I visited the doctor as had been feeling off kilter. Loose motions for the last 6 weeks. On and off light headedness, short periods of feeling spaced out. A burnt feeliing tongue (although this has since disappeared). Had what I can only describes as a mini anxiety attack out the blue. Never experienced anything like it before lasted minutes but freaked me out.
Doc did FBC, TFT (as I have any under active thyroid and on 100mg Levo), Ferritin, LFT, U&Es, Coeliacs.
HB is 11.1
Ferritin is 4
B12 is 257
Tsh 1.63
LFT and u&e - normal
Coeliacs- still awaiting results.
I have had low ferritin since the time I was diagnosed with an under active thyroid. Despite being on and off iron tablets my ferritin has not risen more than 14. GP dismissed it as he said it's been historically low so not something he is going to start worrrying about. He said b12 was normal range too.
I contacted another Dr C who kindly wrote back to me and advised starting b12 IM injection. 1mg/ml everyday for two weeks, then 1 injection once a week for 8 weeks then 1 injection once a month main ten ever for the rest of my life.
I've researched loads and realise the importance of b12. Especially be a lacto vegetarian. But I'm scared. I've read some horrific stories on google about people have adverse effects to the b12 injections. And feeling terrible for weeks.
My symptoms are fairly mild (light headedness and spaced out feeling is probably the worst of it) but I'm scared by starting the injections it might make my symptoms even worse.
Can anyone offer any reassurance? Or any good new stories?
Many thanks
Note: edited by admin to remove name of physician
Written by
Sonkan
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Before you start sticking needles in yourself ask your doctor for an MMA test. Methylmalonic acid is a chemical used up in one of the processes mediated by B12. If you are deficient then the levels of MMA in your blood build up.
Your symptoms could well be due to sub-optimal management of your hypothyroidism or you could have iron-deficiency anaemia.
You don't want to inject yourself for life if you don't have to. And, so far, there is no real evidence to suggest that such a regimen is necessary.
Hi Sonkan did your doctor not refer to your B12 level and do you know what your Folate level was as the two combine to help your Iron to make red blood cells?
As for your reading of "some horrific stories on google about people have adverse effects to the b12 injections. And feeling terrible for weeks" ironically some neurological symptoms of a Vitamin B12 deficiency can often appear to get worse before they get better once the injections of B12 begin.
No dr just dismissed b12 as was within normal range and dismissed ferritin as it's always been low so wasn't worried about it. I'll ask him for my folate results as I don't know it but he was happy with all the blood of results.
Personally, I'd take the advice from Dr C Sonkan - as he's been studying B12def. for thirty years and has huge experience from his time in India seeing many cases of B12def. in the Hindu vegan/vegetarian population.
This article may also be of interest:
"Vitamin B12, or cobalamin, is vital to every cell in the body, says Dr Joseph Chandy, a GP from Horden, Co. Durham, who has been studying vitamin B deficiency for 30 years.
‘B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says.
It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy.
A 100g chunk of cheese provides your recommended daily amount of 2.5mcg.
But two problems can affect this.
‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’ says Dr Chandy.
‘Second, those with pernicious anaemia (known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’
Dr Chandy estimates pernicious anaemia could be behind 20 per cent of chronic disease worldwide. The range of symptoms caused by B12 deficiency is diverse with no set pattern — but tiredness and low mood are common."
PS I also have had Hashimoto's for years but am optimally treated and gluten free to minimise 'leaky gut'. Six weeks ago, I started self injecting s/c every other day and have experienced gradual improvement in all neurological symptoms with no ill effects.
You may already know that you are at higher risk of B12 deficiency if you also have Hashimoto's thyroid disease, both being autoimmune diseases and often interlinked (BCSH guidelines).
Summary points from the above latest BMJ research document:
Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
You There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features
Sorry to hear about problems with getting GP to listen.
Further testing may be advisable on B12 as the serum test is only one small marker and not a direct marker for how your body is processing B12. People vary so much with B12 that the normal range will miss 25% of people who are B12 deficient but also pick up 5% who aren't. Might be helpful to get blood results over time and look to see if there has been a trend downwards - if you were okay with levels around 250 in the past - and the vast majority of people will be - then it is unlikely that that is a problem. If your GP is looking for macrocytosis (larger rounder red blood cells) as a marker for B12 deficiency then you probably need to make them aware that this isn't actually present in 25-30% of people when the present with a B12 deficiency.
Iron is potentially more of an issue and I'd be inclined to address that first - some research seems to imply that people with underactive thyroid tend to need higher levels of ferritin than others - sorry but haven't got one of the studies to hand at the moment and a bit stretched at the moment. Along with making sure that you really do have thyroid under control.
If you have lost confidence in your GP and don't feel you can work to get that back then is there a chance of finding another doctor and trying to work with them.
What was the range for the Ferritin ? It needs to be mid-range. Thyroid hormones do not work well when levels of B12 - Folate - Ferritin - VitD are low. There are many iron products - some are better than others. Taking iron with VitC helps absorption I have read.
Symptoms appearing worse on starting injections can sometimes indicate the healing process is working.
I feel the low Ferritin could be part of the cause of your symptoms. Are your thyroid results optimal ?
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