I’m also a member on TUK. Someone there kindly directed me to this forum when I posted my granddaughters blood results today:
My 18yr old granddaughter is suffering with anxiety and panic attacked. She recently picked up her latest blood results from February. I feel she should be supplementing. Gp said everything is normal! Because of this she didn’t think to ask for her results sooner.
B12 253 (160-800) ng/L
folate 6.1 (>2.7) ng/ml
ferritin 25 (19.00-120) ug/L
TSH 1.62 (0.3-4.2) mu/L
FT4 14.2 (9.0-23.00) pmol/L
No Vit D!
Im aware we need to get more labs. Advice welcome though.
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StarFlower2
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Hi StarFlower2 whilst your granddaughter's B12 level would be classed as "NORMAL" (I hate that word) it is at the lower end of the scale.
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), 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.
Can you "see" your granddaughter among any of the above people?
Do you know what her diet is like - does it include animal products - meat, fish, seafood, eggs, dairy produce etc as these are the natural sources of Vitamin B12?
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
Thank you clivealive. Her symptoms are panic attacks, irritability, nervousness, anxiety and depression. She’s often very tired and has dark circles under her eyes. Maybe not eating properly, she’s just completed her first year at uni and in charge of her own diet for the first time in her life. I’m checking this out with her currently.
She’s making an appointment to see her gp again as her latest bloods were done in February. If we don’t get anywhere we will get private labs done.
Poor diet and "Uni lifestyle" will certainly have an impact.
It may pay to ask to have her Vitamin D level checked too.
Lower level Vitamin D deficiency can lead to a number of non-specific symptoms, including possibly chronic fatigue (experts have for many years noted an association between sufferers of chronic fatigue syndrome or myalgic encephalitis (CFS or ME) and low blood levels of Vitamin D). It has been estimated that between 50-70% of people living in the northern Europe (where daylight length reduces your chances of receiving adequate sunlight in the winter) are deficient in this vitamin by March each year. Symptoms of vitamin D deficiency include chronic pain, weak bones, frequent infections (recent research has detected an association between vitamin D deficiency and severe pneumonia), depression and fatigue.
Ive just spoken to her and told her make another appointment with the doctor, I’ll go with her. In view of her symptoms i don’t understand why the gp didn’t test Vit D. Her alkaline phosphatase is below range pointing to low zine and malnutrition.
In UK, emphasis in official B12 deficiency guidelines is on treating patients who are symptomatic for B12 deficiency even if B12 is within range. Sadly there are some GPs and specialists who may be unaware of this emphasis on treating in range symptomatic patients.
B12 deficiency can present with psychiatric symptoms first before other physical symptoms appear.
You may be able to talk directly to chairman, Martyn Hooper. There are stories on his blog about young people with diagnosed PA or who are symptomatic for B12 deficiency.
I'm assuming you're in UK. Some info may not apply if elsewhere.
A lot of links to follow but worth wading through in case GP is one of those lacking understanding of B12 deficiency.
Does she have a good diet with plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, B12 enriched foods? Having a vegan or vegetarian diet can be a risk factor for developing B12 deficiency.
If yes to B12 rich diet, diet as a cause of B12 deficiency symptoms becomes less likely and it becomes more likely that there is an absorption problem in gut.
In UK, B12 deficiency caused by diet is often treated with low dose oral B12 tablets. My understanding of UK b12 documents (I'm not medically trained) is that B12 deficiency with any neurological symptoms (eg tingling, tinnitus, pins and needles, tremors, memory problems, balance issues plus others) should be treated with b12 injections whatever the B12 level and whatever the cause. See BSH link.
Is there a history of auto-immune conditions in family? If yes to family history, this may increase chances of developing an auto-immune condition. PA and Coeliac disease are auto-immune conditions. There are many others.
Coeliac Disease?
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
NICE guidelines Coeliac disease recommend that anyone with B12, folate or iron deficiencies should be tested for Coeliac disease.
My personal preference is to put any queries about treatment/diagnosis etc into polite, short letters to GP eg symptoms, extracts from B12 documents, family history etc. My understanding is that letters to GPs are filed with medical notes so are a record of issues raised.
Oh my...thank you so much for all this info. I look forward to wading through it.
We are in Uk.
I think it could be down to diet, she’s a ok cook but I think her knowledge of nutrition is limited. Her blood test shows under range Alkaline phosphatase which is linked to low zone and malnutrition! She’s not vegetarian or vegan. However, she doesn’t like fish or eggs. I’m going to try and work out some recipes she can use that are high in iron and B vits. She’s sleeping in late so missing breakfast and eating late at night before bed. Her sleep pattern is terrible. It’s a catch 22 situation in that she’s fatigued and doesn’t want to get out of bed until midday. She having counselling for her anxiety but I feel she needs a lifestyle change but doesn’t have the energy to work on it!
Links about blood tests. GP may consider testing MMA, homocysteine, Active B12 (holotranscobalamin) if she is symptomatic for B12 deficiency. Results of these tests may be affected if a person is on b12 injections/B12 supplements. See link on blood tests below.
If GP is reluctant to do other blood tests then it's possible to get tests done privately in UK.
Flowchart link in my post above, makes it clear that people who are symptomatic for B12 deficiency should be tested for PA in UK. This is an Intrinsic Factor Antibody test. It's still possible to have PA even if IFA result is negative or normal range. See flowchart/BSH link for info about Antibody Negative PA.
I think clivealive makes a good point about checking Vitamin D levels.
Does she have any neurological symptoms? See Symptoms lists in my first post.
If yes, NICE CKS link suggests GP should seek advice from a haematologist for someone with b12 deficiency with neuro symptoms.
If she has neuro symptoms, has she been referred to a neurologist?
You may find that she gets labelled with ME/CFS if fatigue problems continue. A lot of forum members get diagnosed with ME/CFS before B12 deficiency is considered.
There's a useful summary of mainly UK b12 documents in third pinned post on this forum. See last link in third pinned post.
In her recent set of blood tests did she have a full blood count (FBC)?
FBC may have useful clues as to whether b12, folate or iron deficiencies are possibilities. See Full Blood Count link.
Some GPs may think that macrocytosis (enlarged red blood cells) has to be present for a person to be diagnosed with B12 deficiency. This is not the case. See BSH link and Blood test links for more info on this.
B12, folate and ferritin appear to be at lower end of normal ranges. Low B12 and low folate may lead to enlarged red blood cells (macrocytosis) but this effect may be masked if a person also has low iron, as low iron can lead to microcytosis (smaller red blood cells). A blood film may be useful if a person has both low b12/low folate and low iron.
It is possible to be B12 deficient with levels 50% above the lower limit. But there are a huge number of other possible causes. And I would look at them as well as taking B12 tablets.
Hi Lynn-2 I agree the normal range is so big that it’s going to show up normal as like thyroid tests they fall in the same. I would try it and see if it makes any difference to your granddaughter that’s the best way of Finding out.mine came back normal,but I found a physio who does B12 injections as a therapy,however it’s expensive at £50 a pop if you need more than once every three months. I had my first one two or three nights ago and it has helped my nerve pain which although still there isn’t half as bad,so I’m looking into self treating. Good luck with things. The best thing about it being water soluble means that the body only takes what it needs the rest is expelled a# waste x
You have mentioned a concern that maybe her diet may be causing problems. It is possible to have more than one cause of b12 deficiency at the same time. See Risk Factors links in my first post.
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