Ferritin and TSI results.

[Dires]

Hi, I haven’t posted for a while as I have been investigated following a positive faecal occult blood test. They have found a large polyp in my caecum which I am having removed on Friday.

For some unknown reason, I have had a few months of remission from my RLS but now they are ‘kicking off’ again.

Just had my fasting bloods checked. My Ferritin is 48ug/l and transferrin saturation is 43%. The rest of my full blood count is normal.

I stopped taking iron while I was undergoing investigation. I was taking 28mg iron bisglycinate x2 on alternate days.

I intend to go back on the iron following polyp removal on Friday. It is possible that the bowel polyp was bleeding and I’m hoping things will normalise in time.

Could you please advise me on the dosage of iron bisglycinate for this level of ferritin?

I am not taking any other drugs for RLS apart from magnesium and the very occasional Zopiclone. I take Apixaban for Atrial fibrillation.

[LotteM]

I think you iron dose was fine. But you want to make sure it doesn’t affect your intestines negatively ; it can be ‘hard’ on the digestive track. Maybe ask a more generally formulated question about it to your treating doctor.

[SueJohnson]

Your ferritin might be artificially low if you are bleeding from the polyp and since your TSAT was 64% in September I would suggest only one 28mg iron bisglycinate on alternate days. And then have a new test in 3 months. Did you ever see a hematologist as I suggested in September?

[Dires in reply to SueJohnson]

No I didn’t Sue because the ‘polyp’ events took over. The rather bazaar results in September resulted in the investigation.

[Dires in reply to Dires]

Just thinking back, I had a repeat test in October when my transferrin saturation was 36% and ferritin was 58ug/l.

The docs thought the September results were incorrect?

[SueJohnson in reply to Dires]

Ah good. That makes sense. Then I would go back on two 28 mg iron bisglycinate.😀

Wishing you well on your surgery. Tell your doctors and anesthesiologists about your RLS and its symptoms. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"

[Dires in reply to SueJohnson]

Thank you again Sue for your valuable advice.

[Dires in reply to Dires]

I had polyps removed from my bowel and restarted iron about a month ago. Unfortunately my RLS is worse than ever resulting in just 2 hours sleep some nights. I often use music as a distraction which sometimes helps but then I’m so anxious about trying to get to sleep that I can’t. The RLS has also been reoccurring at about 0500 until I get up at 0700. I take Zopiclone once a week to try to get at least a few hours sleep.

I’ve been trying desperately to manage this without medication (contrary to your advice). I’m very fearful of the side effects of pregablin/Gabapentin and was hoping that my ferritin level would improve and maybe give me some relief. However, I don’t think I can last another two months to await a further blood test.

I’ve just made an appointment with Dr Jose Thomas in Cardiff which will be 25th March. Any advice from anyone as to how to manage until then please?

[prunesqualor]

So sorry to hear you have been having health problems. I just had blood tests and apparently I am anaemic and I am not sure if you are aware this contributes to Restless Legs, which I have suffered with since age 18. Why you put up with the RLS I am not sure. Four years ago after putting up with RLS and getting desperate I asked the doctors if they could help and was prescribed ROPINIROLE (marketed as ADARTREL). Since then I have been wonderfully free of RLS and I would be lost without this med. I take a small dose (0.5 mg) in the evening. This med is a drug originally intended for Parkinson's sufferers, but like some other drugs was found also to be good for an alternative condition - in this case RLS. There are no side effects (at least I have never noticed any). Do ask your doctor for a prescription. The tablet is magic. Good Luck.

[Dires in reply to prunesqualor]

Thank you.

I think I’ll leave this to Sue or Jools to reply. But maybe you should have a look at the Mayo Clinic Algorithm for the most up to date advice on management of RLS. Dopamine agonists are definitely not first line management.

Google the guidelines, they are really interesting.

[SueJohnson in reply to prunesqualor]

Ropinirole is magic until it isn't. It is no longer the first line treatment for RLS. Gabapentin or pregabalin are.

The reason is up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

So be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. If that happens you will have to get off it as it will only get worse.

[prunesqualor]

Whoa! Thank you. You are very knowledgeable about RLS. I haven't got a clue about dopamine receptors or things getting worse. Am taking 0.5 mg of Ropinirole for 4 years now. Occasionally I will have to take an extra tablet, but it's always after a very long walk or too much to do at work (physically). Now I am worried. Not sure I will continue with HU I've got enough problems with the depression, which I've suffered with since age 18. Doctors took me off Mirtazapine - it was over the Christmas period. I was so ill with withdrawal. I'm now on 15 mg of M and feel better. I just want to feel alright. To be honest I will take anything to ease physical or mental pain. Not interested in coming off a prescribed drug if it is doing the job. I am a coward.