...so I'm not going crazy

[patmackfin]

I was diagnosed with a vitamin B12 deficiency about 4 weeks ago after seeing my doctor about a body rash(which turned out to be Mycoplasma chest infection)

The doctor took blood work just to be safe.My b12 came back at 174.The doctor said I most probably lacked a substance in my stomach called Intrinsic factor(IF) and couldn't absorb the B12 from my diet.He said come back next week and start weekly shots of B12 and ,OH yeah you will probably need them for the rest of your life,and while you're at it tell your family because it's inherited and they may have it too.I was a little shell shocked to say he least.

when I saw him again (after some research at home) I asked him if I had pernicious Anemia,his answer "oh yeah,you do". My question is do I need any more tests to be sure?

When I saw the nurse for my b12 shot a week later she said my levels for the past two years had been between 274 and 284(in 2012 and 2013)I have had my blood tested 3 times in 3 years,I've been back and forth to the doctor,picking up everything that's going,I had the flu twice last year.

I've said to the doctor on more than one occasion that I feel like a (can't think of the word....yes I have that too...brain fog,along with occasional dizziness)..."hypochondriac"

I had a microdiscectomy surgery two and a half years ago,to treat a bulging disc.Since the operation I cant sleep on my back,or the pain will wake me up to turn over.(question number two,could the PA be effecting my spine?)

I also wake up with three fingers on each hand asleep sometimes ,I had put this down to my back,now I wonder..I also get this eyeball pain now and again that feels like a curtain closing and sometimes I have this kaleidoscope effect in my vision..I am Cold,constipated and cannot sleep (this has been going on for years now),and quite honestly it's the sleep,or lack of that bothers me the most.because unlike everything else that's going on it's EVERY night.

I ended up convinced that I must have some sort of thyroid problem,when that came back OK,my doctor and I concluded that I must be perimenopause(I am almost 46). I was put on the mini pill(to regulate ,help in some way) also I was given antihistamines for sleep ,which do nothing.I stopped using them when one night I finally got to sleep and woke up after 3 hours feeling like I just had a double espresso,shaking ..buzzed,jumpy.

I am sorry to rant and rave,but to me this diagnosis is a relief. I no longer feel like a neurotic female.I feel like even if my doctor lacks some communication skills I have gotten something concrete that I can work with.

I am an otherwise very happy,healthy get up and go kind of person,I just completed a degree in personal nutrition(online,..as too tired to go out LOL) and through diet was able to lower my cholesterol significantly. Before all this I had very little patience with women (people) whingers(myself) always sick tired etc....now I know that sometimes despite our best efforts and trying our best that there isn't anything you can do just accept "it is what it Is" as they say.

I'm glad I found the Pernicious Anemia society,someone who understands me finally,I'm off for a good cry now ( :

Pat

[Hidden]

Hi Pat,

I so understand you saying glad to finally have a diagnosis after years of not feeling well and being told meno pause and or its all just nothing. I remember being glad something was found. And with the right treatment you should feel so much better, just accept it can take a bit of time, for some more months than weeks, but then you will feel a lot better! In the mean time make sure you look after your self now, let your body repair, its taken years to become B12 def it will take a bit of time to undo what damage may be done. Eat well, stay off alcohol and sleep lots all helps. Taking a multi vitamin can help make sure all stays a bit in balance and you do not get other deficiencies.

Hope you will feel a lot better soon!

Kind regards,

Marre.

[patmackfin in reply to Hidden]

hello again Marre'

I really only have a few glasses of wine at the weekend,which I really look forward to,Do you recommend not having any alcohol at all?

pat

[Hidden in reply to patmackfin]

They (my haematologist included) say not to drink alcohol, but a glass of wine will not kill you, I drink a glass of red wine with my evening meal, it increases my appetite and I feel helps digestion, Marre.

[Polaris]

I'm so glad for you that you have an enlightened GP and, hopefully, all your symptoms will start to improve now you are receiving treatment. I should keep an eye on the neurological symptoms though and make sure you receive enough B12, as these can be permanent if not treated adequately, supplementing yourself if necessary.

Re. cold, constipation, etc. autoimmune thyroid problems, B12 and D deficiencies are very similar and usually interlinked (my sister has severe B12 def. and we both have autoimmune thyroid disease) and they impact on all the systems of the body, especially the thyroid - it is more than possible that adequate B12 and D3 could also see the thyroid becoming more normal and your resistance to infections improving. I hope this link helps and that you begin to feel better soon.

thyroid.about.com/b/2010/09...

[Secondchance]

You seem to have a good GP who is on the ball- you are lucky. Hope you feel better soon. I know what you mean- I wondered if I was losing the plot, it is great to get a reason for why you feel that way. Check how often you are to get B12- it is usually loading doses (min 6) followed by maintenance shots (2-3 monthly). If your GP is willing to continue weekly- go for it though!

[Nrxx1234]

I also had vision problems before I started my injections. I couldn't bear anything moving quickly as my eyes couldn't follow it. This was when I'd got really low as I was denied injections for quite a while and given tablets which obv did nothing! I saw an eye specialist who said my vision was fine it was the brain slowing down stopping the muscles in my eyes moving! Very scary.

After all my loading doses my Vision was a lot better and now after a couple of years it's fine.

It takes a long time to recover fully. I also couldn't sleep and had dead arms in the night.

You are very lucky to have a great doctor! Keep hold of him!!

[Secondchance in reply to Nrxx1234]

That describes exactly the problem I had with my eyes- I went to optician a few times because I thought my prescription must be wrong but they found no significant difference! Sorted with several months of B12 now. I also found my vision was a bit brighter for want of a better term not long after starting B12.

[Hidden in reply to Secondchance]

"I also found my vision was a bit brighter for want of a better term not long after starting B12.", same here and it stays like that for me. I explain it as the eye muscles work better with addition of B12, not enough B12 results in muscle wasting. Before diagnosed I went to GP and optician as I had many little car accidents where all I could say I did not see..or what I saw never registered or stayed in my brain. Time would not register, I'd read the clocfk, but it just meant nothing. And horrid feeling the car was moving back wards when it was not etc. A B12 injections wakes me up and its as if a cloud lifts from my brain, and eye site, everything seems clearer.

[Starfish123]

Re your fingers going to sleep, it's carpal tunnel, I have this. Mine is related to low thyroid apparently, ask your Dr for splints for sleeping, they make a real difference.

[Lisasones]

wow, no matter how much I read the posts on this site I always learn something new

I too have numb fingers when I sleep and my vision is all over the place - actually has resulted in different prescriptions over the years, sometimes it improves and I don't need glasses to drive - other times I can't see across the room! I am now awaiting results of test for thyroid deficiency as regular B12 injections (twice a week) has definitely improved certain areas, like digestion and energy levels, but the coldness, sore neck and back and shoulders (well most of the body sometimes) LOL! and crippling desire to fall asleep mid afternoon are still there... ho, hum - wait for the "everything's within normal range" there's nothing we can do from the GP then

[Ctb567]

I know how you feel, I spent my whole teenage years lying in bed being told by doctors that it was my age, I'm just a tired person or its psychological and sent me to a psychologist for anxiety... It wasn't until I was 20 did they find the b12 deficiency and I looked back at all the b12 tests I had in my life and they were all borderline low. Even though now I feel better I just don't know how to be normal any more, I've spent the last 7 years being ill and exhausted and now I don't know what to do with myself. I wish we had better doctors available so this kind of stuff can be prevented.

[patmackfin]

thanks for all your replies and comments.

It's so nice to have people who can relate.I think my family don't really understand and aren't really that interested.

I didn't mention earlier that the doctor that diagnosed me wasn't my regular doctor.I have had 3 loading shots from the nurse so far.The nurse will be away next week so I will be seeing my regular doctor for my 4th shot.

I have a few questions for her:

1. will I be monitored closely for stomach cancer?

2. do I need to see a hematologist?

3. Will they be doing further testing to establish whether my stomach lacks intrinsic factor,or through the process of elimination (no bypass surgery,no alcoholism,not a strict vegetarian etc just assume that's the case) .. seeing that it is treated the same way regardless,at least at the beginning.

....and a few more(I can't think of right now Duh!)

wondering what everyone elses experiences have been,and if there is something in particular I should ask.

Thanks

Patricia

....I will let you know how it goes on Tuesday ( :

[Secondchance in reply to patmackfin]

Good questions to ask. I asked for a gastroenterology referral but was refused. I have no reason for B12 deficiency other than family history of pernicious anaemia, which was considered irrelevant!!!! My antibodies were negative but as we know not very sensitive test.

[patmackfin]

well I saw the doctor this morning ...

I chickened out of asking about being monitored for stomach cancer and whether I will need to see a hematologist.

I don't know what it is about doctors but they make me feel as if I am taking up their time and like a neurotic idiot,and at the same time like I should either know everything already or I should be glad of the tiny droplets of information that they begrudgingly let out.

I asked if I should be careful generally with my stomach (eating spicy food,coffee wine etc) as this was "most probably" a stomach issue,she answered that no,unless I had read something new on the internet that suggests so.(in my paranoia I am wondering if the other doctor wrote in my file that I said I was googling B12 deficiency and pernicious anemia).

Maybe doctors are miffed that people are coming with real questions now and they don't have the time or something(some doctors do have a God complex)

...so after some back and forth,and me almost jumping down her throat for even suggesting that it could be diet related(I told her i wasn't some uber vegan after all)she did take blood to test for intrinsic factor antibodies and parietal cell antibodies.The results should be back next week.She said the nurse would let me know when I go in for my next shot.

So who monitors me? when the loading shots are finished in two weeks,the nurse?

I don't mean to use this board to vent off,but I'm sure I'm not the only one who feels alone and hanging ..

this forum is my new best friend

Pat ( :

...on an up note I just got back from a 45 minute walk ,the first time in months,maybe the b12 is kicking in.

[Hidden in reply to patmackfin]

Hi Pat,

Yes usually it is the nurse, re:"So who monitors me? when the loading shots are finished in two weeks, the nurse? ". Good to read you are beginning to feel the benefit of your treatment! It can just get better and better, but perhaps help your self by making sure you are not getting other deficiencies. Get copies of all your blood tests, keep getting them, keep them to see what happens with treatment how your blood is when you feel well and not etc, all can be very helpful in the future. It is for life, things can change, having copies will help you eventually see what makes a big difference to you and why.

Well hopefully you will just improve even more,

Kind regards,

Marre.

[patmackfin in reply to Hidden]

Thanks Marre,I will definitely do that, you are right, It is for life and it's my job to take care of myself at the end of the day.

Invaluable information

Thanks again

Pat