Vitamin B12 Deficiency

Hi all,

Well, I've had the blood tests and all three - Folate, B12 and Ferritin have all come back a bit low. When I rang up for the results I was told, "They are all a bit low but doctor says no action required" ??

I went to the Nurse today to have my HRT review and asked for the numbers -

B12 - 185

Folate 9

Ferritin 12.2

By what I can gather, anything below 200 in B12 is low and requires attention and normal Ferritin levels are from 11 to 307 so I'm just barely above the lowest point there as well.

Any suggestions as to what I should do? I was thinking I should start with a face-to-face with my GP?

24 Replies

oldest β€’ newest
  • I have no idea what my count is but have confirmed pernicious anaemia, the symptoms you can look up and then if you think you have the symptoms it would be worth talking to your GP or RA consultant. There are different types of anaemia, and diet can be one. I would think your GP will not mind you asking for more information and then you will have all the facts at hand.

  • Thanks medway-lady ,

    Have a family history of pernicious anaemia and I'm pretty sure that's the road I'm heading down - may be just too early to start treatment. Will definitely speak to GP although goodness knows how long I will have to wait for appointment! :-)

  • More than you ever wanted to know about B12 😳 πŸ™ƒ :

    πŸ‘‰ healthunlocked.com/nras/pos...

    πŸ‘‰ PAS (Pernicious Anemia Society) forum: healthunlocked.com/pasoc

    .

    If physician is a 'heel dragger' (or 'knuckle dragger' πŸ˜‰ ), NanaFifi, remember -- it's your body. You can sit around -- waiting weeks/ months on end for the 'pope's blessing' -- or you can: assess risk (pros & cons), engage brain, & act in your own best interest. πŸ‘ Think things through.

    .

    [For me, I'd good fortune with tablets (gut able to absorb B12) & haven't had to have injections (if gut was unable to absorb B12). Perhaps you, too, could be lucky that way, NanaFifi. πŸ‘ For me, I strongly suspect it made the difference between feeling I'd been unplugged πŸ”Œ from my energy source ⚑️ several times a day, and feeling like I'd fully charged batteries πŸ”‹πŸ”‹ throughout the day. (Big 'quality of life' turnaround. πŸ€— ) It may well contribute to re-inflating in your 'bouncy castle'🏰 too:

    healthunlocked.com/nras/pos... . πŸ˜‚ ]

    .

    Pinksugarmouse has kindly suggested Marmite as a 'food source' of B12: healthunlocked.com/nras/pos... . Provided your gut is able to absorb B12, (& if Marmite is a 'safe' food for you) -- no harm no foul ( healthunlocked.com/ra-warri... ). πŸ‘ Speculating -- in order to boost B12 levels sufficiently though, you'd have to ingest quite a bit of Marmite! πŸ˜‹

    .

    Also, for iron, Lucky Iron Fish 🐟 ( luckyironfish.com ) might be a possibility?

    🐟 healthunlocked.com/nras/pos...

    🐟 healthunlocked.com/pasoc/po...

    .

    Merely thoughts for brain cells to munch on. 😊

  • Thank you Kai-- , I'm of the same opinion in respect of "this is my body and I know it best!" Problem having RA + Lupus + under active thyroid is that tiredness/fatigue become routine. Clawing my way back from flare up if RA and Lupus but really feel the tiredness is disproportionateto other symptoms. Will post on the pernicious anaemia site. :-)

  • The overlap/ interconnectedness of the disease 'trifecta' with fatigue as an inextricably woven thread amongst them all perhaps could be viewed ('lumped together') as not only overall bodily disease -- but overall bodily nutrient depletion/ 'starvation'. Once that 'depletion' ball 🏐 starts rolling, we start accumulating more & more autoimmune disease symptoms/ 'labels'/ diagnoses . . . 😳 😱 πŸ™ƒ (The 'parsings' & sub-sub-sub categorisations can get a bit 'silly' after a while . . . πŸ˜„ πŸ˜‚ )

    Once we see the pattern & begin to 'connect the dots', we can attempt to improve the trifecta 'in unison'. Our body reacts 'as a whole' -- even to 'separate silos' of (whatever) disease labels are slapped onto our multiple/ overlapping disease symptoms. πŸ‘ [Oh goodness, what am I blathering on about?! 😳 πŸ˜‚ This is 'stuff' you're already all too well aware of! πŸ™ƒ 😁 ]

    Anyhoo, hopefully, as B12, iron, . . . improves/ settles, you'll see overall diminishment of fatigue. πŸ‘ [No fun (near impossible) to function on depleted batteries! 😴 πŸ›Œ πŸ’€ ] Smart, smart lady. πŸ™ You've got a good handle on it! πŸ‘ πŸ€—

  • Are you optimally medicated regards your thyroid Nana ?

  • I believe so, I'm on 100 micrograms thyroxine and thyroid function tested about 6 months ago and results were fine.

  • Good to hear NanaFifi :)

  • All of those are very low in range and the problem with ranges are that they are taken from a sample of bloods received in a given lab. Your own personal "normal range" could be right at the top.

    Have you checked the symptom list at b12deficiency site? Would be worth posting this on the Pernicious Anemia health unlocked community too. I have read that under 500 b12 can cause neurological damage and in many other countries treatment is given below 500. Gps don't really want to treat when things are in range even with symptoms but writing a letter using guidelines and providing a list of symptoms can result in treatment, asking for referral to consultants also can help.

    B12, folate, and ferritin deficiency is also cause for coeliac disease testing so look into that too.

  • Thank you CarpaBob, I do have some of the other symptoms of B12 deficiency and will definitely follow this up. :-)

  • Hi I don't know if your in the UK. You can buy vitamin b12 patches from amazon.i have them it's like a plaster u were on your arm for 24 hours. I also buy vit a that way for the winter.hope that helps x

  • Hi nana, if I was you I would take supplements, and go for more blood test in couples of months , I am sure that will make a difference, that is what my doctor told me if he find somethings low ,plus is good to take extra vitamins D , people whit RA usually have a D deficiency to.

    Good luck

  • Thanks for that, I think that's a really good idea. May speak to Rheumy nurse before starting supplement just in case it skews my blood test results - on methotrexate and have bloods do e monthly. :-)

  • You need that discussion with your GP. It may be that they are waiting for your next blood test to see if your levels are continuing to fall and need treatment or are part of the variation that occurs with any test. Or your GP may not be a "pro-active" sort of person and is waiting for you to make that appointment?

  • Thanks, I get the feeling that our GP practice is more focused on profit than patients. :-(

  • Hi Nanafifi,

    There is a health Unlocked site on here Health Unlocked Called PAS (Pernicious Anemia Society) it is also for low/deficient Vitamin B12 sufferers too. They can spot a B12 problem a mile off and help you forward (with your ferritin and folate low levels too.) Yes I would class your 185 as very low, I would not be happy with it.

  • I will absolutely go and post on there! Thank you! :-)

  • I notice that in the case of vitamin deficiency, the first port of call appears to be supplementation rather than looking at diet. Is there a reason for that?

  • Merely speculation: when we reach the 'πŸ’©-hits-the-fan' point -- we can be in a pretty dire state, which needs a 'big hit' πŸ™ƒπŸ”¨ (dose of nutrient) to jump-start our system. [Foods may simply not contain enough nutrients (at least in the quantities we can reasonably ingest them) in that initial 'emergency/ crisis' state.] Thus, supplementation (tablets, sublinguals, patches, injections, etc.) is the speediest way to get a hefty dose in us pronto in an attempt to 'right the course'.

    (Merely my clunky layman's 'speculations/ explanation'. There's probably more 'refined', medically/ scientifically/ technically precise ways of explaining it, which perhaps folks of a medical/ scientific bent could clarify for us.)

    And, (to my mind) the goal is to eventually (hopefully) wean off 'supplementation' & be able to solely rely on foods & beverages for all nutrient needs. Unfortunately, for some of us, due to life-long conditions/ situations -- some nutrient supplementation is a continual/ consistent/ persistent requirement for whatever reasons (poor gut nutrient absorption, yada, yada, yada . . . ) .πŸ™ƒ 😊

  • While some people may need supplementation for smaller or longer periods, I do wonder whether knowing medications and conditions well might allow dietary decisions to be made at an earlier stage and avoid crisis supplementation. Such knowledge is part of the self-management of long-term conditions that is encouraged.

  • Bingo! πŸ‘ πŸ‘ πŸ‘Œ

    The logical extension is:

    Practicing preventative medicine (via nutrition/ foods) is key‼️

    You win all the prizes, Osidge:

    πŸ… πŸ† πŸ’· πŸ’Ά πŸ’΄ πŸ’΅ πŸ’° πŸ’³ πŸ’Ž πŸ‘‘ πŸ¦„

    .

    πŸ€—

    .

    Think it would have averted (or at least ameliorated) much of our sufferings in the 1st place! πŸ™ƒ πŸ™‚ As well as the need for crisis supplementation! And, come to think of it -- 'crisis medication'. After all, isn't that what meds are -- a response to crisis?!

    [Hmm . . . come to think of it -- both meds & supplements are both (like?) 'drugs' in the sense that they're both 'heavy-duty' tools/ responses/ arsenal to heavy-duty bodily problems (crises, emergencies). Oy vey! 😳 😱 πŸ˜‚ ]

    .

    Oh well, 'live 'n learn'. πŸ˜‚

    After traveling farther down the road (perhaps a bit later in the journey than we'd like 😣 ), we learn the significance of self-management (dietary and lifestyle) -- along w any meds -- of our long-term conditions. πŸ‘ (Better late than never! πŸ™ƒ πŸ˜‰ )

  • I would definitely start supplementing. Pick up a methylated b12 (I like the jarrow brand that goes under your tongue) also get yourself on a methyl folate and an iron supplement. The fact that your doctor is telling you to not do anything about it is really upsetting to me because I had an iron deficiency anemia and I had a pernicious anemia and now I have horrible, irreversible peripheral neuropathy & nerve damage from years of being deficient. Trust me, it's not something you want.

  • Thank you so much Karilynn and I'm so sorry to hear that you've been left with that sort of damage. I will get started asap.

You may also like...