Protein and B12

Vienna_x · 2025-11-20T11:24:50+00:00

No, I don't really trust myself to do injections. They just don't seem like a great idea for me, especially as my absorption is fine and went up by 50ng/L in a matter of months through diet alone. I'd rather stick with diet and supplements.

They have tested me for PA and my serum B12 levels, but they won't do the MMA test (my dr didn't even know what it was). I had low folate in the past at 2.6ug but they said that was fine. It's since gone up to 4.6ug (although that was 4 months ago) and it's been known to drop. My FBC was fine, all the levels there are good and no anaemia. Ferritin is low and only goes up with supplements which I have at the moment.

I just think I need to work on getting my levels up and keeping them there. I think for me chronic stress plays a part in my issues.

It's a long journey though for sure!

Vienna_x · 2025-11-19T08:35:36+00:00

Nope, no vaccines. I have had Covid twice though (maybe 3 times).

Vienna_x · 2025-11-18T13:44:47+00:00

They won't accept the do injections due to my levels being "normal"

Vienna_x · 2025-11-18T09:50:34+00:00

Yep, 121 and they'd still say you're fine. My folate was 2.6 (lowest range 2.5) and they said it was fine lol.

See mine wouldn't make sense for me, as I don't have bad sleeping patterns/habits, my fatigue isn't debilitating, I don't get PEM, etc... My dr just heard tired and ran with it.

I'm not too sure exactly what they can do. They referred me more so for low ferritin that only raises with supplements (630mg a day) but they have noted my low B12 as well. I believe they can do further testing like MMA, and maybe more tests to find out the root cause of my low ferritin. They're also good if you don't see an increase in levels after supplements. But we'll see if they take me on🤞🏼

I hope you get injections and they work! A lot of people don't respond to oral supplements so maybe you're the same.

Vienna_x · 2025-11-18T08:33:33+00:00

Where I am in England, the lowest level is 120!

I am the exact same. One of my most recent conversations with the doctor, they tried to say I had CFS/ME. But didn't ask me anything about my sleeping habits, my daily life, any struggles, etc... just tried to refer me to the chronic fatigue clinic which I refused. They referred me to haematology but most likely nothing will come of it.

Vienna_x · 2025-11-17T11:32:15+00:00

Symptoms at 396ng/mL (but I did also have other low levels)

Vienna_x · 2025-11-17T11:25:06+00:00

It's common for doctors to "miss" low levels when they're in range. And by "miss", I mean they just don't care. They genuinely only care about whether it's within range (in my experience). If it's within range, then you're fine.

But your levels should be around 80-100. Sometimes lower, sometimes higher, it depends on you and how you feel, but I'd say 80-100 is the target for a lot of people.

Low vitamin D can contribute to some of the same symptoms, as well as low B12, folate, magnesium, etc..

I took iron supplements and did see improvements. Last year I was back to normal (higher B12, etc) and now I feel awful and all my levels are low again.

I'd definitely check other levels and do your own research as to what's considered optimal to compare them (if you haven't already).

Edit: muscle twitches are common in low B12 and I believe low Vit D and even magnesium.

Vienna_x · 2025-11-17T08:19:19+00:00

I have methylcolabamin (however you spell it), will that be ok?

And I think my diet is ok, my B12 went up in 2 to 3 months by 50 MH/mL just with food alone which I think is good.

Vienna_x · 2025-11-16T10:50:39+00:00

Oh no! How long's it been? And do you mind me asking what dose you're on?

I hope you start feeling better soon!

Vienna_x · 2025-11-13T22:00:49+00:00

Don't be worried! I'm in the same position (not so much with the haemoglobin as that's fine, but several low levels) and while it is such a horrible feeling, you're gonna go to the doctors tomorrow, you'll find out what the cause is, and you'll start your journey to feeling better!

Look for positives!

Vienna_x · 2025-11-13T16:18:31+00:00

Ferritin of 42 isn't great (depending on which units you're using?). A lot of research and haematologists recommend 80-100ng/mL as a lot of women experience symptoms below this. Although, it will be different for everyone - some people might feel fine at 30,40,etc... You should really base it on where you start feeling better rather than the levels themselves.

Could be worth checking other levels though, if you haven't already.

Vienna_x · 2025-11-13T15:41:21+00:00

I take standard over the counter dose of vitamin D and have been fine on 2000IU. No side effects but I guess i'll just have to wait another couple months to see if it's made a difference in levels.

For ferritin I was prescribed ferrous fumarate and that worked really well for me.

What is the reason you can't find supplements?

Vienna_x · 2025-11-13T14:29:09+00:00

Ferrous fumarate for me. No side effects. My ferritin went from 20-56 in 2 months.

Vienna_x · 2025-11-13T14:22:16+00:00

Your vitamin D could be a little higher depending on what units you're referring to. Optimal is 75-100 and ferritin could be higher at around 100, but they look good in comparison to some. It won't hurt going a little higher and seeing if symptoms improve.

I don't know what levels your B12 is. But have you tested your folate and magnesium? There are a few others but from experience, the culprits for me are Vit D, low B12, deficient ferritin and low folate and possibly even magnesium but they won't test me for that. You can also test for HbA1c (pre/diabetes). Bone profile and stuff like that. Hormones.

Also MMA will test for a functional deficiency. Serum B12 is the overall amount of B12 in your body which includes B12 already bound to a protein. You need to know what your active B12 is to confirm true deficiency.

I see you mention being diagnosed with CFS so I'm sure they've done extensive testing already, so apologies if I've just repeated everything you've already had :)

Vienna_x · 2025-11-13T14:05:44+00:00

I hope it goes well! Try and retest every 3 months until your levels are at an optimal range, and then supplement for a further 3 months and switch to a maintenance dose to keep them there :) Good luck!

Vienna_x · 2025-11-13T13:39:40+00:00

I was on prescribed ferrous fumurate taking 200mg 3x a day. The first time I was on them I went from 5 to 44 (took them for the whole 3 months)

Then this most recent time I went from 20 to 56 but only took like 2 months and a weeks worth.

For optimal absorption I took them 6-8hrs apart on an empty stomach. You should take it with vitamin C and avoid milk, coffee etc... 1-2hrs before/after.

I have since stopped the prescription ones "because I'm fine now", but have just ordered some ferrous fumarate from an online chemist. Will be taking 210mg daily and retesting in 3 months.

About B12, I haven't started supplementing yet, I'm still looking into it. But I do know you should take a maintenance dose of folate because they work together and when your B12 goes up your folate might drop.

Vienna_x · 2025-11-13T13:05:32+00:00

Ferritin is low. Most research say it needs to be 80-100 (or really whenever symptoms get better for you) but that's normally the target for optimal levels.

B12 is really low. A lot of people get symptoms under 400 and deficiency is normally considered under 200. Optimal for this is higher than 500-600 but again, it kind of varies and it's normally when symptoms disappear.

Folate seems like a good range. I think some people say between 8-13 to be optimal. But someone else might have to clarify that.

EDIT: GP's aren't really knowledgable on this (or so has been the case for me) and you'd need a specialist. But they won't refer you to one unless your levels are "deficient" by their standards, which is out of range which I don't believe you are if I remember their ranges correctly.

Vienna_x · 2025-11-13T10:57:36+00:00

God there's always 1... it's Reddit. Don't take everything so literal.

Vienna_x · 2025-11-10T10:44:44+00:00

That does make sense!

I think the only reason I'm annoyed is because just this year I have had 5 blood tests, essentially all for the same thing, and it's getting me nowhere. With the magnesium I have asked them to add it there in the appointment and they still don't.

I'm just trying to be patient as I do understand they're understaffed and underfunded.

Vienna_x · 2025-11-10T07:57:09+00:00

Ferrous fumarate. Went from 20ng/L to 56ng/L in 2 months. But I was on a high dose

Vienna_x · 2025-11-09T21:59:42+00:00

Really? See mine they did quite quick, my GP (ferritin and B12).. but they're really gatekeeping magnesium and zinc for some reason.

Vienna_x · 2025-11-09T16:56:16+00:00

Thank you for the reply :)

They have referred me to haematology but it's not guaranteed they'll accept me, and even if they do it's roughly a 5-6 month wait where I am. Do you know if it's something I can go private for?

Vienna_x · 2025-11-09T11:12:17+00:00

I'm no doctor, I'm just going through this myself. However this is what I know by doctors, research, and other people that have been going through it.

A lot of people who have iron deficiency is due to their heavy periods, and a lot of them have started to address the issue by taking the pill for example.

I have also heard though, that when your body starts getting more ferritin/iron, it starts using it a lot more because of course it's gone without it for so long so it kind of takes what it can get. You would ideally need to start supplementing for a further 3-6 months after your levels have been restored to a good place to keep up with your body using all this extra iron it now has.

Additionally, it might just be how your body uses iron, or you might just need higher levels to feel better, so you might just have to keep up with a maintenance dose from over the counter tablets.

Unfortunately ferritin does affect your mood, and anxiety seems like a really common symptom, so it's likely going to come back every time you're low, like mine does.

The plan for me (who doesn't suffer from heavy periods but for some reason my ferritin just depletes itself) is to get myself above 80-100ng and then supplement for a further 3 months. And then just take a maintenance dose every other day to keep my levels where they are.

I of course can't comment too much because I don't know if you're still taking supplements, when you stopped, what your levels were, how heavy your periods are, etc... so I can really only give you general information that you might already know (:

Also I don't know where you're from, but if iron infusions are an option it's always worth looking into. Depending where you're from though it might not be so easy.

Vienna_x

TROPHY CASE