My reason for coming here today is, I have 2 nephews who have addison’s. One who has learned to live around it, and the other who is having a rough time. I am looking for a place that I can tell them about to find others who can relate and hopefully they’ll find if not recovery, but some peace or direction.
Primary addison here from autoimmune issues. Im here to find a place to share with others with the same challenge. I vacillate(sp) between being still a bit cranky about having it, exhausted on days Ive done too much and moments of being absolutely sure there has to be more to this puzzle and something missing in our treatment to battle fatigue and “brain fog”. So I hope I am welcome here and can contribute and learn.
Hello, I have had Addisons for 8 years now. Would love to hear how other people deal with it in their day to day life.
Have constant low energy and fed up of doctors telling me i should have plenty of energy.
Thanks Sarah
Hi
My name is Fran.
I have Addison’s Disease and was diagnosed 4 years ago. I have two brothers who are also Addison’s. Despite being on Hydrocortone 15mgs + per day, I am still having a rough time. I was taken off Fludrocortisone by my former endo, and since then I have started feeling dizzy again, especially when I have been walking and then suddenly stop to speak to somebody. I have almost hit the ground on a number of occasions under these circumstances.
I am waiting for an appointment to see the same Endo. who treats my two brothers, even though he is a couple of hundred miles away. I think it will be worth it.
Fran
I feel your pain! I have had Addison’s and autoimmune hypothyroid for seven years. And while I do have days of low energy, I have had many more days of normal energy. While I do not doubt that you feel like crud, because I know that feeling, you should STRIVE for better. Do not give up on feeling good. Make feeling “normal” your goal and the goal of your doctors. And if you are not happy with your doctor, fire them! You would not keep a mechanic that doesn’t fix your car right. Expect at least as much from your doctor.
So, anyway, welcome, good luck. Keep a positive attitude. It is not all bad, and there are much worse things in this world. I try to cling to the good days and on the bad ones I try to analyze what went wrong and change it.
Consider with your doc changing types of streroids, changing times of dosings, amounts of dosings. Make sure your thyroid is working okay. Get a good doc.
Sorry I can’t be more specific - I am on a bunch of pain meds right now for a back injury. Oh well. Take care and good luck.
carolyn
SarahJ addisons-cpt2211@lists.careplace.com wrote:
I also forgot to mention that I also have Coeliacs, and from my blood test results I am also wondering about hypo pituitary, as my TSH is low, and my free T3 and free T4 are also low ‘normal’, which sounds like I am not producing TSH, I also know that I do not produce ACTH when it is required either, and to get my adrenals to work, my former endo. shot a massive amount of ACTH into me which made me extremely ill… and he wonders why I won’t go back to his clinic!
Fran
I was diagnosed with growth hormone def. around 1995 and Addisons in 2005, would love to hear from people with similar experiences
Cecy,
I was diagnosed with Addison’s disease in 1974. In 1994 I went on hormone replacement therapy to protect my bones. Last year when I was 60, they did a bone density. They said my bones were as good as a 20 year old. It is a shame your Dr. didn’t think about the bone thinning. There are many drugs available to rebuild your bones. The best is Zometa. Check with your doctor.
Carol
Fran,
I am in the Washington DC area. I have an excellent endocrinologist. Her name is Dr. Puri. She would never take me off a drug without first testing to see if my electrolytes were correct. Maybe you need the Florinef every other day or maybe a half tablet a day. A blood test would tell you.
I was diagnosed in 1974. I have been healthy most of the time. I also have autoimune thyroid deficiency.
Don’t wait. Unbalanced electrolytes could kill you.
Carol
Sarah,
I believe I have fairly normal energy. I was diagnosed in 1974.
I weigh 150 lbs. 5’6". I take 20 mg of Cortef (hydrocortisone), 0.1mg of Florinef (fludrocortisone acetate. I also have thyroid deficiency. I take .05 Sythroid (levothyroxine).
Does your Doctor test your thyroid? Do they perform a 24 hour urine to see if your Cortef dose is correct. Have they checked your electrolytes. Maybe you need Florinef. These are the questions I would ask my doctor. Also, have they done a bone density to make sure your bones are not thinning from the steroids.
Carol
Hi carol
I currently take 30 mg hydrocrtisone and 0.1mg of Fludrocortisone Acetate.
I recently had my electrolytes checked and all was normal. So my consultant has finally agreed to do a thyroid test.
I am having this next week so am keeping my fingers crossed once again.
Thanks Sarah
Hi I am new here, and have been treated for adrenal fatigue for 7 months and now am being tested for addisons also. I also have type 1 diabetes and hashimoto’s. Just trying to learn how to juggle them all!
Tanya
Hi Tanya, welcome I hope someone can help you. Ask any question and it will be answered usually pretty fast. I have addisons and type 2 diabetes but I am on lantus, Byetta, and humalog. OH and cortef, fludrocortisone, and pain meds for chronic pancreatitus. The addisons is only for five years now maybe six. Let us know what your results are from your acth stim test. I hope the doc you have is good enough to deal with such a rare disease.
BIGMIKE
I am looking for some help in understanding the process of being diagnosed with Addison or HypoP. I have been sick off and on for going on fours years, more on than off. So far I have the results on cortisol 0.7,acth
Hi I am Kelly and I just found this site. By accident but I am really glad i did . I have had both adrenals removed . I was 18months old, I have never met anyone in the world like me that has suffered for so long. I have had other cronic problems also like breast cancer, chest wall sarcoma, and lung cancer, i also suffer from deppression(don’t we all) and also found out that I have ADD. I am currently not working which doesn’t help matters, but find the stress to hard to cope with on a daily basis. I look forward to chating with everyone I can. Just because I now know I am not completely alone.
I wish everyone well and “keep smiling”. I find i am on during the day so my boyfriend can use computer when he gets home. Thank you all Kelly
Amanda, please be careful! I completely understand your frustration believe me. I had Cushing’s for 14+ years before anyone diagnosed it. I have since been through pituitary surgery, and had both adrenal glands removed which were loaded with tumors.
It seems like every person with AD is a little different. I take 20mg with no adrenal glands (or thyroid gland removed in 02). I take Levoxyl with no T3. My levels are all good. Some folks require more replacement corticosteroid but 45mg is awful high.
Find an endocrinologist to do a 24 hr urine collection for you and that will tell you if you’re too high or too low. I know at least when I was Cushingnoid I was thirsty and took in and flushed out a lot of fluid (ie glued to the toilet!) I fly 2000 miles for my endo but in the end it has been the difference in life or 6 ft under for me. There is a good doctor in Pittsburgh although not around the corner closer than Los Angeles where I go. You may want to look at the symptoms of cushing’s and make sure you’re not taking too much…that is a slow(er) process but much of my damage is permanent. I’m 36 and not a doctor but I have been through through **** and back a few times now and can say with a lot of experience that too much cortisol is also really bad. An endocrinologist would do an adrenal stim test (ACTH stim test) to see how much function you have and look at the 24 hr UFC and balance the meds that way. Find a doctor to work with you because this can cause you some major problems in addition to what you already have and it sounds like you have had more than your fair share of health issues.
Regards,
Renee
Hi everyone,
My story is long…I’ll try to keep this really short…
I’m a 37 year old mom of one 3 year old boy. My history:
- excruciating headaches began in late teens
- fatigue, sinus problems and acne started in early 20’s
- headache was constant by age 28
- sore throat with swollen lymph nodes at age 28 (persists to this day)
- age 28, undergo accutane treatment to get acne under control
- diagnosed with borderline Chiari Malformation I at age 33 (a slightly underdeveloped skull)
- diagnosed with Pseudotumor Cerebri at age 33 (high intracranial pressure that is the result of CMI)
- age 33, underwent two surgeries for CMI - got no relief
- diagnosed with Occult Tethered Cord Syndrome at age 35
- underwent surgery to release tethered cord at age 35 and headaches resolved
- age 37 (now) diagnosed with Hashimoto’s disease (both antibodies high)
So…after all I’ve been thru, several annoying (but livable) symptoms persist. Sore throat, fatigue, controllable acne, cold feet, constipation, problems focusing, aching feet, excessive thirst, frequent urination, brittle nails, carpel tunnel, etc. I finally figured out “I must have a thyroid problem”. My intial lab results were normal (as is always the case it seems!). I pushed and found a doctor who ordered the antibody test.
I’ve been on synthroid or armour for about 6 months now. I twice tried to get my does up high enough to resolve my symptoms but each time I ended up miserable with a racing heart and no resolution. AND, I was starting to have problems with trembling hands in the a.m. I finally figured out that it must be a cortisol problem. I asked my PCP about it and he looked at me like I was crazy. So I ordered some online and started self treating. I’m at 45mg per day and doing pretty darned good! My skin is beautiful (for the first time in 15 years!) and my fatigue is much better.
I still have excessive thirst, frequent urination and a sore throat. I suspect I need florinef too.
I hate the idea of self treating…but I am sick of feeling like a sitting duck. For crying out loud, I found out that treating with synthroid alone in Addison’s can TRIGGER an crisis. And I truly believe that’s where I was heading (with the tremors that started after I started synthroid).
So at this point…I’m not sure what I’ll do. I’m trying to get someone to order the adrenal antibodies tests. I guess I’ll go from there…
Amanda in Maryland
Hi Renee,
Thank you so much for all the info. Do you know the name of the endo in Pittsburgh? I can drive there…
Also…does someone with cushings also have antibodies? Or are the antibodies only indicative of addison’s (low cortisol)? I’m definitely going to push my pcp HARD to do the antibody test.
I see him this coming tuesday. Hopefully this will help me distinguish the difference. But if both cushings AND addison’s have antibodies…well that will make it harder to tell, I guess.
Thanks again…
Amanda