Talk to Your Family about B12 Deficiency

[MoKayD]

I was diagnosed with B12 deficiency two years ago. Since then my daughter was also diagnosed and I recently found out that my cousin's daughter has also been diagnosed as B12 deficient. My sister has been suffering from numerous mysterious ailments for years. After my diagnosis I talked to her about having her blood tested for B12. She did and her doctor told her that she was fine. We were talking last month and she was describing her tiredness and dizziness so I again brought up B12 and asked her what her B12 number was. She looked it up online and told me it was 205. BTW, she takes a multivitamin that contains B12. I told her that was low and she needed to start shots. She saw a new doctor at her practice and he confirmed her B12 was low and agreed to start loading doses. Ugh! I wish I had asked her what her number was earlier. Why did her first doctor tell her that 205 was OK? It's so frustrating!

[Nackapan]

I expect because it was in range 180-900 ng/ll od 200-900 for serum b12 tests. So the computer didng red flag it.

They never seem to ask if yoh are taking a vitamin or youf symptoms. My husband 180 and they said normal but would test in 6 months! I get a print out now . Havd encouraged my adult daughters to do the same.

Some are find on a lower number. My husband s little weary . That was all.

He absorbed a low 10mcg b1e tablet daily. andhe went up in the 300's so continues to take them daily.

[MoKayD in reply to Nackapan]

Oh, I thought anything below 200 was considered low. My sister has been taking PPIs for 20 years and she is 65 years old so it would be surprising if her B12 wasn't low.

[Nackapan in reply to MoKayD]

Its depends on the lab range on your blood form. Some the bottom number is 180. Some are fine on that.my sister was functioning at a level of 124. Feeks better now it 404!! Very lucky she responded to high oral b12

Mine was ignored af 106. The range on the form wad 200-900I had to get the blood form and book an appointment. I wasnt rung up or booked first a b12 injection . My first injection wad delayed by 5 weeks from collapse. Very poor. Gps have s pile of blood results to go through and that's usually the hold up.

Mine got missed but the computer would've flagged ig up?? I made an appointment eventually. I booked in first b12 injection . Hindsight hey. One of my daughters was misdiagnosed for years . So yes that's why I got all my family to get tested. Mhy mum has injections too. My sister can absorb and on high b12 tablets my husband on a low dose but needs one a day maintenance.

Your sister probably would benefit from a test . Sane age range ad mine.

[MoKayD in reply to Nackapan]

I think my doctor told me that below 200 was bad. I was at 87 when my blood test was taken. I felt like I was dying. My daughter's test stated that her level was too low to be analyzed. Below 40. Her doctor told her she had never seen a patient with levels that low. I don't know how she was functioning. She is self injecting every two weeks now and feels so much better. I had to harass her for a year about getting her blood tested. Sometimes I feel like I'm the B12 police.

[wedgewood in reply to MoKayD]

Great . 👍 B12 police are necessary in these times when 12 deficiency /Pernicious Anaemia is not treated correctly .

[Emmers5 in reply to MoKayD]

There should totally be B12 police!

[MoKayD in reply to Emmers5]

Instead of guns the B12 police would carry holsters that contained syringes of B12.

[ACritical]

Good advice, I spoke about my deficiency with both my children and rest of family, turns out, my daughter, niece’s daughter and my own granddaughter just a few month ago, have been diagnosed .

[MoKayD in reply to ACritical]

Wow, it's wonderful you were able to help them. It does seem to be more prevalent in females.

[Kate1914]

Hi All,

Like most on here it has been a struggle to get the GPs to actually listen to what I say. At one stage I even took my hair brush to show they how much hair I was loosing.

I'm now on every 12 wks but inject self(thanks to a German Supplier) if I feel really bad.

Seems my Mother was diagnosed years ago but didn't do anything about it !!! After me pointing out the her symptoms could be mis-diagnosed she finally not had the 12 wks injections. Just as a general note - we both also take thyroxin.

It also appears that my Grandfather on my Fathers side died of PA. So, we are moving forwards...…. too slowly for most of us.

The comment regarding being a B12 Police - so true...…..

Take care all and lets hope non of us catch COVID-19.

[Cherylclaire Forum Support in reply to Kate1914]

I threatened to demonstrate hair-brushing in front of GP when she said "You have to expect that women of a certain age...." - but I never actually had to do it .

She found my folate and ferritin to be low, put it down to one or the other and 3 months' treatment helped. I'm not sure why there is a reluctance to associate hair-loss with B12 deficiency, but then I'm not sure when women reach "a certain age" * either.

Prior to this, my B12 had been tested at 196 ng/L and the range locally started at 197 ng/L - so didn't have to deteriorate any further. Despite injections, I did anyway and then MMA was found to be still raised - so I was diagnosed with functional B12 deficiency.

It took 3 years and a lot of B12 to get MMA within range. Still have hair, but now losing teeth .

B12 police a great idea; thanks MoKayD !

* I was 57 at the time.

[Showgem]

Here in Somerset the bottom of the range is 120 which I’m starting to realise is very low compared with other areas. Why do ranges vary so much?

I’ve been trying to persuade my daughter to get my granddaughter tested as she shows symptoms but her surgery said it wouldn’t be low b12 as she is too young and she did have a slight iron deficiency so they have said to give her iron. I have had iron deficiency all my adult life which is why they took so long to test my b12 which came back at 58.

It’s difficult as my granddaughter is only 16, has Aspergers and suffers badly with anxiety, she is terrified of blood, needles and can’t swallow tablets. My daughter doesn’t want to put her through testing unnecessarily.