Can someone advise me about my ferrit... - Pernicious Anaemi...

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Can someone advise me about my ferritin and folate levels please

tmoxon profile image
16 Replies

HI I first posted on here in September last year asking about my vitamin B12 levels which were over 300 at the time, I had another test in October and that came back as 257. The help I received from this site gave me the information to ask my GP for the injections and I will be having my third one on Monday. I think I am already starting to feel better.

I also found out in Oct that I had a Vitamin D and zinc deficiency and have been on meds for this since December.

Could anyone please help advise me whether my serum folate is at a good level please, it is 11.9 ug/l - no range, so have no idea what the ideal for this would be and my ferritin is 27 ug/l range 15 - 300.

I did mention to the nurse that I thought that my ferritin was low, but she advised that it was within range, she had no idea about the folate.

Thank you for any advice you can provide

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16 Replies
suki65 profile image
suki65

If you are on b12 your levels should be above 500 any lower and you should buy b12 1,000ug one a day,these have helped me so much but i was told by my gp normal was 300 but i was very ill i now take the b12 every day and my levels are 548 i feel so good .buy the book could it be b12 it is written by 2 doctors that retired due to rules and regs

also keep an eye on your vitamind3 ,ferrattin,folate and magnesium

tmoxon profile image
tmoxon in reply tosuki65

Thanks for replying, I am getting the vit b12 injections now, just wondered what the optimal folate and ferritin is. Glad you are now feeling better.

johnbarriesmith profile image
johnbarriesmith

If you are having to have B-12 injections you will find you will find you have Auto Immune issues

First of all check in your family for Endocrine issues this wil give you clues to hereditory facts , secondly just in range will keep you ill for the rest of your life , I can guarantee that from personal experience .

Do your research via the relative self help groups members have been there and got the T shirt .

The Endocrine system is corrupt with Commercial Interest holding patients lives at risk .

tmoxon profile image
tmoxon in reply tojohnbarriesmith

Hi johnbarriesmith, I can totally relate to what you are saying about being ill, unfortunately I don't have any family members still alive, both my parents died when in their 50's. I have Coeliac Disease and have been gluten free for nearly 3 years but if anything instead of feeling better I think I have felt worse. I had 2 vit b12 injections last week with another 4 over the next week, its early days but I am feeling much better. My daughter is also having the Vitamin B12 injections and is also low in vit D, I think she has some sort of auto immune disease but they have tested her for CD and say she hasn't got it. Thanks for your advice

Serendipity16 profile image
Serendipity16

Hi Just googled folate reference and I think you are ok on that pathology.bsuh.nhs.uk/Patho... 4.6-18.7. In my experience my b12 was about 158 for a year before I got 6 b12 injections and then I had to let it drop for a year to 167 before I could get treated again - I'm now on 6 injections and will get to have the follow up every three months forever so while it might have felt like a battle it's great that you can get the injections. Over the last two years my folate has been low/ borderline 3 times so it is definitely worth keeping an eye on but you seem to have good levels for now. My ferritin was tested for the 1st time in years this month and it was low (I dont know what number) so I'm on iron tablets with a blood test due in 6 weeks. My doctor thinks it may be dietary for me as my intrinsic factor and ceoliac tests were fine but hopefully the ferritin test will help show if I have any absorption issues. I guess the doctors are putting your deficiency down to the coeliac ? Good luck and I would keep an eye of the ferritin but not worry at the moment.

tmoxon profile image
tmoxon in reply toSerendipity16

Sorry Serendipity I didn't see your response until now. Well done finding the folate reference i did try before posting and the nurse didn't know either.

Since I posted I mentioned the low ferritin and Dr prescribed iron tablets for me. I think I have been lucky with my GP as my daughter who had the same symptoms as me ( in fact worse) has also been prescribed the injections, all we did is ask if we could have them, same with the iron.

I asked for my daughter vit b12 to be checked after help from this website, she has been to a neurologist to see if she has MS as her symptoms were getting worse, her sight was affected also, her level was 227 mine was 257. The MRI scan came back the other day and luckily she doesnt have MS. She had her injections before Christmas and is starting to feel better now, we went to the gp over the Christmas period and got an extra injection, but is also on vitamin d supplements as well, she has not been diagnosed with CD so we have no idea why she is having the issues, I think she has had these issues for a long time as she has been diagnosed with ME.

From looking at my notes the doctor has said I am having the 6 injections ( 2 to go) and then in 3 months time have another one. To be honest I had already contacted the London hospital with a view to getting an active test done but I didn't when the doctor agreed to the injections. Thanks again for your help

Folate is OK, could be slightly higher. I would recommend taking a B-complex with all 8 B vits (including folate), reason being that taking one on it's own can throw the others out of balance.

You're ferritin is on the low side, need to get up around 80. You could try raising it with Spatone, say 2 sachets a day, but then get a retest to see if it's working. If not you might need something stronger.

tmoxon profile image
tmoxon in reply to

Thanks Hampster, do you have a recommendation for the B complex, or will any do from the supermarket etc?

I thought that I had read on another post that once on the vitb12 you use more folate and the level can drop. I have been given iron tablets from the GP since I posted but thank you for letting me know about the Spatone. Thanks for your help again.

in reply totmoxon

Thorne Research is often recommended by PAS, £15 on Amazon for 60 capsules:

amazon.co.uk/Basic-Complex-...

I use Pure Encapsulations B Complex Plus, which is a similar formulation, but difficult to source in the UK. You can order from Breakspear Medical Group, but you have to call them at the moment as their online shop is down for maintenance:

pureencapsulations.com/b-co...

breakspearmedical.com/

You can sometimes get them on Amazon, but at the moment the price is extortionate (it seems to change from week to week). The price is normally comparable to Thorne Research, so 120 capsules is about £30.

For a more budget option, try Holland & Barratt Complete B:

hollandandbarrett.com/pages...

Personally, the cheaper vitamins make me feel sick (more fillers and binders) so unfortunately I have to stick to the expensive brands.

The things to look for are: a) all 8 B vitamins; and b) not too much B6, say less than 60mg.

H x

in reply to

I meant to say the iron from your GP will contain more than Spatone so stick with what you've got :-)

in reply to

Hello hampster1

I got some B Complex but was surprised it said like 6000% - not had it as seems very strong??

in reply to

As far as I'm aware all the B vitamins are water soluble so any excess is excreted in urine. The one to watch however (as far as I'm aware) is B6, as that can cause unwanted neuro symptoms in excess. So as I said above make sure the B6 content of your supplement is less than 60mg (that is what I have been advised by the PAS).

What B vitamin in the complex are you worried about? Mine has B1 and B12 at 6000ish% RDA.

in reply to

thanks

lamberts b100 - b12 4000 thiamin 9090! b6 7143% rda

I was only trying to help the b12 a bit, think I got the wrong ones

ps looked closer- a ll 100mg except folic, b12, biotin funny ug -they didn't say % I looked - oh say longterm intake of this amount of b6 may lead to mild tingling numbness - ha got it anyway - thinks I;ll send it back in case - thanks

tmoxon profile image
tmoxon in reply to

Hi again thanks for the recommendations, I am always worried that because I don't know about much about this I do more harm than good, and I didn't know about the vitb6.

The Thorne ones on amazon have increased in price since you posted, I have found this a lot with Amazon, there is a website called CamelCamel where you can monitor the price fluctuations apparently.

I have also searched and found this site uk.evitamins.com/b-complex-...

Thanks again for the good advice

in reply totmoxon

That's a good find, thanks for that!

in reply to

Although just checked it and its imported from the USA. I've made an order from another website that ships from the USA, and I'm still waiting for it 3 weeks later.

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