Please help me...
Posted , 5 users are following.
I am desperate. I am scared. I have lost all hope.
I just had my 22nd birthday, but somehow I feel as if I will not make it to my 23rd. I have been suffering from a mysterious debilitating sickness for a year and a half. I have seen numerous specialists and doctors in hopes of getting this resolved, however, I get no answers.
On December 4th, 2016, I awoke believing I was having a heart attack. It was hard to breath, my heart rate had spiked, I was nauseated and dizzy. I went to the ER and they told me that it was anxiety. For the next several months, I moved home from college and rested my body there. However, my symptoms continued to escalate.
Here is a comprehensive list:
1. Irregualr heart rate (sometimes fast and sometimes very slow)
2. Not too often, but muscle pain
3. I got sick a lot this past winter
4. Vomiting/nausea
5. GI issues like abdominal fullness, diarrhea, and burning
6. Mostly pain on the left side of my body like down my arm and leg (also below my left eye down my cheek bone I get an odd sensation, almost like numbness)
7.Dizziness
8. EXTREME fatigue and body heaviness
9. Forgetfulness
10. Anxiety/constant sadness
11. Menstruation issues ( irregular, used to be heavy but this past one was very light)
12. Headaches and head pressure
13. Feeling of blood not circulating
14. Mysterious bruises
15. Random paper cuts
16. No ambition
17. I did have weight loss this past winter, however, not noticing any now
Since December of 2016, I have been to the Er 5-6 times, I have seen my OBGYN twice, I have seen a neurologist, a cardiologist, tried Chinese medicine, seen my GP numerous times, gone to a gastro specialist, and tried counseling.
Every doctor claims that this is anxiety. However, I cannot believe that. I j=have had so many blood tests done (cannot even exactly tell you each one I have had done because I have had so many), an MRI/CT of my head, a 30 day heart monitor, and echo of my heart, a colonoscopy/endoscopy, a spinal tap, etc... and nothing has been found.
I have noticed that my symptoms do get worse on my period. And I have noticed that my symptoms stay for a period of time and then will disappear and then come back, Recently my symptoms have stayed consistent since this past Memorial Day.
I was thinking about getting my hormones tested because I am not sure if they have been in the past, despite all the blood work I had done. So today I was researching hormone imbalance symptoms and Addison's disease came up and frankly, I am terrified. I have read a lot of stories about girls my age who have been misdiagnosed by doctors saying they have anxiety for years and then all of the sudden they go into adrenal crisis and die. I have no where to turn to anymore because no one believes me anymore. Recently, I have had the most chronic fatigue and dizziness and I can hardly do anything. Work was my safe haven and now it is a constant struggle to even get up and go.
Is this similar to anyone else??
0 likes, 15 replies
karen69629 alex1996
Posted
I feel for you........I really do. When I was in graduate school (in my 40s) I had many of these symptoms. It turned out I had a rare form of cancer, but which came first? A poorly functioning adrenal system (which affects one's immune system) or did the cancer treatment cause the poorly functioning adrenal system?
Now, don't freak. With the extensive amount of tests you have had, they would have found something if it had been there. So..........breathe..........and read on.
Have you had a "Corticoid Stimulation Test?" They take your blood, wait 1/2 hr or so, give you a dose of cortico steroids (by injection or IV), wait again, then test your levels once more. That test should indicate your status per Addison's.
Also, do you take opiods or other prescription pain killers, and/or do you do drugs (other than marijuana)? Drug use CAN affect your adrenal system in a negative way.
The first thing to do is look for a really good endocrinologist, preferably at a University medical center. Since Addison's is rare (1 in 100,000), a local doctor won't do you much good: at least in my experience.
Keep a journal of your symptoms. With a list that long, it will be hard for doctors to "tease" apart your symptoms. It may be that there is more than one thing going on (called co-morbidity).
Random paper cuts??? That is a weird one. Please explain.
I've had many of your symptoms over the years, but the body aches and heaviness is my nemesis. Some days I feel like I am walking in water up to my neck, it is so hard to put one foot in front of the other.
Another reason to journal! You see, if you ARE having adrenal issues, then stress (good or bad) can cause you to tank. You'll be better able to relate what is going on in your life with your physical symptoms.
For today, let's end on a positive note, with a list of things you can do to help yourself while you are waiting for the endocrinology appointment (they can look at other hormone related issues as well).
1) research the best endocrinologist in your area, but be ready to hop into your car to travel to a university medical center.
2) if you aren't taking these supplements already, get some Vitamin D3 and take 4000 to 6000 mg per day
3) Many of your symptoms could be caused by low magnesium. I don't test as having low magnesium, but when I am taking it religiously I do feel a lot better.
4) Don't just take my word for these supplements. Get yourself online and look up the symptoms that are caused by low magnesium. Also look up the ratio of magnesium to calcium that is necessary for the best absorption.
You'll be quite surprised when you see how many of your symptoms are included in the low magnesium symptoms. And remember, as I wrote above, what the medical system considers a normal level may NOT be a normal level FOR YOU....and that goes for Vitamin D as well. I live in a very rainy climate, so the daily recommended dose of Vitamin D is drastically low for people in this climate. My own doctor triples and quadruples his patients Vitamin D supplementation. Each of us is different, has a different stress level, and a different diet........why, therefore, would one "daily dose" be the same for everyone?
When you go to your endo appointment, bring your journal and a list of questions. Record the conversation, because a lot of it will go over your head if you are stressed and anxious.
Have you tried a good antidepressant? Preferably one that helps with anxiety as well, such as Zoloft? That won't solve your medical issues, but it may give you a bit of a lift in mood and energy to pursue the answers you need.
Hold on......it'll get better. Don't let them fob you off by focusing on your mental health issues. Again, did the mental health issues cause the medical problems or did the medical problems cause the mental health issues, right???
Sending you lots of positive energy.
kenzii92818 alex1996
Posted
I am presuming they have checked your thyroid. ..that can cause some of the symptoms you explain..that's a usual first thing they check. Also ..ME is another check they would/should rule out and then cortisol function as I know mine started slowly symptons came and went over a period of tme until it properly hit me with Addisons...don't give up going back to the doctors ask for these checks and say I know something is not right...wish I pushed with my doctors I was always told I had depression ..
alex1996 kenzii92818
Posted
So because you have Addison’s, does this sound similar to your case? Do you believe that there is a good possibility that I could have it?
cool_catalan alex1996
Posted
Effectively, there is no test for Addison's as such as far as I know. Only the symptoms... tell you if you have it. I'll send them to you later.
karen69629 cool_catalan
Posted
I've responded to you in the past because I have had concerns about your postings. There is ABSOLUTELY a test for Addison's and I described it above (ACTH Stimulation test). Please encourage folks to do their own research. First of all, neither of us are doctors. Secondly, checking things out for one's self may end up in an "AH HA!" moment (besides it is very empowering). People that are desperate will grab at straws, so it is very important that people on these forums don't send out straws that, of course, can't be strung into gold (or real facts).
And remember this adage: "The most important thing I learned <in college> is how much I DON'T KNOW." Yes, you wrote "as far as I know" but please refrain from stating absolutes.
alex1996 karen69629
Posted
Also, I am very frustrated because doctors won’t listen. They do all the tests but nothing ever comes back. I feel like my hormones have been tested, but not specifically for this disease. I’m so worried they will miss it and I will go into adrenal crisis and ultimately lose my life to this mystery battle. I’ve tried everything. Calling my doctor tomorrow to get in and see if they can do a blood test.
alex1996
Posted
cool_catalan karen69629
Posted
Thanks for your advice.
I have had the ACTH Stim test twice in 2 different locations with 2 different doctors, because my partner and I wanted to know if we had Addison's disease. I have had an Addison's crisis when I had my 3rd pneumonia in less than 4 years. The readings or our cortisol in both occasions were very low. The diagnosis from the doctors was ADRENAL INSUFFICIENCY. On both occasions we were told to wean off HC. The first time the Professor of Endocrinology in a large city wanted us to wean off 2,5 mg/day of HC every 5 days. We had decided to move to that city, because the Professor had been recommended to us by a prestigious source. We were in a hotel looking for a place to live and waiting for our belongings to arrive. The moment we had tapered off 10 mg of HC we were both lying in bed almost all the time. We sent a fax to the Professor explaining that we run out of energy to function to which he did not respond. In view of that we decided to increase the amount of HC ourselves. We stayed in that city for 5 months and then moved to another city, smaller this time. We then we had another ACTH Stims test and the diagnosis was: ADRENAL INSUFFICIENCY. We tried this time to wean off HC with the help of an endocrinologist who was keeping an eye on us and when we reached, at different times the point of exhaustion, the endocrinologists recommended my partner to take 18 mg/day of HC and myself 20 mg/day of HC. None of the doctors wanted to mention Addison's disease. I was confirmed having had Addison's crisis at the hospital where I was looked after having my 3rd pneumonia at the age of 77. The professor and the endocrinologist we have now have both said that the doctor in the hospital had no authority to diagnose Addison's disease. I have not been to any COLLEGE, my partner from London has explained to me the meaning of 'grabbing straws' . I had 2 teeth roots taken out about a month ago. I explained that to my endocrinologist in my routine visit and he said: 'double the amount of HC you take, for three days.
cool_catalan alex1996
Posted
The first think I thought was Hypothyroidism. Have they tested your thyroid?
If you have the tests, read them. You need to have the FT3 on the high side and the Ft4 also. The problem with the thyroid test is as follows: if your TSH is within the range: DOCTORS WILL TELL YOU ARE NOT HYPOTHYROID. But you do not take notice of a TSH. If you send us your FT3 and FT4 results, somebody, myself will give you the right interpretation. Do not worry about Addison's in your case. Addison's do not give all those problems ok? Can you have private saliva tests for saliva? If you google 'saliva tests' for cortisol that is, (for Addison's, adrenals insufficiency/Cushing's to be ruled out), have them. The pathology center will give you a report. If cortisol is too high or low they will explain things to you. Low cortisol gives anxiety/panic attacks. Have you been tested for ME?
Do not stop, keep trying... I am sendingh you strength across the seas from Australia.
alex1996 cool_catalan
Posted
karen69629 alex1996
Posted
It isn't hard to diagnose.......once one brings it to the attention of the doctor. Other than that, yeah.......sorry to say that it has been my experience to be told "thyroid, chronic fatigue, fibromyagia, overweight, depression, blah, blah, blah." Because of the rarity of this condition, it is one of the last things doctors seem to look at. There is a really good Addison's support group on a UK website. Take a look at the following: https://www.nhs.uk/conditions/addisons-disease/
And remember, while you can get SUPPORT from people on this site, the information you are given should not be taken as gospel. The site above is the from the National Health Services of the United Kingdom. THAT is a reliable site!!! And note, some of your symptoms are listed.
Now, I am hoping you don't have Addisons and that a good doctor will find out what is actually going on for you. But if you do have it, it can be treated. No, life isn't normal. Yes, it sucks sometimes. And controlling stress is a huge factor in staying well. But it also isn't the end of the world. Attitude is Everything!!!
So go search "UK and Addisons" along with the link I gave you above. Find reliable sites and teach yourself.
Find support and encouragement here, but don't expect to get qualified information (even from me!!)
cool_catalan karen69629
Posted
My partner and I contacted https://www.nhs.uk/conditions/Addisons-disease/ asking for help. The thing is that if one does not live in UK or country of origin of a named Association / Foundation etc their advice has limited help. This has been our experience.
cool_catalan alex1996
Posted
I have just come back home from the CBD. I'll send you later the symptoms of Addison's disease. Nothing like what you have believe me.
Roddy999 alex1996
Posted
Please be very very careful about taking supplements that someone on the internet suggested. We've already had a person on this site a year or two ago who was in serious difficulties with undiagnosed illness. In the end it turned out to be vitaminosis! He was poisoning himself with the supplements he was taking. Please please only listen to your doctor, especially your endocrinologist who has had years of training and experience. You are already getting an excellent range of tests. So now you know that you don't have a thyroid problem, you don't have an adrenal problem and you don't have a pituitary problem.
But you are totally stressed out with worry about maybes and might-bes, so has become very hard to see which are the symptoms of the original condition and which are symptoms of your being so worried about it. So maybe your best plan is to ask about how to control the stress and then you might begin to see the wood for the trees,
ricco31108 alex1996
Posted
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