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AIBU?

To think I should complain?

16 replies

Mehfruittea · 14/11/2016 17:02

Name change to prevent outing myself!

This is a long story I will try to keep short, without needing to drip feed.

10 years ago I had NHS treatment that affected my digestion and bowels etc. I was supposed to have annual follow ups to check everything was OK. I moved house shortly after the treatment, staying within the same city, same hospital and NHS trust but new GP.

I told my new GP I needed regular blood tests and follow up due to the treatment I'd had, I asked about 12 months later and they did a blood test for me. Everything was fine.

5 years ago, 5 years after treatment, I had my baby. Within a few hours of birth, a doctor arrived to take a blood test...from my baby!!! I was emotional, sensitive, and shocked because I didn't know this would happen. dr explained I was Vit D deficient and this had been diagnosed at my 20 week check up. I had not been informed. He checked and said a letter had gone to my GP. I was angry because there was plenty I could have been doing in that time to protect my baby and me. Baby's bloods were fine and vitamin drops were recommended as a precaution. I did not receive follow up but asked my GP about a blood test. They did one that showed I was low and prescribed a short course of Vit d to get me back to a normal level. They did not look at why I was deficient.

A few weeks later I experienced severe pain in my hands, that spread to my hips, then all over my body to every joint within 12 months. I was diagnosed with a rare condition with symptoms including widespread pain, fatigue, Vit d deficiency along with quite a lot of other symptoms that I had been experiencing myself. This may now be a misdiagnosis.

Within that first year, I asked my GP to check my calcium levels, as I knew that a baby would take calcium from mum any way they can, including from the bones if not enough is present in the blood. I can't remember the result, but I was not put on any medication or ongoing follow up.

I returned to my GP many times over the next 2 years, as the decline in my condition was so bad that I needed strong pain medication; oral morphine, fentanyl as well as other drugs. I now use a wheelchair.

The impact on my life has been immense. I had a career before I had my child, but returning to work as a disabled working mum was too much for my employer of 10 years to take. I was made redundant. I've lost 4 more jobs since then, due to my disability. At times I've absolutely had the evidence to go to tribunal for discrimination, but felt the impact on future employment would be too great. I didn't need another reason to lose a job. I'm also the main earner in our family. Goady fucker warning please don't pull me up in this, the thread is way too long already and not about discrimination. Trust me when I say it happened, even though it's not supposed to.

The medication I take means I cant conceive naturally or carry a baby via IVF conception. We applied to adopt but were declined due to my disability. Social worker assessing us said we had enough in our plates. At that point, OH had a breakdown and has not recovered as yet. Basically, my life may as well have been put in a blender and liquidised. It's not what I thought it would be, I'm not the mum I dreamed I would be, and I've been coming to terms with my new life ever since. I'm at the stage where I'm accepting it and moving forwards.

Then last week I was diagnosed with low calcium, due to Vit d deficiency and it has affected hormone production etc. I have an overactive parathyroid due to low calcium. The main symptoms are widespread bone pain, fatigue, being narky and a few other symptoms all of which I have.

So now I am on calcium suppliments. They may reverse all of my symptoms. I might recover and get the old me back. This is really tough to get my head round, as previously I was diagnosed with a progressive, permanent condition that had no cure. Only pain relief options.

AIBU to want to trawl through all my medical records to see why the fuck this wasn't considered before? I only happened on this diagnosis as I had been sent to see an endocrinologist to diagnose ME/CFS but by chance (?) they did this blood test instead that checked my hormones and vit/mineral levels.

I feel let down by my GP and the hospital that should have followed me up after treatment. AIBU for feeling this way? I feel I need answers to make sense of all this. I'm going a little bit loopy with all this stuck in my head and no one in rl to talk to. Please be kind to me if you don't agree. I'm happy to consider all POV on this. I'm just not my most resilient right now.

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m0therofdragons · 14/11/2016 17:06

I would talk the PALs and ask for a review of your care then go from there