OK - so I have had my rheumatology appointment and gallons of blood has been taken. I have been offered Nifedipine for the winter. She told me about the limitations and that it might cause , YES!! You've guessed it: HEADACHES. I really don't need any more headaches and I think it would f****** stupid to take a medication that causes headaches after finally being on another drug that actually gets rid of them. Still no further with the aspirin conundrum so I think she is going to husrry the haematology referral along.
However, prior to this appointment I had thyroid ( normal ) etc checked and full blood count at GP. As usual I asked for a print out. This time the haemoglobon mch was higher but bang on the upper limit and just to shake things up a bit my white blood cell count was low. Platelets even lower than before.
Anyway, I would like to see the results of the rheumatology bloods but our health board states quite bluntly that you can't have them and that 'if anything is wrong you'll be told'. !!!!! Except of course when you test positive for ANA and no one bothers to tell you.
Does anyone know how to go about getting access to hospital blood test results? There seems to be no joined up thinking betwenn hospital and GP, both are really good (apart from hospital appointment cancellations) but they don't seem to bother looking for each others results - even though it is relevant.
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Brychni
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Hi Brychni, this seems like a lottery doesn't it. The hospital where I see the rheumatologist is fully digital so I have an app on my phone with all my results, conversations with clinicians and appointments. It's brilliant. However when I have blood taken requested by my gp even though it's taken at the same local clinic, there seems to be no join up even though I want him to see my hospital results, I have to download from my phone, scan and email to him for the staff to scan to his records.Trouble is when the nhs talks about joining records up, people campaign to say they don't want it (privacy) so it doesn't happen.
Hi. I can see my gp monthly dmards bloods through patient access which I had to apply for. Kellgren centre has the MYMFT app. I can see my Rheumatologist bloods and I get an email alert everytime a result appears. X
Hi I was once prescribed Nifedipine but instead I opted to improve my circulation by exercise taken up an exercise regime. I did not like the side effects swollen ankles and sluggishness from Nifedipine. Doing yoga Pilates and a keep fit class. Have never looked back. No Nifedipine for me! Mind you everyone is different. Have been diagnosed with lupus 30 years ago. Managed my symptoms with diet. My lupus has been under control for 2 years now and have weaned myself from Hydroxychloquine too. I’m not suggesting you do the same but just sharing my journey. I have an aversion for drugs!
Hi there! I always get my blood tests results and imaging results via a "subject access request" to the hospital. if you cannot see mention of obtaining your results on the hospital website, contact their PALS who should help you. you will have to complete a form and provide ID; it can take anything from 1 to 4 weeks to get your information but of course its quicker if you can send and receive via email. I've also got clinical notes this way, and overall its extreemly helpful, especially if you are facing a long wait for the next appointment. Often its illuminating!
Although I have patient accounts for 2 hospitals, neither post test results on them, which is disappointing. all they do is show appointment letters.
I wish I could see my hospital notes and blood test results too! They always take so many samples of blood that I'm curious what they're testing for, as well as the results.
I have the NHS app and I can see blood test results the GP has requested and notes from appointments, but there's nothing or no indication how to get that to connect to the hospital's system. I Googled it a while ago and it does seem to be dependent on where you live, but maybe it's something they'll eventually roll out everywhere. My NHS app only seems to show certain appointments and has me still on waiting lists where I've been seen, so it does seem a little haphazard (at least where I live anyway).
With my previous rheumatologist I asked for blood test results and they posted a print-out to me (although not all the results). My current one I trust a lot more, so I'm not quite as suspicious they're not telling me things.
Hi Jane - I inject myself once a month with Ajovy (fremanezumab) which is a biologic. I'm sorry you are suffering with migraines and headaches. In my case they have seriously impacted my life and I've only really been relatively free of them for the past 2 and a bit years. Mine are severe and completely disable me ususally with non stop violent vomiting sometimes for days. For a while before starting Ajovy, they morphed into cluster headaches: I didn't think it could get any worse but cluster headaches are another level. They would be on and off for weeks. I've been hospitalised 3 thimes.
I still get them occsionally but they are easier to deal with and usually go quite quickly using meds that before Ajovy were often no longer effective. So for during an attack I take sumatriptans in the form of epipen style injection, tablets or a zolmitriptan nasal spray called Zomig. All of these are available through your GP, the Ajovy only through a headache/migraine/neurology clinic however, it is also available through the Migraine Clinic in London but it's very expensive. I considered it because we don't have a clinic in this health board and I was refused on funding grounds to attend the neurology clinic in the next health board but after the third hospital visit I was finally granted a phone appointment and prescription.
Thanks for your detailed reply.I haven't heard of Ajovy. I'm sorry to hear how much your life has been impacted.
I have been diagnosed with cluster headaches. These tend to last a long time, usually between 10 to 13 weeks. I get left sided headaches at other times that are usually manageable with paracetamol.
I have had tia's in the past so have not been put on sumatriptans, but last year was given propranolol. The problem with that was that it takes about a month to kick in and my INR kept rising (I have anti phospholipid syndrome as well as lupus)
I'm currently waiting for yet another neurology appointment but goodness knows when that will be.
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