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Pernicious Anaemia Society

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Advice please

sarahstevo1974 profile image
6 Replies

Hi

I have just come over from the thyroid community

I have UAT & Hasimotos diagnosed in April this year currently taking 75mcg levothyroxine

Latest blood results as follows

September

TSH 3.39mu/L (0.38-5.33) GP will not increase Levo

November

B12 236ng/L (180.0-914.0)

Ferritin 58ug/L (11.0-307.0)

Folate 7.3ug/L (3.1-19.9)

GP says all is fine no further action

Symptoms include

Dizziness on a daily basis (taking betahistine 8mg 3xdaily)

Pins & needles in fingers

Internal Tremor visibly shakey hands usually on a morning wears off as day progresses

Really tired even after a good nights sleep

Occasionally blurred vision and spots in right eye - eyes feel gritty and tired (using hypromallose eye drops daily)

Brain fog

Any advice on what to do next would be greatly appreciated

Thank you

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sarahstevo1974
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clivealive profile image
clivealiveForum Support

Hi sarahstevo1974

Having UAT and/or Hashimoto's may put you at risk of developing a Vitamin B12 deficiency.

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

Although flagged as "normal" both your B12 and Folate are at the low end of the scale so perhaps you should make a list of your symptoms, present this to your doctor and ask whether he would prescribe a trial course of B12 injections and possibly a folic acid supplement.

I am not a medically trained person but have had Pernicious Anaemia (a form of B12 deficiency) for 46 years and there are others on here who will be able to advise you.

sarahstevo1974 profile image
sarahstevo1974 in reply to clivealive

Hi

And thank you for your response I will do as you have advised when I have my next GP appointment in the meantime do you think supplements may help? And if so which and how much?

clivealive profile image
clivealiveForum Support in reply to sarahstevo1974

Remember I'm not medically trained. A lot will depend on how long it is before your next doctor's appointment as any self supplementation will "skew" any further tests he may want to take.

What is your diet like?

B12 is sourced naturally by eating red meats, fish, seafood, eggs, poultry and dairy produce and Folate from leafy green vegetables, sprouts, broccoli, spinach, asparagus, peas, beans etc so, unless you have an absorption problem with your stomach, increasing your intake of these foods may suffice.

sarahstevo1974 profile image
sarahstevo1974 in reply to clivealive

I eat lots of meat fish chicken and dairy I also eat plenty of green veg most of my meals consist of meat or fish with veg on the side so I don’t think my diet is a problem and my next GP appointment is in 2 weeks but I don’t hold out much hope as it took me 3 months to convince him to even check my vitamin levels and he won’t budge on increasing my thyroid meds’ so I feel like I need to just try and help myself failing that I could make appointment with different GP might have more luck all I know is I feel really rubbish and not myself just need to get at least one GP to listen to me and not my blood results!!

Thanks for your thoughts

clivealive profile image
clivealiveForum Support in reply to sarahstevo1974

Your doctor should be treating your symptoms not just looking at the computer screen.

The British Society for Haematology guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

Who’s at greatest risk for B12 Deficiency?

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 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

.

Finding the cause is the difficulty. You can obviously rule out Vegan/vegetarian but can you see yourself among any of the other above "people"?

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

My heart goes out to you in your dilemma. It is poignant for me that the doctor, who eventually got the diagnosis of P.A. for me way back in 1972 died last weekend. I'd had stomach surgery at the age of 17 thirteen years before and by the time I was diagnosed, I was a walking Zombie. The doctor asked whether I wanted the good news or the bad. I asked for the bad. She said "your going to die within two years" so I said "What's the good news?" She said "You're not going to die within two years if either you eat raw liver three times a day or have monthly injections of B12 for the rest of your life". Thanks Doc.... I chose the injections and I'm still "clivealive" and over 75.

I suggest you start a new post on here and ask for advice on self supplementation with B12 as there are many on here who do just that.

I wish you well.

sarahstevo1974 profile image
sarahstevo1974 in reply to clivealive

Thanks for all your advice I wish you well

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