So I speak to another GP at my practice yesterday after asking for a call in relation to daughters worsening fatigue, possible glossitis and blood results that I have already posted. I explain that my GP hasn't made an appointment and I am concerned about discussing and starting treatment. GP no:2 says 'I can't see anything on here about B12 injections, but your GP has noted that he will discuss a referral to CAMHS'
I actually couldn't speak for a minute. The mental health service? When I first began visiting my GP for symptoms I was 17 years old my daughter is 16. I remember my GP telling me that he thought I should go along to Open Door, the mental health hub in our borough. This "offer" of "treatment" has been a constant through my life along with anti depressants. The realisation that this is the "solution" again according to the GP has been shocking but not surprising. How dare he. My life literally flashed before my eyes and I know it will not be my daughters. No one is going to steal hers from her, and no one is going to steal any more of my sons. I have support and information now and I'm used to running on empty, I'm an expert.
I have two failed marriages, "what the hell is wrong with you?" Visits to GPs convinced both that I was "mad" after listening to doctors explaining that there was nothing in test results to show any problems. And M.E? Well that had a psychological base didn't it?
It's one thing to have messed with my life but it's quite another to try it with my kids. Get ready cos here I come!!
I'm so so sorry Lizzie, I can only imagine how awful you must feel but, having gone through nearly three years of anguish and frustration trying to get sufficient treatment for my sister and coming up against denial, negligence, obstruction and constant brick walls from GPs, psychiatrists, consultants and Health Minister, I have a good idea of how hard it can be......
You are obviously a fighter but you don't have to be alone and, as others have suggested, it would be a good idea, if you haven't already, to join the PAS for support and information, as well as posting here.
In the light of our family's own experiences, it is a very sad state of affairs but, if the stress is exacerbating your condition, I personally would keep sourcing my own supplies of B12 in injections and supplements to ensure being able to treat my family with sufficient B12 before any symptoms become even worse.
From my experience, the system is arranged so that GPs and their surgeries will fob you off until one particular symptom becomes overriding (in my sister's case - memory loss and psychiatric), use it as an excuse to deny iPA/B12 deficiency is the cause, stop injections and then only treat with drugs under mental health, which only makes things worse.
Surgeries are paid much more to treat mental health problems and very little for conditions such as PA/B12 deficiency, thyroid disease, etc - see chart at the bottom of the following link:
Hi Lizze2. I have to confess, I read your post over an hour ago and have had to go for a walk (more like an angry stomp) before I dared to say a few words. This is just so bad (to put it mildly). I am so sorry that this is happening to you and I'm exceedingly angry on your behalf 😡😡.
I was also misdiagnosed with ME, CFS and fibromyalgia vicariously over the years (they tried mental health issues too). And the trouble is that once a GP tags you with a label, they then become unable to see outside of their pre-conceived (often wrong) medical assumptions ('cause that's often all they are). The fact that your GP is now using a label applied to you and transferring it to your children is disgraceful beyond words.
I've re-read all your posts again and here are a few more thoughts:
With respect to your daughter's referral to CAMHS, I see that they have referred her once before and that she was found to be 'emotionally well' and diagnosed with Ehlers Danlos Type 3. So basically, they're simply doing the same again - and the outcome is likely to be the same! Hmm...
I know little about Ehlers Danlos but have had a quick read this morning. I note that there are NO tests to confirm this condition and that the diagnosis is based on medical history. So, given the diagnostic inadequacies of your medic's, I'm just wondering if this might be another misdiagnosis? Why - because many of the symptoms of the condition are also the symptoms of B12 deficiency and pernicious anaemia. The distinguishing factor would be joint dislocations and hypermobility, which are experienced in cases of Ehlers Danlos. So, if none of you have suffered these particular symptoms, then it could be another misdiagnosis. Just a thought and could of course be wrong 😀.
Your great great grandmother had PA. You don't say but has your GP EVER tested you and your children for it (anti IF antibodies). Autoimmune conditions do run in families and it's the first thing he should have done - all those years ago for you: certainly now, for all of you. And your macrocytic red blood cells are a dead give away. For any competent doctor.
Have you seen the B12deficiency.info website? This contains some very good information and also a draft letter to GP's that can be used and amended for,your particular needs. If you decide to write formally to your GP (as mentioned before), then you could use this to get you started. Also - Tracey Witty, the founder member, is an active campaigner and a patient advocate for all things B12 deficient. It might be worth emailing her to see if she has any advice and I think that there are occasions where she has intervened on the behalf of patients who are struggling to get treatment.
It might also be worth talking to Martyn Hooper, chair of the PAS (contact details on the PAS website). He may be able to offer some useful advice. Martyn has, on occasion, intervened on behalf of patients, especially where children are concerned. However, if my understanding is correct, he can only do so once and firm PA diagnosis has been given (anybody out there - please let me know if this is wrong 😀). Nevertheless, he would be a very good person to talk to.
Also - and I think I've said this before - if you choose to go down the formal complaint route, then people here can offer more advice. There is also an independent body who can review your medical case (or cases) and offer a view about diagnosis (the name of the body slips my mind at the moment - perhaps someone else will reply or, if you need it, ask and I'll look up the details for you).
There are two very good books that you might like to read: Sally M Pacholok and Jeffrey J Stewart, 'Could It Be B12 An Epidemic of Misdiagnoses' and Martyn Hooper's 'What You Need To Know About Pernicious Anaemia and Vitamin B12 Deficiency'. Both are excellent and will further arm you with knowledge for the fight ahead. Because unfortunately, as you know, it will be a fight. And probably quite a thought one.
I just love your last sentence...it shows that you're absolutely determined to follow this through and all here will applaud you for that. And I'm really sorry that all we can offer is words. Just please know that there are people here to support you and you can post as often as you like.
Take vary good care...and good luck with that MP next Friday 😀.
There is something very, very, very wrong with the medical profession in terms of patients getting diagnosed and treated for these kinds of conditions. The testing and diagnosis system is inadequate and/or we are not referred for the tests we should have, and on the basis of that, people are deemed not to have a physical condition but to have a mental health issue. This is despite the fact that they themselves know this is not the case, and it is evidently not the case. (Look at so-called "M.E." / "CFS")
I'm sorry you are experiencing this, Lizzie, and I have had similar experiences. Thank god we now have the internet and this group so we know we are not alone and that this is something affecting hundreds or thousands of people. I will never forget the terrible isolation and fear I felt years ago when I was extremely physically ill but was fobbed off by doctors as suffering from "stress". I have never got over it and I never will. Had my parents not taken me in I would not have survived. Although due to the doctor's misdiagnosis, they too believed I was "depressed".
I'm really struggling to understand how a GP can avoid testing for PA when patient is
1) Low in B12 and symptomatic for B12 deficiency and page 29 in BCSH Cobalamin and Folate Guidelines makes it clear that in this situation an IFA test should be carried out.
2) There are blood relatives with PA. See link below.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I am steaming!
Could One Have Pernicious Anemia/Functional B12 deficiency for decades without noticing?
Need help as mental health failing my son
