I am a 30 year old woman from the UK. I've just been discharged from hospital after 7 weeks and am totally confused!! I'm wondering if anyone can give me any advice or their opinion. I am best starting from the begining. Heregoes......14 months ago I was pregnant with my third child, middle and last trimesters I felt generally unwell, inappropriate sweating of hands and above the mouth, this all came in episodes. My midwife done routine bloods but all levels were normal. These episodes would come and go and I was told it was probably due to my pregnancy. I delivered my daughter by c-section and 2 days later I took only what I can describe as a 'funny turn' and the above symptoms came back again. I was told this was probably hormonal, (now I think this was a hypoglycemic episode) . Most symptoms cleared but I generally felt very tired and groggy, and put this down to having 3 young children. These episodes came and went over the next few months until I experienced another 'funny turn'accompanied by dizziness and chest pain. An ambulance came who said I was tachycardic but my ecg was fine maybe i'd had a panic attack but took me to hospital anyway. I was investigated by a cardiologist who said my heart was fine and sent me home. I nearly collapsed twice walking out from the hospital!! That was 8 months ago and since I have never felt properly well or energetic but accepted this...my Dr could also find no reason my thyroid and other tests were fine. then she said I was folic acid and B12 deficient and had low iron stores. I began taking supplements but with no effect. A couple of weeks before i became really really unwell this time I began experiencing strange feelings of something over my body, this is hard to describe the only way I know how to is to compare it to a massive surge of adrenaline but released with no context. I then suffered on a few occasions severe palpatations with near faint. I was taken again into hospital as I nearly collapsed and had a heartrate of 135+. From this moment I became really unwell. I suffered hypogylcemic attacks, rapid heartbeat, severe nausea, dizziness, Cardiac T wave inversion, increased bp on standing, diarrrhea, funny turns, sweating of the hands, face and feet. chest pain, headaches, eyesight doesn't feel right, weakness, I have lost 2 stone. They carried out many blood tests - saying possible, diabetes, addisons, glandular, lymphnodes and many other reasons. I was diagnosed with coeliac disease at this time to - at one point all my symptoms were blamed on this!!! I had a treadmill test and there were no exaggerated heart rate increases, just the steady rise due to exercise. They said all tests came back normal - bloods, 24h urine x 5. I then had an MRI scan which found a 1cm growth on my adrenal gland. They thought they had found it - maybe a pheochromocytomaa.....but urine hormone test said otherwise, they were normal range levels - I have since bee ntold that a plasma free metanephrines is the test to diagnose this. The only other condition they feel I may have is Postural Orthostatic Tachycardia Syndrome..which they first said I could not possibly have because my symptoms are present whilst laying flat to!!! Then they said it was definately not POTS. My BP never drops, although I have seconds were I feel I am going to pass out. On my tilt test my heart rate went from 90 - 140. I did 40 minutes. My BP never dropped it rose but i still felt a bit light headed. I was really unwell on the day of my test-so unwell and weak I just needed to rest so I am unsure whether this would have effected the results or not. I had a dexamethasone suppression test which was normal - my morning cortisol was 25 i think they said. I was started on Fludrocortisone 100mcg twice a day with the explanation it would treat my adrenals if they were the cause and POTs if this was the cause!!! I feel 70% better, still having palpatations that can wake me from my sleep and these 'rush' feelings that leave me unwell and shaky for a day or so, no tachycardia, nausea, no severe weakness or symptoms on standing and no orthostatic intolerence. I have now came home and will be followed up. I do not know what to think or believe, and am devestated as I have a young family to support (3 girls age 1,2 and 7 - all with Hypermobile joints).
My doctors have said they are at the end of the road!!! Ive asked for autonomic testing...they said it's not worth it, Ive asked for pheochromocytoma testing (due to the finding of this tumour)...they said maybe and ive asked for a ACTH stimulation test for Addisons(which is what they primarily suspected). I hope I get answers. I do feel a lot better but have several hours of the day, usually around mid day were I feel really ill again. I am on my feet from 6am till early evening and show no symptoms of orthostatic intolerence even when i'm feeling awful, this is why I to am unsure of the suspicion of POTS, and then I think of the tumour (which also could cause all the symptoms I have) and am puzzled as the doctor says urine tests are negative for this!!! I do not know what to think. I also seen in my medical notes elevated creatinine levels (twice the normal limit) when I asked the dr he said it was now back to normal and that he wasn't looking for this. Surely something would cause this effect on my kidneys?
I'm sorry for the length of this but I really need some advice.
I also experience pain that comes and goes on the right side of my back over where the kidney sits and have a tender patch of skin on the front of my left side of my abdomen. I do not know which side the tumour is on when I asked they said they wern't sure!
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