Hi everyone, I'm back after my hospital appointment with the Consultant Haematologist. Before I went to see him, the nurse took 2 tubes of blood from me. I've a lovely bruise there now.
When I went to see him, he called me a "Health Worrier." and told me that there was a couple of abnormal results but everything was ok. I explained that they were done shortly after my B12 injection and he said that it would make no difference to the results. I said what about the bleeding and the bruising, he just said everyone bleeds and gets bruises. He is doing some in-depth tests on my bloods but reckons they will come back ok. He said he will sent me a copy in the post (It'll take 1 - 2 wks).
He was an older doctor (about 60+), and left me feeling like a fraud. I told him about how I'm a member of the PA Society and how I get help from people on it as I was left in the dark when I was diagnosed last year. He told me to stop going on the forum for help as I should only ask the docs for help.
I said I'll wait for my results, said bye and walked out.
I was told for 20+ yrs that there was nothing wrong with my back, had MRI scan and guess what I was right. I'm waiting for injections for my back and they are prescribing stronger painkillers. They can't do anything as my bones are rigid as I've suffered for yrs.
Sorry for my rant but I was made to look like a fraud, also I've never been called a "Health Worrier. " before. I'm thinking of getting my bloods done privately but I'll have to save up. 😠😠
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Bentleyboo
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Oh dear Bentlyboo...how terrible for...I bet you feel absolutely destroyed!
And of course the B12 will make a difference to your results...as we all know, too well. Just shows the level of knowledge this consultant has!
I'm also wondering how 'everything [can be] okay' if there were 'a couple of abnormal results'. And idea what they were?
Here's something I shout every so often....WHAT ARE THESE PEOPLE PLAYING AT!
And how dismissive calling you a 'health worrier'. All of us here are health worriers (but not in the way he means)! We have to worry about ourselves BEACUSE NOBODY ELSE DOES! It's the worry that drives us on, looking for ways to get better.
And I take issue with what he says about 'sites like this'!
Before I came here I'd been totally alone with this things for many years and was struggling to find ways to help myself. If it were not for this place, I dread to think what my situation would be now.
And what a joyful delight it would be if we could ask doctors for help....
Just a thought....I recall reading that one members complained to the patients complaint group at the hospital and was immediately offered another appointment with a different consultant. Another had a similar result by complaining to NHS England. Your are quite within your rights to ask for a second opinion.
I'm so sorry that you were made to look like a fraud...a thing I know only too well!
I sincerely hope that something turns up in the blood results that force him to eat his words (or swallow his own blood samples!)!
Really, I just want to give you a hug, tell you that you're not a fraud, and hope that this episode eventually becomes something you can consign to the 'rubbish medic bin'.
Hi Bentleyboo I don't know what to say but thought you needed some quick support.
We are all health worriers when it's our good health which is at stake & quite rightly so. He would be too. The tide will turn albeit slowly, as there are more and more of us pushing for proper treatment & respect for our condition. You were not treated with dignity or respect which is what they are supposed to practice.
I'm thinking of going privately for tests but like you will have to save up. I'm seeing my GP again next week to see what happens next and this appointment will decide me what to do.
Keep strong we will get there and the PAS forum is a great place to belong to.
Bentleyboo - please don't let him get to you. Unfortunately there are a lot of doctors out there - particularly amongst specialists - who really have no idea how to interact with people let alone how to interact with patients. Its not ideal but the reality is that he is the 'fraud' and not you. He may have some of the technical knowledge but he obviously doesn't know how to build trust and a rapport with his patients and that is an essential skill to being a good doctor. You have good reason not to trust the doctors and attitudes of 'doctor knows best' really aren't the way to change that. It should be obvious to anyone with an ounce of common sense that telling you you are a health-worrier and that you shouldn't listen to anyone but a doctor is going to put your back up and is not going to result in a healthy relationship ... and is likely to have you doubting the advice that he gives you.
The difference with the people on the forums and gps/consultants is the fact they are actually living and trying to deal/cope with the conditions which have brought them and other people to the forum in the first place, to look for help and advice. None of us is technically medically qualified to give diagnosis nor treatment, only offer suggestions as to what might work as that is how each of us has learnt.
It has to be said i have learnt a great deal and been given the support which has helped me understand and help myself. This is also within other forums, and lets face it nhs choices points people to the health unlocked forum anyway!
Ask questions, get answers, advice and support from hundreds of condition and wellness communities from organizations you know and trust
That was lifted from the health unlocked site which the nhs choices website recommends.
The people on those communities are fellow sufferers, not drs, gps or consultants.
I have dipped in and out of quite a few and i cant say that any of the ones i have been to have anyone of real authority to offer medical advice.
Its like getting a cold, when the symptoms become intolerable we go the chemist to get something to ease the symptoms. Same with b12. Lets face it, none of us want to feel as bad as we do, and some are so much more debilitated by the condition, and if the medical profession isnt finding another cause for the symptoms then naturally we are going to hanker after something which we have found gives us some relief from those symptoms(even if it is placebo!).
My personal opinion is gps know a little about lots of things, but we on here have, by necessity, learnt a lot about one little thing.
I once went to see a haematologist who knew absolutely nothing about P.A. And was also dismissive of me. He even told me that he wasn't even interested in P.A. as it was such a simple condition ! Honestly I have had more help from people on this forum than I have had from anyone in the medical profession. I know that at sometime in the none too distant future , Martyn Hooper's efforts on our behalf will bear fruit. And then all those b...... Will have to eat their words. I hope that I live to see that day .
So sorry to hear about your experience but sadly not particularly surprised as I've had several unpleasant experiences with doctors while trying to find out what is wrong with me.
My tip is that doctors are sometimes more pleasant if you have someone with you (a witness).
Is it worth talking to PAS about your experience or to the person who runs the B12 deficiency Info website?
Yes, I'm another person who has experienced this rude and dismissive attitude. Wish we could collate all these messages and send them to PHE or the GMC. Although, it wouldn't make any difference would it? We need a celebrity who has PA or low b12 to be a spokesperson for us. Wish I knew a journalist who could be interested in the way patients are treated.
If it wasn't for forums like this I wouldn't have any sort of life. I would be in a wheelchair with my brain vegetating.
Look after yourself and put that ignorant doctor out of your mind, he's not worth thinking about. Do what you need to do to feel better.
I totally get how you feel as I feel exactly the same, I was found to be iron deficient around 3 yrs ago now and have had one iron infusion about a year ago other than that no treatment, I've had everything from nurses telling me they don't know how I am functioning to consultants telling me im worrying over nothing and im a worry wart.
I had my bladder removed and now have a urostomy, I've also had a bout of cancer so I am actually pretty laid back and don't tend to panic unnecessarily. At the minute I have a consultant and a GP tell me I need an urgent iron infusion but for the past 3 months have been arguing like children over who is responsible to give me the infusion.
So don't feel like you're on your own I feel your pain trust me!! I hope you get a resolution soon I am currently writing a very long complaint to my health trust.
Hello Bex8216. A three month wait for an iron infusion is a joke. Or it would be if it wasn't so vitally damaging for you!
It's a sad comment on the NHS when funding issues cause different elements of the health service to 'fight like children' at the expense of the people they are supposed to be helping.
I really hope it's sorted out soon and you get the treatment you need.
Thanks buddy its been 3 years altogether that i have been fighting for iron infusions it took all that time to get anyone to agree with me that i needed one now i just need someone to do the paperwork! The only time i got one was about 9 months ago when i had urosepsis and they gave me an infusion while i was in hospital
Anytime! I myself very rarely cry over anything but i have been bursting into tears just randomly at the minute out of stress/frustration but places like this make you feel like you arent alone anytime you need a rant my ears are yours lol
Hi Bentleyboo the problem with that man's advice "He told me to stop going on the forum for help as I should only ask the docs for help" is finding a doctor who actually has B12D or P.A. and can understand just how debilitating a condition they are and the struggles we "poor deficits" have to go through to get the right treatment.
I've posted this before but feel it worth repeating about this "Silent Killer".
Pernicious - adjective
having a harmful effect, especially in a gradual or subtle way.
We are not seeking B12 injections for the fun of it. After 45 years and over 600 injections I feel a bit like a pincushion but I think it's worth it to stay "clivealive" @ 75
I do hope the test results are useful and wish you well.
Honestly, I despair. I know that isn't very helpful. But I've experienced some of these attitudes even from good doctors and know people who have suffered profoundly due to this attitude.
I wonder if we have all misunderstood the primary purpose of the medical profession/health service. I'm beginning to think it is designed primarily for emergency and terminal illness, and mass vaccination. That's perhaps why, with anything less, doctors will often take the line 'you're not really ill, or you are 'normal'.' On top of that there are all the funding issues and shortages of trained medical professionals we are constantly being made aware of (and even made to feel guilty about).
What we are all trying to do is be well and get on with our lives. To get a correct diagnosis and treatment to prevent the early stages of our illness from progressing. That is a rational response to illness, not a mental health issue.
What is so insulting is that virtually nobody would put themselves through the difficulties and challenges of the medical system just because they were suffering health anxiety with no physical cause.
I once found a website/blog in which doctors bemoaned the fact that patients were seeking help from complementary practitioners, whom they derided as purveyors of "woo". But I'm thinking that, like me at one point, people often don't have a choice. If the medical profession refuses to take patients seriously and treat them accordingly, where can they go for help? It isn't an either/or situation.
What a disgusting way to be treated by a "health professional "! If we don't worry about our health who will? These supposedly "experts" in their field need to be better educated. I wonder if pernicious anaemia was even covered as a subject when he was studying?
I know that forums like these help, because the contributors are real people who have suffered the same symptoms and have found what works for them.
A shame that you had to suffer an appointment like that. Please keep fighting for your own health, like the rest of us. MariLiz
You have every right to have a rant! I once went to a cardiologist who declare I was fit to back & get on with my housework! I had been the MD of my own company for 18 years! Unfortunately these doctors get us when we are feeling poorly & vulnerable but when you get yourself together or the tests prove the doc - complain. Hope things work out well for you.
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