I'm so fed up of continually being or feeling ill. I can't actually remember the last time I felt good.
I have low Vit D, Iron transfusions every 6 months to a year, PA (Low B12 for those who don't know), Hypermobility, Depression, itchy sensitive skin, Severe IBS (both sorts), I had an operation on my rectum, which has left me less able to hold lose bowl movements, I'm too tired for sex with my husband, and I get pins and needles in my hands / feet, plus I'm often cold & now I've got sodding siactica too!
I'm just tired of it all, mentally & physically.
And I find myself angry, at myself, my husband, my poor children who are 3 & 5, and don't understand that I feel sick or have no energy to play with them. All I want to do is sleep 80% of the day. I don't want to be grumpy anymore.
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Alpacaem
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Other than the children this could've been the majority of what I would've posted today except I'm a lot older than you. so, I can empathise with you. Have you had your thyroid levels checked? I think you'll get lots of help from people who have far more knowledge than myself. I wish you well. X
Poor you - it's terrible, isn't it. How much B12 are you getting? Do you need more? If you are getting lots and more makes no extra difference, are you getting enough B9? This is easy to get and take as folic acid tablets. You may need lots per day of the usual 400mg ones. Are you taking a good multivitamin and mineral supplement? This too will help.
The people here understand and care. If you want others to share your experiences with and for lots more information you could ask to join the closed Facebook group at https/facebook.com/groups/PAB12DS...
You definitely are not alone!
You've found the right place to get help to improve things where possible! Love and hugs to you!
What treatment are you getting for your PA (Pernicious Anaemia) eg number of loading doses and frequency of maintenance injections?
You mention pins and needles which are normally considered to be a neurological symptom. In the UK, the treatment for someone with B12 deficiency with neurological symptoms is more intensive than the treatment for someone with b12 defic without neuro symptoms. Do you have other neuro symptoms?
Sadly some GPs are unaware that the treatment for those with B12 defic with neuro symptoms is more intensive and sometimes sufferers just get the standard treatment.
Details of UK treatment can be found in
1) BNF (British national formulary) Chapter 9 section 1.2
2)BCSH Cobalamin and Folate Guidelines
This document came out in 2014. Some GPs may not have read it. I gave a copy to my GPs.
3) This link contains similar info to BNF in Management section.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
by Martyn Hooper
"Could it be B12?: An Epidemic of Misdiagnoses"
by Sally Pacholok and JJ. Stuart
Test Results
The most useful thing I have learnt over many years of being ill is to always get paper copies of all my blood test results. Sometimes I was told everything was normal and when I got a paper copy everything was not normal....Most UK surgeries will charge per copy. I found it helpful to look particularly at B12, folate, ferritin and full blood Count (FBC)
Have you ever been tested for Coeliac disease? It is possible to have Coeliac disease even if your blood test comes back negative. If you have a negative result and Coeliac type symptoms continue, there are other tests that a GP can do. There are quite a few on the PA forum who are either Coeliac or gluten intolerant. See links below.
I think Mabsie's comment about getting thyroid tests is helpful. The symptoms of thyroid problems can overlap with those of B12 deficiency. the Thyroid Uk forum on HU is very active.
What treatment are you getting for B12 - most of what you mention could well be down to the not having the correct treatment for B12 absorption problems. Your doctor will, in all probability, dismiss this as a possibility because you are being treated for the low B12 or your levels are now 'in the normal range' but treating a B12 deficiency is a lot more complex than just shoving a lot of b12 into you periodically.
I think that my symptoms actually continued to worsen after treatment for B12 started - depression and anxiety were getting worse - I was developing psychosis and my balance had more or less gone. Things only improved when I started treating myself with a lot of B12 (mainly a nasal spray). Tried talking to my GP but just got the 'can't be B12 because you are being treated response'.
I don't know but I suspect that my problems were caused by an autoimmune response to high B12 in my serum (which may actually affect about 30-40% of the population) - the body tries to shut down the mechanism that transports the B12 to cells where it is used so you end up functionally deficient - loads in your blood but none actually getting to where it is needed. There isn't much out there on treating a person with B12 absorption problems when this happens - some find that lower doses more frequently do the trick - others that they just need to take ridiculous amounts of B12 - in my family this seems to have affected myself and my mother ... my brother and aunt both have problems with B12 but neither went down the diagnosis root and just started supplementing at lower levels using a nasal spray ... and need a lot less than my mother and myself who had both been put on the treadmill of injections. Must emphasis that that is personal observation and theory rather than a scientifically tested hypothesis!
B12 isn't toxic so that isn't a worry.
As deniseinmilden says - you need to keep an eye on levels of other vitamins - particularly B9 as the body won't be able to process and use B12 without it.
You may also find that a different form of B12 helps - I use hydroxo, methyl and adenosyl because they all work on different symptoms - adenosyl has been the only thing that has given me back bladder and bowel control ... but that's me and experience for you could be quite different.
It tends to be only injectable B12 that is controlled by prescription - other formats that can be effective - sublingual tabs and sprays, nasal sprays and skin patches - tend to be covered by rules relating to vitamins and health supplements ... and can be readily sourced from reputable suppliers on the internet.
Really hope that you start to get treatment you need and see an improvement very soon.
Thank you very much for this detailed reply Gambit - I wanted to ask more about the functional B12d because I'm talking ridiculous amounts and unless I'm at the "spotty-as-a-result-of-huge-amounts" stage I feel my symptoms coming back. It's crazy and I was wondering if there was more info out there as I can't find much, so I'm glad you've confirmed that you've found the same thing.
That was my exact state few years back and I saw so many doctors and spent lots of money without any benefit at all. Finally I myself discovered that I had severe intolerance to GLUTEN for over 30 years without knowing. This has caused me all sorts of health problems including b12 deficiency which I am now focusing to correct.
Based on what you have mentioned above I would definitely look at Gluten as one possible cause if you have not already done so. all you need is to stop eating any gluten related food for 3 days and your body will tell you if it likes it or not by noticing a big difference.
Feel your pain.... I almost passed out driving home from work yesterday. Its a good thing nothing jumped out at me. I would have reacted till too late. Got home and slept for 2 hrs. and took an iron and magnesium supplement.
I have two teenage daughters and a husband on the receiving end of my tiredness and crankiness. I can barely get out of bed every morning, let alone make breakfast and lunches for my girls. And then off to work. I only work part time and finding even that wearing me down. I have IBS as well, and I am probably losing minerals because of it. I take vit d, b12, magnesium and vit c everyday. I also take digestive enzymes and probiotics because I do believe I am gluten intolerant. I stay away from dairy. My tiredness comes and goes. Sometimes I have energy, sometimes not. When I start walking around cranky and complaining I am realizing it is because of my illness. My family does not understand because they cannot see it. I have tried explaining.
My new thing is to come home and nap right away. Don't clean or start cooking or anything until I have rested. I remember my father doing this. Laundry will have to wait. I left the floors dirty for 3 days. Couldn't get to it.
I hope you can find a solution and find ways to rest, and still play with your children.
It is not easy. I think we need to see the signs when we are unwell, and remove ourselves to a quiet place. I am going to try and do this, as my teenage daughter and I were both yelling at each other the other day because I was trying to do something and couldn't and needed help.
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extraordinarily tired feel like im going to die
Arrrgggg, so angry.
Sososo angry with GP
Tiredness and feeling angry 
So tired
