Please help, new to this !

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Hi, do any off you know if a cortisol level of 249 is normal range.

Endo consultant just sent me a letter saying "cortisol level was 249 which could be normal for me but would like to do a synacthen test to see in more detail. "

Tried to look up levels but he didnt put what the 249 was, measurement wise .

I have been very ill since stopping monthly IV ,IM Steroids for 2 years and suddenly stopped in jan, no one said you couldnt just stop high doses of Steriods So Endo consultant thinks it could be a drug induced Adrenal problem.

Lost 4stone since April and now still losing 1lb a day , cant eat , vomiting, stomach cramps, constant nausea, extreme tiredness and an emotional wreck 😢 !!

Have got worse this week and lost another 7lbs . Just need help and GP is useless and said ur so complicated I wouldnt want to try and help you, needs to be consultant treatment. Like they are just going to answer a call from me !

Was diagonosed with hyperthyroid too 2mths ago but levels normal at the mo with no drugs anymore.

I suffer with Lupus & sjogreons syndrome last 3 years too,but never had symtoms like this before.

Please help ,from someone who is losing it x

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  • Posted

    Hi Melissa I have only just joined this forum too.

    I was diagnosed with pituitary disease and secondary adrenal insufficiency three years ago.

    After a lot of blood tests etc.. My journey has been pretty horrendous up to this point.

    However...!! I am aware that normal cortisol levels are between 500-900. Mine when I was diagnosed was around 370 after the short synathacen test. This was low enough for my endocrinologist to put me on 30mg of steroids every day and probably now for life.

    Since my diagnosis I have had about 5 of these tests. One was 0 (yes I felt very very ill!!) it went back up to 370 ish but my last one has dropped to 150 😖 .

    If you are talking about the same level and test which I believe you are, then I would say they are way too low. Press for tests and answers, I would imagine you feel pretty rough right now? If you are suffering the same condition as myself then a proper diagnosis and treatment is imperative.

    I don't want to scare you, just looking out for you, but I am sure you have heard of Adrenal Crisis? I am not medically trained but do now know a lot about my condition, hope this helps??

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    • Posted

      Thankyou so much for your reply Lisa. Thanks for the info , no one seems to know anything about this subject.

      Just have to wait for a date for the synacthen test now. Hope its soon . Been so ill since around March. Lost over 4stone.

      Did you have aching body , im constantly tired , severe stomach cramps, constant nausea , no appetite.

      Bad weight loss! Emotional mess too.

      Started getting bad headaches now as well and have never suffered with headaches.

      Taking 2 different anti-sickness tablets both 3x daily.

      Taking Paracetamol, Codeine and oramorph for the terrible stomach cramps when they get very bad.

      So hope to get date from this speacialist for this next test soon as im on an emotional rollercoster, with the sickness and pain . Just a mess !!

      Ihope you get your cortisol to stay at a good level soon, as going up and down cant be helping with your emotional wellbeing never mind your health.

      Good luck lisa , keep me updated with how you get on.

      Thankyou

      Mellisa

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    • Posted

      Oh Melissa I really feel for you.

      Mine started 3 yrs ago. My symptoms were, fatigued beyond words. Body felt so weak. Fell asleep everywhere. Was freezing cold wearing layers upon layers when everyone else was in T-Shirts. Confused, brain fog, anxiety, generally feeling AWFUL. Was so difficult to concentrate and I was at Uni doing a degree (still don't know how I did it). Lost a stone and a half in weeks. Had no appetite only for sweet things (salty is what ur supposed to crave?) crying, depressed.

      Took 6 months to diagnose me they thought it was psycho-somatic!! All blood tests kept coming back normal? Eventually after my husband marched to my doctors surgery demanding something be done was I then taken to see my Endocrinologist. After my blood test in the morning my phone rang, the doctor first then Endocrinologist. I was super important now!!! Steroids, emergency card, steroid card, needles and hydrocortisone i have to carry with me everywhere in case I become unconscious and need instant cortisol or I could go into an Adrenal Crisis. Also I wear an emergency bracelet.

      Melissa, I have to say that after reading your post I'm concerned about you. You sound very very ill to me. PLEASE go back to you doctor and insist they speed this up.

      Call The Pituitary Foundation (google it) call their helpline, I am sure they would agree with me that your symptoms need to be taken seriously NOW. Thinking of you.

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    • Posted

      Hi lisa,

      Thought I would update you . I was admitted into hospital today due to severe chest pains , palpatations , stomach pain , nausea and weak joints and muscles, headaches blurred vision etc just generally very unwell.

      They are doing full thyroid test and doing the synacthen test in the morning .

      So once they come back then my Endo consultant can decide what the next step is.

      Also see the Rhuematology consultant and decide whether to go back on my auto immune medication as my white cell count keeps coming back low.

      I hope they get an answer soon. I just cant go on feeling this ill.

      Will keep you updated.

      Hope your doing well ?

      Mellisa

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    • Posted

      Hi Mellisa how are you? I am not at all surprised that you ended up in hospital, your symptoms sounded horrific.

      What have been your results? I so so hope you have been given some answers.

      I do know that pituitary disease can be brought on by long use steroids that get stopped. Were you on yours for long? I am thinking you might need a MRI on your pituitary to rule out a tumour (don't panic these are 90% non-cancerous and easily treated) if it isn't a tumour, and your pituitary is diseased it is possible your ATCH hormone isn't reaching your adrenal glands this then doesn't allow your adrenals to secrete the most important hormone in your body cortisol. Hence, low cortisol output equals feeling very very very ill. This all put together is called Pituitary disease and hypoadrenalism (secondary adrenal insufficiency). This is what i have. I have to take 10mg hydrocortisone in the morning 5mg at lunchtime and 5mg at 4.30pm without this medication I would eventually and slowly become very ill and hit an adrenal crisis. I really hope you have some answers soon. Keep me posted, thinking of you.

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