Have had low ferritin (2) and never had b12 tested

Had low ferritin for ages, it's only coming up very very slowly, seen gastroenterology specialist who just said I need to take iron indefinitely, either daily tablets or intravenous every 6 months.

No one has said how much to take....my GP said for me to adjust as necessary....well I don't know how much I need, as if I don't take enough I have bad fatigue, if I take too much I have bad fatigue. What am I to do. (not to mention memory issues, disturbed vision, confusion, anxiety, depression, breathlessness.....you name it..)

Then to top if off, this is 3 years after a ferritin result of 3, no one mentioned it was that low but instead decided to send me to the gym to lose weight - I was a size 12 and weighed 11 stone. Over weight possibly not obese though. I passed out at the gym - big surprise.

I was giving blood and was encouraged to carry on by the same doc that had the result of ferritin 3 come in. (I didn't know it was low iron at the time I thought I was ok, had I known I would never have given blood - I doubt it was of any use to anyone (?) )

I chat to a lot of people and they always ask me what my b12 level is, I always answer, well I assume they've tested and that it comes back ok, it's not like they share much info with the patient but a doctor looks at them and says its ok, they only ever pickup up on the ferritin (of 2, thank god it was a different doctor - I believe she saved my life). She actually said "I've never seen a 2 before...." and I was prescribed 210mg of ferrous fumarate 3 times daily, I've been on iron now for over 2 years, although not taking 3 anymore, I've tried chopping and changing the amount.....and cutting down to one every other day, my last ferritin result (feb 2015) was at 69 - which is the highest it's ever been for me, but the way I felt was closer to it being a lot lower again, my vision was badly disturbed and my balance was non existent along with a worryingly poor memory.

Recently I wondered if the b12 was just 'ok' not actually a good level, so I decided to give the surgery a ring and ask if they could check what my latest level of b12 was. I was on the phone waiting a good while, and the very helpful lady looked through blood tests going back over 3 years ago.....and guess what, she couldn;t find b12 test results.....AT ALL.

I though maybe she missed something or she was short on time and didn't want to be rude (which was fair enough but she had stated all previous ferritin results....and I know they were right because I've logged them in excel so I can see the results in a graph and get an idea of where I'm at.)

So today as I was getting a bood test, testing folate, ferritin and b12, I mentioned to the nurse that I thought I may have had b12 tested before but wasn't sure, she too proceeded to check through my previous results.....and nothing.

I've been tested for coeliac and all sorts, but not b12? How can this happen? I really mean why does this happen, I'm not a doctor but in any diagnostic work, surely you eliminate the most obvious / simple / easiest to resolve problems before all the other stuff.

I'm not a vegetarian, I've been put on cerelle and I don't have periods at all with them, so it's not monthly blood loss.

My cousin has been on b12 injections for years....and the symptoms seem the same. I'm now just "watching this space". My aunty has just this last week revelaed that she is having identical symptoms and has had to have time off sick from work and that shes been given anxiety tablets. I had a long chat with her and asked if they'd tested her bloods at all for iron/ferritin/b12 etc - and no they hadn't (this is a different surgery) the thing is, my aunty actually had b12 injections when she was about 13, this would have been beginning of the 80's.

Has anyone else experienced anything similar ? Has it turned out to be something other than b12?

Would it be worth seeing a hematologist? I'm willing to go private.

I just feel like I've stopped living because of this now, if this is all I've got to look forward to, I'm not so sure I want it.

Sorry for the rant ...

Thank you anyone that's read the above. I'm really interested in your views and suggestions on this.

Thanks again,

S, x

9 Replies

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  • Sounds very much like you could have Pernicous Aneamia which often masks as hypothyroid but also can run hand in hand

    B12 test is first step then tests for Intrinsic factor should be done

  • Thank you for your reply - will bear this in mind :)

  • If you are prepared to pay, then as a first step get some blood tests done privately. You don't need a referral or your GP's permission.

    If you can get to a Spire Hospital, then I would recommend the Comprehensive Plus V test from this site (see 2/3 of the way down the page) :

    privatebloodtests.co.uk/

    It also offers a free test if the cost of what you order is high enough, so include the FT3 and TPO test (see the blue column on the left for the list of available free tests). For the test I've referred to the phlebotomy (blood draw) is included. Fast for 12 hours before the test (apart from water which you can drink as much as you want). Get the blood drawn as early in the day as possible. My local Spire Hospital opens for phlebotomy at 8.30am. Be there ready and waiting!

    If you aren't near a Spire Hospital there are other options.

    Don't start supplementing B12 until after you've been tested and got the results. If your results are low then you will need to be tested by your GP for Pernicious Anaemia, and supplementing B12 before those tests makes them almost worthless.

    Another thing to think about is that you may have coeliac disease and need to go on a gluten-free diet. But before doing that you would need that (coeliac disease) to be tested for by your GP too.

    I had very low ferritin, although not as bad as yours. It took me about 20 months to get my level up to 69 (same as yours - just a coincidence), and like you if I don't take iron I go downhill very quickly indeed. If I take too much that makes me feel terrible too. What made the difference to me was going gluten-free in January. Suddenly my ferritin leapt up to just over 100. I still have to take iron otherwise my ferritin starts to drop rapidly, and I'm constantly adjusting it to how I feel. But I do feel better being gluten-free.

    Once you've got the results of any testing, post them (including reference ranges) in a new post on the forum, to get feedback from people here.

  • humanbean - thank you so much. I've taken 1200mcg of b12 after i got home but I will not take any more now until the results are back and see what they say, I'll look into the rest of what you said too, they checked for coeliac and came back as negative but if going gluten free helps I'm all for it and will try it! Thank you very very much!

  • My testing for coeliac came back negative too, so I wasn't actually expecting to get anything positive out of going gluten-free, it was just an experiment I thought was worth trying. It hasn't helped with indigestion and gut pain, which is what I was hoping for. But my ferritin has gone up, my mood has improved enormously, and my terrible temper is a thing of the past. So I'm going to stay gf from now on. Hubby is reaping the benefits too, and he can now tell when I've accidentally eaten gluten because of the deterioration in my temper. ;)

  • I know what you mean.....and I'm sure my partner does too - he's had it tough if not tougher than me, he's never once lost his temper with me for being angry for no reason, we were in the process of buying a house end of last year and everything went wrong (obviously upping the stress ten fold) - it fell through sadly we lost money and and that made me so depressed and anxious.

    I regularly go to bed and cry my eyes out and just cant speak to him for a good half hour because I have no words and no reasons but the feelings are so overwhelming it's ridiculous. The palpitations, constantly being cold or too tired to go out anywhere and do anything normal partners do, I'm 27 and he's 34. I sometimes feel like I'm no good for him, that I'm holding him back and stopping him from having a life too. Mental torture! It gets me because we're thinking of buying, I'm no longer working so it'll be nigh on impossible, and then I think what for, if it's to settle down and have kids - what if I cant have kids, even worse, what if I can and I'm so knackered I can't look after a child, what if I don't hear the crying at night and something happened and it would be all my fault. I find I worry about things far out of my reach and control but I cant stop it either even though I know it's irrational.

    I've always worried about stuff but now it's actually stopping me living. The GPs are all too quick to push anti depressants or anti anxiety pills - I wouldn't worry to such an extent if I was able to work and live properly (or better than I am at least). It just feels like going round in huge circles of a toilet someone accidentally flushed me down.....there will never be an up!

    I'm not being rational, I'm not being realistic, this is not me. :-\

  • My Ferritin was tested nearly a month ago and is 26 which is far too low. I have quite a few of your symptoms apart from the cold as I rarely feel cold and my hands are nearly always warm which I know is a bit strange, however, I am peri menopausal. My B12 was tested and I would think you'll find is also low when your test results come back - my results were 433 (range 220 - 700)

    I feel like crap - like someone has sucked the life out of me a lot of the time and I want to get back to actually feeling happy and living life and feeling healthy as we all have a right to but it seems a huge battle getting there!

  • Hi Ras27

    Extreme fatigue, memory problems, anxiety, breathlessness, etc. are among many neurological symptoms of B12 deficiency/PA, often interlinked with other autoimmune and absorption issues, and should be treated without delay, especially as there is evidence that PA is a family issue (40% more likely to develop PA if you have a family member with it) :

    b12deficiency.info/signs-an...

    BCSH, UKNEQAS and NICE all have guidelines on treating neurological symptoms and the link above gives advice on writing or emailing your doctor before appointment with useful templates.

    You could also include this link of the latest BMJ research document, and take summary (in case GP doesn't read the full document):

    cmim.org/pdf2014/funcion.ph...

    The most important thing to remember is that there is a short window of opportunity before neural damage becomes irreversible so it may be that self injections might be the way to go if GP still won't treat (lots of advice from HU PA site).

    Good luck

  • Hi S, sorry to hear you're feeling "poorly". to say the least. Yes I agree it makes far more sense to eliminate "stuff" first, but I think its easier for the Dr's to dish out tablets.

    I was thinking the other day that medicine has come a long way but in some ways it hasn't...we're all individuals so therefore all different and every blood test/other test is for this average person!!

    I'm in Ireland so we have to pay for everything, but my advise is yes pay to have hematologist test at least it will put your mind at rest, plus you will have all the results. If you do go and see one though ask exactly what tests will be done, you might even have to ask if you can be checked for x,y,z, sort of thing.

    Hope things get sorted for you soon, and you know theres loads of people here that if you rant wont moan or judge, we're all in the same boat.

    ((hug)) - Pip

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