Iron Supplement

[Thebarber]

Hello, I recently started taking iron supplements as my level was 90 and it's advised should be over 100. I have now had black diarrhea for three weeks and the worst stomach acid. I have now stopped the iron supplements. Does anyone have any advice on what my next step should be. I have not spoken to GP yet can not get appointment till next week. Thanks

[DesertOasis]

Iron aside for the moment, I’m wondering why your RLS went from 0 to 100, 15 years ago? Did you start an SSRI or calcium channel blocker or sustain an injury?

[SueJohnson]

The usual recommendation for diarrhea is to take it with a small amount of food, but not milk. Take it every other day. Also eat lots of iron rich foods. Stay well hydrated. Steer clear of spicy, fatty, and fried foods. Add a probiotic. LP299v is recommended. Don't take antacids 4 hours before or 2 hours after taking iron.

If that doesn't work the answer is to get an iron infusion, but with a ferritin of 90 you may have to go private and pay for it.

Which iron supplement were you taking and how many mg?

[Thebarber in reply to SueJohnson]

Hello, thanks for advice. I was taking ferrous fumarate 210 mg.

[SueJohnson in reply to Thebarber]

You might try taking only a half tablet.

[Thebarber in reply to SueJohnson]

Hi, I will. I will try anything and everything. Lol I'm thanks

[Joolsg]

Looking at your posts/replies, can I just check your medication? You mention you are on Pramipexole and that you take 4mg?Is that correct?

If so, I really think you need to make an official complaint to the GMC.

[Thebarber in reply to Joolsg]

Hi, I was on 4mg. I'm getting off it now. I'm down to 2mg per day at night. It has taken two months to get to this stage.( I was given 75mg once a day of pregablin to help with side effects). The worst two months of my life. I only sleep for fifteen minutes at a time either the pain or the twitching stops me sleeping. I must spend about Ten hours a day in the shower. It's the only place I can get some relief. I take codine and duloxertine for the pain but don't do much good. Was at GPs last week, I couldn't get a full sentence out in one go. Forgetting words, repeating myself. Getting in names and dates wrong. It's so embarrassing. Thank you for your concern. PS. I have had to type this reply Four by times to get it to make sense.lol

[Joolsg in reply to Thebarber]

Duloxetine causes/ worsens RLS. All anti depressants worsen RLS. Are you taking Duloxetine for depression? If you're taking Duloxetine for pain, stop now. It makes RLS much, much worse and your doctor should know that!Can you confirm you are taking Pramipexole?

If so, 4mg is EIGHT TIMES the maximum dose for RLS and you should DEFINITELY report the doctor that prescribed such a negligently high dose.

Have you experienced Impulse Control Disorder ( gambling, impulse spending, overeating, hypersexuality)? If so, you need to contact a lawyer asap and take legal action against the doctor who failed to warn you.

If you ARE on Pramipexole, you need to SLOW down the withdrawal. You reduce Pramipexole by half a 0.125 mg pill every 2 weeks. So getting off 4mg Pramipexole will take 64 weeks!

If you've reduced 2mg of Pramipexole in 2 months, no wonder you can't function.

Stay on 2mg until symptoms settle.

Then slowly reduce as above.

And have you had full panel iron blood tests?

[Thebarber in reply to Joolsg]

Hello again, my mistake I do take pramipexole but not 4mg. I was taking 4x 0.088mg I now take 2x 0.088mg. the duloxertine is for pain( I also have fibromyalgia) I told nurse practitioner duloxertine worsened RLS. She said to stay on it until I am off pramipexole as I will need to be weened of that as well. Sorry again about the earlier mistake.

[SueJohnson in reply to Thebarber]

I agree 100% with Joolsg about the duloxertine. My RLS was completely under control and I can take many of the things that make RLS worse but when my doctor put me on duloxertine for pain for something else, my RLS went through the roof. I would wean off that now.

The pregabalin should help with pain especially if it is from your fibromyalgia so you could increase that. Otherwise ask 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. And the codeine is probably the least effective opioid.

[Thebarber in reply to SueJohnson]

Hi, thanks again for the advice. I am only on 75mg per day of pregablin . I was started on 25mg and it has taken Two months to get it upped to 75mg. it's like I'm taking nothing. How much can or should I be taking to get some relief. My GP seems fine with me coming off pramipexole but seems reluctant to replace it with pregablin. I have halved the amount of pramipexole from 4 x 0.088 tablet on to 2 x 0.088. the pain and twitching are now at an unbearable level 24hours a day. Thanks

[SueJohnson in reply to Thebarber]

You can take up to 600 mg pregabalin although for RLS the usual effective dose is 200 to 300. However it won't help much for RLS until you are off pramipexole for several weeks. But for pain it might help now. 75 mg is just a starting dose. Try increasing it by 25 mg every couple of days but unless it helps with the pain I would stop at 150 mg.

Print out and show your doctor the sections of the Mayo Updated Algorithm on RLS to show your doctor that pregabalin is the first line treatment for RLS. Https://mayoclinicproceedings.org/a...

[SueJohnson in reply to Thebarber]

You might want to go up a half of a .088 tablet and let your symptoms settle since you are suffering so. It is counterintuitive but it will be a lot easier on you and in the long run will be faster. Then use the jewelry scale I mentioned before.

[Joolsg in reply to Thebarber]

Thanks for the clarification.Yes, it's probably best to wait until you're off Pramipexole and then slowly reduce Duloxetine..

Many doctors prescribe anti depressants 'off licence' for neuropathic pain, but they are unaware that they trigger/ worsen RLS.

For pain, medical cannabis works extremely well for fibromyalgia patients. It's available in the UK on private prescription from Lyphe or curaleaf pharmacies.

[Swillet50 in reply to Joolsg]

A few observations:1. I read a post asking if couch or bed make RLS worse. My experience, bought a motorized bed not realizing the electricity would bother me. After months of total misery talked to the director of our electric company and they came out and brought a guase meter. The reading was as all the way to the right si as high a reading as possible. After unplugging the bed huge difference in my legs. Now my electric couch is on a power strip so I can recline then turn it off. We also power off the wifi at night. I can say with no doubt wifi and electricity will effect RLS.

2. Mustard will help somewhat for RLS. Had a gentleman tell me that at a pharmacy one and I didn't really believe it. Tried it and was surprised how well it worked.

3. If you have RLS you may very well have the MTHFR gene which qualifies for medical marijuana. Now I dont like how it make me feel for day time use at all but I take a gummy with cbn and the called sweet dreams and that illusion exactly how U take it. Before bed and it helps me sleep mostly through the RLS. It doesn't make me feel groggy like a sleeping pill just sleepy.

[Hectorsmum2]

It might also be worth looking at permicious anaemia society website or forum. Your restless legs together with fibro could suggest B12 issues. You would probably do much better with a gentle iron, ferrous furmerate is rather harsh.

[BTABKWJ4561]

I had the exact same problem iron can cause that Dr said to stop taking it

[Weezie99]

Iron supplements turn your poop either a dark spinach green, or black. Surprised the heck out of me! Doc should have told me that would happen so I didn't think I was dying! 😆

[Munroist]

Iron bisglycinate is meant to be a lot kinder on your stomach than other supplements. I take a double dose every other night with some vitamin C, 2 hours away from any food, and I managed to raise my ferritin from 70 µg/L to 171 µg/L over the best part of a year. I use Holland and Barrett Gentle Iron. I did see some benefits but mostly moderation of the intensity of symptoms and twitching rather than reducing the frequency.

[CrusoeCortez in reply to Munroist]

How much bisglycinate do you take every other night? I'm currently taking 56mg every other with vit C, but GP said I could increase this to 140mg. I'm intending to ramp this up steadily and see how I go.

[Munroist in reply to CrusoeCortez]

I just take twice the standard daily dose on the bottle but I don't have any particular problems with iron other than being bit low. The bottle says one tablet contains 20mg iron which is 143% of the NRV (Nutrient reference Value) so every other night I take 2 tablets which is a total of 40mg. Other people on the forum say you can or should take more but I haven't found that necessary - maybe I should try it and see if it helps? If your GP has clearly said go higher then I would say it's worth a try.

[DesertOasis in reply to CrusoeCortez]

If your RLS seems at all better on nights you take the iron I would switch to every night. The ferrous bisglycinate rids me of my RLS in about one hour and for one night. So I must repeat every night.

[Rwall]

I've been taking Slo-Fe twice a day, but I started once a day. It's a slow process, but I've gotten my ferritin levels up well above the 100 mark and my RLS is much better. It's very easy on the system, and I can't tolerate many pills of any sort!