Pernicious anaemia or anxiety - Pernicious Anaemi...

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Pernicious anaemia or anxiety

Mel64 profile image
17 Replies

Hi all hope someone will be able to help me . My daughter is 15 years old over the last year she become very tired with Constance pins and needle in her feet .she has loads so pain in legs hands arm back and her eyes have become very sore she has collapsed in school and is dizzy more often then not. Thies has all got wose over the year she very short of breath to .we seen a neurologist months ago who said it was genrelised anixity .she had bloods done which came back b12 slightly low at 146 .I then got her the b12 injection which my go did give even though they said it wasn't low enough to give them but did agree with me it couldn't hurt . Although she did make a good improvement she had less pain managed to get up and attend school every day and she looked so much better .They have stop injection now and done a blood test and said if it's above 150 she won't need anymore as the neurologist has said its all down to anixity I don't agree as she not attending school again as she just sleeps the clock around and she in loads of pain in feet legs and arms hands back hip neck and short of breathshe also has tremours in hands and legs is this the same for anyone else on here if so any advice for me on what to do next .

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Mel64 profile image
Mel64
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17 Replies
Secondchance profile image
Secondchance

BCSH guidelines recommend treatment below 200 and if there is clinical improvement to continue for life. Have parental cell antibodies and intrinsic factor antibodies been checked? This would confirm need to continue for life but since there has been clinical improvement this is not a requirement to continue treatment. Has she had a formal assessment by a specialist in mental health for generalised anxiety disorder?

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Mel64 profile image
Mel64 in reply to Secondchance

Thanks for replying yes she has mental health said they belive its b12 as it cause anxiety too she also tinnitus and has asperger symdrome she just isn't well she been in bed all day and the pain she in unreal off to go again tomoz not sure what I'm going to say x

Secondchance profile image
Secondchance in reply to Mel64

You must be worried sick. Hope you manage to get her sorted. Some people self-treat on here, although that is a last resort.

Galixie profile image
Galixie

That really sounds like B12 deficiency to me (but I am not an expert and this is just my opinion). I can't remember where I read it, but I remember reading something once that said it is normal for children and teens to have a B12 level closer to the higher end of the normal range and that B12 levels typically deplete as we age. So a level of 146 when the normal range is something like 200 to 900 should be considered alarmingly low in a teen. Considering that she improved on injections and is deteriorating without them, I'd fight to get them continued for her. You might also ask the doctor to run more tests to determine why her level was low in the first place. They really should have offered to try to figure that out originally, but who asks to do extra work, right?

Mel64 profile image
Mel64

Thanks for reply I'm off to docs tomoz not sure what I'm going to say and no neurologist just keeps saying b12 is only slightly low and it's not the cause . But she really did improve when she had injections .im so worried she been to AE a few time they just keep saying same thing we'll leave it to neurologist x

lucylocks profile image
lucylocks

Her level is very low (do you have the range) and her symptoms are all B12 deficiency symptoms. I would argue with her G.P. and Neurologist that as she improved with the injection then it proves her symptoms are because of the B12 deficiency and she needs to continue with the injections, also point out the mental health team said they thought it was B12 deficiency.

Do not let them fob you off, if they will not help ask for a second opinion with another specialist.

Good luck.

browny

explainit2me profile image
explainit2me

Hi im new to site im 52 yrs old and my new doc told me I have PA . Those systems you are describing that your daughter have I have and loosing hair..I was told I had depression and anxiety which I did have at one time. I am so tired brain fogged and my feet and hands tingle like they fall asleep. Im dizzy and short of breath it feels like I forgot how to breath. .in any event I am taking the b12 disolvable pills under my tongue 2 of them 5000mcg .do not take the b12 pill you swallow our stomachs are not breaking them dowm for intestine to absorb them. I also take biotin but thats for my hair loss too. I cant tell you how embarrassed I was when I get the tremors in front of people..its been 2 years that I have dealt with this and finally many blood test this comes up but tricky part is my blood work looks normal..I am overweight and I know that causes issues but its been 2 weeks since I had a b12 shot and im taking my b12 everyday along with my multi vitamin omega 3 fish oil , vitamin D C and probiotics.. have your daughter take the disolvable b12 so her gums can absorb them I feel some energy like 50% better.from research and talking to others it takes some time to stabilize. .

Mel64 profile image
Mel64

Hi all thanks for your help .she carnt feel her left foot this morning feeling sick and pins and needles are up her leg ,so here gos docs today and if doc won't help Then practice manager .got the new rule for treating it ,if that dosent work I'll try birmingham children's again women on a mission today .i will let you all know how I get on .

Your daughter still is b12 deficiency.. mine was 160.. I'm on injections for life.. I'm so much better for the injections.. you can buy sublingual spray.. she sprays it under her tongue waits 30 seconds and that's it everyday.. 150 is lower than mind.. she is a child don't let them doctors away with this..

Jcwg profile image
Jcwg

Sounds like b12, mine was about 180 and the neurologist put me on b12 for life, it helped as my instringic factor came back positive, I don't know if it's the same with a child but we adults need our folic acid and iron checked, especially when on b12 so if she does get b12 please keep an eye on them. Good luck don't let them fob you off, as a last resort you can buy b12 from goldpharma or mycare, if it was my child I would. it's disgraceful the way this whole b12 is treated, anyone would think we are asking for illegal drugs.

hez22 profile image
hez22

Omg. She is very b12 deficient and her drs are not flowing NICE and BCSH guidelines. She needs loading injections on alternate days until no further improvement then regular injections. I bet they have not checked her folate and ferritin. In the UK 200 is deficient but treatment can begin above 200 if neuro symptoms are present. Print off nice and bcsh guidelines and tell drs you will hold them personally responsible if she suffers irreversible damage due to lack of b12 treatment.

sabrina2014 profile image
sabrina2014

Hi sorry to hear she is not feeling well. Ask for vitamin d levels to be checked too. I had lots of aches like bony pain shoulder blades and hip also very painful legs. I am deficient on both b12 and vitamin d and folate so not sure what problems are affected by what but have felt better since starting on tablets and injections

Hope u find a solution soon

Secondchance profile image
Secondchance

Good luck today

Mel64 profile image
Mel64

Hi all I so failed doc said abi, b12 was just under 200 so they won't treat her .blood was taken a week ago she also said it was Anxiety but carnt give her anything for that because she's 15 just have no idear what to do next .oh and doc also said she only felt better because I'd convinced he injection would work what has nhs come to thankyou all for replying x

sabrina2014 profile image
sabrina2014 in reply to Mel64

Ask for vitamin tests vitamin d x

CarolineAnne profile image
CarolineAnne

Just wanted to wish you luck. Please keep pushing. Try different doctors. Go private if you can. The NHS can sometimes be a nightmare over vitamin b12. It's very disappointing. My husband had a result of 130 and his GP was not going to do anything. I took him to a different GP in the practise ( she was into alternative medicine) and she agreed that he could have the injections. He now gets them monthly although the rest of the practise do not like that.

My result was 211 and they would not treat me so I have to buy sublinguals.

Don't give up. Best wishes

Carolineanne x

Mel64 profile image
Mel64

Hi thankyou all .if anyone knows of private doc in birmingham plz let me know x

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