Hello, I have been feeling very bad for nearly 2 years now, since the birth of my son, which was what I initially put it down to. My symptoms are, brain fog, massive fatigue, restless legs, breathlessness, headaches, mood swings, cold flashes and irregular periods. I have been to the doctor over and over for 2 years, they've checked everything out like heart, lungs, womb etc. They did a vitb12 test last week, and my levels came back at 171 ng/ml. My doctor has said this is fine, and has now prescribed me the pill to control my periods, and an inhalor for my breathing, plus an xray just in case.
I'm just hoping for some advice on whether or not the low b12 is likely to have been causing these issues and if I should push for more testing on that front? I ended up sobbing down the phone to my doctor when he said he's just prescribing the pill, as when i asked what that would do about my other symptoms, he said what other symptoms?! Even tho i have been back and forth for 2 years describing my symptoms. And then when I told him, he said I i was throwing too much at him and he couldn't think.
Thank you for any advice.
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Cheekycow8
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He tested my iron and folate at the same time, and both of those came back well within normal ranges. I have started myself on the tablets today to see if they help any in the meantime. It can't hurt! If it doesn't help either, I will keep pushing for the intrinsic factor test. The test result for my b12 said 171pg/ml, but then also said vit b12 levels indeterminate? Is that usual? Sorry for all the questions, but my doctor doesn't explain much at all, no matter how much i ask.
My husbands was 180ish. Tablets did the trick for him
Noe in 300's but takes a daily very low dose of b12 10 mcg.
Amazing
1000mcg doesnt seem to do anything for me. I bought loads of stuff in the hope. Lol ialso gp asked me repeatedly to try tablets!!whilst still having I je tions to have them less frequently. I've gone the other way.
Was your husband suffering from symptoms with that level of b12? I am hoping the tablets will help too. Booking my xray today, once that is out of the way I will know one way or another. I figure if it comes back clear, I am going back to the doctor with all this evidence and the guidelines he is supposed to follow, and demand treatment for b12 deficiency. Even if it only needs tablets, I want it noted how it has made me feel.
Thyroid was tested a while back, but i didn't think to ask for the print off of that one. I can't remember when it was, but the receptionist may be able to find it for me.
There is a helpline number that PAS members can ring.
You mention symptoms such as brain fog and RLS which are usually considered neurological symptoms.
Do you have other neuro symptoms?
B12 deficiency requires prompt treatment or there is a risk of deterioration including neurological damage.
Unfortunately it seems from threads on this forum that GPs and specialist doctors don't always have a good understanding of the issues.
Two brief suggestions...
1) Always get copies of and access to your blood test results.
2) Do your homework on B12 deficiency as sadly some doctors don't appear to do theirs.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF link up page for up to date BNF treatment guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I wrote very detailed replies on another forum thread with a lot more B12 info.
Thank you so much for this, it is going to take a while for me to read through as my brain feels really muddy today. I do show other neuro symptoms, but i was diagnosed with menieres disease 10 years ago, and the doctor keeps brushing off my balance issue, clumsiness and increased vertigo, as my menieres worsening .
I am being sent for an xray on my lungs for the breathing, and once that comes back clear I am going to write a letter, following the advice from that link, and also see a different gp. Funnily enough, I did use gas and air, almost constantly for 12 hours. I also have ibs, but I'm not sure if that is one of the conditions that can lead to not being able to absorb b12? I also get the insect crawling sensation on my shoulder blades. Its horrid. Thank you again.
"get the insect crawling sensation on my shoulder blades"
The medical term for this is formication and it's a type of paraesthesia.
Paraethesiae are abnormal sensations such as formication, tingling, pins and needles, burning sensations and are often associated with damage to peripheral nerves.
Try writing to your doctor. Keep it plain and simple.
Give a list of your four main symptoms that match those of a B12 deficiency - fatigue, brain fog, breathlessness, mood swings - just four so that you don't confuse the poor wee lamb.
Include a copy of these recommendations from the British Committee for Standards in Haematology - onlinelibrary.wiley.com/doi...
Highlight points 1 and 4 in the Summary of key recommendations
Demand proper treatment to avoid further neurological impairment as per point 4 of the included paper.
Thank you, I didn't even realise I could demand to be treated for it. I will read the link and get it started, once he has done the xray for his peace of mind. I feel like it would be cheaper to do a trial test of the b12 jabs, and probably less harmful too!
See a neurologist! I had all of the symptoms you described. My regular doc missed the b12 deficiency - it was my Neuro who ordered b12 (came back low normal) and MMA test (came back high) and these two in combination resulted in my b12 deficiency in which I was prescribed b12 shots. They work!! It’s a long dose (6 months to a year) but I am amazingly better after the 7 loading doses!!!!
It definately needs addressing. The question is whether your diet is low in b12 - non meat eater / vegetarian or whether you dont absorb it well such as PA or low stomach acidity. The latter often occurs as we age. Of its due to diet you may well be able to adress it with b12 tablets. If its due to lack of absorption you are going to need injections. Generally speaking if you have a low level like yours and have neurological symptoms you do need injections to bring your level up quickly to avoid/ minimize nerve damage.
I was referred to Neurology by my GP which was a six month wait. I was worried about permenant damage so chose to self inject. Made a massive difference to me and I improved immensely though I have to inject daily to avoid the neurological symptoms returning.......I dont know why I have to inject so frequently but I do. We are all different so there is no set best treatment, just what works for you. The NHS will severely limit how many injections on their standard protocol. The neurologist when I finally saw him backed me so I have my injections daily on the nhs now.
Thanks fbirder. It was the GP......she was so amazed at the dramatic improvement she offered to let me have daily instead of alternate......Id offered to purchase the difference. She said no it helps you and can do no harm. An enlightened GP. 🤗🤗.
How long have you been injecting daily? And did the Neuro say it is safe to do daily for an extended period of time? I feel like injections are a life saver but I wonder how long I will have to do it. I am waiting on results from my endoscopy - they took several biopsies fo check for infection/bacteria and other things that supposedly can cause the absorption problem. I get them in a week (it was 2 days ago). I am behind thankful for this wonderful remedy!!!
The neurologist wants to research into the effects of b12 on tremors he told me as he has had other patients say the same thing. Wanted to use my case. I dont think his knowledge of b12 was vast. Any excess b12 you excrete from the body like vitamin C so no known case of toxicity. Cant help you more than that with whether its safe. I think its more about individual need. Bit like level of thyroid hormone - what is safe for one person would be deadly for another.
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