Adrenal problem - medical bracelet info

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Hi, I had a left adrenalectomy back in May and have been on hydrocortisone tablets ever since, gradually reducing. My left adrenal gland was removed because I had a benign tumour in there. This adrenal gland had been creating way too much cortisol and the right adrenal gland had shut down. Ive effectively gone from Cushings Syndrome to Addisons without all the side effects really. The tumour was discovered from an MRI resulting from investigations regarding high blood pressure. Anyway, the upshot is that my cortisol levels are now struggling to increase so it looks like I will be on the hydrocortisone for some time yet and I have been advised to wear a medical alert bracelet incase of an emergency. I have looked at these bracelets but I'm not sure what to have engraved on the disc. Does anyone else have one of these and if so, what do you say on yours please?

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  • Posted

    Hi. My daughter had a double adrenalectomy last June due to bilateral pheochromocytoma so is consequently left with Addison's. I was also unsure what to put on her band but have decided to simply put Addison's! I have asked paramedics etc whenever she has had a crisis if they take notice or know what this is and they have assured me this is fine.. U could also put adrenal indifitiency or failure.

    Hope this is some help although I know it is difficult!

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    • Posted

      Thank you for this.  How old is your daughter? Sounds like she has had a tough time and I wish her the very best for the future. I was also concerned that medical people would not be sure if I put Addison's on it as so many of them at the hospital query with me what an adrenalectomy is!!!!
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  • Posted

    Hi, I am sorry your other gland isn't bucking up yet. I too had my op in early May and I am lucky that my other gland is now working for 2. I hope yours does soon.  The histology showed hyperplasia, which is genetic and I have followed all through my life exactly what it says. I wonder if that's why my other has picked up quickly and hope that the other gland that is left doesn't start over producing, which I believe is possible. If the symptoms start coming back, at least I know that it means that I will have to have the other one removed.
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    • Posted

      I didnt realise that the remaining adrenal gland could start over producing. Is this a connection with hyperplasia? How often are you having your cortisol levels checked pleae? I have had three tests and my levels were 18 nmol then went up to 54 nmol (so I got all excited that things were heading in the right direction) and the last one was back down to 15 nmol so I'm disappointed that it clearly is going to take a lot longer for my levels to get up to 250+ which is required. I ended up getting a panic phone call at 2am by my local doctor telling me to get to the emergency department at the hospital as soon as possible and that was when my level was at 18. They hadnt written that I had been starved of hydrocortisone the previous 12 hours in readiness for level testing and I had since had a double dose of steroids to bring me back to a safer level! Good to now they're on the case!

      Disappointingly I have awful achy joints, fingers, hands, elbows and feet. They seem to think that my high cortisol levels may have been hiding a rheumatic condition. I am being tested for this. I'm hoping that it is not the case and a side effect of reducing steroids. I also have a hernia under one of the three holes where the surgeon went in to carry out the keyhole surgery so that is getting bigger too!!

      Have you been having any side effects with the steroids at all?

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  • Posted

    Hi, Yes, it is a connection with hyperplasia that quite often you need both glands removed, as the other might start over producing.  I have only had one test since my op, but that isn't right, it seems that you should be tested on a regular basis.  I had a similar problem to you once, when the doctor said that my cortisol was normal, when in fact it wasn't as I had stopped the hydrocortisone!  I haven't had any side effects with the hydrocortisone, except that now I am off it my joint pain has gone a lot worse.  I was actually diagnosed with rheumatoid arthritis before all this started, but obviously, it's worse now my cortisol is normal, whereas before it was high, which was doing good for the arthritis.  So, the op has cured one thing but made my arthritis worse.  I had to cancel my appointment to see the rheumatologist due to my husband's health, as he has terminal cancer which spread to his brain and he lost the use of his right arm and leg.  However, he has been put on steroids to reduce the swelling in his brain and is much better.  The ridiculous thing is that when I cancelled the rheumatologist they said that the next appointment would be November!  Whilst I was having the hyperplasia problems he wanted me to try and new drug, but I didn't want the complication of that until the hyperplasia was sorted out.  I hope that you haven't got rheumatoid arthritis but if you have there are newer drugs that can slow it down these days.  Good luck.
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    • Posted

      Hi Sheltie, since our last communication a couple of months ago I have now had confirmation that my falling steroid levels have exposed what is now fully blown Rheumatoid Arthritis. They suspect that my high cortisol levels were masking the symptoms before and it was only because of the adrenalectomy and subsequent gradual reduction of hydrocortisone that it has come to light. I have been in horrendous joint pain all over my body but there is now light at the end of the tunnel and I wanted to share my experience with you. I was introduced by my rheumatologist to Hydroxychloroquine about 4 weeks ago. It takes from three weeks to get into your system and is at its best 12 weeks into your system and that is the level it will stay at. Well, within three weeks I was able to drive for ten minutes and get out and walk without pain. Its been bloody marvellous! I have also been put on to Naproxen daily as an anti inflammatory as my hands and feet have been swelling all along too so they have calmed down. At some stage the hydroxychloroquine will cease to work but hopefully that will be in years to come before I move to methotraxate. Life is so much better for me now. I hope this information is of some use to you. Good luck.
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  • Posted

    Hi Melanie

    My daughter has just turned 18 and was 16 when she was diagnosed. She has been through and awful time and as a mother it is hard to watch!

    We too have been told the cause is genetic and tests are still going on but as of yert they haven't found a link.

    She too suffers with achy joints especially in her legs, and feels sick on a daily basis. Do you suffer with this? The fatigue is also bad and I just hope this will get better as our knowledge grows.

    Its very interesting to hear of other peoples symptoms and if there us anything I can do to help her

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  • Posted

    Hi Melanie,

    I forgot to say that my husband is now not long of death. He has been taken into a hospice and is on morphine. It eventually spread to his brain and he lost the use of his right arm and leg. We were supposed to be referred for carers, but it never happened! Typical of the NHS these days. I have been struggling to look after him on my own for a few months now and then eventually he was taken into the hospice only just over a week ago. No wonder I am struggling to recover, as lifting him on my own didn't help my arthritis either.

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  • Posted

    Hi Melanie,

    I was diagnosed with Addison's 4 weeks ago. I just got my Medic Alert bracelet done. I have the following engraved:

    Adrenal Insufficiency

    Steroid Dependant

    Hope this helps!

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