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Good evening everyone. First off apologies for what might seem like a long post however I've had a few health issues which have been with me for about 18 months now and I dont seem to be any closer to getting a diagnosis as I was when this first started. I'm after help and advice as I seem to be stuck now and i'm all out of ideas.
About 18 months ago I was taking a long drive on holiday (about an 8 hour drive) - during the journey myself, partner and children were taking regular breaks and making sure we had plenty of food and drink on the way. When we eventually pulled up for some reason I was feeling really weak, and felt like if I got out of the car I would pass out quite quickly. The feeling I got was that feeling when your really hungry and really tired, perhaps low on blood sugar. I some how managed to survive this ordeal and for the duration of our holiday I kept having spells like this. There were two quite intense occasions during the week we were there where I felt like this. I had to get some food in me and it perked me up. The final day we were there we stopped off at a tourist attraction and I spent the entire 2 hours in a public toilet as I was struggling to not pass out. - When we finally got home I decided I would go to the doctors.
Ok so back to my symptoms. Since this first started I seem to get the following. I get the shakes EVERY day without fail and generally feel worse in the morning. Shakes and Nausea seem to always be together and the rest seem to be random.
- Shakes (all over my body) - These are internal however it feels like i'm shaking rather bad.
- Feeling weak
- Weight Gain
- Short Temper
In the past 18 months I've been back and forth to the GP and had countless blood tests taken (if anyone is interested in which tests then I am happy to post them with their results). Everything has come back as Satisfactory and after exhausting the GPs they finally referred me to the hospital to see an endocrinologist.
When I went to meet the endo she listened to all my symptoms and gave me a physical examination. She said that she wanted me to have a Short Synacthen test to test my adrenal functionality. - To my surprise this came back Abnormal. - This is the first test I've had where its actually come back like this. Everything else has been fine. It says that my level came back as the following "Serum ACTH level 93.7 ng/L" - Which makes no sense to me tbh. If anyone can give me an explanation of this level then I would be most grateful.
Anyway I was quite happy to see that this had come back and I was thinking it proves that im not making any of this up. I had a follow up "telephone appointment" with my endo and she basically said that it shows that I've got a high level of Cortisol in my blood. The only way to lower this is for me to take up Yoga, breathing exercises and perhaps do some light cardio such as swimming. - Thats it. She wanted to discharge me. I said i want another follow up in a months time to see how im getting on by doing this and luckily she agreed. I kind of feel like i've been fobbed off tbh. Here i am feeling rubbish every day. I've tried to alter my diet, excercise and sleep routine and nothing has helped.
Everyday I get the same symptoms. Mostly I get the shakes and nausea. I have had lots of other tests such as blood glucose, thyroid, vitamin deficiency, 24 hour urine sample and they have all come back as fine.
Im sort of lost as what I can do. I've put this in here as after googling everything it feels like this forum might be the right place. Anyone with cushings have you had the same sort of symptoms etc? Is there anything else I can ask my endo to test? I hope someone sees this and thinks (that was me).
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