Hi I've never written a post before but find myself desperate and have been watching all the posts with increasing awareness that there are so many people out there suffering like me. I had radio iodine in 2011, a massive dose apparently and have never been right since. My levels drop to the floor or rocket. Currently on 125 mcg thyroxine (was 150 but recently reduced yet again). I sleep all the time have been diagnosed with severe fibromyalgia following extensive spinal and neck surgery, have ulcerative colitis since late 20's. (I'm 56), have a pituitary tumour (prolactinoma) and more recently was finally referred to uclh where on routine testing found to have a cortisol of 15 prior to seeing the consultant for my 1st appt. consultant called me in a panic telling me this was serious and I needed steroid replacement within hours and called my GP to prescribe. I went on HC for 3 months until I finally went for a short synacthen test at uclh which they said 2 weeks ago shows my adrenals are working but they are embarrassed as they don't know what's wrong with me as I feel so ill. They said maybe I've got ME but will repeat the test in 3 months but I must come off of the HC but should carry an injection kit and HC tablets 'in case I don't feel well'. I'm at my wits end as I feel so desperately unwell and feel that if I don't have primary Addison's should I also be tested for secondary Addison's give I have a pituitary tumour which hasn't been investigated since 2011 (I take quinigolide for this) and they are relying on a 2011 MRI of the tumour? Should they be repeating the MRI and testing me for secondary? I am at a complete loss and feel that they're really not sure given they are telling me to carry an emergency injection kit but are doing nothing else right now and I e just been left like this. Can anyone offer me any advice or experienced this? Thanks. Karen

10 Replies

  • Welcome to the forum, Karen.

    I'm sorry you're having such problems and feel so ill. If you post your thyroid results with the lab ref ranges (figures in brackets after the results) we'll advise whether you are optimally medicated.

    Other than knowing Prolactinomas are managed by medication or surgery I know little and don't know whether MRI follow up should be done.

    I believe one has to wean off steroids gradually, rather than stop at once. Perhaps they're taking you off HC to determine whether the Addison's is primary or secondary. The emergency kit will be in case you have an Addison's crisis.

    Google Addisons, Prolatinomas etc to find out more.

  • Hi Clutter. I'm hoping you received my reply with my blood results. There seemed to be a problem when I posted it. Can you let me know if it's been received. It was quite lengthy. Thanks once again. It's so reassuring to have found this forum. Karen

  • Karen, you need to use the orange Reply button and a notification is sent to the person you are responding too. I'll look at your results now.

  • Should I send my response with the blood results again to you?

  • Karen, no I found them and have responded.

  • Hi there thank you so much for replying. I never get given my blood results but I received the clinic letter yesterday from uclh sent to my GP. This is the letter that followed my short synacthen test. It does have blood results but doesn't have any in brackets (are these important)? Unfortunately I was still on 20mg (10 x 5 x 5) hydrocortisone at the time my bloods were done : TSH 3.38, T4 22.6, prolactin 62, Hb 151, Ferritin 45, folate 5.3, B12 470, Iron 23.5,HbA1c 5.6%. They are saying all is normal and cannot understand my previous low cortisol of 15. (I had been put on HC as an emergency measure 3 months before but not followed up for the short synacthen test for 3 months). This was done by phone by the consultant to my GP. There then followed an adrenal crisis whereby I ended up in a&he who increased my HC to 30 mg daily. When I was initially seen at uclh after the adrenal crisis my HC was reduced back down to 10x5x5 as I was advised I could develop Cushings if I stayed on such a high dose. I was told at that time my liver function wasn't right, my thyroid function was raised, my prolactin was raised, my cortisol dangerously low, I was deficient in Vit d. My GP then told me following a Dexter scan I have osteopenia which I am now being medicated for and I am now medicated for the Vit d deficiency.

    Although uclh are baffled by my initial low cortisol the short synacthen test showed my adrenals are working but they haven't tested me for secondary Addison's (I have a prolactinoma). Should I be pushing for this to be done as i am told to always carry HC and an emergency injection kit yet have been told to stop taking HC on a daily basis which I have done but my whole body is now racked in pain some two weeks after stopping it and I am sleeping all the time again and can't think straight most of the time apart from in the mornings then I begin to deteriorate.

    Thank you so much for offering to look at this as I am at a complete loss as my instincts tell me there's something terribly wrong but uclh are clearly not sure hence the advice to carry emergency HC. They say they'll repeat the short synacthen test in 3 months.

  • Karen, I'm really not knowledgeable about cortisol and Addisons as I mentioned above. It may be better to ask a new question about those. As I said, I was under the impression that HC should be weaned off, not stopped suddenly but may be wrong. If you're feeling very ill since stopping the HC I think you should speak to UCHL or your GP.

    TSH 3.38 is high but within normal range. Your FT4 is at the top of range which doesn't indicate thyroid is struggling. TSH can be raised due to non-thyroidal illness and I wonder whether it is due to your adrenal and cortisol issues.

    Ferritin is low, over 70-90 or halfway through range is optimal. I can't tell what iron and HB are like without the ranges. Ditto Prolactin. HbA1C is a diabetes test, I don't know whether yours is good or bad.

    B12 470 is unlikely to be deficient but PAS say 1,000 is optimal. You can supplement 1,000mcg methylcobalamin sublingual lozenges, spray or patches and take a B Complex vitamin to improve folate and keep the other B vits balanced.

  • Thanks very much. Is the low ferritin anything to be concerned about? I will definitely make an appointment to see my GP but unfortunately he's basically scratching his head and is relying on uclh for help. Perhaps it may be a good idea to ask him to repeat the bloods as I'm clearly deteriorating again since stopping the HC. Uclh simply told me to stop taking it but not to cut down and I was under the impression it had to be cut down slowly. It will be interesting to see what the tests show now I've stopped. Should he be testing my ACTH? I don't know how to thank you Karen

  • Karen, NHS will be satisfied with ferritin anywhere in range and perhaps it is fine for people without chronic health conditions. Those of us with health issues need to optimise our vitamin and mineral levels and many find improvement in things like fatigue, hairloss and even absorption of Levothyroxine when ferritin is optimal. Ferritin is improved by supplementing iron and vitC but you need to know your iron isn't high in range before supplementing.

    I can't advise on ACTH or cortisol, I simply don't know enough. Your GP will advise and contact UCHL for advice if he thinks it is necessary.

  • Thank so much. Karen

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