I finally got another doctor’s appointment! I asked if it would be possible to get more regular injections, but the GP said if my 3 monthly ones weren’t having an affect then there’s probably something else wrong so I’ve been referred to a rheumatologist with signs of chronic fatigue or fibromyalgia.
Does anyone with more experience have any advice or knowledge? I don’t want to end up with one of those umbrella terms for “you’re in pain and we don’t know why” when it could be simply fixed with more frequent injections.
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There may be more than B12 going on so the appointment with the rheumatologist could help to clarify that.
However, your GP is likely not to understand how B12 really works in the body - a lot of people seem to react to high serum B12 by trying to shut down the mechanism that allows B12 to pass from blood to cells - this can be over come by keeping B12 levels really high so enough trickles through to cells so they can do whatever they need to do.
on average people who have been treated with B12 shots report needing levels that are above the normal range.
when hydroxocobalamin was first introduced the frequency of shots was 1 month. It moved to 2 monthly in the 1960s and then to 3 monthly in 80s. Nobody has been able to come up with any hard and fast evidence to support this and it seems to have been driven by cost cutting.
you could suggest that your GP takes a look at the area on the PAS website specifically aimed at helping GPs and other medical professionals improve the quality of diagnosis and treatment and may be signs up to regular updates on research etc.
I definitely had low B12, but tested negative for PA. with self injecting a lot of my symptoms went. The hand tremor and tinnitus went completely, the air hunger gradually reduced ( respiratory tests showed 100% lung function) and my balance improved. Tingling and numbness in toes and fingers went. But the terrible headaches and fatigue didn't. The pain started as a headache, spread into my neck and shoulders and I'd feel nauseous. The headaches definitely weren't migraines.
I was referred to a rheumatologist by the respiratory dr but there was a 9 month wait. I was worried I might have lupus so I saw a rheumatologist privately. Diagnosis of Fibromylagia. When I eventually got to see the NHS Rheumy he said the same.
I've not returned to my GP as I know they'll only prescribe heavy duty painkillers which gave a sedative effect and other side effects. I've learnt to pace myself ( that took a long time!) and treat myself with Ayurveidic medicine, Turmeric, selenium and Vitamin D. I'd stopped eating gluten before the diagnosis but my IBS ( common with fibro) got worse. I've now given up all carbs and am taking a probiotic daily. The improvement was incredible and I feel more normal than I have for years.
See the Rheumy and get a diagnosis first. They need to rule out other things. IF you're diagnosed with fibro learn all you can about it, join the Health Unlocked Fibromylagia group where you'll find helpful support and advice.
The doctor basically just said more regular injections won’t have any affect, but I’ve heard so many people say they watched their symptoms melt away after more injections.
I would be tempted to self inject if, after I’ve seen the rheumatologist, I still don’t seem to have any answers, but it would be good to rule anything else out first.
Fibro and Chronic fatigue can be linked to LOW thyroid hormones. Has your thyroid been checked correctly - not just the TSH ? Important to have VitD checked too and Ferritin.
Pop across to Thyroid UK here on HU - thousands and thousands of posts about both CFS and Fibro. I was diagnosed with Fibro by a Consultant Rheumatologist back in 2000 and then Hashimotos - auto-immune Thyroid - in 2005.
I got checked for TSH and vitD last year, ended up on high doses of vitamin D before they even realised I had PA, so obviously all my symptoms were still there. Not sure about Ferritin though, I’ll have to ask at my next appointment. Thanks
TSH is a Pituitary hormone and tells the Thyroid to secrete the hormone T4. This is a storage hormone and does VERY little in the body. It has to convert into the ACTIVE hormone T3. Neither were tested it seems - so how would anyone know how your thyroid is performing. Also you need the Thyroid anti-bodies testing - Anti-TPO and Anti-Tg - to rule out Hashimotos - the most common thyroid condition globally.
B12 Deficiency and Thyroid issues are very common together for many reasons.
I haven’t been sent a letter yet, I’ll let you know when I know. Where about a in the country are you based? I’m quite lucky in Derbyshire with the NHS and healthcare.
Do you know anything about alternative treatments, things like patches or spray? I’m just trying to avoid having to self injecting without the doctors knowing.
by the time I found a doctor who figured out what was wrong with me, (I had so many symptoms 4 doctors said I needed counseling ) My B12 was un-detectable. My nervous system was a total wreck, I had every symptom you can imagine. I believe My dosage went like this..... 1 shot every day for a week ?? , 2 shots a week for a month, 1 shot a week for a month and then one shot a month and I have done well. I have been on 1 ml or CC shots once a month for 17 years. I even tested sublingual high dose b12, 5000mg a day under the tongue for a year and did fine. I've never met anyone or talked to anyone else who had no detectable B12 like myself or had all the symptoms.
How did you persuade your doctor to give you more frequent injections? Or did you inject yourself?
My b12 levels were detectable but very low. Obviously now I’m having treatment they’re higher than normal, but my symptoms are still here. I’m finding it really difficult to explain to them, because on paper I’m fine, but I know that my symptoms haven’t gotten better.
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