. When I recently took oral iron supplements for a month, the ferritin rose from 51 to 158, but saturation rose from 46% to 59%. So I stopped the supplements after those results, as everyone says high saturation is bad. From what I've read, saturation is simply the percentage of iron to transferrin (what the liver makes to get iron into the blood). So, with normal-to-high iron levels, but normal-to-low transferrin, my saturation is high. I've also read that high estrogen levels (which I have, along with high testosterone) can possibly cause higher blood level of iron. There doesn't seem to be any easy way to increase transferrin level - which is what it would take to lower my saturation. The iron supplements actually lowered it.

This seems to be another one of those medical topics that doesn't have much guidance, and GP doesn't have anything to add, so I'm stuck with low ferritin and nothing to do about it...

[Rushgram in reply to 707twitcher]

Oh dear- this is so complex. I’ll keep u posted about my situation. Good luck

[Birdland]

It is indeed very difficult to come off of these horrible DA drugs. In my experience, the closer I got to zero the worse the withdrawal was. And the 4 weeks after my last dose was the worst. Hang in there. There is light at the end of the tunnel. It will be worth it. If you get cannabis, I recommend a 100% indica variety as apposed to sativa or a hybrid.

[DicCarlson]

Not to confuse the cannabis for sleep issue - but here is a very good discussion on the types of cannabis for sleep...

cannigma.com/strain/best-st....