Symptoms of Addison’s?

[dlp5]

Hi. I've had tests for thyroid a couple of times. I've been having symptoms on top of my lupus and other things for ages and more or less been passed off by my rheumatologist. She then did a random cortisol test and it was low. I wasn't even told this for about 4 months. I'm having a short synacthen test this week. My 2 random were morning and were low, one being 46. I've got horrendous symptoms, sweat so much it runs down my face, complete debilitating exhaustion, low BP, low heart rate, insomnia, losing weight but putting it on round my middle, states of collapse, pain and pressure in and around front of neck up into jaw, the strangest intense headaches, blurred vision, always snotty as if I've got a cold, hives, awful tinnitus, unreal feeling of being, terrible itching, shivering, I could go on forever!! I've been on prednisolone for years and had massive doses of iv steroids in the past etc. I'm now on 5mg Prednisolone. Does this sound like Addison’s??

[greygoose]

Sounds like hypo to me. What were your thyroid results?

[dlp5 in reply to greygoose]

Grey goose. I was just told normal.!!??? Twice To be honest I feel totally fobbed off by all my doctors, and everything being put down to my preexisting conditions. But you know your own body and its illnesses don't you ??

[greygoose in reply to dlp5]

Of course you do. Are you in the UK? If so, it is your legal right to have a print-out of your results. Just ask at reception. You need to know exactly what they tested - they don't always do all the right tests - and exactly what the results were - because doctors are notoriously bad at interpreting thyroid results!

[Barrister]

Usually a morning cortisol, especially early morning, will be 500 + and anything below 100 is an immediate diagnosis. Mine was 15 and the following day it was 8 and I was immediately started on Hydrocortisone. Some of your symptoms are very familiar- constant headache, weight loss (due to lack of appetite, nausea and abdominal pain for me) intense fatigue so that I couldn’t even lift my arms to wash my hair in the shower - when I actually mustered the energy to get in the shower- dizziness on standing, low blood pressure, shortness of breath, the list can go on and on. The SST should be able to show whether you have Primary Adrenal Insufficiency (Addison’s) or Secondary Adrenal Insufficiency. Check that they are doing and ACTH Test too before the SST starts as this is important if you are SAI. The treatment is pretty much the same although PAI will often have Fludrocortisone prescribed as well as Hydrocortisone or Prednisolone. I started to feel much better within 24 hours of starting treatment but nearly 2 years down the line, I still find that I have as many bad days as good so be prepared for it to take a long time to recover. Life is different now, it’s a new “normal” but I’m still here and for that I’m very thankful as I was so ill before diagnosis, I nearly died. Good luck with the SST and hope you feel better soon.

Clemmie

[dlp5 in reply to Barrister]

Barrister. Thank you so much for sharing that with me. I'm at the stage now that I'm actually hoping it is found to be the problem because perhaps I might then get to feel even a tiny bit better when I start treatment. I've been let down so much by my specialist and doctors. I just want a diagnosis. I was convinced it was thyroid but then it wasn't I've fought with this to be determined what is wrong for so long. But reading your post is uncanny. If I could get even a bit better quality of life with the right treatment then it would be worth the not so good diagnosis of adrenal insufficiency. Xx. Could you tell me, were you on steroids before your diagnosis, which led to the condition??? Thank you so much for your kind words xx

[Barrister in reply to dlp5]

I had had a couple of steroid injections into my shoulder in the previous 18 months but no other reason for it to develop. There are forums on Facebook which are really helpful and also the ADSHG online which has lots of information. Also the Pituitary Foundation, all have fact sheets and help lines if you need it. If you are diagnosed you will have to become an expert as most GPs know very little about it as it is so rare (many hospital staff are woefully ignorant too!)

Just a word of warning - when I had my first (diagnostic )SST , I didn’t suffer any ill effects but I was very unwell so maybe I just didn’t recognise them. The one I had a couple of weeks ago, I had to stop my Hydrocortisone for 20 hours before it and within 20 minutes of leaving the hospital, even though I took Hydrocortisone immediately after the test, I became extremely unwell and felt like I had done before diagnosis. I was on a bus, alone coming home and I don’t know how I made it home. Hopefully, you won’t have any ill effects but some people do so be prepared. And if, in the meantime, you become more unwell (especially vomiting) either call an ambulance or go straight to hospital and tell them that you are being investigated for Adrenal Insufficiency. Incidentally, my recent SST showed undetectable cortisol (they were looking to see if my adrenals had “woken up” - obviously they haven’t and probably never will. My original (private) Endo had already said that with the original diagnosis she believed they never would but the NHS were insistent that they might. Seems like the private Endo was correct!

Good luck and I hope that you don’t have AI although from your results and symptoms so far, it’s looking like you do and as you say, you hope, in a way, that it is the cause because at least then you can start treatment.

And the sweating you mentioned - I’ve never sweated so much in my life as I have in the last few years, even with an early menopause, I never sweated. But now, even my head sweats and it doesn't seem to have improved much with Hydrocortisone.

Clemmie

[dlp5 in reply to Barrister]

To Barrister.

Hi Clemmie. hi thanks for the advice about the acth blood test. I had my SST test this morning. I remembered what you said about the acth test and asked if they were doing it. They said that the consultant hadn't asked for it it and it was quite unusual because normally they do ask for it at the same time. I asked would they please do it because of what you had said. And they agreed because it's usually done with it anyway. It's my rheumatologist that had sent me for this test. And to be honest she's an absolute waste of space and I think I'm going to have to try and transfer my care to somebody else. they said they didn't know why she hasn't asked for it. Anyway the nurse said to me that when she gave me the synacthen I might start to feel funny with various things but also that my face could go very red. She said that it happens usually two people who do have adrenal insufficiency. Anyway low and behold I got a bright red throbbing face and was a bit like feeling sick and dizzy. Can you tell me me if that's right? Because it seems to me that if you reacted to the synacthen then surely your adrenals are working??? Thanks for your help xxxxxx

[Barrister in reply to dlp5]

The first time I had the SST I had no reaction at all and my results were extremely low so I’m not convinced that the nurse is correct. The second time, again, I had no reaction to the injection at the time but an hour later I did become extremely unwell, but I believe it was because I was so low in cortisol that my body went into near crisis - my result was undetectable and even the 30 minute blood test it was still almost undetectable. I think that the majority of people don’t have a reaction whether they have AI or not, but that’s only my own observations from different forums. Some people are sensitive to the injection, some aren’t. You’ve already had low cortisol results so it’s likeLy that you do have AI.

Clemmie

[DIYqueen]

Sorry to go off on a tangent. I see you have had some relevant advice so wondered if you could tell me how you were diagnosed with lupus? My GP is doing lots of tests and I am a bit worried.