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Old 04-17-2012, 06:59 AM   #1
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joysieb HB User
Awaiting diagnosis - advice on syptoms please.

Hello

I am a newbie. I have had a whole raft of endocrinological tests and they think I either have Addison's or secondary adrenal insufficiency.

I am glad that the doctors are taking me seriously, but I'm finding the wait between tests and specialist appointments difficult.

I'm on a low dose of hydrocortisone (5mg first thing and 5mg in the afternoon) my specialist acknowledges that I probably need more, but won't up the dose until I have a final diagnosis. This has helped with the dizziness to some extent, but I still have periods of dizziness, though not all the time now. I also have a lot of digestive problems - nausea, bloating and lack of appetite.

I've had two synacthen (ACTH) tests which came back with low initial cortisol readings and this less than doubled half an hour after the ACTH injection. I've also had various scans including an MRI of my pituitary gland. Thankfully this didn't show a pituitary tumour. I also started a prolactin series test, but I blacked-out and had a short fit during this - I was told this was because my blood pressure had plummeted.

I'm just wondering if anyone can give me advice - in particular those who have experienced pigmentation of the skin. I think two small scars on my knee have changed colour - from white to pale purple/red, but a large surgery (from years ago) hasn't altered.

Many thanks

 
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Old 06-27-2012, 09:35 AM   #2
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Re: Awaiting diagnosis - advice on syptoms please.

Hi,

Reading your post is partically mirroring me at the moment! After 2 short synacthen tests which like you the cortisol didn't double my Consultant diagnosed adrenal insuffiiency. I am awaiting an insulin tolerane test then the following day I can start hyrocortisone (10mg, 5mg and 5mg throughout the day). I can't wait to start feeling well again. My mri didn't show a pituatory tumour so am hoping the ITT will give some indiciation as to the cause. I have a scar on my knee from a trip 2 years ago that have turned brown along with a scar on my elbow from the same trip! A surgical scar on my chin has not altered.

Whilst I cannot offer you any advice I thought you'd like to know you are not alone! It's certainly nice for me to read..... I don't know about you but finally getting a diagnosis means I'm not going mad!!

Wishing you good health
Helen

Last edited by NellyR; 06-27-2012 at 09:38 AM. Reason: Mis spelt word

 
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Old 06-27-2012, 09:36 AM   #3
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Re: Awaiting diagnosis - advice on syptoms please.

Hi,

Reading your post is partically mirroring me at the moment! After 2 short synacthen tests which like you the cortisol didn't double my Consultant diagnosed adrenal insuffiiency. I am awaiting an insulin tolerane test then the following day I can start hyrocortisone (10mg, 5mg and 5mg throughout the day). I can't wait to start feeling well again. My mri didn't show a pituatory tumour so am hoping the ITT will give some indiciation as to the cause. I have a scar on my knee from a trip 2 years ago that have turned brown along with a scar on my elbow from the same trip! A surgical scar on my chin has not altered.

Whilst I cannot offer you any advice I thought you'd like to know you are not alone! It's certainly nice for me to read..... I don't know about you but finally getting a diagnosis means I'm not going mad!!

Wishing you good health
Helen

 
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joysieb (06-29-2012)
Old 06-28-2012, 06:21 AM   #4
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Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

Many thanks for replying to my message. Iím sorry that you havenít got the medication that you need yet, but hope that your ITT is going to be soon. It was interesting to hear about the changes in your scars, perhaps the knees are particularly susceptible to changes in pigmentation! I agree about the diagnosis, Iím glad that there is definitely a reason for me feeling the way that I have over the last year, but I look forward to a definite diagnosis of primary or secondary adrenal insufficiency.

Since I put the post on the board I had my Glucagon Test (at the end of April) and managed to black out during that as well! This isnít normal, it seems that I just seem susceptible to having this sort of glorified faint (Vaso Vagal Syncope). But it ruins the tests as they canít complete them. Hence Iím still without a complete diagnosis (though I think it is Addisonís). On the plus side they put me on the slightly higher dose of hydrocortisone, 10, 5 & 5 (as you are hopefully going to be on too). This took two and a half weeks to really kick in, but I gradually felt much better! I would say not to expect too much too soon, but you will definitely start to get some of your old self back after starting the HC. I find I need to remember to take the tablets on time (mine are at 6.20, 11.30 and 4.30) or else the dizziness begins to creep back. When I do too much physically then I need a little more, but your endocrinologist or endo nurse will advise you on this Iím sure. However, my ability to walk and carry shopping etc. has greatly improved since the increase in the tablets.

Iím seeing a neurologist next week to rule out epilepsy (as Iím having a slight seizure at the end of the blackout) but it really doesnít seem to be that. Then I may retake the Glucagon test, weíll see what they decide.

Hope you are feeling well today

Best wishes

Joy

 
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Old 06-28-2012, 01:10 PM   #5
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Re: Awaiting diagnosis - advice on syptoms please.

I was diagnosed with addisons disease when I was 15 , it was a bad roller coaster before getting a diagnosis . My symptoms started by being very lethargic no appetite head aches and darkening of the skin , my mum continuously took me to the gp and was sent away every time with different reasons was even told I was depressed and needed a holiday so we did and I ended up being refused to fly home and had to wait to get a fit to fly certificate which was frightening especially feeling so ILL . Eventually came home started vomiting and passing out was lifeless and going very dark all over .mum called an ambulance and I was blue light all the way to local hospital , the following day I was diagnosed after my parents were told I was dying and they didn't know why !!!! Luckily consultant arrived and requested a £7 test to find out if it was addisons and that's where I got my result, within hours I was given treatments including a hydrocortisone injection I started to feel human again . After week in intensive care I was on a normal ward feeling larger than life and couldn't wait to go home . When I got home it took some getting used to remembering to take tablets everyday throughout the day for the rest of my life . I have had quite a few spouts of being admitted to hospital due to d&v especially for the simple fact you dehydrate quickly and obviously can't keep the steroids in your system if your vomiting them up , apart from that I've so far had a healthy time due to my tablets . I've had it for 15 years now and at least I'm always tanned due to darkening of the skin!! Any questions or advice ????

 
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joysieb (06-29-2012)
Old 06-29-2012, 07:49 AM   #6
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Re: Awaiting diagnosis - advice on syptoms please.

How dreadful! It must have been horrendous to go through all that at such a young age. You sound as though you are in control of things now, so that's really encouraging.

I wondered if you would mind me asking about your medication? Do you find it helps to take the HC with food? I find it difficult with the first tab in the morning before I get out of bed, so I tend to have that with just water. I assume that you take fludrocortisone as well as the HC? I'm not on that at the moment as they haven't decided if it is AD or the pituitary that is causing my Adrenal Insufficiency. My friend who has AD says she started feeling much better when she started on the fludro.

Many thanks

Joy

 
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Old 07-13-2012, 03:22 AM   #7
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Re: Awaiting diagnosis - advice on syptoms please.

Hi Joy,

I had a Glucagon test yesterday which they had to abandon due to a bad hypo. Not sure why I had a hypo, followed by another after Glucogel, dextrose tabs, wholemeal sandwich. Don't understand why I had a hypo after glucagon!!! Started HC after test instead of today, feel awlful but sure thats to be expected after yesterdays ordeal! Will play patience with the HC and hope they start to work in the next couple of weeks. Have you got a date for your repeat glucagon test?

Hope you are as well as can be
Helen

 
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Old 07-16-2012, 01:28 AM   #8
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Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

I'm so sorry that you had such an awful experience. I know how frustrating it is to psyche yourself up for such a test and then not be able to complete it - let alone the fact that you feel unwell on top of it all! I hope that you are feeling much better now and that the HC tablets have started to kick in.

It does seem strange that you had a hypo after all that glucagon! However, I think my blood sugar was fairly low after my blackout (they took it about an hour after) it wasn't a hypo, but on the low side, so the nurse was trying to get me to eat something and have a drink of lucozade. I remember the nurse on the acute assessment ward shaking his head when he saw me leant over a bowl, saying 'They really shouldn't muck about with your sugar levels!!'

I saw the neurologist a week ago and he said that I had been having vaso vagal episodes, not epileptic fits. This means I can have the test again. I'm waiting to get a letter, but have discussed it all with my endocrine nurse. She seems to think I may well have another episode, but I'm trying to be more positive! When I talked about possibly bringing my husband with me this time so that I feel more relaxed, she said 'It might be too distressing for him if you blackout again!' She's probably right, but I may take a friend, who is an ex-nurse, if they will let me.

I hope that today finds you feeling much better

Joy

Last edited by joysieb; 07-17-2012 at 12:14 AM. Reason: word error

 
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Old 07-18-2012, 11:42 PM   #9
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Re: Awaiting diagnosis - advice on syptoms please.

ok pigmentation is a bronZing of ur skin. n all of it. its not in just one spot.. it means that u have a year around tan. But when u get diagnosed n start the medicine it will fade away.. i used to have an awesome tan all year around, now I burn and it fades away. U don't tan anymore...

 
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Old 07-18-2012, 11:56 PM   #10
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Re: Awaiting diagnosis - advice on syptoms please.

I am on levthyroxin for thyroid, fludrocort, n hc.. i was still having a hard time getting up in the morning so they put me on dexomethosone b4 bed, and lowed my hc... but that didn't last long cuz it gave me horrable acne... I take 15 mg in the am n 5 in the pm.. but in this hot weather when u sweat more u need more... and I can tell when it gets low I just take another 5.mg, I know what ur body feels like when u don't get enough.. they mess with my hc constantly flucuating doasages...

 
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Old 07-19-2012, 02:00 AM   #11
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Re: Awaiting diagnosis - advice on syptoms please.

That's really helpful, thanks. I don't have an all over tan that's for sure! I just noticed slight darkening in the crook of my arm, above my hip and arm pits. It may be that they were darker anyway and that I am just looking for symptoms! However, my small knee scars have definitely darkened.

I think my HC level is ok at the moment, but that I may need something else - fludrocortisone or whatever I might need if it is a pituitary condition (Adult Growth Hormone etc.) as my energy levels are still low.

Do you find that you have to alter your dose a lot with summer weather? Do you have quite hot temperatures where you live? I'm in the UK, so we don't normally have hot summers. However, whilst I'm still getting used to the meds perhaps this is a positive!

Many thanks

Joy

 
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Old 08-07-2012, 10:43 AM   #12
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Re: Awaiting diagnosis - advice on syptoms please.

Hi Joy
In an earlier message you said it took about 2.5 weeks until you started to feel better on the HC. Did the old Joy return or did many of the symptoms ease? I did start to feel better at about the 2/2.5 weeks mark but am now over 4 weeks in and am really struggling with exhaustion..... In need of reassurance!!
I hope you are well?
Helen

 
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Old 08-10-2012, 03:11 AM   #13
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joysieb HB User
Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

Sorry to hear that you are so exhausted.

After starting on the higher dose of HC I started to feel much less dizzy after 2.5 weeks. That was the symptom that affected me most at work I suppose, feeling that I had to clutch onto desks, cabinets etc. as I felt so dizzy. So once that subsided I was delighted. Another thing that improved was the feeling of nausea, I used to get it almost every evening, especially when I was in bed. My stomach was v tender too. This has improved gradually and although I still get the bloating, the nausea seems to have gone.

Energy-wise I think that I have improved much more slowly. I am not back to old pre-illness Joy. I am gradually trying to walk more, but haven't returned to cycling yet. I defrosted the freezer the other day - scraping ice off, bending and mopping the floor and I was exhausted! I had done quite a few other things that day, but really that's not right for someone who was fairly fit before! My feeling is that I will need another drug on top of the HC, either fludrocortisone, if it's Addison's, or some other med if it is a pituitary issue.

The present weather is lovely as I'm on holiday from work, but I think that it makes me more tired. I wonder if that is part of the problem with you? If it is Addison's then there are more problems when you perspire and lose salt.

I have my glucagon re-test on the 30th, so I am trying to feel positive about it. My friend is coming with me to keep me distracted, which should help. I will drink lots of water and hope for the best.

Hope that you have some good days soon

Take care

Joy

 
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Old 08-10-2012, 08:59 AM   #14
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Re: Awaiting diagnosis - advice on syptoms please.

P.S. The other thing that I thought of is that if you even have a slight cold, virus etc. that can make you feel exhausted and you may need to up your tablets if you have a temp - if that's what your specialist suggested? I have just got over a cold - I felt completely drained with it - the symptoms lasted over 2 weeks rather than the usual few days. However, I only had a temp for one day so only doubled up the tabs for that day.

Are you mainly exhausted at the end of the day or after exercise/carrying shopping etc.? You may well find that the exhaustion does improve some more on the HC, but ultimately, I think we will both need another drug to compliment the HC and help with the symptoms.

Hope you have a good day tomorrow.

Joy

 
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Old 08-12-2012, 07:35 AM   #15
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joysieb HB User
Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

I noticed that you are from the UK. I'm sure that you know this already, but if you have either form of adrenal insufficiency you should be able to get free prescriptions. I wasn't told by my Endo, but found out because I have a friend with Addison's. I double checked with the pharmacist as I wasn't sure if I needed a definite Addison's/Pituitary diagnosis, but you don't need to as long as you are on the HC long term for AI. I have paid for my prescriptions all my adult life and have asthma so need regular meds anyway - I have never begrudged paying as I work, but if they are free for those with AI, then I am happy to carry the card! You need to ask your GP for a form - my card came in just over a week.

Best wishes

Joy

 
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