Could Iron deficiency/B12 be causing all my neurological problems?

[Occum86]

Please forgive me if I'm in the wrong place and if I talk too much!  This is the first post I've ever written about my situation.  If I’m in the wrong place advise me on where I should be?

My question is could B12 /Iron deficiency be causing all my neurological problems?

I have been to hell and back over the last 12 months, test after test after test but still no answer! My Aunt had MS so they eliminated that one first.

For the last 6 years I have been experiencing symptoms that I have just ignored and put down to being tired all the time from work!  As time has gone on symptoms have got worse. Here is just a few! Fatigue, stabbing pains/pressure in head, numb/cold feet and hands, numb face mostly on left but can be on both sides, swollen lymph nodes under jaw and neck, flashing lights in both eyes, twitching muscles, heavy arms, tinnitus, carpel tunnel, walking upstairs feels like I’ve just run a marathon, RLS, dizziness and heart palpitations, and the list goes on!  Over the last 12 months I have had the following tests:

2 brain scans – with and without contrast - Clear
2 Spine scans- cervical to sacrum - Clear
Nerve conduction test on all limbs - Normal
Hearing test - Normal
Eye tests - Normal
Ultra sound on reproductive parts - Normal
Ultra sound on abdomen – Normal
Ultra sound on lymph nodes in neck and body – Normal just swollen!
About 10 separate blood tests - Positive ANA 1:1600 (all other autoimmune follow up tests were normal)

As my doctors and specialists have found nothing wrong with me apart from a positive ANA blood test they say it’s ‘Psychosomatic.’ I thought maybe they could be right as nothing else has shown up.  So from there I saw a psychiatrist and went to counselling for 6 sessions.  They said it was anxiety and put me on anti-depressant’s! I didn’t feel depressed I felt ill and was just scarred and frustrated that nothing was showing up on any of the tests.  So after all this I went to see a nutritionist who started me on a good diet and several vitamins.  After 3 months of that I still feel tired all the time and the numbness and pins and needles are still here!  About two weeks ago I went back to my Dr’s telling her that I was unable to feel the skin on both legs. She used that annoying word again ‘Psychosomatic!  I wanted to scream at her but instead I said ok, went directly to the secretary’s and asked for all of my files from birth.  Cost me £50! I read them at home and within a few minutes of looking I found that at the age of 17 (I’m 35 now) I had a migraine and experienced numbness in my hand, face and tongue!  I don’t really remember this but around the same time I was diagnosed with anaemia due to my ferritin level being 4.8 (shouldn’t really be below 30!).  At the same time my Haemoglobin was normal.  They put it down to my heavy periods and gave me 3 months of iron tablets.  So fastforward 18 years and I went back and asked my Dr last week if I should have the ferritin test done as there may be a connection.  She looked unimpressed that I had even got my notes but reluctantly sent me for a FBC and Ferritin test. They took blood from me but the haematologist refused to carry out the ferritin test as he said my haemoglobin was normal.  I went private (£70!) for Ferritin test and it came back this morning as 22.  I’m now being tested for my b12 as last year it was 260 (shouldn’t be below 400 I have read) If you’re still reading this thank you for staying with me!  
My question is, could the supplements that I have been taking from my nutritionist have affected my ferritin result? I really expected it to be lower than 22.  I have been on Magnesium (600mg a day) Vitamin B50 complex, GTF Chromium, Omega 3 and acidophilus probiotics.  Any idea’s on what I should do next? Self medicate and see if all the numbness and weird sensations go?  See what my Dr thinks? I’m completely lost to what to do next and as I write this my right hand and face is completely numb! :-(

Any ideas would be much appreciated :-)

[Occum86]

Hi Londres70
Just got my B12 result back it is 884! This is high isn't it?  When I was 17 and given Iron tablets it was also high at 998 (Ferittin 4.8).  My ferritin level is now 22. Adding to that I do have a low white and Neutrophil count, this is all so confusing for me now!  I'm thinking it's best if I ask my (rubbish) Doctor the refer me for a 2nd opinion to see hematologist!  Is there anything I should say or go armed with?  I do think knowledge is power!
Regards

[Occum86]

Oh that sounds interesting, I will ask her about that on Wednesday.  
Thanks for your help

[meniere135]

I noticed in your toe pictures that your second toe is longer than your first.  This is called Morton's toe.  I don't know if this is true of everyone who has Morton's toe, but they say those who have it have a P5P deficiency.  P5P is a breakdown of vitamin B6.  Maybe talk to your nutritionist about adding P5P (available in vitamin stores, etc.) along with your B-complex vitamin.  I know it's supposed to affect magnesium and B12 in some way.  This is not my expertise, just something I tripped across in my reading.  

Hang in there.

[Londres70]

I am still thinking about the info you have given me; trying to help you put some pieces together.  

To be honest, you should be getting B12 and Iron injections to bump your levels back up and then switched to pills.  You can try the pills first though.  

It is apparent that you are very anemic and your b12 level is abnormally low, but the cause must be found.  In my opinion the neuro symptoms are secondary to these low levels and the low levels are secondary to something else.  What that "something" else is, I am not sure.  

Yes, low WBC, low PLTS and an elevated CRP can have something to do with the anemia/low iron.  

The Hematologist said everything was ok?  Hmmm?  The other possibility that crossed my mind was some type of Lymphoma.  Not trying to scare you.  Just that your counts and symptoms match this.  I am definitely not saying this is it.  

When you get the results of the new labs please post them.  

Are you have abnormal bleeding alot?  Your plts were dropping according to the last lab reading.  

No GI scopes?  i.e. Upper Endoscopy?  An image is NOT going to always tell what is going on.  

Yeah, you may be depressed or anxious at this point scondary to all this crap, but that is not the PRIMARY diagnosis.  

[Occum86]

Thanks for looking at my bloodwork Londres70.

Here's a bit more info on my story:
My Doctor refered me to the Hematologist who took my blood and felt my lymph nodes, he said they were to small to biopsy.(I have since had an ultra sound on them and they are not cancerous but they still don't know why they keep going up and down) Hematologist said my ANA was positive so sent me to the Rhumertologist, he checked for Lupus and autoimmune probs and concluded nothing was wrong, he sent me to neurologist who did all his tests, brain, spine, nerve conductions etc all normal.  I asked for a second opinion at this point as I could feel all these senstations but nothing showing up. The 2nd Nerurologist did his tests and concluded all was normal!  I then returned to my Dr who sent me to psychiatrist and councilling and put me on anti-D's :-(

Gastric wise I have pain the right of my stomoch (for 1 year) Dr said it was IBS and stress that gave me stomoch pain.

I can't find anything on my T3 and T4 or anything else for my Thyroid, I will ask for that to be done when I see the Doctor next week.  I started taking Ferrous sulphate 200mg 2 day's ago. I'm taking 2 a day at the moment but I will probably move up to 3 once my body gets use to it, what you think?  I will ask my Dr to prescribe B12 and Ferrous tables as you are right, its the least she could do! You don't think I need B12 shots do you? Is 274 that low?

Would the low readings of WBC, PLTS and elevated CRP have anything to to with lack of Iron?  Do people with iron deficiency ever get elevated ANA's? I think I need to get some up to date blood tests done.  My dentist did some recently as my gums kept bleeding!  I will post them as soon as I get them as I have an appointment with her in 2 weeks.  

Other symptoms to the ones I've already mentioned are:
I get raised blue veins that stick out and sting like the blood is boiling inside, it sometimes looks like it gets clogged veins at different points in my arms, I get two big veins on my right temple right where I get my head pressure.  My big toenail's go blue and my right toenail keeps stopping growing (please see my photos). My throat is always sore and red. I get water blister ulcers on my lip sometimes. Sore red eye's for no reason. Lips and tongue tingle. Feels like someone blowing cold air up and down my legs. The one that worries me is my internal tremors, its like my whole body shakes but not visable to anyone else :-(  Can all these symptoms be attached to Iron and B12?

[Occum86]

Thanks Bbxx,  for the first time in a whole year, after hearing your story I don't feel so alone anymore!  My partner has been a solid rock for me throughout all of this but he can only take so much of me talking about my symptoms before it gets him down too :-(  

I like what you said about knowing your own body better than anyone.  I have always felt the same up until Doctors said it was psycosomatic, then I had doubts about my mental state having concluded that they hadn't found anything wrong!
Thanks so much for your feedback :-)