To think I should complain?

(17 Posts)
Mehfruittea Mon 14-Nov-16 17:02:07

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 shock 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. smile I'm just not my most resilient right now.

m0therofdragons Mon 14-Nov-16 17:06:36

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

AChristmasCactus Mon 14-Nov-16 17:12:58

I'm so sorry for what you've been through. It sounds horrendous.

The thing is, you said you had your calcium checked and it was unremarkable. They seem to have done everything they could. Sometimes a diagnosis is wrong; the nature of medicine is that there is uncertainty. Nowadays patients seem to expect doctors to be perfect and sadly they are not. Diagnoses often fluctuate and change as symptoms change, and as your calcium was unremarkable and then when it was retested it had changed, the diagnostic picture changed.

I'm not sure if you complained you'd get the result you want. Long term conditions take their toll on us psychologically and it can be the case that people look for someone or something to blame them on.

Would you consider accessing counselling through your GP? It sounds like this has affected you a lot.

Mehfruittea Mon 14-Nov-16 17:16:35

Thank you m0ther. I have called them and left a message with them. I'm just waiting for a call back and now thinking if I say all this aloud to someone, they might think IABU. I'm a proactive kind of person so sitting around wondering and waiting isn't doing me any good. And I've no idea how long it will take on calcium to know if it is helping/curing or not.

user1469928875 Mon 14-Nov-16 17:18:38

Yes you should complain. Probs get hounded for saying this but I fucking hate the NHS. They don't like to look too deeply for things - because then they might have to treat them. If you had / have the money you could have got checked out by a specialist. I resent contributing towards the nhs - they make you feel like they do you a favour even though you pay for it with tax. I have private health insurance now. This should have been picked up. Why were you left so unwell for such a long time? Not good enough.

user1469928875 Mon 14-Nov-16 17:20:52

Also what type of calcium have they put you on? A lot of the supplements they prescribe are poor quality (cheap) so often your body can't absorb it as well. If you have low calcium you might also have a problem absorbing it. Check with mineral supplement is best. I say this as someone who went to a and e for an ecg this summer and the sticky pads were so cheap the nurse couldnt even get them to stick on my skin - she was sick of using them as well i dont blame her. Waste of time.

AChristmasCactus Mon 14-Nov-16 17:24:02

They don't like to look too deeply for things - because then they might have to treat them.

This is ridiculous and offensive. I hope OP takes it with a pinch of salt. There are vast swathes of evidence that show that private healthcare systems order completely unnecessary tests because they're a moneyspinner.

Sorry to derail OP.

ChocolateForAll Mon 14-Nov-16 17:24:55

I'm so sorry this has happened to you, OP. Awful. YANBU

Mehfruittea Mon 14-Nov-16 17:24:55

Thanks Christmas. I would definitely have counselling, problem is OH had his breakdown more than 12 months ago. He still has not had the counselling he desperately needs. I am on the waiting list now too.

The calcium test was done too soon I think. I now know it takes 4 months for your body to completely replenish its blood. So if my test was soon after giving birth, and I think it was around 6 weeks or so, then it may have been to soon to show the impact of calcium depletion during late pregnancy, IYSWIM. If anything, I feel like this should have been followed up by GP, as I should have had annual follow ups anyway.

user1469928875 Mon 14-Nov-16 17:27:56

Christmas cactus - offensive to who?! You? Couldn't give a shit - I know people who work in the NHS who work in private healthcare. It is an overworked failing system. I use my healthcare when I need it and my premium is reasonable. That is my choice - my opinion - my advice. If you love the NHS and are super protective you then: how sweet, go for your life and good luck. I posted here to give my opinion to OP. I can think whatever I like about the NHS. I categorically do not care about those who bleet on about how great it is - the nhs does not make me feel safe. End of. Bye!

user1469928875 Mon 14-Nov-16 17:28:26

Sorry meant to say: nhs workers who go private. Says it all.

Mehfruittea Mon 14-Nov-16 17:39:12

User..875 thank you for your comments and I appreciate your opinion. I have had mixed experience private and NHS and try to see the good aspects of both! My long term health condition has meant the free private healthcare from my current employer is not available to me. I'll check the calcium I'm on, it is the one the specialist prescribed so I hope it's right!hmm

Roundrobin1234 Mon 14-Nov-16 17:39:51

User146

Possibly not the post to have a political rant about the NHS.

As someone who is dying of a rare condition, the NHS has treated me brilliantly. People I know in the States don't get nowhere near as good treatment as me.

I'd rather have my treatment dictated by medical professionals than insurance companies.

BoffinMum Mon 14-Nov-16 17:42:07

I think you're justified in feeling angry and pissed off because a lot has happened to you, but obviously it's hard to know exactly where to target your anger. Ask for help going though your medical notes, and see if there is anything else that could have been done or which needs doing.

BoffinMum Mon 14-Nov-16 17:44:42

Round robin, a relative of mine in the US has healthcare that costs her employer £10000+ a year and she recently developed a serious health condition. There was no joined up care whatsoever, she ended up on a harmful cocktail of stupid and pointless drugs, and evidence-based medicine seems to have passed most of the country by. I ended up getting a GP mate to review her medication and generally give careful remote advice so we could get her back on track. It was appalling. To add insult to injury she was co-paying for a lot of the care and the drugs cost many multiples of what they would even cost privately in a fancy chemist here. Total joke and not what I recognise as modern medicine. The US has completely lost the plot.

Fascinate Mon 14-Nov-16 23:27:43

You want to be on cholecalciferol which is vitamin D3. Vitamin D deficiency is apparently so common in the UK (due to our climate) that 80% of adults are deficient. (This information was given to me by a rheumatologist at the Royal National Hosptial for Rheumatic Diseases when I was referred there).

Mehfruittea Tue 15-Nov-16 09:39:14

Thanks Fascinate. I'm taking Hux D3 20,000 IU 1 per week, which I think is the same. I've been taking this for about 3 years. I have now started Adcal D3 twice a day as well, plus Vit B12 injections. I had my first one last week.

I just don't know when I should feel any difference, if it helps at all...I might genuinely have the other conditions as well, and this is just another one on top, with all 3 combining to give me shit loads of pain every day. This is way in in a state of flux right now and can't get my head around it all.

I also failed to mention that I can't even drink alcohol anymore....sad I miss wine...

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