Hey folks, I’ve been having the on/off GP battle to actually help me manage symptoms for several years. I had success last week when a Dr ordered all the blood work I need (antibodies, iron, vits, TSH etc) in one hit and being cross checked for further Autoimmune conditions like Crohns/coeliac/Addison’s etc. While the all blood work will take time to return overnight I was advised I had a B12 Deficiency and will need injections (promptly booked for 2 weeks away). I’ve been progressively getting worse for a while with neurological symptoms and fatigue. I’m off work today cause I could barely move and had a head that felt like it had been hit by a train... I’ve got 10 days to go before I get my B12 and don’t want to be taking lots of time off work if possible.... any suggestions?!
If taking time out is what I have to do, so be it but I’d like to present a bit of a plan to my colleagues while we wait and see if the B12 improves things....
Nurse availability - I’ve been sent to the secondary practice on the first available appointment for a 2 week/6 jab course of B12. Not able to be done any earlier 🤷♀️
With neurological symptoms the treatment is different - as laid down by the British Society of Haematology Guidelines which your GP should have read. My link currently not working so do a Search for - New Guidelines for diagnosis and Treatment of Cobalamin and Folate Deficiency . First point states the importance of observing clinical signs over and above blood test results.
With neurological issues, injections should be every other day until there is no further improvement. Have you been tested for PA - Pernicious Anaemia ? What was your B12 tesult ? You wilk alsi need Folate - Ferritin & VitD tested.
There are B12 sprays and lozenges for under the tongue - but you need to discuss PA testing first with your GP. Have you obtained copies of your results ? - maybe all will be revealed as to how long you have had B12D.
Yes, I am being tested for PA among other things. I don’t have the result - just been told I’m slightly deficient over the phone. I can get a copy when I next go to the surgery. To be honest, I didn’t really get asked what symptoms I had beyond fatigue and I wasn’t really given the opportunity to explain the list of things! I was just grateful someone was doing something alternative to fibbing me off. I tend to headline when I go in for an appointment and rarely get someone who listens so hopefully this is the start of more productive conversation.
First thing is you need the actual blood test results. You are legally entitled to printed copies of your blood test results and ranges
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018
Oh really? I haven’t gotten a print out since April so that’s good to know. Thanks. I’ll pick up a print out of my results when I’m next in the surgery - I’ve previously had them provided on the same day.
If you're feeling so unwell, could you get a telephone apt and ask the GP what you should do in the meantime while waiting for the injections as you are deteriorating? You've already waited a long time to get diagnosed and in the meantime your ability to function at work has deteriorated.
If you really start to feel very unwell, could you just go to A&E and tell them you are B12 deficient and need urgent help?
unfortunately nothing except jabs are going to get your B12 levels up quickly if you have an absorption problem .... and even if you have had the shots it can take a while for all the damage whilst you were B12 deficient to clear so it may not be an instantaneous cure.
I think you need to be planning some contingency strategies as this may be a long haul rather than a quick fix.
If you have hashis then probability is that you have PA which is the most common B12 absorption problem. Low levels indicate that absorption has been a problem for a considerable length of time - years or even decades. If result of test for PA comes back positive that is good proof that you have PA - if not then its a long way from proving that you don't - false negatives 40-60% of the time depending on the test method.
Sublinguals/high dose oral, nasal sprays and skin patches are options that people with PA and absorption problems use to keep their B12 levels high but they won't be effective in raising B12 levels so are best started immediately after loading shots ... but they don't work for everyone.
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