My life is spiralling down and down and out of my control.
My GP and now neurologist have washed there hands of me an I think they think I am crazy. I have shown them the new guidelines from last year and neither are prepared to follow them. The neurologist last week (unbeknownst to me when I was getting other blood tests) retook my b12 and was "unmeasurable" ie off the chart (I had 9 loading doses of hydroxocobalamin so no wonder, hence why I didn't authorise it). I am now "cured" and it has been in my head. They refuse to diagnose on original bloods (in grey zone but dropped by 180 in 2 weeks) or despite a massive improvement in my symptoms and treating on clinical symptoms. I am living in hell.
I tested my kids privately, my 15 year old is in the "grey zone" 382 (250-725 range) ferritin 22.7 (20-200) way too low if you ask me.
My 7 year old is even more worrying, she is showing signs of neurological issues. Pains/weakness in legs, numbness, fatigue (all unprompted). Long term issues with chronic constipation but never has a firmed stool as on laxatives. Ferritin 17.5 B12 234 - Drs notes said this was not severely deficient by "insufficient" and should be investigated further. Her folate is also elevated at 43.13 (10.4-42.4) guidelines state that "true cobalamin deficiency can show a normal or elevated folate".
We don't eat dairy as I don't like it and we have hardly any B12 rich foods. My ex is a nightmare as he is a doctor and I haven't said what's wrong and he says I need to get a diagnosis.
I have been in touch with PAS and b12d.org who have been amazing. I have some methylcobalamin with I started today.
Does anyone have a similar story? I AM DESPERATE to get a diagnosis. I am prepared to see someone privately but it seems that haematologists also seem to ignore the guidelines.
I am prepared to travel anywhere in the UK - I am in Glasgow.
Get this - my dry here are REFUSING to follow the guidelines as they are for THE UK and I am in Scotland. err... Isn't Scotland still in the UK? What the .... (Fill in the blanks) Apologies for the offensive language...
I cannot trust Drs any more and have zero respect for my GP now. I am a practice nurse and my boss thinks it's in my head. I am at risk of loosing my job. How can I treat patients when I am so unwell? I need to well to support my kids, I have a mortgage to pay. I want to live again. The psychological toll is unbearable. What kind of world is this? This is 2015 for God's sake! I am so worried about my girls.
I am seriously worried about my mental health.
Please, please help.