My sister got taken into hospital with extreme fatigue weight loss and rapid heartbeat amongst other symptoms
After tests it was found she had “severe low b12”
They gave her one dose of b12 said she would have it every other day for two weeks then they discharged her with out giving her the second b12 shot on the 3rd day releasing her without administering the shot.
We managed to fight to get the shot of b12 on the 4th day instead from the drs and then get back on track with them the problems and questions I have is.
One dr does not want to give her folate until 1st April?
Another dr says she should have it immediately?
Really struggling to get anywhere to administer the b12 shots, drs hospitals either don’t do it or are fully booked up ?????
Is there anything else she should be taking ?
How much b12 should she be having? They have said it’s every other day for two weeks then once every 3 months? (I’ve also read on here it should be for upto 3 months if neurological or until symptoms no longer improve
She definitely has neurological symptoms as she’s been really forgetful, tired, and also pins and needles numbness in hands and feet, cold, poor sleeping, agitated. Emotional
The Hospital has been useless so the only result we had was b12 103?
Is it worth taking any other form of b12 sublinguals I’ve seen people recommended jarrows b complex
B12 better you?
She does also seem a bit spaced out with high and low moods slight bursts of energy but easily tiring
Thanks in advance
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Mancity1234
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It is also important that your sister's Folate level is monitored as this is essential to process the B12 she is having injected.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.
Both iron and folate may be needed so please have these levels checked by her doctor.
It would be good for your sister to find out why she became B12 deficient in the first place.
Anyone at any age, can become B12 deficient. 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, or infections such as h-pylori 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), Pancreatic insufficiency, 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.
Do you know if your sister matches any of the above people?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
You need to insist that your sister is treated with B12 injections in accordance with the regimen given in the British National Formulary (BNF - your doc will have an online copy). For people with neurological symptoms that is - three a week for at least two weeks, to be continued until there is no further improvement in symptoms, then one injection every two months.
If there’s no obvious cause for the deficiency (I.e., she isn’t vegetarian or vegan) then the injections carryon for life. If she is vegetarian then oral supplements should, work.
It can’t hurt, and might do a lot of good, to start taking folic acid supplements now. Get them from the supermarket - just as good and much cheaper. The doctor who wanted to delay folic acid knows that it must be delayed until after B12 has started. Which is commendable. But there’s no reason to wait a week or two.
If your sister had megaloblastic anaemia then her potassium levels may drop during the first month of treatment. It might be worth eating more potassium rich foods for that period. If
' If she is vegetarian then oral supplements should, work.'
If the deficiency is due to lack of B12 in the diet then oral supplements of around 10mcg a day can be used to correct the deficiency. B12 is only found in animal products so vegans are at particular risk. Vegetarians may also be at risk if they eat very little by way of animal products - dairy and eggs or fortified foods.
However, vegans and vegetarians are not immune from PA or other B12 absorption problems. Absorption problems will mean B12 injections for life.
this is a link to the BCSH guidelines on diagnosis and treatment of folate and cobalamin disorders for your reference - GP should be able to get to it via the BNF. There has been one change which is that the BNF now recommends 2-3 months for maintenance doses if there isn't any neurological involvement rather than the 3 months in the document linked
treatment for folate deficiency should start about 48 hours after treatment for B12 deficiency.
treatment where there is neurological involvement is injections 3x weekly until symptoms stop improving (review at 3 weeks) followed by maintenance doses every 2 months/8 weeks.
Is there a possibility that someone would be prepared to show you how to do the injections rather than you being dependent on trying to find a hospital to do the loading shots.
High dose oral or sprays may help between injections - best to start them immediately after an injection.
What would you recommend in terms of tablets? Is it worth taking a b complex tablet? I see people on here recommend jarrows b complex ? I have also used b12 better you spray which I found good
I wouldn't rely on nasal spray for initial treatment of symptoms that sound so severe. Nasal spray raises blood B12 levels to only around 1000 where as intramuscular injection raises them to around 30,000. Also nasal spray B12 levels drop to near bottom of normal range just after 3 days where as injection levels stay very high for at least a month.
Hi thanks for the reply it’s not a nasal spray it’s b12 sprayed under the tongue we are still going to get the b12 intramuscular but I thought the b complex and spray might help more especially once the injections reduce after loading doses
spray may help to keep levels higher longer but people have very different experiences of sublinguals etc. Some find them effective but others don't - the only way of knowing which camp you fall into at the moment is to try and see.
Sorry - have not been on the site for a long time, I have 10 packs of B12 ampules for free, will not be able to use them up before expiry date which is July this year. I had to have a new computer and cannot get messaging to work, not even on the other forum - among other things - windows 10 ugh! I have hopped across from the thyroid forum and on there you cannot do a public offer on forum for medication so assumed it was the same here. Apologies from this end there is no cost involved, will happily post to whoever is in greatest need. Please advise when you have time.
busterboy - please put up a specific post inviting people to respond to you by PM if they are interested. This is okay if there isn't any charge invovled. The reason for suggesting PM is that it avoids addresses etc being shared on the forum. The reasons for suggesting a new post are a) people rarely see detail buried in old posts and b) it can be a bit irritating for the original poster to find that their post has been highjacked by a conversation that isn't actually relevant.
Most of a sublingual or nasal dose gets swallowed. That study wasn’t done on people shown to have an absorption problem. So the rise in serum cobalamin levels could easily be explained by absorption of the dose from the gut.
Indeed, having read the full paper they say that the peak serum level in their study was the same as that found in a study looking at oral administration.
Very worrying time for you all and I do feel for your sister, I really do. I hope she can start feeling better very soon.
B12 deficiency runs in our family, including myself and my dear dad. I have injections every three months now, but it was every two until the GP decided otherwise. However, I do feel ok, thankfully! I think the new ruling says 2-3 months depending on the individual. I also had iron deficiency for a long time as well as pernicious anaemia. But only the latter now.
However, when my dad was diagnosed late in life, he was on injections every day or so for several weeks and then they gradually reduced until he was the right level on his tests. He was then on injections every three months for the remainder of his life (he had other complications not related to the B12 condition)
You do have to fight for these things unfortunately. My dear sister had something wrong with her plasma, so her tests came back, saying that she was "normal" but low in range - I had to fight for a iron supplement, but after she started taking it, she was ok.
My brother is borderline B12 deficient, so takes supplements at the moment.
For whatever reason, in today's society we all get treated with "one pill or solution fits all" and it is simply not case. We are all individual and basically, what suits one, does not mean it suits another.
Out of interest, did they check your sisters TSH, T4 and T3 for thyroid conditions? The two conditions do walk hand in hand sometimes.
I would get print outs of test results in future and never take the results of any blood tests from the receptionist, as they are not medically trained and are only reading from the script given with the results. Always ask to talk to the GP. Mention that you have had advice from the Pernicious Society and perhaps point out the new guidelines.
At the end of the day, a medical person/clinician - gives an opinion these days, and if you are not happy, you have a right to question it and or ask for a second opinion.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
However, I do feel ok, thankfully! I think the new ruling says 2-3 months depending on the individual. I also had iron deficiency for a long time as well as pernicious anaemia. But only the latter now.
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