I’ve been struggling for a few years with memory loss. I can’t remember what I’ve watched on tv, what I’ve read, telephone numbers at work, leaving indicators on in my car, turning up to gym class at the wrong times and lots more.
Last year I had low Ferratin (9)
I’m on 100mg levothyroxin and recently started HRT patches.
the HRT has helped most of my symptoms but my memory is still bad. I’ve had an MRI brain scan which is clear.
I feel these symptoms are cause by some kind of low levels possibly B12.
I have a blood test on Thursday and I want to make sure the GP is testing for the correct vitamins. What should I ask for?
Has anyone experienced what I can only describe as an electric kind of shock feeling in their head?
Written by
Welly73
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I still have to make lists of everything, then forget I've made a list and make another. Then if it is not directly in front of me, I forget about it.... This is a fairly recognisable state of affairs to people here. I have got much better than I was and so can now laugh about some of the things I have done - like forgotten how to poach an egg and been totally surprised when I ended up with boiled egg in it's shell. More seriously, I was devastated when I got lost -in an area I have lived in my entire life !
I also have had a brain scan which found nothing out of the ordinary. I was so certain something would show up. Things improved once my B12 deficiency was addressed properly. The list that Nackapan has given you contains all the usual problems: I had low-range ferritin and folate so was given a three-month course of tablets for both, but it actually took about two years to get these both to good levels and stabilise there. Vitamin D I now get on prescription as I was found to have osteoporosis of the spine, and magnesium I don't think was tested but I have magnesium salts in the bath every so often just in case. Certainly feeling a lot better.
If you have autoimmune conditions, you can find that you also have others. So commonly for instance pernicious anaemia (as a cause for B12 deficiency), psoriasis and vitiligo. There are over 100 auto-immune conditions. Hashimoto's and Grave's disease (as thyroid conditions) are included.
Unfortunately, a diagnosis for Pernicious Anaemia is not easy to get - the Intrinsic Factor antibody test (IFab), which is generally used, will only identify a positive result for 40-60% of those with PA. Worth bearing in mind before asking for this - as many GPs will rely on a singe negative result as conclusive to ruling this out- which turns this into a 50-50 gamble.
I noticed yesterday that an NHS physio has recently been talking about long covid:
"I can't drive far. I forget to close doors. I burn food and when I'm reading, my brain turns some words into others. I lose concentration."
What she described here sounded just like B12 deficiency to me. It is no surprise that Martyn Hooper (the founder of the Pernicious Anaemia Society) has told the medical professionals involved in looking for long covid causes to consider this in their research. This could be beneficial to both long covid and B12 deficient patients eventually. Let's hope so.
At the time, couldn't seem to think my way out of the situation. But a lot better than that now.Want to hear some good news ? I have been given my latest Dexascan results - and I no longer have osteoporosis of the spine - it has now been demoted to osteopenia !
Yippeee !
So improvements might be small and might take a while, but are ongoing.
Thank you sleepybunny . I’ve had a read through the links you’ve posted. I’ve had bloods taken today ( I had to laugh because the lady taking my blood asked me if I was a nurse) she said I was talking like I knew what I was on about. All thanks to this group and everyone’s help. I’ll post my results once I get them. Thanks again
After I had a stroke in 2014, unfortunately, the doctors did fail to take on board that my suffering was due to the lack of vitamin b12 ( affects can cause issues in memory loss and in non-sleeping patterns for a long while). Fortunately, it was through a Locum doctor who had observed and analysed that I had very low vitamin b 12 levels, and therefore, the diagnosis showed that I was entitled to have vitamin b12 by injections - which, saved my life. The sad effects of how low vitamin b12 does impact on low health matters, and ignorance, in my book, the appropriate diagnosis of the vitamin b 12 treatment can have a far reaching positive affect on improving psychological and physical betterment of the individual involved. Obviously, the right kind of vitamins are vital to improving the health of the individual- but when one is ill, ignorance is a worry also!
I feel that I need to research myself so that I am armed to speak to my gp and request and challenge the right treatment for me. Do you know how low your B12 needs to be diagnosed with a deficiency? Or offered injections?
After the stroke, for a year, the Locum Doctor had my blood test taken, and it was found that I had a very low level deficiency in B12, - and was probably the cause that affected my sleep patterns plus. After the stroke, I was very unwell, and through the wisdom of the blood test, I was offered vitamin B12 injections which were essential to enable me to improve my health levels. Be careful when certain Doctors tend to offer pills use instead of injections.
Reading
"Patients with B12 levels between 200 and 300 pg/mL are considered borderline, and further enzymatic testing may be helpful in diagnosis. Patients with B12 levels below 200 pg/mL are considered deficient.7 Jun 2021"
Analysis
"B12 deficiency can cause a variety of symptoms, including fatigue, headaches, depression, pale or yellow skin, mental impairment, and pain and inflammation in the mouth and tongue. Many of the symptoms caused by low B12 levels are not specific to B12 deficiency, which can cause the condition to go undetected."
I too thought I had dementia until I began treatment for B12 deficiency. My other symptoms were scary too, difficulty with balance and walking, pins and needles especially in my feet and legs. A feeling of heaviness in my legs. Zoning out during conversations. Tinnitus affecting my hearing too. A very foggy brain. Good luck with your GP, I do hope you will get the help you need?
It’s very scary isn’t it! I thought it may be peri menopause symptoms but my memory hasn’t improved since starting HRT . I’ve had my bloods taken today so hopefully will have some answers soon.
Hi again, my levels were just over a 100. I understand that some countries treat anything below 500. You need to understand that just because it’s circulating in your bloodstream, it doesn’t necessarily mean it’s reaching your cells. I think it’s only 20% that actually gets to your cells. Some people also have problems getting that much. My GP agreed to trial me on more frequent injections, and I now have one every six weeks. That has really helped me a lot.
Good luck with everything, I hope things will improve for you soon.
My symptoms were very similar to yours pre-diagnosis! Memory loss, slurred/jumbled speech, poor balance and tinnitus. Unfortunately, the tinnitus and memory loss are the first to reappear when my next B12 injection is due.It's a shame your symptoms were so scary but in a way I'm also relieved to hear that others have experienced what I went through. Some medical appointments i had regarding my pernicious anaemia ended with me feeling like I was imagining it or somehow blowing my symptoms out of proportion.
One symptom leading to my pa diagnosis was memory loss. I also had an MRI scan and early-onset dementia test, both of which were clear. B12 injections definitely help to relieve the memory fog.
So glad the injections helped you and that it can be treated. Do you know what levels your B12 were? I’ve had all my bloods taken today so should hopefully have the results in a few days time.
Unfortunately I didnt receive a copy of the test. I guess it's in my medical record instead. However, my symptoms persevered even with 3-monthly B12 injections so the MRI scan was arranged to rule out anything more sinister. When that came back clear, the GP agreed to administer 2-monthly injections instead. This really helps to relieve my symptoms and apparently my B12 levels are within "normal" parameters when maintained this way.
I hope your blood test results are clear and that your doctor can work out the best way to help you.
Hi Welly73. Have you been tested for EBV or Mononucleosis? I have memoria los and also been diagnosed with EBV (Epstein Barr Virus/the Kissing Desease)
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
Misconceptions (wrong ideas) that health professionals can have about B12 deficiency
If your serum (Total) B12 results come back within normal range then your GPs may say that there is no way you have B12 deficiency/PA.
They may say that your red blood cells are normal sized so there is no way you have B12 deficiency/PA.
This is not necessarily true.
It's possible to have severe symptoms of B12 deficiency with an in range serum B12 result and normal sized red blood cells. I speak from personal experience.
It's worth knowing what the common misconceptions about B12 deficiency are in case you meet health professionals that have some wrong ideas.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
I think its worth finding the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links below.
Some local guidelines have been posted on forum so ...
1) try a search of forum posts using terms "local guidelines" or
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
I hope you are not in the UK area talked about in the blog post below which has a poor reputation on this forum as to how b12 deficiency is managed/diagnosed.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment but be warned that there are over 40 pages of info.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info (UK) is out of date in above book. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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