Hope you can give some advice.My daughter has been in and out of hospital several times in the last year,with dizziness spinning and low blood pressure.She had B12 deficiency a few years ago and was given loading doses but it was stopped when they retested, her folate has been low and she got folic acid for 4 months which helped.Told yesterday her folate was checked in March an it was 4(range:2.6-20).Haemoglobin is 141(range:115-165).Doctor won’t treat as they are in range,even though she is symptomatic.
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Smokey2018
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So, her B12 has probably dropped again, and that is what is causing the dizziness. But, doctors have no idea! And taking folate masks low B12 symptoms. They should always be tested together.
It would be good if she could get it tested again, to see what her levels are like. And, if it's low again, she doesn't need doctor's permeission to supplement. She could buy her own B12 and a B complex to raise folate, and keep all the B vitamins balanced - something else they don't know is necessary.
However, if her B12 is low enough to need loading doses, she should be tested for Pernicious Anemia. Pretty stupid of her doctors to stop her injections when her level rose. It rose because of the injections, not because she was cured. It really is pathetic, their lack of knowledge of nutrients!
She had B12 deficiency a few years ago and was given loading doses but it was stopped when they retested,
I thought that once on B12 injections then you stayed on them and further testing was not done because basically it will always be high if tested close to an injection or low if tested just before one is scheduled.
It might be worth you asking on the Pernicious Anaemia forum here on HealthUnlocked as I'm sure they will have come across this before and can give you some guidance:
Was told when she was admitted to A&E that her salts were low that’s why she was dizzy and twitching blood pressure really low but it wasn’t treated until she stated vomiting 2 days later.They started her on IV fluids to correct electrolyte imbalance,but refusing to treat folate,phoned GP who has given her a script for4 months folic acid
The low sodium will be causing these problems then. It is truly horrible, I can’t actually do anything when I’ve got low sodium and it is very dangerous, actually a medical emergency when it gets too low.
It’s been awful but we never realised that low sodium could be the cause she was having seizures so instead of looking for the cause they would up her seizure meds making her worse.Seizures were never controlled
Low vitamin levels are EXTREMELY common when hypothyroid due to low stomach acid leading to poor nutrient absorption and low vitamin levels as direct result
For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
I'm neither a medic nor an expert but as Barrister says above I also beleive it's important your daughter needs to be checked for adrenal insufficiency.
From my reading on the forum a gp can initially check her cortisol levels; if she's still in hospital ask them about adrenal insufficiency as she may need treatment for low cortisol.
But as Barrister says it can be dangerous and is a medical emergency. It's a rare condition and so could possibly get overlooked.
There is someone on the forum that knows and has personal experience about this condition but unfortunately I can't remember their name.
Low sodium, feeling dizzy & low BP are all signs of low cortisol levels, although they could be attributed to other conditions as well. However it would be worth asking your GP to do an early morning cortisol test between 8-9am, make sure you get copies of the results as GP's know very little about the condition. Is she losing weight, has hyper pigmentation, sleeps a lot? This chart shows what normal cortisol levels should be during the day.
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