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Old 07-03-2009, 08:00 PM   #1
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Unhappy just diagnosed with addisons. pls help

Can anyone help me?? I have just ben diagnosed with addisons this week and was told i have complete adreanal failure, My doctor tells me, he thinks i have more going on than just addisons disease aswell..but my endrocologist cant see me for at least another 8 weeks as he is to busy. I have been told they want me in hospital asap, but due to the lack of beds and staff, this is not possible at the moment and i will have to wait till 28th of august before anyone can see me.

Has anyone had to wait this long,before they saw there endro consultant?? As i have been sent home from hospital with just my medication and no information about the disease at all. My GP tells me he does'nt know a thing about addisons and he also said he does'nt even know when he should send me into hospital. My life is in his hands, and he gives me no confidence in the way he is treating me, so i am very scared... Has anyone else had these sort of problems too????
I am in the process of tring to find a new GP...

I have sevear tremors and shakes in both my arms, hands and legs, I have constant lower back, neck, leg, shoulder pain and i am finding it hard to walk unadided at the moment, i am also extremly tierd all the time and pass out and collapse every day,my BP when i was in hospital last week was ranging between 80/24 and 90/50 i am so scared, as no one is telling me anythink apart from i must stay on the steroid medication or it can kill me.(And i hate this medication, all i seem to do is cry all day, i must admitt this is getting better each day tho) i have also been told i have a small ovarian cyst about 3cm but an elevated ca125 level which could indicate a tumer, I am now awaiting another scan for this In the last 6 months i have had pheumonia in the left lung an infection in the right lung and i also had a P.E bloodclot in the lung,endriometriosis and IBS. The doctors have told me i have not got any nurological problems but they cant explaine why i am having troulble walking and why i have extremely bad tremors and shakes all over, but mainly in my legs, and arms, i also have have numb hands, they shake too , but some days are better than others, I don't no why...
Also i have been suffering with indigestion, nausia, ice cream headaches just in my forehead, feeling lightheaded,confused most of the day and my memory is awfull.
The doctorsand consultants just tell me i will get better in time, and that i need to see an endriocologist, as they dont know what is wrong with me and that the addisons disease is completely over there heads ...my medication for addisons is 20mg of hydrocortisone and 100 microgrames of fludoritisone a day.
PLEASE CAN ANYONE HELP, as i am so scared and feel so alone . I am a 38 year old lady tring to bring up to young boys on my own.and i am finding each day so hard..I hope someone can help as i feel so alone. the hardest thing for me was every one was saying it was all in my head and i needed to see a shrink. but now i have been diagnosed they tell me i dont need to see one anyone.
At least now i know i am not going mad

THIS IS A NEW THREAD:
The doctors have just told me that they believe i may be suffering with lymes disease aswell, this makes so much sense as i have had the bulls eye rash in october, my condition has got so much worse since they put me on the steriods.
Does anyone know if it is true that steriods, can make the lymes disease twice as bad? this scares the hell out of me as i cannot come of the steroids because of the addisons disease.
does anyone know how hard it is to get rid of the lymes disease once it has started to hit the nervouse system?? is it curable?? how long will it take to get better or will i get better completly, seeing how i am in tyhe later stages of the disease??

I also just done the canadian lymes test, and was so shocked as i scored:
53 out of the 76 symptoms, now i am worried.
PLEASE HELP ........................................ ........................

Last edited by ozzyie135; 07-11-2009 at 08:00 PM. Reason: canadian lymes test score was so high, SO SCARED!!!

 
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Old 07-07-2009, 06:08 AM   #2
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Re: just diagnosed with addisons. pls help

Hello Ozzyie,

I am so sorry to hear that you are going through this. I cannot really address the Addison's issue but I would suggest that you take charge of your own health and get a copy of the test results for yourself. The adrenal glands produce a variety of hormones including testosterone, aldosterone and cortisol. All of these steroids control many things in your body including your blood pressure, how you handle stress and your gynecological functions such as ovulation, menstruation etc.. There is a large variety of problems that can occur with adrenal glands and sometimes the adrenals simply have a problem converting the precursor of these hormones into the hormones themselves. You may therefore be experiencing an imbalance of these hormones and this would be causing your problems. The steroids are the treatment of choice at the moment and your doctors are correct in saying that you need to stick to your medication. However, the medication may need to be adjusted or perhaps another type of steroid tried in order to fit your specific situation. All will depend on what your endocrinologist has to say.

In addition to getting a copy of your results and doing some of your own research, I would also try to find an endocrinologist a little sooner. Ask some of your friends or family if they happen to know anyone or call the association of endocrinologists in your country or area and see if they can suggest something. Another option is to find another G.P. as you are doing and to see if perhaps this person is affiliated with another endo who can see you sooner (usually doctors do referrals amongst themselves so a specific doctor will get referrals only from certain G.P.'s etc..). You may want to try going to a larger centre like a university centre as this will have a larger percentage of specialists and residents available. I am also sure that you can find web-sites of Addison support groups which can provide you with both information and emotional support.

As to your ovarian cyst, again I would get a copy of the ultrasound report and have a look for yourself. If the cyst is a 3 cm simple cyst (filled only with fluid) then it is highly unlikely to be cancerous. If it is a complex cyst or a solid tumour then it will probably need to come out so that you can be sure that there is nothing going on. The report will give you the radiologist's impressions of what was seen on the ultrasound. Keep in mind that the CA-125 can be unreliable in premenopausal women and endometriosis (which you mentioned that you have) can result in a false positively high reading of CA-125. Just to let you know, a score of 35 or lower is considered normal for this test.

Try to find someone to talk to, a relative, a friend, a parent .. anyone. Don't feel like a burden. We all need the kindness of others from time to time and you need support during this time. If you can find help with your caretaking duties this would also take a load off your shoulders.

I wish you the best and hope that you can get in to see a specialist soon so that your situation can get under control asap. Sorry I could not be of more assistance.

Estria

 
Old 07-08-2009, 10:16 PM   #3
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Re: just diagnosed with addisons. pls help

I am so sorry you are going through all of this i have many of the same issues you just described and it is so scary. The cyst is probably endometriosis I ahve this severely and have had two cysts in past two years. All your symptoms sound like addisons but you have to get put on correct dose of med. I wish I could help you more I can hardly walk and have so much pain and all i do is cry also. I have young son I worship and can barely care for him right now. You are going to be ok but you have got to see endocrrinologist sooner. Do you have family that can help you fight because with addisons you are so tired and sad and in pain hard to fight for self. Stay in touch if you need to vent i will listen because I am scared to I am only 35 and going through same thing. I cannot even find good endocrinologist to help me with dosing. This disease is rare and alot actually most drs. know nothing about. * link to commercial website and related info removed by hb-mod, moderator *
Let me know how you are doing. i wish I could be more help. You do not have cancer a simple cyst on ovary is probaly endometriosis or polycystic ovarian disease, none of those are life threatening.stay in touch. Angie maybe we can help eachother.

Last edited by hb-mod; 07-09-2009 at 02:59 AM. Reason: Please don't post links and/or information regarding commercial websites as per Posting Policy. Thanks.

 
Old 07-09-2009, 07:59 AM   #4
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Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by ozzyie135 View Post
Can anyone help me?? I have just ben diagnosed with addisons this week and was told i have complete adreanal failure, My doctor tells me, he thinks i have more going on than just addisons disease aswell..but my endrocologist cant see me for at least another 8 weeks as he is to busy. I have been told they want me in hospital asap, but due to the lack of beds and staff, this is not possible at the moment and i will have to wait till 28th of august before anyone can see me.

Has anyone had to wait this long,before they saw there endro consultant?? As i have been sent home from hospital with just my medication and no information about the disease at all. My GP tells me he does'nt know a thing about addisons and he also said he does'nt even know when he should send me into hospital. My life is in his hands, and he gives me no confidence in the way he is treating me, so i am very scared... Has anyone else had these sort of problems too????
I am in the process of tring to find a new GP...

I have sevear tremors and shakes in both my arms, hands and legs, I have constant lower back, neck, leg, shoulder pain and i am finding it hard to walk unadided at the moment, i am also extremly tierd all the time and pass out and collapse every day,my BP when i was in hospital last week was ranging between 80/24 and 90/50 i am so scared, as no one is telling me anythink apart from i must stay on the steroid medication or it can kill me.(And i hate this medication, all i seem to do is cry all day, i must admitt this is getting better each day tho) i have also been told i have a small ovarian cyst about 3cm but an elevated ca125 level which could indicate a tumer, I am now awaiting another scan for this In the last 6 months i have had pheumonia in the left lung an infection in the right lung and i also had a P.E bloodclot in the lung,endriometriosis and IBS. The doctors have told me i have not got any nurological problems but they cant explaine why i am having troulble walking and why i have extremely bad tremors and shakes all over, but mainly in my legs, and arms, i also have have numb hands, they shake too , but some days are better than others, I don't no why...
Also i have been suffering with indigestion, nausia, ice cream headaches just in my forehead, feeling lightheaded,confused most of the day and my memory is awfull.
The doctorsand consultants just tell me i will get better in time, and that i need to see an endriocologist, as they dont know what is wrong with me and that the addisons disease is completely over there heads ...my medication for addisons is 20mg of hydrocortisone and 100 microgrames of fludoritisone a day.
PLEASE CAN ANYONE HELP, as i am so scared and feel so alone . I am a 38 year old lady tring to bring up to young boys on my own.and i am finding each day so hard..I hope someone can help as i feel so alone. the hardest thing for me was every one was saying it was all in my head and i needed to see a shrink. but now i have been diagnosed they tell me i dont need to see one anyone.
At least now i know i am not going mad

 
Old 07-09-2009, 08:03 AM   #5
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Re: just diagnosed with addisons. pls help

Where do you live? You have to get to an Endo dr soon look in your area for Endogrologist that can see you quicker that August, or go to your closest ER for help and get monitored if you go to an ER they should admit you and then you can be seen by an Endo as an inpatient , with b/p like that you need to go to a hospital and get taken care of.. Hang in there is does get better with the correct treatment, but you have to FIND CORRECT TREATMENT SOON..

 
Old 07-10-2009, 05:10 PM   #6
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ozzyie135 HB Userozzyie135 HB User
Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by estria View Post
Hello Ozzyie,

I am so sorry to hear that you are going through this. I cannot really address the Addison's issue but I would suggest that you take charge of your own health and get a copy of the test results for yourself. The adrenal glands produce a variety of hormones including testosterone, aldosterone and cortisol. All of these steroids control many things in your body including your blood pressure, how you handle stress and your gynecological functions such as ovulation, menstruation etc.. There is a large variety of problems that can occur with adrenal glands and sometimes the adrenals simply have a problem converting the precursor of these hormones into the hormones themselves. You may therefore be experiencing an imbalance of these hormones and this would be causing your problems. The steroids are the treatment of choice at the moment and your doctors are correct in saying that you need to stick to your medication. However, the medication may need to be adjusted or perhaps another type of steroid tried in order to fit your specific situation. All will depend on what your endocrinologist has to say.

In addition to getting a copy of your results and doing some of your own research, I would also try to find an endocrinologist a little sooner. Ask some of your friends or family if they happen to know anyone or call the association of endocrinologists in your country or area and see if they can suggest something. Another option is to find another G.P. as you are doing and to see if perhaps this person is affiliated with another endo who can see you sooner (usually doctors do referrals amongst themselves so a specific doctor will get referrals only from certain G.P.'s etc..). You may want to try going to a larger centre like a university centre as this will have a larger percentage of specialists and residents available. I am also sure that you can find web-sites of Addison support groups which can provide you with both information and emotional support.

As to your ovarian cyst, again I would get a copy of the ultrasound report and have a look for yourself. If the cyst is a 3 cm simple cyst (filled only with fluid) then it is highly unlikely to be cancerous. If it is a complex cyst or a solid tumour then it will probably need to come out so that you can be sure that there is nothing going on. The report will give you the radiologist's impressions of what was seen on the ultrasound. Keep in mind that the CA-125 can be unreliable in premenopausal women and endometriosis (which you mentioned that you have) can result in a false positively high reading of CA-125. Just to let you know, a score of 35 or lower is considered normal for this test.

Try to find someone to talk to, a relative, a friend, a parent .. anyone. Don't feel like a burden. We all need the kindness of others from time to time and you need support during this time. If you can find help with your caretaking duties this would also take a load off your shoulders.

I wish you the best and hope that you can get in to see a specialist soon so that your situation can get under control asap. Sorry I could not be of more assistance.

Estria
thankyou so kindly for youur reply, i will definataly get my medical records to see what tests they have done and the proper readings, since i last posted this note on here, things have changed slightely, a complication has arisen and they now believe i may have lymes disease. This would explaine alot but this has now made me very frightened indeed, as i have learned tby looking on the net that taking steriods can make the lymes disease really bad this scares the hell out of me.
i rag the hospital today to explaine this to them, they said my consultant would ring me back and i would have to go into hospital, but alas i waited allday for there phone call but i assume there are no beds as i hav'nt heard back from them yet.
asfor my my family, they are brilliant my mum has lived with me for the past 6 months, i dont know what i would have done without them to be honest. thankyou again for replying

 
Old 07-10-2009, 05:20 PM   #7
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Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by momofaddy View Post
Where do you live? You have to get to an Endo dr soon look in your area for Endogrologist that can see you quicker that August, or go to your closest ER for help and get monitored if you go to an ER they should admit you and then you can be seen by an Endo as an inpatient , with b/p like that you need to go to a hospital and get taken care of.. Hang in there is does get better with the correct treatment, but you have to FIND CORRECT TREATMENT SOON..
hi , thakyou for posting a reply to me, i live in England, i am on the phone every day trying to see an endro consultant, but always get brushed off, saying they are really busy and sorry but they cannot bring my appointment forward. i have stared pssing out the last few days and basically feel awfull, they have just told me aswell that i may have lymes disease, believe this scares the hell out of me, as by reading on the net steroids and lymes dont mix, but i have no choice, i am tring to see my endro sooner but without any succsess, they are doing the lymes test tho, but alas not shaw when, i do belive my mediacation is wrong and have informed them of this but they dont seem to listen. i am at my witts end and very scared.. i know i need to be in hospital but they wont listen, this make me so angry
thanks for your kind responce

 
Old 07-10-2009, 05:56 PM   #8
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Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by soscared20 View Post
I am so sorry you are going through all of this i have many of the same issues you just described and it is so scary. The cyst is probably endometriosis I ahve this severely and have had two cysts in past two years. All your symptoms sound like addisons but you have to get put on correct dose of med. I wish I could help you more I can hardly walk and have so much pain and all i do is cry also. I have young son I worship and can barely care for him right now. You are going to be ok but you have got to see endocrrinologist sooner. Do you have family that can help you fight because with addisons you are so tired and sad and in pain hard to fight for self. Stay in touch if you need to vent i will listen because I am scared to I am only 35 and going through same thing. I cannot even find good endocrinologist to help me with dosing. This disease is rare and alot actually most drs. know nothing about. * link to commercial website and related info removed by hb-mod, moderator *
Let me know how you are doing. i wish I could be more help. You do not have cancer a simple cyst on ovary is probaly endometriosis or polycystic ovarian disease, none of those are life threatening.stay in touch. Angie maybe we can help eachother.
hi Angie, thankyou for sending me your kind message, it's nice to be able to talk to someone that understands, how each day is such a struggle, just getting out of bed is so hard, i am dreading the school holidays, as i wont be able to get my afternoon nap, Don't know how i am going to cope with this, How do you manage? Do youhave lots of help from family?
My mum and dad help out the best they can but there not well themselves,and theres no one else i can ask, i must say my parents have been brilliant thou....
I am sure you are right about my endometriosis, that it is causing the problems with the cysts, To be honest, i hav'nt got enuf energy to worry about it being anything sinister, feel to poorly for that.

The doctors are thinking that i may be suffering with Lymes disease aswell, and this scares the hell out of me, i really have enough going on with out this aswell, i am awaiting to here from the hospital for the tests to be done soon.They were supposed to ring me back today, but alas and not a surprise when they did'nt ring back,I will be on the phone first thing in the morning. Do you know what is the right medication for addisons, as i have told my endro that i am not on a high enough dosage of medication but he tells me, that i am, and he wont increase it.
I would like to say a big thankyou for sending me your message, you have helped me so much, just knowing i am not going mad feels so good, and that there is someone to talk to, really dose help so much.

what is it with endrocologist? i really do think they don't know what they are doing or even know how to deal with this disease... and all we are , are just guinney-pigs to them i think.

i would love to stay intouch,and it would be so good if we could help each other through this horrible condition cheryl

 
Old 07-11-2009, 04:09 AM   #9
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Re: just diagnosed with addisons. pls help

Are you on any antibiotics for the suspected lyme disease? Please get aggressive with trying to get on at least oral doxycycline until they can get you a bed at the hospital. You are in a very dangerous situation. If you are to sick to put up a fight get a family member to do it for you. It is THAT imperative. Lyme disease CAN kill.

If you just got bit in October there is still hope you can get rid of it but you are going to need to be put on IV rocefin with a lot of supportive care to do it. Please do as much research on lyme disease as possible. Most doctors aren't very educated on it.

 
Old 07-11-2009, 07:48 AM   #10
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Re: just diagnosed with addisons. pls help

Ozzyie,

Try to get a referral to a specialist who deals with lyme. This is a very tricky disease and you should really see someone who has a lot of experience. Get your G.P. to refer you or try to find an association on-line that has listings of specialists in your area.

See if you can get a family member to fight for you so that you don't become too drained and tired. If you should be in hospital then insist that they do something (or have a family member do it).

I wish you all the best.

Estria

 
Old 07-11-2009, 02:18 PM   #11
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Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by Maremma View Post
Are you on any antibiotics for the suspected lyme disease? Please get aggressive with trying to get on at least oral doxycycline until they can get you a bed at the hospital. You are in a very dangerous situation. If you are to sick to put up a fight get a family member to do it for you. It is THAT imperative. Lyme disease CAN kill.

If you just got bit in October there is still hope you can get rid of it but you are going to need to be put on IV rocefin with a lot of supportive care to do it. Please do as much research on lyme disease as possible. Most doctors aren't very educated on it.
Hi, to be honest i had a rash about 4years ago all over my body, which they thought was ringworm, it took about 5 weeks to clear it up.
In november 08, the bull's eye rash first appeared it was about the size of my hand in the end, it was on my lower right leg,to think of it that part of my leg always hurts still, and i don't know why. thats when my health got really bad and i started to become very ill indeed, and have been going down hill fast ever since.

I am not on any antiobotics now, but about 5 weeks ago i was on amoxoiline antiobotics 500g, for 7days because of a chest infection, i felt ok for a while, but since coming of them, i have started to feel very ill againand i am having new symptoms. like i said, i have been passing out completely, the last few days, and over the last day and a half i have also been suffering with very bad stomach aches, cramps and the runs, now i am staring to feel very sick too but i am not vomiting yet, have came close to it thou.

Your right i am feeling to poorly to try and fight for my cause and i hate making a pain of myself as i am a quite lady and i dont like making a fuss, but the way i feel and how scared i am right now, i must start shouting and making myself heard. if i am still like this on monday morning, then i am going to A&E, and i wont leave until they addmit me and find me a bed.
I am so frightened as i feel my life is in there hands and its in real danger, if they dont get to the bottom of this a soon i dont think i will make it ,and the doctors are going at a snails pace, and i can't seem to make them work any faster. I feel i have know where to turn ,so its good that i found this website as it really has helped me, so thankyou kindly for replying to my letter

Last edited by ozzyie135; 07-11-2009 at 07:45 PM.

 
Old 07-11-2009, 02:36 PM   #12
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Re: just diagnosed with addisons. pls help

Quote:
Originally Posted by estria View Post
Ozzyie,

Try to get a referral to a specialist who deals with lyme. This is a very tricky disease and you should really see someone who has a lot of experience. Get your G.P. to refer you or try to find an association on-line that has listings of specialists in your area.

See if you can get a family member to fight for you so that you don't become too drained and tired. If you should be in hospital then insist that they do something (or have a family member do it).

I wish you all the best.

Estria
Thanks for your advice, it has really helped me. I will try and do what you say, so first thing monday morning i will get intouch with my GP or i may go straight to the hospital and insist they see me, especially as i have been feeling so poorly over the last few days, it's taken me, all of my effort and strength to even try and write this letter back to you.
Oh just to let you know, i had a letter this morning from the hospital saying my gyno scan for my cyst is this wednesday they put it through as an emergancy, thats a surprise but thank goodness.

I will let you know how i get on

cheryl...

Last edited by ozzyie135; 07-11-2009 at 02:50 PM.

 
Old 07-12-2009, 12:20 AM   #13
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Re: just diagnosed with addisons. pls help

I would recommend that you go to another hospital in a different city and tell them about your condition(s)/other(s).

Research on like *****.com and *********** for doctors who specialize in care they may also be able to help : )
__________________
When thunder roars go indoors, if you can see it flee it if you can hear it clear it Lightning safety information.

 
Old 07-12-2009, 02:19 AM   #14
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Re: just diagnosed with addisons. pls help

thanks but in England not sure if its that simple, but i wil try. but in the meantime i will try researching for a speciailized doctor.
As for storms love watching them, there so beautiful
from cheryl

 
Old 07-26-2009, 12:16 AM   #15
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Re: just diagnosed with addisons. pls help

I am from Denmark and it sound like the system in England unfortunally is the same as here. They simply does not know enough about Addison (my opinium).

When I was diagnosed, I was treated ok, but was not told much beside 'take the meds or it can kill you' and then sent home with a lot of questions and feelings going thou my mind 24/7.

There is a lot you need to learn yourself about addison and the medications, and if you are not well enough to find out, find a friend or family member to help you. Dont count to much on the system, count on your own feelings..

I myself must admidt. I would ten times rather listen to someone who lives with Addison, than someone who has learned and read a lot about it.
Thou the danish addison union (or what it is called) I have gotten a Addison Big brother, and he helps me more than anyone else.
It is him I call when I start going into a crises or if I do not know what to do about something.
Try to find someone that has had addison for a while and know how to live with it.. I am sure you can find someone here. I would love to help you, but am pretty new to addison myself, but if you need me I am here and I would share whatever I do know.
you are deffently not alone.

As for the hospital... if I were you? I would show up in ER, saying Im not leaving. It is your life... fight for it

Thinking of you

Last edited by moderator2; 07-26-2009 at 12:02 PM.

 
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