I want to thank everyone so much. After four years of being diagnosed with ME and losing my career, income, and very nearly my spirit I decided to go back to the GP (I had consigned the NHS to useless because if the ME "treatment").
I decided I wasn't going to put up with the new symptoms any more. My levels were around 400 so my GP said I can't be treated. I took husband and presented the symptom checklist and BNF guidelines and she agreed to write to a haemotologist. The good news is he upheld the BNF guidelines so I got five loading doses and 3 monthly follow up with no testing needed.
I've since re read the guidelines and highlighted my severe neuro symptoms and asked for a loading dose of every other day for the full three weeks (10 jabs) and two monthly follow up for life. All of that is directly down to the community on here and now to have had the NHS listen (and believe me) has improved my spirit no end....even noticed by my 16 year old son!
My question is about Folate and ferritin. My levels when tested in August were :
Ferritin 25(10-300)
Folate 10.4
I have an appt in Sep with the same Doc about these as I keep reading I need folate to absorb b12 but I've googled and searched and can't find what it is that I need to discuss with her so feel a bit unprepared. Can anyone help with these results and offer (unqualified!) best practice advice on folate and ferritin?
Thanks so much. Enjoy the sun
Surfie
Ps
I tried to find the pinned posts on the homepage but being a Luddite I can't find them!
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Surfie
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Most people take folic acid/methylfolate along with B12 because of this as if you increase your B12, you therefore increase demand on the folate and can then become deficient in it too. This would then limit your ability to use the extra B12 you are getting. B vitamin complex is something I use each injection time to try to keep my levels in balance.
Most people could benefit from taking 400 ug of folic acid per day. Tesco sell a nice, cheap, one. Unless you eat a diet with lots of leafy green veg, lentils, beans, etc it is probably worth topping up.
If your doc prescribes iron then it will probably be iron sulfate. This can be difficult to absorb and can cause some gut problems. You may find it better to take them with ascorbic acid (Vit C) and citric acid - as they help with absorption. Of take something like iron fumarate or bisglycinate as they are also easy to absorb.
The pinned posts should be over there -------> on the right if you're using a full-sized web browser. Not sure where they may be on a phone.
Hi Surfie I am so pleased to read your "success story" as sadly they don't come down this way too often.
Congratulations to both you and those lovely and knowledgeable people in this community who gave you such good advice.
My beautiful 40 year old stepdaughter has had "ME" since High School which seems to come and go with varying intensity and she really struggles at times with her 3 and 5 year old children necessitating several days at a time periods of help from her Mum. I've suggested she gets her B12 level checked and even let her read extracts from “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. but she hasn't done so.
I would love to know what effect the B12 injections have had on your "ME" symptoms.
Well, I will report back! I am also happy to share other things that I've done that have helped over the last four years both physical and psychological. It's a jigsaw for me and b12 is a part along with many other adjustments/changes. I'm happy to contact you/step-daughter through private message if that's something that would help? Let me know.
I've copied your "story" as a "reply" to emails between my stepdaughter Zoe and me from last year on the subject and "urging" her again to at least get her levels checked.
I've got my fingers crossed which sadly makes typing a bit difficult
The "BCSH Cobalamin and Folate Guidelines" may contain the advice you need. Easy to find with an internet search.
You mentioned the BNF guidelines above, has your GP got a copy of the BCSH Cobalamin Guidelines?
Your ferritin levels while in range, are at the lower end of normal. I certainly had problems with levels like these, I looked very pale.
Have you has a full blood count (FBC) test?
Low iron levels can lead to microcytosis (small red blood cells) . low b12 and/or low folate can lead to macrocytosis(enlarged red blood cells). A person with both low iron and also low b12 may appear to have "normal" range MCV and a GP might miss problems if macrocytosis from low b12 or low folate is masked by the effect of low iron.
glad I read your post Surfie it has given me the impetus to write to the haematologist at my local hospital who I have not seen but who my GP contacted for advice. I don't believe my GP gave the full picture to them as I have a copy of the reply to the GP which states not appropriate treatment for 'vague aches and pains'. My symptom list is as long as your arm and B12 level low at least since 2004.
So a bit of letter writing and downloading the guidlines yet again and see what happens.
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Please help! Folate
Wahoo I won....well kind of 
What is my next move ?
High folate level 
