So I went to see an actual Doctor, having been diagnosed with PA by the nurses last summer, with a B12 level of 143.His opening gambit, having looked at the September blood results, serum vitamin B12 = 496, was "You do not have Pernicious Anemia!"
Stupid me hadn't SId for 4 days, because I wanted the Doc to see me without, so I was in no fit state to argue....much. At least he didn't cancel my injections from the surgery.
So I wanted the print out of the May blood test that showed the 143 result, and possible intrinsic factor negative autoimmune, as he stated, but too late in the appointment then, and now the results are nowhere to be found by the admin staff. They've given me all the others. So this will Identify me, if they are snooping round on here.
So he decided I needed HRT. I haven't had a period for 10 years and have survived so far without and on 1 ovary. 4 weeks in, I stopped. I guess I aught to tell them, proper migraines and loads of blackheads and very weepy. Also it made me want my B12 injections every 36 hours.
I guess, I wanted the collective advice on whether HRT was worth pursuing and any link or effect with B12. I think there is no hope with this surgery, trying to argue the rules have changed. It's whether it's worth bothering to be honest about SI. Back to being proper angry, which I prefer to being tearful.
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Oneash
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I agree that she shouldn't have said that walking is not exercise. But in the context of bone health, which was the question from Simon (lifestyle changes to improve bone mineral density) she is right that walking is not sufficient as an exercise for improving bone health. Although walking is technically a weightbearing exercise, it's not enough weight (or impact) for sufficient improvement in bone health.
" If you already have low bone mass, are deconditioned, or are new to impact- or resistance-based exercise, a physical therapist can help you learn how to do these movements with proper technique so you don’t hurt yourself as you gradually get stronger."
I totally agree with not discouraging people from starting somewhere with exercise, even with just walking at first. But its also important to know that walking is not going to be enough on its own to maintain good bone health or improve it with age.
‘So I wanted the print out of the May blood test that showed the 143 result, and possible intrinsic factor negative autoimmune. and now the results are nowhere to be found by the admin staff.’
This is a Data Breach and the following laws apply :-
Data Protection Act (1998)
Access to Health Records Act (1990)
Confidentiality : NHS Code of Practice (Information Security Management - NHS Code of Practice published on 7 November 2003).
Data Security and Protection Toolkit (DSPT) (Published by the Department of Health and Social Care on 30 October 2017. Last updated 22 January 2018).
Information Security Management - NHS Code of Practice. (Published by the Department of Health and Social Care on 20 April 2007).
Network and Information Systems (NIS) Regulations (2018). (Published by the Department of Digital, Culture, Media & Sport on 20 April 2018. Last updated 4 January 2023).
Records Management Code of Practice (2021). (Published by the Department of Health and Social Care on 29 July 2016. Last updated 10 August 2021).
So, effectively you have them by the short and curlies. You have many options here. Report them to the Information Commissioner’s Office. Write to the CCG, ICB’s Data Protection Officer and Information Governance team.
The NHS databases and NHSApp are decentralised, fragmented and misaligned. This is Geek speak for rubbish (that is the polite version).
With regards to them snooping around here. Not a chance, they are too busy doing their own stuff.
‘There is no hope with this surgery, trying to argue the rules have changed.’
New NICE guidelines means just that, they are guidelines. Although, the rules have changed, they have ‘broken’ 7 laws by loosing the vitamin B12 test showing 143 ng/L. Then loosing possible intrinsic factor negative autoimmune test so that is another 7 data breaches. So, 14 data breaches by just 1 GP Surgery just for you Oneash.
See how you go with the HRT. You know your body best. Any adverse reactions please report on the MHRA’s Yellow Card Scheme.
Thanks for this. Can't say I'm up for that kind of battle..... What would be the result if I did?Just an aside to the whole data thing. My husband has had his father's test results arrive in his NHS app, because they have the same first and surname. I once had important hospital notes accidentally filed under my maiden name, then got accused of being a medical fantasist. All NHS numbers were used and ignored.
They stopped my B12 injections about 3 years ago telling me I did not have PA, and they could not find the records of me being diagnosed - after giving me injections for 17 years. I looked up my records online (which your GPs should have provided - by law - several years ago). I painstakingly went through my records about that time and my test results for about that time, and I found them. Everyone who has a computer or smart phone should have this facility under Data Protection Act (one would have thought it under Freedom of Information Act but it seems not.). If you have this facility you can look for test results there. I think you can in NHS app too. If you find them take a picture with dates. So if they get 'lost' you have proof. If you do not have this facility may I suggest you get it. You have to go to your doctors with proof of identity and they will give you the information you need to set it up. I have recently been re-diagnosed with PA and having injections again, but it was me that looked at test results. In August last year I saw B12 was below range and a note to the doctor to get in touch with me. I waited, just to see how long it would be before they got in touch. They didn't. In the end I got in touch with them to get things moving. My first injection was January this year. If I had not seen my own results online, I wonder whether they would have got in touch or just not bothered at all.
I have the NHS app. I was told the records only go back to September on there, because that's when they set it up in the practice. But there are earlier dates on there.I just hate I'm not on the ball to confront the BS.
That is the problem with our condition, if we are under treated (or not at all in some cases) we just do not have the physical or mental strength to fight for ourselves, and when we do we are usually well medicated so do not need to.
I started HRT a few years ago. My menopause symptoms were terrible. There are many different types and it can be a journey to find the right one. If the one you have tried made you feel terrible try something else. I did better on the gels than the patches. But I can only tolerate a really low dose. It took me a long time to realise this. I would advise atarting on the lowest dose possible which is a 25 patch or one pump of gel and go from there. The other problem with HRT is that I think it triggered B12 and folate deficiency for me. Or it may have been menopause, who knows. However the GP treated the folate deficiency but the B12 wasn't low enough to treat. It was 240. I felt terrible. I would say I’m just keeping my head above water, but don’t feel great. I tried coming off HRT but within weeks was begging to go back on it again. Menopause has literally ruined me.
Thanks, this is useful information. Sorry you've had such a rough time. I'm feeling better now I stopped the hrt. I think my issues are to do with inflammation, especially in my sinuses. Literally a hot head. I'm doing my best to cut out sugar and eat good fat instead - Olive oil, Brazil nuts, quality meat.
I had a zombie day on Saturday, then perked up having had a distracting bargain hunt in my favourite junk shop and a really good day in the sun on Sunday, getting out in the countryside. It's so important to keep gently doing things. Just to keep your guts moving for one.
HRT is not the solution many would have you believe and often causes more issues than it solves. This was the case for me and I felt so ill on even the lowest prescribed dose. (I'd recommend checking an online forum called menopause matters)
I battled my GPs wanting to treat me for menopause and/or depression for years. Eventually due to my failing health I took matters into my own hands.
The solution lay in me realising there wasn't just one issue needing to be fixed. Turns out my ferritin had been bumping along the bottom for years (GP said 'in range'). So with B12 injections, iron, vit D and multivit supplements and 1/6 of the lowest prescribed dose of HRT, I'm finally back on track and walking on my beloved fells again.
That's my long way round to say 'You do you'. You know what works and what doesn't.
I mean that I decided if I was to get well I couldn't depend on my GP for the answers. I gained access to my medical records, ordered some private blood tests, then researched the findings and started on supplements. I also took a decision to start myself on the lowest possible dose of HRT and work upwards, rather than the approach of the medical profession, which was to jump in with a significant dose.
Thanks Holly, but you'll find that many people on here are here purely because they've had to do the same and it was sink or swim. I hope you're finding everyone's input helpful, but do have the confidence to take control of your own treatment if what you're receiving isn't working.
Hi Holly,My take is we have an autoimmune condition. The immune system is very connected to our guts and that's something we do have control over, by what we eat. This isn't just about getting enough B12 in. As we heal, we want the best possible ingredients to be rebuilt with. We're made from fat and protein, sugar (including alcohol) is pretty toxic to the system, gut bacteria need cultivation with good vegetables to process vitamins and minerals. Sunshine is essential. I do think we are designed to be in water a fair bit. Gentle exercise keeps guts and lymphatic system moving.
Treat yourself to some top quality extra virgin olive oil for starters.
Miraculously the blood test has turned up! What am I looking for, to know if they did do an antibody test? I have a fun evening going through what each thing means.
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