MY B12 JOURNEY - the story so far
In 2014 I started to suffer from severe night sweats. It was so bad that I had to get up regularly through the night to dry my body and bed. Quite often I had to sleep wrapped up in a towel. I also experienced the feeling of my legs being wet all the time and like water was running down them, but when I touched them they were bone dry. I went to the doctor about the night sweats and he referred me to dermatology.
The dermatologist said I could get Botox in my underarms to stop me sweating, however I didn’t see the point in this as it was my torso that was sweating, not my underarms! I went back to the doctor and he prescribed me Oxybutynin Hydrochloride to treat the sweating, which seemed to help. After a year on this drug I discovered it was linked to dementia so stopped taking it. The night sweats seemed to subside a little and I learned to cope with them. I was constantly tired but put it down to working early shifts and not sleeping very well due to sweating, and I learned to deal with it as my new normal.
I attended my best friends wedding in June 2016 and was completely drunk by the dinner! (Ooopsie). Thankfully I was the life and soul of the party, rather than the crying drunk in the corner! The day after I was completely fine, to my surprise I had no hangover. However, the second day I was so nauseated and couldn’t leave my bed. I had severe pain in my stomach and every move I made I just wanted to throw up. Sadly, I wasn’t able to throw up, it was just nausea.
I managed to drag myself to the doctor who prescribed me nausea tablets and asked all the usual questions of pregnancy etc. Over the next few weeks I tried many anti-nausea tablets but none were working. I constantly felt sick, was hardly eating and some of the tablets even made me faint. The doctor did the normal blood tests and all looked fine so she decided to try me on a gluten free diet to see if that would help with my nausea. I followed this diet for around 6 months, but it made no real difference. I also went for private food sensitivity testing during this period which showed nothing of any relevance.
I went back to the doctor early 2017 with severe headaches and still nauseous. I was prescribed all sorts of pain medication, even amitriptyline because I wasn’t sleeping either due to the headaches. Nothing helped. The doctor also tried changing my contraception pill to see if that helped with the headaches, as I was on the combined pill, so they changed me to the mini pill. I was eventually referred to the gastroenterologist for further investigation.
My appointment finally came through around August and he suggested an endoscopy to check my stomach along with some blood tests. I was told all the blood tests were fine, however I found out, more than two years later, in October 2019 that my b12 was tested then and it was 210, just within the reference range for my area of 200-900. When they did the endoscopy, they discovered I had damaged the lining of my stomach. They took a biopsy and diagnosed me with gastritis (the biopsy came back clear). This was when I thought well, that’s it answered, I’ll just need to deal with it. They prescribed me Gaviscon and told me to take it before meals to help line my stomach. I also continued to lead a gluten reduced diet, although after being tested for Coeliac’s disease which was negative, I wasn’t so strict with it. However, neither was I aware at this point that before you’re tested for Coeliac’s disease, you need to be eating glutenated food at least twice per day for a minimum of 6 weeks for the test to be accurate, and obviously I’d hardly eaten any.
In summer 2018, I started developing severely itchy skin. I took photos of it for the doctor to see. I also developed croup around the same time (odd I know, as it only really happens in children) My skin wasn’t red or like a normal rash, it was little white raised lumps that were itchy for about 5-10mins then disappeared. He diagnosed me with Chronic Idiopathic Urticaria (Chronic Hives basically) and prescribed me a few different antihistamines over time, as none of them worked. The hives were mainly on my head, neck and arms but occasionally developed in other areas.
Roll on to 2019 and I began getting fed up with constantly feeling sick as I knew it wasn’t right, and just generally not feeling right or happy with any of my previous outcomes. I knew something wasn’t right. My severe night sweats were back, I had started to get really faint and dizzy all the time, and I had what I thought was an allergic reaction to chocolate (my mouth and tongue started tingling). For the next week or two I continued to get tingling in my face, mainly my top lip, nose and my right cheek. I started to get a crawling feeling up my neck and the back of my head. I was still absolutely exhausted and my concentration and memory started to become poor. I was telling my boyfriend the same story a few times a week, or forgetting things he had told me, certain that he must have told someone else instead of me.
I went back to the doctor (I’ll call her Doctor B) who tried to fob most of it off as being stress. So I went to another doctor in the surgery (Doctor A), as by this point I was getting fed up with being told it was nothing. I know my own body. I told Doctor A all about my previous dealings with my stomach, and everything I had tried. She sent me for blood tests (routine ones) that all came back fine so she decided to refer me back to gastroenterology as she was at a loss and wanted to get to the bottom of it, since we had tried everything over the years. Summer 2019 was my appointment with the gastro, where he discussed my rash and nausea and decided to do further blood tests to check liver, kidneys and other general tests. He also referred me to dermatology for my skin. I’m still waiting for this appointment.
My blood tests came back from the hospital and the receptionist told me they were normal. I made an appointment with Doctor B and again she said they were all normal. I wasn’t accepting this so I asked to see the results on the screen, and highlighted there in RED was my low b12 levels. Normal scale for my area is 200-900 and mine was below range at 180. She said, and I quote, “they are not that low, we’ll test again in 3 months. You’re too young to be put on injections for life, and too young to have pernicious anaemia.”
It was at this point I was ready to cry. I came home and did as much research as I could on B12 deficiencies and PA and found out it runs in my family. I also found the Vitamin B12 Wake Up group on Facebook. I read all their files, printed a lot of them out to show how many symptoms I had suffered over the years. I included information on studies and the British Haematology Society (BSH) guidelines and went back to Doctor A armed with a folder of knowledge on b12. I told her I felt crap and I wanted the injections – she didn’t even hesitate. She told me she trusted what I was saying and had seen the suffering I had experienced and was happy to prescribe. WHAT A RELEIF!
After loading doses I was put on 3 monthly injections, but after all my research I knew I needed them sooner due to neurological symptoms, and the fact that after just 2 weeks I felt the same as I did before my injection, absolutely rotten. So I went back to Doctor B, and after having to refer her to her own book for BHS guidelines for neurological symptom treatment, she read off that I needed to have at least 1 of these 4 specific neurological problems to get the injections more often, otherwise it would be toxic for me. I was too upset to argue so went away again, did my research on toxicity, and found there to be no evidence of any toxicity from vitamin B12. So I went back to Doctor A armed with this info. I asked for injections more often and she happily put me on them every 2 months. I asked for a referral to neurology for my symptoms and she put through the request. I am now on the waiting list for neurology. I have been tested for pernicious anaemia after requesting it which came back negative. She has also tested me for arthritis which was also negative.
I was due another blood test to check for other antibodies in my system and to test me for Crohn’s disease and Cealic’s disease, but due to the Coronavirus pandemic these tests have been postponed.
I finally feel I have found a doctor who will listen and is willing to try everything to find out what has caused my deficiency. I will continue to fight for my own health, all thanks to the amazing files and group of people from the charity The B12 Society.
Here is a list of my symptoms since around 2014 (in no specific order):
Speech problems (struggle to get my words out sometimes)
Chronic, persistent cough (started around 2009 – thought it was just my job, inhaling chemicals – was diagnosed with a nasal drip)
Loss of smell (2014)
Abnormal pap tests
Severe night sweats
Recurring skin rashes
Weakness in my arms
Burnt mouth feeling after eating and drinking food that isn’t even hot.
Metallic taste in my mouth