Requiring help on recent tests and Consultants advice

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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
  • Fatigue
  • Lethargic
  • Weight Gain
  • Palpitations
  • Short Temper
  • Nausea

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).

Thanks.

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13 Replies

  • Posted

    hi Ow

    well the first part made me think

    have you been tested for type 1 or type 2 diabetes

    I would ask to be tested for Diabetes -both types

    before looking into Cushing's

    Report Reply
    • Posted

      Hi Courtney

      TBH i thought it was diabetes, however ive had a couple of HBA1C tests and a fasting glucose test which all showed up fine and i have also bought my own glucose monitor to self test and generally my readings are showing as fine. (Between 5 and 7 generally. I have had a few readings in the 3.x range but these are rare. What i have found is if i go a prolonged time with out eating then the shakes do start and sometimes it gets to a stage where i need to go lay down and it just sorts itself out most of the time. Are there other tests out there that could confirm if it is Diabetes or not?

      Report Reply
    • Posted

      I would check the health of your pancreas

      Since it is the pancreas which is the major organ affected by diabetes

      I only read the first part of your story

      where you would feel as if you are going to pass out

      but if carrying something a little sugary helps

      it definitely sounds like hypoglycemia

      I would ask the doctor about measuring

      insulin levels

      as type 1 diabetics do not produce insulin

      Report Reply
  • Posted

    sounds a bit like i was at the start, cushings can be slow and gradual or sudden .AT 18 months u could be early stage cushings sounds like a bit like i woz before i noticed my face puffing up and fuzzy hair grew literally all over me , ive now had this 9 years and had a hell of a time trying to get diagnosed cause mine seems to cyclic its only now im waiting for more tests cause some of the ones ive had are pointing to cushings . if you start noticing these things along with feeling really hyper at night and not sleeping cushings is where u need to look but again everyones different .Your dr is an ABSOLUTE IDIOT for telling you your cortisol was high and to just exercise . The thing is most endos have no clue whst to do with people with cushings , so u tend to get fobbed off , u need an expert who u may have to pay to see privately i cannot stress this enough dont waste your time with repeated referals from your dr to useless drs do your research and choose your own , people told me this and i thought it cant be that bad getting a decent dr but with cushings it really is . I dont want to alarm u the fact that somethings showing now with tests is a positive cause its giving you a clue to a diagnosis er go disgnosis=treatment , if u feel it may be cushings act on finding your own dr itll be the best advice i can give u if you are in the uk i can give you names . GOOD LUCK X

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  • Posted

    by the way

    I don't think it Cushing's

    but I could be wrong

    I might also ask for a liver panel

    to check the health of your liver

    Report Reply
    • Posted

      thanks Courtnay. Ive just rang the hospital and the endo consultsnt isnt in today. (sods law).

      i had to speak to her secretary who wasnt much help and kept telling me to speak to mu GP.

      She is going to get her to ring me monday regarding this though. I think you are right though and i dont think its cushings related.

      Report Reply
  • Posted

    hi Owl

    okay I just read the rest of your post this morning

    I will have to look up the levels of ACTH

    I got mine and it was measured differently

    97 does sound high

    so if it is high

    yes it could be something called Addison's Disease

    which actually fits with your other symptoms

    it sounds like you may have adrenal insuficiency

    this is actually very serious and can be life threatening

    if you have an adrenal crisis.

    ACTH is not cortisol

    with Addison's your ACTH is high

    but your cortisol is generally low

    I would bring this up with the endo immediately

    good luck

    Report Reply
    • Posted

      Ok thanks. I feel like im a nag at the doctors. The GPs i have dont seem to have a clue and im really disappointed with my consultants outcome.

      Ive just finished work and ive done nothing but shake all day. its a difficult situation to be in.

      Report Reply
  • Posted

    hi courtney makes a good point but if your cortisol is high one minute then low then normal u could have cyclic cushings which at times when your on a low u drop into adrenalin insifficiency aka addisons x thats why i thought could be cycling cushings as the symtoms u describe sound like adrenal insufficiency and it could be the lows you noticing . i think you will know yourself which fits u know your body best .

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  • Posted

    hi Owl

    I hope your Okay

    I'm quite worried about you

    because again , I just read you do have nausea

    This could definitely be Addison's Disease

    All I can say is hopefully , you are getting treatment for this

    the emergency treatment of this is

    Hydrocortisone- in case you have

    an adrenal crisis

    If you start to shake, please go to the hospital

    Report Reply

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