I asked for a copy of a recent cardiology report where AF was diagnosed. The report mentions hypertension, PMR, OA, B12 deficiency (oral tablets) and mild macrocytosis. I assume the latter was identified at the last routine bloods, nearly a year ago, but is not a cause for concern. It’s a new one to me and looking it up it’s a condition which causes enlarged red blood cells. Associated with B12 deficiency and can be caused by some meds ( methotrexate was one). I don’t take mtx but do take a couple of prescription B12 supplements daily.
It can cause fatigue; I’m totally wiped at the moment in 5mg and have given up trying to reduce further . I asked gp for a morning blood cortisol test to check adrenal function, which she agreed. B12 will be done routinely…I’m wondering if the daily tabs aren’t enough. Consultant said tabs don’t work, I should have injection but didn’t make that recommendation in his report. Anyone else come across this condition?
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Can you get B12 in a sublingual form? That is pastilles or spray to take under the tongue. That has been found to be absorbed as well as injections. The consultant's comment was a bit sweeping - tablets may not work for everyone if they have pernicious anaemia but not everyone with low B12 has PA.
Don’t know. I’ll ask when I get next bloods done. I don’t have PA or anaemia and there’s no reason I should be low on B12…but there it is. Seems it’s on the increase. Along with PMR, steroids, sluggish adrenal function, AF and bradycardia there’s a bit of a perfect storm for extreme fatigue. It’s trying to pinpoint if there’s something that will help but I guess it’ll just be a question of plodding on. Thank you.
You have come across deathly fatigue caused by your adrenal glands. Personally I would not try and reduce if you have bad fatigue, but ideally don’t increase either. Deathly fatigue really is a pain, it makes you feel quite zombie like.
Thanks. I’m sticking at 5mg for a while. I went through a deathly fatigue thing about 18 months ago when I got down to zero. But it’s worse this time. What a journey!
Have they not offered you Vitamin B 12 injections , or are they hoping you can resolve the Deficiency using oral supplements first?I'm surprised because they usually prefer to give you the injections if the B 12 Deficiency has already caused a change in blood cell size. I think I would be inclined to request this option at your GP Surgery if I were you. Especially if you know you had been eating a nutritious diet or using over the counter vitamin supplements before you were diagnosed,
Have they also done the blood test for Pernicious Anaemia yet , it's called Intrinsic Factor ?
If not it is something to ask for them to check as well as requesting Iron, Ferritin and Folate blood tests if you have not had them.
Be aware , if you have further B12 blood tests to stop the supplement 72hours before the test so that recently taken supplements don't give you inaccurate Total B 12results.
It can also be helpful to have an Active B 12test instead of a Total B12 test , as you can be deficient in Active B 12 (the B12 in its useable form in the bloodstream) but have low or borderline Total B 12 results.
Intrinsic Factor tests are only positive in 47% if patients with PA as often the PA antibody levels are low but still depleting . PA can effect how well you absorb nutrients especially B12. The test is still worth doing though before beginning injections .
You can have all of these issues with a good diet. You may find that your B12 level does not rise well with oral supplements, this can be because you are not absorbing B12 during digestion . This can happen because of various digestive conditions. metabolic issues and as we age. Many medications can add to this lack of absorption including Steroids , PPIs , most antidepressants, some blood pressure medications and some NSAIDs most commonly because of their effect on the pH of the stomach.
If your symptoms get worse, or your next B12 test is not much improved , even with supplements, you should request injections as leaving B12 Deficiency untreated for any length of time , especially if it has effected the blood cells , can make you feel very unwell and effects many body functions.
I am diagnosed as Vitamin B 12 Deficiency Anaemic (possibly Seronegative PA) and Folate Deficient.
I had Macrocytosis when I was diagnosed.
The differing shape in the red blood cells mean that it can cause various other symptoms including, low oxygen. poor circulation , low Ferritin , anaemia , breathlessness and palpitations, changes in blood pressure , dizziness, increased pain in the joints and muscles and fatigue.
I received loading doses of Vitamin B12 over three weeks. Most people then start 3 month injections .
I get 2 monthly ones because I also have neurological symptoms made worse by low B12.
I also require Folate infusions because my problem is caused by Pancreatic Enzyme Insufficiency and Metabolic problems and is made worse by some of the medications I need to use too.
The B and Folate Deficiencies also caused me recurring Vitamin D Deficiency.
Medications and B vitamin deficiencies act in a vicious circle. Sometimes drugs can reduce how much B12 and Folate we absorb making our blood levels low. In turn , low B12 and Folates reduces how well we absorb our medications and the nutrients from food (especially Iron and Vitamin D) which means we may not absorb the full dose of the medications we take , making it harder to control our illness symptoms.
I felt a lot better in general when they finally discovered these deficiency problems and I started receiving the right treatments , and it has made controlling my other health conditions much easier , take care and let us know how you get on, Bee
Thank you for taking the time to give such a detailed response. You’ve given me a number of things to consider.
I believe the macrocytosis is new; B12 deficiency was discovered during routine blood tests about 5 or 6 years ago and intrinsic factor test was ok so no PA. I declined PPI because of potential B12 impact, don’t take antidepressants or NSAIDs.
I’m not anaemia and ferritin was ok. Not sure if folate was tested. Have all the muscle and joint pains; not unexpected with PMR and OA. Oxygen is regularly what I think is low…drops to 75%. My watch monitors it and when I think to check it’s up and down from that to 99%. Can’t say the B12 tabs made me feel any different, but the level ‘improved’. Doesn’t mean it’s being utilised fully though, in my view. It seems to take three months before it can be tested after oral supplement. I should get an appointment for bloods in the next few weeks and I’ll pursue with the Gp whatever the level. I’m increasingly convinced it needs tweaking. PmrPro suggests sublingual may be an option so I have a couple of avenues to check. Thank you.
I also had folic acid deficiency along with B12 and now have prescription for 3 months as Dr advised it will take this long to improve. Hope you get it sorted.
I use B12 patches instead of oral tablets because my diet seems to consist of just too many pills to be taken at different times of day, some with and some without a meal etc etc. And my hands hurt so much popping them out of their packaging or opening the child proof bottles.
I’ve accepted that 5mg just isn’t working for me and added an additional 1mg until I’m ready to negotiate this tricky place again, and I have supplemented my non meat diet with iron, magnesium, Vit K and D and the B12 as well as whey protein which I genuinely believe got me through the taper from 7mg to 5mg in the past few months. It’s a while since I had a blood test but the last one was okay and I go by how I feel and look and function. At 5mg it was all a bit of a struggle.
Have you considered using a Liquid Spray instead of pills , for any of your vitamins including B12.I just thought I'd suggest this because research about Dermal Patch supplements is that they aren't very successful at improving your vitamin levels, in studies on Vitamin D and Vitamin B12 people whom used them still had low or Deficient levels of the vitamins after 12 weeks , lower than those taking oral supplements.
It's because even if you carefully prepare the skin site before putting the patch on ( the test subjects actually had some skin scraping before the patch was applied) the vitamin does not cross the skin barrier effectively . They are discussed quite often on the B12 / Pernicious Anaemia Forum and most forum members found the same problem but some do better with liquid or spray B 12.
Thankyou for that suggestion. Having been prescribed Fentanyl patches in the months before PMR was finally diagnosed I assumed dermal patches were considered effective. I didn’t read the statistics for B12 patches. I will look at spray options. I do like gummies too but suspicious about their efficacy.
Just in case part of the problem is caused by digestion or poor absorption it's usually better to take oral supplements in the simplest form possible , after a meal , with plenty of water to increase the time it is in your digestion for better absorption. Often active forms of supplements are better, like Methylcobalamine in the case of B12 ( it tells you which type of B12 is in a supplement in the ingredients).
Also avoid food high in Vitamin C in the meal at the time you take B12 as this is one of the vitamins that can reduce how much of it you absorb.
If you take Iron or Folate it is good to take them after food and a drink with Vitamin C.
Holland and Barrett and BetterYou do have a few McB12 supplements.
Sublingual Methylcobalamine is the better option.The liquid options are also easier to absorb.
Many people get good improvement on Solgar products or the BetterYou spray.
The synthetic cyanocobalamin is often the one which is least well absorbed .
I have to take the oral supplements as well as getting the injections because current rules in the UK only allow 8 weekly injections for Neuro cases because of some misinterpreted research . So for the two weeks before my next injection my symptoms start building up again like clockwork. If I lived near you I could by the injections over the counter and have them at the six weekly intervals I require. Ridiculous, isn't it!
I've got two consultant appointments next week , in the week before my next injection, not very helpful as it means I am stuck doing them slurring my words , heart racing and with the tremors, Basically making it very difficult for them to decide if my cardiac and neuro treatments are working or not.
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