Hello, thanks to everyone who replied to my post on here last week, it was so helpful that I decided to get my B12 checked privately. As I said in my other post, 3 months ago my result from the test done at the surgery was 498 (120-625).
I've just got these results back from medichecks;
B12 207 pmol/L (140-724)
B12 active 63.6 pmol/L (25.10 - 165)
Even though these are in range I'm presuming they are still too low, is that right? Any advice on what to do next would be great. My surgery is a nightmare and getting them to think outside of ranges is impossible. Meanwhile I'm suffering neurologically and physically.
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pixieforest
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Hi pixieforest despite your "normal" results but because of your neurological symptoms quote the following British Society for Haematology Guidelines to your doctor
Click on the link, then on "Go to full guideline" clause 4.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
You could also mention what the N.I.C.E Guidelines advises the doctor should do when asking about Treatment for B12 deficiency
"How should I treat a person with vitamin B12 deficiency anaemia?"
For people with neurological involvement:
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
Make a list of your symptoms and present this to your doctor and ask for treatment in accordance with the above. If possible take someone with you who can validate the symptoms as the doctor is less likely to "pooh pooh" you in front of a witness. Write down what you want to say and stick to the script as it is so easy to "forget" important detail when face to face with the "expert".
I know this is not easy because I have had to "face down" my own "one size fits all" doctor who initially adamantly refused to increase the frequency of my B12 injections which I've been having for over 45 years.
I wish you well but if all else fails join the Pernicious Anaemia Society and ask for their help.
Thanks for your replies. I've seen two doctors this week and they wouldn't even look at the guidelines I printed from the links I was given in my previous post on here last week.
It's so frustrating isn't it? I was basically told this week that if they can't find anything wrong then there can't be anything wrong and that neurological symptoms can sometimes have no cause!
In your previous post you mentioned food intolerencies, are they dr confirmed or just things you have cut out and within those have you removed gluten and dairy? I ask because as your 'numbers' are technically in range it might be something else which is giving you so many symptoms, gluten and dairy can give not just tummy problems. Also have your thyroid meds been confirmed as the correct dose?
I have food intolerances confirmed by gp and dietician but have not had the tests for coeliac as I had already been gluten/grain free for 2 months by the time it was offered and my gp agreed it would make me too ill to eat gluten again just for the tests. My diet is very limited to fresh foods but even some of those I can't tolerate. I do think it's all connected - the low thyroid, food intolerances and my neurological symptoms.
I'm having my thyroid levels checked next week to see if I'm on the correct dose of ndt.
whilst active B12 has one advantage over serum B12 - it looks at the amount in your blood that is bound to the protein that allows it to be used by cells - it still doesn't tell you what is actually happening in your cells - as Eaoz says - MMA would have been a better test to go for as this would have given some indication of what is happening at the cell level.
B12 levels can vary but the fact that B12 is stored in the liver means that the drop in 3 months does look like a significant drop.
Sometimes it is better to put things in writing to a GP rather than presenting them at an appointment. You could also copy to the practice manager.
If coeliacs might be a factor then it is better not to give up gluten until you have had the test for coeliacs.
I didn't want to spend the money on an MMA until I had an idea of my b12 levels since the previous one was 498, and yes I am concerned that it has dropped that much since March, especially due to my strict diet as I have no source of b12. I haven't been ablessed to tolerate animal products for over a year so I guess what I have now is what has been stored.
I have considered writing to my gp and practice manager and may possibly do that.
The neurological symptoms together your low level of B12 as well as the fact that you already have thyroid disease, means that you should be treated without delay to avoid possible permanent damage,
This really interesting research showing the progression of Hashimoto's to PA was recently posted by Dr John Midgley on TUK forum and might help your case when you write:
"(3). e natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first to iron-deficiency anemia, followed by PA"
"iron Deficiency and PA"
"Chronic atrophic gastritis is clinically silent in most cases and only a small percentage of patients may complain about dyspeptic symptoms. A well-described clinical feature of thyrogastric syndrome is represented by the presence of an iron-deficiency and/or a PA. "
Thanks this is very interesting. On thinking about things I'm going to see what the results of the blood tests next week are and then decide what to do next. It took years to get treated for hypothyroidism and I haven't got the energy to go down that route again especially as my symptoms are worsening. I'm considering trying b12 patches and spray and will see if things improve.
From reading on here it seems active b12 at 63 is in the grey area and not high, but I can see it's certainly not very low, although there is a big drop in serum b12 within 3 months which indicates to me that something is going on.
Doctor's took years to treat my low thyroid, then incorrectly treated it for years more which led me to start self medicaring, so I can't say I have much faith in doctor's, especially when they're more concerned about what their computer says than my symptoms.
I'll be having my thyroid levels checked next week as well as vitamin d, ferritin and cortisol and I'll see where to go from there.
Thanks everyone for the advice, you've been very helpful.
I believe the most important facts to remember Pixieforest are that you cannot overdose on B12 and that there is a short window of opportunity to treat neurological symptoms before they become permanent. You'll also already know from the latest BMJ research that there is no gold standard test and the patient's history and symptoms are paramount.
I also found it it took a long time to get a diagnosis of Hashimoto's some twenty five years ago and was, even then, undertreated until I researched myself and fought for a higher dose. I now source and take my own NDT. Although many symptoms of Hashi's and B12 overlap, I do not believe the neurological symptoms you describe are Hashimoto's, especially as the drop in serum B12 level could indicate that you are now not absorbing it.
Many of us (five in our family) with autoimmune disease have history of gastric problems (sometimes silent) and, after research, I supplemented Jarrows B12 5000 mcg SL for years. It was only this year after two viruses, that I began to experience crippling fatigue and tingling tongue, fingers toes, etc. I realised that, in my case, age related lower hydrochloric acid had contributed to probable malabsorption too. I decided no way was I going to waste precious time on stressful dialogue with GP or waiting for various tests to come back!
The link above posted by Dr John Midgley was a lightbulb moment after years of reading and research. It confirmed to me that I was not wrong in starting to self inject B12 every other day three months ago when I first noticed these symptoms ( I'm relieved to say that they are just beginning to diminish 🤗)
Having watched my younger sister with Hashi's and severe B12 deficiency deteriorate badly over the years through misdiagnosis and failure to treat in time, I'm so thankful that I found this forum and the excellent links and research available.
I'm sorry to hear you had problems getting treated too, it doesn't seem right that people have to research and treat themselves but if that's the only way to get better I'm also not going to waste time trying to get treatment when it seems almost impossible. I've ordered some b12 patches and will see if there's any improvement. As for injections, I'm reluctant to try them now I've thought about it as I seem to be intolerant to pharmaceuticals and don't want to risk any potential reaction which would add to my problems.
I've done a lot of reading today and there seems to be many links between b12 deficiency, thyroid issues and digestive problems. I know it's easy to get carried away when researching things but so many things have suddenly clicked into place.
Sorry to hear about your sister that must have been very difficult. It's frightening to realise how much is missed or ignored by medical professionals.
If you could have one or two injections from medical professionals you would be able to find out in a protected environment whether you had an adverse reaction. I had the same concerns re. intolerance of medications, but was fine. Maybe it's worth asking for a trial? Understand your concerns about asking though if they're a bad surgery and unlikely to listen.
That's a good idea, I think I would it a try although getting them to listen is impossible.
I've tried 2 of the high strength viepatches (got the second one on now), I noticed a slight improvement with the first patch but nothing so far with this one. I took my daughter to school this morning which is only a few minutes walk away and had to sleep when I got back.
Am I right in thinking that now I've used the patches any tests done soon will be scewed?
I'm not really sure how much is absorbed from the patches. Usually it's best not to supplement before a test, but as Polaris points out, if your problems are due to B12 deficiency you can't hang around for too long waiting for treatment.
I have seen people here report that doctors won't accept the results of private blood tests, by the way.
Anyhow, here's some more info about the MMA and homocysteine tests in case you hadn't seen it.
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Medichecks blood results - still unsure what's causing symptoms.
High B12 serum, Medichecks result active confusing.
