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.