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What is the matter with me!

3 replies

OriginalTaste · 18/02/2020 13:38

[Sorry in advance if this turns into a long one!]

I am mid-30s, have IBD (controlled on infusions) but no other health problems (diagnosed at least!).

For the last 5 months I have been exhausted. I mean bone tired. No amount of sleep helps. If I exercise I am shattered a few hours later/the next day, rather than energised. I avoid cardio as my heart rate rockets and I can't catch my breath. I also sweat like a beast!

Because of my infusions I have regular blood tests, all within normal parameters, my thyroid check was fine, too. I've been to the GP three times with this and been dismissed with 'just being tired'. I had a hormone test a few years ago and two levels (I forget the names) were low. I was being tested for early menopause due to hot flashes etc., these results indicated it wasn't that. I mentioned this at my last GP visit and he said it wouldn't have been indicative as I was on the pill. I had come off it for a month leading up to the blood test, he just said ok and that he'd refer me to endocrinology. I felt fobbed off again and never received a referral - it hadn't happened.

I have been late for work (we're talking 2+ hours) almost daily the last two weeks, I am exhausted to the point I don't feel I'm in the room. Walking the dog zaps me of energy. I don't know where else to turn!

I am concerned it could be ME, but I just get ignored if I say that, and everything ends up blamed on my IBD (this is NOT my IBD playing up!).

Should I just be firm and really put my foot down with the GP, or switch practices?!

OP posts:
BlackInk · 18/02/2020 14:12

Have your iron, folate and B12 been tested? I think that IBD can inhibit absorption, and being low can cause bone-crushing exhaustion...

OriginalTaste · 18/02/2020 14:21

Well this is the thing. There's an online IBD Portal I use, and my ferritin levels on there were -1 (!) so I contacted the IBD nurses who said it was a glitch and the levels were fine.
Considering asking for a repeat test, and B12/folate too - thank you for that advice.
It's absolutely debilitating and I am so fed up of being dismissed as 'just tired'!

OP posts:
FeedMeChoc · 19/02/2020 20:24

You need to have your vitamin d, calcium, magnesium, folate, b12 and ferritin checked as a minimum.

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