Well, I've had the blood tests and all three - Folate, B12 and Ferritin have all come back a bit low. When I rang up for the results I was told, "They are all a bit low but doctor says no action required" ??
I went to the Nurse today to have my HRT review and asked for the numbers -
B12 - 185
Folate 9
Ferritin 12.2
By what I can gather, anything below 200 in B12 is low and requires attention and normal Ferritin levels are from 11 to 307 so I'm just barely above the lowest point there as well.
Any suggestions as to what I should do? I was thinking I should start with a face-to-face with my GP?
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NanaFifi
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I have no idea what my count is but have confirmed pernicious anaemia, the symptoms you can look up and then if you think you have the symptoms it would be worth talking to your GP or RA consultant. There are different types of anaemia, and diet can be one. I would think your GP will not mind you asking for more information and then you will have all the facts at hand.
Have a family history of pernicious anaemia and I'm pretty sure that's the road I'm heading down - may be just too early to start treatment. Will definitely speak to GP although goodness knows how long I will have to wait for appointment!
All of those are very low in range and the problem with ranges are that they are taken from a sample of bloods received in a given lab. Your own personal "normal range" could be right at the top.
Have you checked the symptom list at b12deficiency site? Would be worth posting this on the Pernicious Anemia health unlocked community too. I have read that under 500 b12 can cause neurological damage and in many other countries treatment is given below 500. Gps don't really want to treat when things are in range even with symptoms but writing a letter using guidelines and providing a list of symptoms can result in treatment, asking for referral to consultants also can help.
B12, folate, and ferritin deficiency is also cause for coeliac disease testing so look into that too.
Hi I don't know if your in the UK. You can buy vitamin b12 patches from amazon.i have them it's like a plaster u were on your arm for 24 hours. I also buy vit a that way for the winter.hope that helps x
Hi nana, if I was you I would take supplements, and go for more blood test in couples of months , I am sure that will make a difference, that is what my doctor told me if he find somethings low ,plus is good to take extra vitamins D , people whit RA usually have a D deficiency to.
Thanks for that, I think that's a really good idea. May speak to Rheumy nurse before starting supplement just in case it skews my blood test results - on methotrexate and have bloods do e monthly.
Interfere whit the use of metrotexate, or a biologic , I take many different supplement a day , from B complex 100 , Multivitamin whit minerals ,fish oil 2000 mg a day, prime rose oil 1000 mg flexsead oil 1000 mg probiotics 2 a day ,folic acid, vitamin C 2000 mg vitamin D
2000 mg, vitamin E 400 mg joint supplements 2 a day calcium zinc and magnesium 500 mg , plus I use a low fat whey protein powder Drink ,the proteins helps whit my tiredness and give a lot of energy
You need that discussion with your GP. It may be that they are waiting for your next blood test to see if your levels are continuing to fall and need treatment or are part of the variation that occurs with any test. Or your GP may not be a "pro-active" sort of person and is waiting for you to make that appointment?
There is a health Unlocked site on here Health Unlocked Called PAS (Pernicious Anemia Society) it is also for low/deficient Vitamin B12 sufferers too. They can spot a B12 problem a mile off and help you forward (with your ferritin and folate low levels too.) Yes I would class your 185 as very low, I would not be happy with it.
Thank you Kai-- , I'm of the same opinion in respect of "this is my body and I know it best!" Problem having RA + Lupus + under active thyroid is that tiredness/fatigue become routine. Clawing my way back from flare up if RA and Lupus but really feel the tiredness is disproportionateto other symptoms. Will post on the pernicious anaemia site.
I would definitely start supplementing. Pick up a methylated b12 (I like the jarrow brand that goes under your tongue) also get yourself on a methyl folate and an iron supplement. The fact that your doctor is telling you to not do anything about it is really upsetting to me because I had an iron deficiency anemia and I had a pernicious anemia and now I have horrible, irreversible peripheral neuropathy & nerve damage from years of being deficient. Trust me, it's not something you want.
If you are in the UK you may find your GP will be reluctant to treat you for B12 deficiency unless its below 150. I've had problems this year. Admittedly my Ferritin and Folate were normal, but I'm also very iron anaemic. My B12 was tested at 147 in February down from 165 in December. Initially the GP said he'd give me loading dose injections but then decided not to as he was adamant that as I wasn't showing specific B12 symptoms and my HB levels suggested that the iron deficiency was worse, so he gave me low dosage B12 tablets. These didn't agree with me and within a few days I ended up very depressed. Within a few days of stopping them, I was back to normal. GP was even more reluctant to give me injections because of that side effect even though it is NICE guidelines to do so when below 150. I've come to the conclusion though that he doesn't appear to be aware there are three different types of B12 and the tablets were the synthetic version, the other two types are natural. In the end because I started feeling worse around May Bank Holiday I purchased a B12 sublingual spray from Holland & Barrett which gets very good reviews. By the middle of July my B12 had gone up to 287. I'm now told its normal which is typical GP-speak for nothing needs to be done, although I sarcastically said to the GP who advised of the results that this was only because I took action myself. My grandmother had Pernicious Anaemia but nobody else in the family has tested positive for it (albeit that the test is known to not always be conclusive). My sister has had to supplement B12 for almost two years (she doesn't have RA) as her GP sent her down the MS route immediately (which thankfully it appears has finally been disproven, but he shouldn't have done this until looking into the B12 deficiency problem according to NICE rules) and my uncle takes B12 tablets and has done for many years.
Are you taking PPI (Proton Pump Inhibitor) tablets to protect your stomach, such as Omeprazole at all? Its known to cause problems with both iron and B12 absorption and is probably the cause of my B12 issues, albeit that I've been borderline iron anaemic for many years prior to RA diagnosis and being prescribed PPI. If you post on any forums and say you are taking PPI, they will concentrate on that even if you really need to take them. This is because of the debate over high or low stomach acid and misdiagnosis. Just a friendly warning as I've been on the receiving end of some quite forceful comments which don't take into account my own personal circumstances and symptoms and it can be quite intimidating. I know they mean well, but not everyone has the same problems or experience.
You will find from reading on forums etc that B12 deficiency is very much a lottery in this country sadly. I hope you have better experience than most of us. If you test positive for PA, you may get a better response from your GP than if you just have low B12 test results.
Been there, done that. Took my GP at least three years to get to the bottom of it (after filling me up with supplements and B12 injections that didn't last long), but eventually after I kept insisting I shouldn't be low in those nutrients because I ate a really good diet, I got tested for Coeliac disease, and bingo, that was the cause.
I'd start by asking your GP to screen you for coeliac disease. Low iron, B12 and folate are really really common in undiagnosed coeliac disease (caused by the malabsorption problems of the untreated disease). If you eat a normal reasonably health diet with normal amounts of fruit and vegetables you shouldn't be deficient in folate at all unless you have some kind of malabsorption problem.
If you do get screened for coeliac, do make sure that you have been eating normal amounts of gluten containing foods (2-4 slices of bread a day) for preferably a good six weeks before the blood tests, as otherwise you can end up with a false negative result.
I am beginning to wonder if I'm wheat sensitive as I do suffer from bloating, especially after eating pasta. I don't eat a lot of bread but I do eat scones; cake and biscuits probably more than I should! A problem that I am currently addressing - I think I'm a comfort eater and have been under a lot of stress lately. Sorry - off at a tangent! Otherwise I do eat a reasonable healthy diet, plenty fish; seafood; (I live on the coast) lean meat; pork; eggs; fruit and veg and very little processed food. I will bare this in mind when i talk to my GP - oh boy! they're going to love me at the surgery!!
My GP started me on iron tablets last week as my ferritin level was 10.2. I've to see gastric people for investigations as, GP has no idea why each month my levels have dropped. He joked that it has to go down to below 8.2 for me to need a blood transfusion!!
Update on previous post - I have now been confirmed with Vitamin B12 deficiency, have had the 6 loading doses of B12 and will be on 3 monthly injections from now on, I am also on iron tablets for a month. Although I would say I feel a bit more alert there has been very little change in my energy levels yet, hopefully that will improve by the time I've finished the iron tabs.
Thanks to everyone who listened, gave me advice and pointed me in the right direction.
Much better thanks! I don't have the same tiredness and much more mentally alert! I am very aware of when my injection is due as my concentration goes out the window along with "my words". This starts to happen about 2 weeks before injection time but nurse says I can ask to have injection brought forward, so 10 weekly as opposed to 12.
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