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Old 08-16-2012, 09:43 AM   #16
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NellyR HB User
Re: Awaiting diagnosis - advice on syptoms please.

Hi Joy,

Thanks for you words of advice. I found them very reassuring

My G.P. gave me a prescription exempt form a couple of weeks ago and the card came last week. Like you I don't mind paying as I work but getting the monthly script free definately helps.

I love the summer days we've been having but like you have been struggling in the heat. I can't seem to tolerate the sun on me or the heat, where as previously I'd love to sit in the sun and top up the tan. I do sweat alot, more than I used to but on the plus side I am no longer cold all the time and shivering with cold.

I am currently signed off work and have been since the end of June. I am having good days now but on taking advantage of the good days, e.g., going for a walk, hoovering, I then suffer for days after. My probelms are my arms, I am unable to carry items (shopping) or push the trolley in ASDA. Using my arms causes then to feel heavy and weak. My G.P. called it an energy dump.

I see the consultant again the end of September and am hoping I can take another med to compliment the H.C. be it for primary or secondary addison's.

Two years ago when my symptoms first started I did my first triathlon (novice), I struggled due to the shaky, weak, exhaustion feelings and long to return to a good level of fitness, maybe another triathlon!

Thank-you for your messages . Good luck to you for your re-test. Let me know how you get on.

Best wishes
Helen

 
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Old 08-16-2012, 10:42 AM   #17
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joysieb HB User
Smile Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

I'm glad that you have the prescription card sorted out, hopefully someone else will benefit from reading the thread as not all pharmacists or GPs seem to know that you are eligible for it with AI.

I'm greatly impressed with the triathlon! I'm sure that once your meds are balanced then you will be able to get training again. I'm afraid my cycling is more of the getting to work kind - cycle paths and quiet streets to avoid taking the bus!

I totally understand about the carrying of shopping etc. - today I did a bit of grass cutting and strimming in the garden and my face was bright red and I had to rest for some time afterwards.

Workwise I am lucky in that I work at a college, so I have quite a long summer holiday. Also most of my work is either 1:1 with students or teaching students in a workshop with individual work, so I can sit down when I need to. I really don't know how I'd have coped if I had been doing front of class teaching as I used to - well I wouldn't have! I did drop my night class for a while when I was particularly ill, which helped. Back to work on the 28th - just before the Glucagon!

Hope you have had a good day

Joy

 
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Old 08-30-2012, 07:41 AM   #18
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Re: Awaiting diagnosis - advice on symptoms please.

Hurrah! I managed to get through the Glucagon test without blacking out! I think that drinking lots of water and having my feet higher than my head on the hospital bed helped. I did feel nauseous near the end of the test, but that soon went away once I'd had some Lucozade and a sandwich.

I hope that I am nearer a final diagnosis now.

How are you feeling Helen? I hope that things are improving.

Best wishes

Joy

 
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Old 09-03-2012, 10:36 AM   #19
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NellyR HB User
Re: Awaiting diagnosis - advice on syptoms please.

Hi Joy

I don't know why but I didn't get an email to say you had posted, as I have done before. I have been thinking of you and wondering how the test went on Friday. Thought I'd send you a message and see you've messaged

That's great news that you managed to complete the test Have you had any indication yet as to a diagnosis? How are you feeling? Less dizzy? More energy? Hope so!

I'm still signed off work. Energy levels are not at a level to be fully functional, especially for my job as a staff nurse. I see the consultant on the 26th and am so hoping he'll either up the H.C. slightly or start me on another med to compliment the H.C. Am also slightly anxious as to what he'll say was the cause of the hypo during the glucagon test. I made a list of all symptoms that have improved or stayed the same which I found reassuring. All bar the fatigue has improved

Hope you are well.
Helen

 
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Old 09-03-2012, 12:57 PM   #20
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joysieb HB User
Re: Awaiting diagnosis - advice on syptoms please.

Hi Helen

Thanks for your reply. I think that as I had to miss some HC to prepare for the test I experienced some of my old symptoms again - to a lesser degree. I couldn't eat an evening meal on Saturday as I felt so full from a sandwich at lunch and I was also very tired after shopping. However, I'm back at work and not doing too badly now - no teaching yet, just unpacking boxes as we have moved staffrooms. I reckon it takes a few days to recover from the test.

I don't think that I asked you before, but how far on were you with the glucagon before they ended it? If it was fairly near the end then perhaps they can make a conclusion from the bloods that they did take?

I'm not sure that the hypo during the test is that strange a reaction - to start the test you have a very low blood sugar, then you are blasted with glucagon. Presumably that affects your insulin levels and the blood sugar goes back down again (you will know better than me)? They don't give you the finer points of what it does to you apart from the fact that it puts your body under stress! I do know that both times that I had it done I was very nauseous (only near the end the last time) and that after Lucozade and a sandwich I felt much better. Perhaps your reaction was just a little more severe?

I rang the consultant's secretary and she said that they would get my results within 5 days. She'd need to discuss with the consultant then I'd get a letter. So I just need to wait a bit longer and hopefully I'll get some information - I'm trying to be positive, but also not pinning everything on this as I've been there before! My next appointment isn't until November though, so we will see what happens!

I hope that all goes well for you when you have your appointment. Please let me know.

Best wishes

Joy

 
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Old 09-04-2012, 04:39 AM   #21
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NellyR HB User
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!

Take care
Helen

 
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Old 09-04-2012, 10:30 AM   #22
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joysieb HB User
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


To a healthy September, take care

Joy

 
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Old 09-04-2012, 10:48 AM   #23
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NellyR HB User
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.

Here's to a healthy September indeed :0)

Take care
Helen

 
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Old 09-04-2012, 01:12 PM   #24
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joysieb HB User
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.

Good to look back and see improvements I think!

Take care

Joy

 
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Old 09-14-2012, 09:34 AM   #25
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joysieb HB User
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...

I hope that you are well,

Take care

Joy

 
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Old 09-14-2012, 09:56 AM   #26
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NellyR HB User
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.

Take care
Helen

 
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Old 09-14-2012, 10:28 AM   #27
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joysieb HB User
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!

Take care

Joy

 
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Old 09-14-2012, 12:46 PM   #28
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joysieb HB User
Re: Awaiting diagnosis - advice on symptoms please.

P.S. Forgot to say that the emergency injection kit is a great idea. I feel safer having one with me. Do you have an alert bracelet too?

 
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Old 09-14-2012, 10:52 PM   #29
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NellyR HB User
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)

Take care
Helen

 
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Old 09-14-2012, 11:52 PM   #30
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joysieb HB User
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

Take care

Joy

 
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