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Original poster

Ferritin / B12 levels

27 replies

VLCos · 08/05/2017 18:15

Three months ago ferritin was 14 B12 190.
Was told to try get them both up with supplements . Three months later retested ferritin now 21, B12 253 told normal . No need for anymore advice should I be continuing to take these supplements or is everything OK now ?

OP posts:
YNK · 08/05/2017 18:22

You should be on injections for life. Your B12 level should not be checked again once on treatment as results are skewed for more than 4 months. It sounds like your doctor hasn't got a clue!
Join this FB group asap.
www.facebook.com/groups/PAB12DSupportGroup/

Ferritin / B12 levels
Original poster
VLCos · 08/05/2017 19:27

YNK thank you. It's the nurse I might actually ask to see GP

OP posts:
marabounuts · 08/05/2017 20:08

21 is very low for ferritin. I was barely functioning when mine was at that level.

I think the normal range is somewhere around 15 - 290 for ferritin but there is a 'normal' range and an optimal. My GP said it should be at least 50 but ideally above 70.

Original poster
VLCos · 08/05/2017 20:23

Hmm I still feel totally shattered . Might just continue with iron tablets .

OP posts:
YNK · 08/05/2017 20:38

No, you need to see a doctor, although many of them are uneducated about autoimmune conditions.
Your ferritin is low but your folate and FBC should also have been tested. All 3 are needed to make red blood cells.
B12d is a lifelong chronic and potentially fatal condition. It can cripple or kill without the correct treatment.
Please join the FB group I posted. Admin there are world experts and it is imperative that you get the right advice.
There are links to lots of information in this website.
www.b12deficiency.info/what-is-b12-deficiency/
Please treat this with the utmost seriousness.

YNK · 08/05/2017 20:44

Make sure you also read this

www.b12deficiency.info/what-to-do-next/

Original poster
VLCos · 08/05/2017 20:58

Thanks for the info I will have a read. I've joined that group and asked there advice.
My FBC and folate was OK during first test . Ill get a print out of second test and check if they have changed. I will get in to see my GP tomorrow !

OP posts:
YNK · 08/05/2017 21:11

Phew! If you are in the group I can stop worrying!
Get a printout of your blood test for admin advice there (post right way up and obscure all names)
You need to follow their protocol religiously including all cofactors.
Good luck

Original poster
VLCos · 08/05/2017 21:22

Thank I posted and straight away got some brilliant help and advice. They are really on the ball

OP posts:
YNK · 08/05/2017 21:25

They are world renowned experts in there.
you are in safe hands now!

Shakespearesglobe · 09/05/2017 10:22

Hi, could I add a question? Been to docs as feeling tired - blood tests now back - red blood cells fine - he thought that ferritin was little low but in normal levels - 22 - and same with b12 - 207. He wants to repeat bloods in a month and then after that repeat have me take an over the counter supplement. Vitamin d was also low at 28. Went to see him originally with high blood pressure. Just concerned now that his approach was different to that described above? Are these normal levels?

Mummamayhem · 09/05/2017 10:25

My ferritin was 3! And I was just given tablets. I did get injections for b12. Keep going with tablets they do work.

Shakespearesglobe · 09/05/2017 10:49

So over counter ones are fine?

marabounuts · 09/05/2017 14:21

for iron? I took ferrous sulphate 200mg 3x daily. you can get it on prescription I think but OTC is cheaper.

Original poster
VLCos · 09/05/2017 14:40

So he is asking you to do nothing for a month with such low levels?

OP posts:
Shakespearesglobe · 09/05/2017 18:26

Yes - I'm not sure why he wants to repeat bloods when nothing will have changed as he specifically told me NOT to start the over the counter supplement until after the repeat bloods?

Shakespearesglobe · 09/05/2017 18:28

And the weird thing is that he didn't even ask about the tiredness

Original poster
VLCos · 09/05/2017 19:02

That is so strange could you get a second opinion from different GP ?

OP posts:
Shakespearesglobe · 09/05/2017 19:16

Maybe I should - are those levels normal? Gp seemed to be saying they were, but on the low side of normal. Googling they seemed too low but am aware Google can be a dangerous thing!

Original poster
VLCos · 09/05/2017 19:33

Both seen low to me. At least if he thinks they are OK but low they need some treatment not just leaving !

OP posts:
YNK · 09/05/2017 22:45

Sheakspearsglobe none of those levels are normal, please join the FB group I linked to earlier!

Shakespearesglobe · 09/05/2017 22:55

Thanks YNK - will do. Just wanted to check that I wasn't being melodramatic and wasting their time by posting on the Facebook page

TyrionLannistersShadow · 09/05/2017 22:59

I got my bloods done a few months ago and my ferritin was 8, my gp just told me to take Galfer once a day. Now 6 mths on I still feel shattered and she just said that ferritin is related to iron stores so in fact raising the level won't make any difference to my tiredness , that it's the iron stores my body would need if its under stress? It's not really what I wanted to hear.

Original poster
VLCos · 10/05/2017 06:58

The group on facebook is amazing please join if you are needing help and advice !

OP posts:
YNK · 10/05/2017 14:00

That's ridiculous - a level of 8 warrants an iron infusion!
It's horrifying that doctors can get these things so dreadfully wrong!