I am exhausted all the time. Work full time, unable to do anything fun in the evenings/weekends as I just need to rest. Four months ago my ferritin level was 8ug/L (serum B12 was 219 ug/L and folate was 4.9 ug/L) I was prescribed 750mg per day of ferrous fumerate.
Three months later I've just had my blood retested and the levels are now ferritin 31 ug/L, B12 at 224 ug/L and folate 6.2 ug/L.
I am still feeling just as tired all the time. My GP says now all of the above are within normal range and I should continue with the iron supplements and expect further long term improvements.
Is there anything else I should be doing now? I have been reading around this and feel all these levels are still quite low and could be causing my tiredness (I am also having problems concentrating and pins and needles in my hands - could this be linked?) Hoping someone who knows about these things could offer advice. My GPs seem totally uninterested.
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clarest
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Hi clarest I'm not medically qualified but am interested to know if you have any ideas why your B12 level is so low as the symptoms you list would suggest that you are deficient despite being flagged "normal".
On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-
Who’s at greatest risk for B12 Deficiency?
Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.
If you can "identify" yourself as being any of the above please come back and tell us here in this community and I'm someone will be able to give good advice
Thanks Clive. I don't identify with any of the groups, although I did have surgery in March (not intestinal), and I don't know what drugs I was given then. I guess I'll start trying some supplements for B12 and folate along with my iron tablets and see if they help.
My experience was that by supplementing with B12 I made it virtually impossible to get a diagnosis of b12 deficiency although I was highly symptomatic and still am, because supplementing made my B12 levels high.
I did eventually resort to self treatment after years of trying to get treatment from NHS but it was an absolute last resort for me.
I'm not a medical professional but your B12 levels are in the grey zone, which is pretty much below 500 but not low enough that doctors will usually treat. Levels of 1000 are optimal. Clivealive cited Sally Pacholoks book which is very good and explains all about B12 very clearly. There are also books by Martyn Hooper, founder of the Pernicious Anemia Society or PAS. You can go to the website,PAS, and look at a complete list of symptoms.
Your ferritin is still low, I was low too and felt awful when my level was 31. Feel better now that it is up to 76, around 80 is good. but I still needed B12. Your folate is low and one needs good levels of folate to help process B12. Should be about 17. Someone correct me please if I am not remembering correctly.
Are you in the U.K.? I am in the U.S., things are done differently here than in the U.K. I had to go to a naturopathic doctor to get my b12 treated. I do injections every other day with a prescription from the doc. because I have neurological problems from chronic low B12 unless I inject. I have an absorption problem. I have not been tested for Pernicious Anemia yet.
As clivealive said, it would be good to know why you are low in B12. But yes, you are spot on in thinking all those levels are too low. If you knew why you are low, that would dictate the treatment.
Good luck and please keep in touch. There are so many knowledgeable people on this forum who can give you sound suggestions!
Thanks for replying - good to know the levels are low, and I will start taking supplements to see if that helps. I've been low in iron for many years, due to heavy periods (which have now been stopped by surgery), but I've no idea why I'm low in B12/folate. Hopefully supplements will help. And yes, I'm in the UK.
The best scenario is that you are only low on B12 because of your bleeding problems and subsequent surgery so unless you have an absorption problem supplementing should be OK although a health diet of red meat, fish, eggs, poultry & dairy products will give you sufficient B12 together lots of green vegetables such as sprouts, broccoli, asparagus, beans etc for Folate would be better.
I do agree with clivealive and Sleepybunny that it would be a good idea to try to find out why your levels are so low before you start self treating in order to rule out an absorption problem or other problems.
But another way and the one that sounds like you are more interested in is to supplement. If this is your preference, you could try supplementing with a good B complex along with a B12 and folate or folic acid. If you don't feel better or if down the road your levels are still low then you can deal with it then. If you don't respond to an oral B12 then you might see if a good sublingual would work. If it does, that would indicate an absorption problem.
Oral pills have to go through your stomach while a sublingual is absorbed via the tiny capillaries under the tongue. I use Superior Source No shot methyl- cobalamin in the 5000mcg dose, between shots. Others have had good luck with Jarrows-either 1000mcgs or 5000mcgs. Either is available from Amazon. You cannot overdose on B12- it is well documented, so if it was me, I would opt for the 5000mcgs to feel better sooner. I take anywhere from 5-10 the day of these a day between injections because actually only 1% will get to the cells with a sublingual.
Let us know how you are doing if you decide to supplement. I wish you the best with whatever you decide to do!
Wait a bit with taking B12, some more tests can be done. Aks your GP, with some back up info for treatment, antibodies tests or at least further testing before you take anything.
Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range. Have you looked at symptoms lists? See documents below.
1) BCSH Cobalamin and Folate Guidelines. I found page 8 about recommended treatment and page 29 , a diagnosis flowchart showing recommended process when b12 deficiency is supected, particularly useful.
2)BMJ article on B12 deficiency 2014. See 5th summary point.
Untreated or inadequately treated B12 deficiency can result in permanent neurological damage.
"Is there anything else I should be doing now?"
I wondered if you had ever had an IFA (Intrinsic Factor Antibody) test? This can help to diagnose PA (Pernicious Anaemia) but the test is not always relaible and it is possible to have PA even if IFA test is negative. BCSH Cobalamin Guidelines mention Antibody Negative PA. There are other tests that can help to diagnose B12 deficiency as well, see link below.
Have you had a recent Full Blood Count (FBC)? There can be useful clues on a FBC if someone has B12 deficiency. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells).
Macrocytosis can also happen in people with low folate. MCV may appear normal in someone with macrocytosis if they also have low iron as this can cause microcytosis (small red blood cells).
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