Last Wednesday (26th July) I had my 3 monthly blood test in relation to my Myelofibrosis and asked for my Ferrittin level and TSATS to be checked also. The Nurse/Clinician found Ferrittin on the data base but not TSATS and was a bit baffled by the whole TSATS thing. I concluded that I would only get a Ferrittin level result.
The following day I discussed the results of the blood test with one of the Haemotology Consultants and asked what my Ferrittin level was. It was found to be 17. ( My GP told me today that it was previously 80). The Consultant was of the opinion that my Ferrittin level is low because I lost a lot of blod during a TURP operation 7 weeks ago. I told him that I belived that my Ferrittin level should be over 100 and his respone was that it should be between 30 and 50 but it varied a lot. When I asked about my TSATS he dismissed this as not useful information at all.
He agreed that I should take an iron supplement and would include this in a letter to my GP along with the MPN results.
For the las couple of weeks I have been taking 100mg Gabapentin at 6pm. After two weeks I was told by my GP to increase to 200mg and then after a further two weeks increase to 300mg. However this has done nothing to improve my RLS and so for the past two nights I have taken 100mg at 6pm and a further 200mg at bedtime. This has improved the situation a little.
Today I saw my GP and explained this to him and he has now increase my Gabapentin to 300mg 1 hr before bed to be increased it to 600mg if required after 4-5 days. I doubt that the 300mg before bed is going to work and I am tempted to take 400mg. He did not agree with the opinion that Gabapentin should not be taken in doses over 600mg in one go.
He also prescibed 200mg Ferrous Sulfate tablets to be taken once daily and from what I have read I belive that this is best taken at night with some orange juice.
I also take Omeprazole daily but he did not want to change this as I have been taking it since 2019 and he does not want me to change too many things all at once as i will also be changing the blood thinners in the near future.
For the past 6 weeks i have slept in the spare room so as to not disturb my wife and so that I have more freedome to thrash about. I have recently set up a small indoor security camera and have recordered my sleep. The footage shows that I move both my legs and my arms every 15 - 20 seconds throughout the night even when in light sleep. My hands and fingers also twitch which is a bit odd. The RLS tends to reduce at around 4am and I get some broken sleep from that time onward.
I am finding it very confusing that there seem to be so many different opinions about what to take or not take and the dose.
I would be grateful for any thoughts on the above or other peoples experiences.
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SaltyUK
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Only dose of gabapentin that works for me is 600mg. I am currently getting an iron infusion. Hopefully I can go off gabapentin. It makes me clumsy, sleepy, and grumpy....3 of the seven dwarves!
Since your ferritin is so low take two tablets of of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets.
He may not believe about it not being absorbed as well above 600 mg but that is stated in the Mayo Clinic Updated Algorithm on RLS so he is wrong.
As long as you don't have RLS earlier in the day take it all 1 to 2 hours before bedtime.
It is not surprising that the gabapentin hasn't done much for you as the dose you are taking is low and it take 3 weeks to be fully effective.
I am surprised they weren't able to find the TSAT on your blood tests as it is tested with a full panel iron test. Another name for it is transferrin saturation. However it is probably fine so I wouldn't worry about it.
Thanks for your reply’s. I do get RLS earlier in the day also. Anytime from mid afternoon onwards if I sit down and try to relax. However the symptoms ease temporarily if I stand up again and walk about so I’m more concerned about taking sufficient medication at night so that I can get some sleep. I think that my GP would pisibly prescribe more gabapentin to be taken earlier in the day if I ask again but I thought I would see how I get in with the increased dose at night first and the iron tablets.
Hi Salty - I see you got your blood results and haematologist has suggested you start on oral iron. Do not be tempted to take more than the dose suggested as we folk who suffer from an MPN walk a very fine tightrope regarding what medicines and supplements we can take safely without causing a major bleed. Your ferritin level is very low so obviously you need some iron. Can I ask do you see an MPN specialist or just a haematologist? If you have not been assessed by a proper MPN specialist you should really think about setting this in motion. Most haematologists are not experienced enough to deal with these blood cancers unless they are part of an MPN team. You said before that you did not think your condition was as bad as mine but actually mine is well controlled at present with good advice. Do you also know not to take supplements without asking if these are OK. A lot of supplements - even vitamins - are not safe to take.
Please excuse me if this is of no help to you but you seem to be getting conflicting advice and this should not be the case. If I can help you at all please contact me even by private message. Take care
Thanks for your advice. The Consultants I speak with are all part of the cancer care team at the Freeman Hospital in Newcastle. I’ll ask if they have an MPN specialist but I think that generally speaking they are all very knowledgeable people. I’ll certainly bear in mind your advice. The consultant I spoke to did say that they have to monitor my blood carefully to avoid complications.
I have never taken supplements in the past and don’t really intend starting. I live a fairly healthy lifestyle and have a healthy diet generally.
Hi Salty - Glad to hear you seem to have a good team behind you. I hope you get your restless legs sorted ASAP. It is such a disruptive and exhaustine ailment which not only affects the patient but also the close family. I send you all good wishes in your treatment.
600mg is normal to take 1-2 hrs before bed and if he’s saying ferritin 30-50 he’s not up on ferritin and rls. There’s lots of documentation you could show him
Hi Salty, I asked my GP for an full iron panel yesterday, but the system wouldn’t let her ask for transferrin unless she ticked a box to say I had a particular condition (can’t remember the name of the condition). So like you I am only able to check my serum ferritin levels. I am in uk.
I’m aiming to ask for a second iron transfusion if transferrin is lower than it should be. I had my first last December and it helped. Had it at Newcastle Foundation Hospitals Trust- prescribed by the neurologists there as a first line treatment- together with Gabapentin - so at least they are a bit clued up with protocol. However when I mentioned the awful effects of dopamine agonists they said they were fine to use - which was disconcerting to hear.
Hi, thanks for the info. I intend asking my GP for a full iron panel test in about 6 weeks time to see how things are going and I’ll ask them to make sure they find a box to tick so as to check TSATS.
what I was trying to say was that there wasn’t a way for her to ask for TSATs. But maybe different health authority’s have different systems, so good luck with yours. When my results come back I will only have the serum ferritin results to ascertain whether I need or don’t need another infusion.
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