Re: Awaiting diagnosis - advice on syptoms please.
Hi Joy
Not so sure about the hypos. Insulin should switch itself off when blood sugar drops. But sometimes a little bit of knowledge isn't a good thing!!!!
Wouldn't like to be without the H.C. now. Feel much much better on it just waiting for the fatigue to sort itself out.
My consultant wanted my first bloods to be done 2 hrs 30 after the glucagon injection. I started to feel unwell about 1 hr 45 after but kept it to myself as it was bearable. I too felt nauseous at this point along with the hypo symptoms. I got to about 2 hrs 15 before I had to speak up as I felt I was going to pass out. Blood glucose taken, blood drawn for cortisol levels then drowned in glucose gel (as it was squirted down the back of my throat not to the side of my cheek!).
Fingers crossed you hear from your consultant soon with good news. Keep me updated. I'll let you know how I get on at my opa.
Thanks for your messages, I find them of great comfort - I am not alone!
Re: Awaiting diagnosis - advice on symptoms please.
Hi Helen
Your glucagon test certainly sounds an ordeal. The glucose gel down your throat sounds awful, especially as you were feeling so unwell. Mine was a little different in the timings. I had the initial blood samples taken, then the glucagon injection followed by blood samples every 30 mins for 4 hrs. I felt ok for the first 2 hrs apart from feeling a little shivery when I got off the bed to pop to the loo, but I tend to feel cold anyway when I need food!
I agree about the HC. A colleague saw me taking my tab this lunchtime and was asking me about the pill box I've got with a timer in it. He asked me if I found it an inconvenience having to remember to take the tabs at set times. I replied that I was just glad I was on them as they stopped me feeling dizzy and helped with my other symptoms.
I also really appreciate your messages, it is good to know that someone else has similar experiences and understands the way I feel
Re: Awaiting diagnosis - advice on symptoms please.
Hi Joy
Forgot about the first blood sample after cannulation! After the injection of glucagon I had to wait all that time until the first sample was taken. Yes I too was cold (& prior to starting H.C. I was always cold) during the test & snuggled under a blanket until the hypo then I could have stripped off!!!
It's not an inconvenience taking the meds it's a way of life, not just existing! Extreme word exist but that's what I was before.
Re: Awaiting diagnosis - advice on symptoms please.
Hi Helen
I totally agree about the medication - having the meds has given me back some control in my life. When I take the tabs at the correct time I feel that I can have some control over my symptoms. Before the HC good days and bad ones weren't predicatable and I swung from knowing something was really wrong with me, to thinking maybe I was just 'getting old' (as a couple of colleagues had suggested...). Knowing there is a reason for my symptoms really helps too.
Temperature-wise I too was always feeling cold! This has definitely improved with the tablets. However, sometimes when I felt really ill (pre-HC) I felt very warm (after carrying shopping etc.), but when I took my temp and it was fairly low - 34.3 - 34.9 c - but this soon returned to normal after resting. The specialist didn't think this was significant though.
Re: Awaiting diagnosis - advice on symptoms please.
Hi Helen
Well at last I have some answers! I spoke to the specialist's secretary on the phone today. I still have low cortisol (as expected), but the thyroid and Adult Growth Hormone levels were fine. They want to put me on fludrocortisone. My interpretation of this is that I have Addison's rather than Hypopituitary as the AGH and thyroid are ok and, as far as I know, they only give you fludrocortisone for Addison's as your aldosterone isn't affected by hypopituitary problems....?
I'm celebrating in a modest way with a take-away and fizzy wine, but I feel really positive. My friend/colleague at work has Addison's and she felt much better on the fludro. So fingers crossed! The GP won't get the letter until next week, so I won't get the meds until later next week...
Re: Awaiting diagnosis - advice on symptoms please.
Hi Joy
That's great news :0) To eventually get a diagnosis and Fludrocortisone prescribed is fantastic! I hope you thoroughly enjoy your take-away and fizzy tonight! You'll have to keep me updated on your progress on fludro.
I've been back and forth to the Dr's over the last two weeks with a relentless gastric bug. Had to increase my cortisone to cope with the bug. However, I'd been left with terrible stomach pains. The Dr thinks taking the hydrocortisone on a completely empty tummy has caused gastritis. I've been prescribed Omperazole (ant-acid) and that seems to be helping. It's been worrying what with a bug and the adrenal insufficiency. Got through it just but thought on occasions I'd have to call an ambulance. Think I'll ask about an emergency injection at my outpatients on the 26th.
I'm so hoping the Consultant also starts me on fludrocortisone as my BP is still low (100/60). That accounts for the dizziness! The GP thinks I should also be on it, so fingers crossed. I'm hoping like you that the fludrocortisone makes me feel 'tip top'.
Anyway enjoy your modest celebrations and look forward to hearing about your progression to good health.
Re: Awaiting diagnosis - advice on symptoms please.
Hi Helen
So sorry that you haven't been feeling well. I do hope that you are on the mend now and that the days pass quickly before your appointment.
Many thanks for your kind thoughts. I am taking it as a diagnosis (hopefully I'm not making too many assumptions), but I will be glad to hear it directly from the specialist or endo nurse. It sounds as though you would also benefit from the fludrocortisone as well. Hopefully your specialist will decide that too when you see him/her.
I hope that you have a relaxing weekend and that your stomach symptoms are soon gone,
I'll let you know how I get on with the fludro - let's hope the GP gets the letter soon!
Re: Awaiting diagnosis - advice on symptoms please.
Hi Joy
Yes I have a bracelet. Was told during the glucagon stress test to get one. But think I could have done with the injection last night.....
Felt unwell in the afternoon, by tea time felt awful! Hot, dizzy, weak, pale, palpitations as I did do before H.C. Took an extra (half my 5pm dose) H.C. at 7:30pm. No improvement. Took another dose at 9pm. No improvement. Didn't know what to do with myself and to be honest -scared. Do I call an ambulance or NHS direct I was thinking. Called NHS direct. Whilst waiting for a local out of hours GP to call me back I took another dose (10mg extra in total). GP thinks due to the bug I didn't retain enough H.C. and last night for some reason it plummeted. I've got to increase my dose over the weekend and see my GP on Monday. My poor husband was pale and sweaty in panic. What do I do he kept asking. If I knew that I'd be doing it!!! Could really do with a flow chart of what to do in those situations! Very scary.
I hope you enjoyed your take away :0). Make the most of the nice wether this weekend before it changes. Lovely blue sky here in Dorset :0)
Re: Awaiting diagnosis - advice on syptoms please.
Hi Helen
What a traumatic night (and day for that matter)! I hope that the extra tablets have kicked in now. You're right about the flow chart, I had a basic table given to me by the Endo Nurse, to show HC increases for when you have flu, stomach bug etc. but more detail would be really helpful. When I got a bug in July I only doubled up on the day I had a fever, but it dragged on for ages and I wonder if I should have increased the dose for longer? I think part of you is scared that you are doing the wrong thing.
I hope you can get out and enjoy the weather too. It's a little chilly here in Yorkshire, but the sky is clear and sunny, so hopefully things will warm up.
I'm just about to ring my brother in New Zealand to keep him updated -time differences mean he's always the last to know anything!
Let's hope that September brings us both some positive news
Re: Awaiting diagnosis - advice on syptoms please.
Hi Joy
Am still increasing my doses. Feel as weak as a kitten. Just had my shower and am done in! Will see what the GP says tomorrow as to what I do. As you say, your scared of want to do. I know increasing the hydro on the short term won't do any harm but this is so new to us that you need reassurance and of course it happen on a Friday evening......
The flow chart your endo nurse gave you, does it have a source or web page you could let me have please?
Yesterday by all accounts was glorious. My folks took my boys to the beach hut for the day and they were in swimming. My husband was out diving. Next summer I aim to fully appreciate!!!
Fingers crossed you get the Fludrocortisone this week and it starts to work wonders :0)
Re: Awaiting diagnosis - advice on syptoms please.
Hi Helen
Sunny weather again! Hope you can enjoy it and perhaps sit in the garden? The beach hut sounds wonderful! I always wished that we had one when I was a child.
Sorry that you are feeling so weak. I wonder if the GP could ok the fludro-cortisone if your BP is still very low? Even if they had to contact the specialist first?
I am wondering what the next step is for me. Obviously no one has actually given me a diagnosis yet, I've only made deductions from the results they gave me over the phone and medication they say I'll be taking. Perhaps the letter will contain more information when it arrives as I imagine the secretary didn't tell me everything in it?? My specialist appointment isn't until November and as my lovely Dr has now left I was being allocated a new one. However, I have requested a specific specialist as I thought if I'm chaniging anyway I might as well have someone that is supposed to be good. I may have to try for a cancellation if I'm going to see someone soon though.
Here's to next summer - hoping that we are both able to enjoy the sunshine and have our energy back!
Take care
Joy
Last edited by Administrator; 09-16-2012 at 08:33 AM.
Re: Awaiting diagnosis - advice on syptoms please.
Hi Helen
Hope that you are feeling much better today and that your GP visit was helpful.
I had a letter yesterday from the hospital confirming my results. It also stated that "...the problem is your adrenal gland". I'm hoping that it was a typo as I am assuming I have two adrenal glands, unless they aren't telling me something!
My appointment is on the 7th November. I'm really keen to have someone actually give me a diagnosis so that I can accept the facts and get on with my life. I can make all the assumptions I want from the results, but I do really need to hear an actual diagnosis from a specialist! I attempted to get a cancellation today, but had no luck with that.
I was exhausted yesterday, a long day at work, or at least it felt like it! I'd just come home and read the hospital letter then shown it to my husband. I then went into the kitchen and stupidly I decided that this was a good time to sort out the leaky fridge. After about 5mins of faffing about with it I felt really dizzy... Goodness knows what I'd be like if I was cycling again! Lets hope the fludro helps with this.
Re: Awaiting diagnosis - advice on symptoms please.
Just to say to anyone who has read the previous messages that I have at last had a diagnosis of Addison's Disease! It is a year and a half since I first went to the GP - seems like much longer, but I know that others have waited far longer.
A great relief I must admit. I'm on Fludrocortisone now as well as the HC. They have also put me on Vit D/Calcium tabs as they said I was very low in Vit D. Has anyone else taken these vits? Bit of a nightmare for someone who loves tea as much as I do as you can't take them within 2 hours before or after tea - so a four hour stretch of time with no cuppa! The same goes for chocolate and a variety of other foodstuffs.... I cant take them with my other tabs either!
Anyway - just glad to be diagnosed and ready to start getting on with life again....
