21 years later

Today, after 21 years of chronic fatigue, misdiagnoses, what must be hundreds of blood tests, CBT, psychiatry, accusations of malingering, ‘diagnoses’ of psychosomatic symptoms, bullying, accusations of laziness, years of self-flagellation and self-doubt, I was finally given some meaningful information which would explain pretty much all of it.

After an ongoing rash around my mouth worsened over Christmas/New Year, I took myself to my new London-based GP (quiet, unassuming, about 12 years old) to ask for a referral to an immunologist. The GP ummed and said he didn’t feel that “at this stage” it was appropriate to refer me to a specialist. He didn’t have any alternative suggestions, it was simply a ‘compu’ahhh sez no’ situation. I looked at him for a few seconds and told him that I’d been dealing with these symptoms for over twenty years, and that if I walked out of that room without any action being taken, I’d be extremely unhappy.  Stared at him a bit longer and he said “Okay, well let’s do a referral then.”  #me1GP0  Just to make sure he didn’t have bad dreams I then reassured him that I had private health insurance. (Maybe I should have led with that… Nah.)

So that happened. Went to see the immunologist. I’ll skip over the consultation details for now, except to say that he told me what his suspicions were and encouraged me to go off and Google it all when I got home. He wrote it all down for me so I didn’t have to remember it… He then sent me off to donate about half a pint of blood for testing, and then I had to come back in a month for the results.

Today, that month was up, and I went back to see him. Results were in… Suspicions confirmed, plus a couple of little surprises just for [figurative] shits and giggles.  I have something called Histamine Intolerance (‘HIT’) due to low levels of diamine oxydase (DAO).  Never heard of it? Neither had I…  Thought histamines were something to do with hayfever? Well sort of… It’s the chemical your body produces when you have an allergic reaction to something. In fact it’s the histamine which makes your eyes go itchy, makes your nose run and makes you sneeze when you have hayfever. But did you know that histamine is present in food? Diamine oxydase is the enzyme which our body uses to break down and eliminate histamine, so if you don’t have enough DAO in your body, you can’t break down the histamines in food, and end up having similar symptoms to an allergic reaction. This can be mild or severe, depending on your body’s make up. Want to know the details?  Go and check it out from a source which knows what it’s going on about.

I also have a severe Vitamin D deficiency (the consultant’s actual words were that my Vitamin D levels are “hopelessly low”), a possible problem with the part of my immune system which fights off respiratory infections such as pneumonia. The bonus prize today was  that the consultant also wants me to see a cardiologist, to double check that I don’t have something called postular tachycardia. I’m not worried about this, as I’m pretty sure he’s just ruling it out, but I certainly wasn’t expecting to hear that…

So… tomorrow… I will go to my rubbish GP and ask for antihistamines and Vitamin D tablets, and I will begin the low histamine diet. This involves, among other things, giving up (for 2 months at least) alcohol, chocolate, wheat, processed meats, cheese, anything with vinegar or soy sauce in it, tomatoes in all forms, fish in all forms and… well… that’s enough for now right?  Yes, I said alcohol. You heard it.

I think, to make this all more manageable, I’m going to document my thoughts, feelings and symptoms over the next couple of months. Partly for my own benefit but also partly for the benefit of other HIT sufferers… Who knows. I haven’t used this blog for ages but I don’t want it to become ‘A HIT blog’…  But still, might be useful, or might just be a handy ranting opportunity for me 😉  Either way, thanks for reading and feel free to comment or ask questions.

2 thoughts on “21 years later

  1. I’ve been on the receiving end of that stare. I love it 🙂

    Really glad to hear that you have progress at last but the diet looks tough. And you really should document your progress.

    Hope it goes well for you x

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