I have been suffering on and off for the last 8yrs with unexplained problems with my health. I think I have went through every test know to man with out getting any diagnosis and Im tired of trying. I have every symptom of addison's except the dark pigment. I have been told at one point it was chronic epstein barr but with the last round of blood test even that was normal the only high result was chloride level and it was 110. I have reoccuring uti's fatigue, muscle pain, headaches, migraines, low blood pressure today it was 80/40 was put on fludrocortisone. I'm really tired of being tired and feeling lousy. I have ibs. I need to know if there is something we are missing or if I should just give up looking for an answer.
Which tests have you had run? It might be adrenal insuffiency, Have you done a 24 hour cortisol test or ATCH blood test? those will be able to help rule in or out addisons or adrenal problems. Have you had your thyroid hormones tested? Also, have you looked in to Celiac's disease? It's tough to diagnose because sometimes people who have it don't test positive to the antibodies, but it can cause fatigue, weight loss, headaches and would explain the IBS.
I'm just throwing a few things out there because your symptoms are so common in so many diseases!
If they've ruled out Addison's disease, then perhaps you might want to ask your physician about Chronic Fatigue Syndrome. Low blood pressure and low cortisol levels are common in patients who have CFS. Also, CFS patients have a low thyroid but the standard thyroid tests normally fail to detect this (see health pages below for more information). Many CFS patients also have gluten intolerance --- just like patients who have autism and other autoimmune diseases, CFS patients tend to do better on a gluten free diet. You may want to consider going without ANY gluten for at least 2 weeks and see if some of your symptoms improve.
I hope you will consider checking out our health pages on CFS. The newly diagnosed page gives you other possible conditions that you may want to consider having your physician rule out first.
I just had blood work done my thyroid and sed rates were both normal. The only thing he said gave him any concern was another possible uti which he ordered a culture for. I think maybe there is just something they are missing I have had TB when I was 20 it was removed in a lung resection and also treated with drugs for 9 months. (I worked in a nursing home and had toxiemia during my pregnancy so not sure where I contracted it from. Everything seemed fine after that and for about 15yrs I had a complete hysterectomy at age 30 . Then at age 35 everything started changing I thought I had the flu they then said epstein barr, it didnt get better they said fibromyaglia or maybe chronic fatigue they then found out I had osteomylytis which also caused hepatitis. That was treated and I was feeling better for a couple of years. Now it is back with the aches pains tiredness. I will ask my dr. about the test for celiacs and addison's
What was your sed rate result ? The only reason why I ask is because sed rates are within normal ranges in CFS patients, but on the very low end. From our health pages in the fibro/CFS forum:
Sed Rate (ESR) --- The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis.
Wow you have certainly been through a LOT. It's very upsetting when you dont feel well and its hard to find a diagnosis.
Did they run any antibody tests? I know you said your thyroid tests were fine, but did they check Thyroid antibodies such as TPOab or TGab? did they do Anti Nuclear Antibodies (ANA)? These tests can help determine if you are looking at an auto-immune issue specifically. Sometimes you can have a thyroid problem and the Dr. will tell you your levels are normal because they are technically within range. Labs have recently narrowed the range for TSH to .03-3.0 and it used to be to 5. something. For me, i feel like death warmed over when my TSH gets to 4.5, and that is really only just slightly out of normal range and with the old lab reference ranges that would be considered "normal". When i got my dx for Hashimoto's, my T4 was in range (granted on the low side) but if I did not have a sharp Doctor and also a family history of thyroid disease, it probably would have gone over-looked.
Not saying I think this is your thyroid, just worth checking to see what your numbers were and if you have the antibodies. I mean I'm stumped, it does seem like everything that has happened to you could have a connection, I just have no idea what that would be.
Let me know how things go with the AM cortisol test or whatever tests they end up ordering for addison's.... I actually just got an order to do one from my doctor too on thursday so I'll let you know how mine turns out. You and I share a lot of the same symptoms.
I really hope you find some answers! :/
That is super interesting regarding low sed rate for people with CFS. My sed rate was 2. And I asked my Doc about it and she said "oh that is totally normal" hmm.....
I to had/have many symptoms and no official diagnosis. I was in hospital for 7 weeks and they were convinced my problems were adrenal related. They found an adrenal tumour but this is non-functioning so this was ruled out as the cause of my illness. I was diagnosed as having coeliac disease and alot of my symptoms have improved since being on a gluten free diet. I also take Fludrocortisone.
I now have a suspected diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), this can mimic many things, including addisons disease, celiac disease, pheochromocytoma amongst some.
Have a read of some of the posts in the Dysautonomia (autonomic dysfunction) forums. If all tests that you have had have come back as normal then it would be worth investigating in this area.
I've also have POTS and can tell you that many people with CFS and some people who have autoimmune diseases have the condition. I believe that POTS is a symptom... rather than a disease. My problems now are very rare.. since I've begun the appropriate treatment for my underlying condition (CFS).
I to believe that POTS is not a disease, I believe it to be a syndrome with a multitude of symptoms and causes. From literature I have read on this i understand it can be primary in nature or secondary to another illness.
I have not had a confirmed diagnosis of yet (although I did have a positive TTT - hb increase of 60+ bpm) as other causes are being ruled out, including effects of coeliac disease, B12 deficiency and an adrenal tumour. I hope my case is secondary and that by treating the latter the POTS will improve/resolve
I cannot and have not commented on CFS or other autoimmune diseases as I do not know much about these illness' and I would not pretend otherwise. I would be grateful for any information you could give me on these and their relation to POTS.
I believe if battling with an undiagnosed illness it does no harm in exploring all avenues, even if to only exclude.
May I also add I have read some of your posts regarding vaccinations. My 'crash' came after recieving Hep B vaccine and a B12 injection.
Hi ! All of these "syndromes", autoimmune diseases, lyme disease and some other conditions have a common denominator ---- we all share many of the same symptoms and in addition, we all have high frequencies of viral and/or bacterial infections. I've found that when I treated my underlying bacterial infection.. that my blood pressure became more stable and I had less tachycardia (excluding the herxing or detoxing days). Here is a very good presentation on this by Amy Proal:
I'm not surprised to hear that your crash came after vaccinations. I am tired of hearing physicians say, "get the flu shot". My own physician told me that several times last year and when I asked him if he was going to get the flu shot... he shook his head NO ! !
My experience with vaccinations:
When I was a child, I would sometimes get warts on my fingers. I remember a physician/friend who worked with my mother, asked her if she would be willing to allow him to recruit me in one of his research studies. He wanted to vaccinate me with the mumps skin test antigen. After the first vaccination, my temp shot up to 104 degrees. I was very ill, but made a full recovery. This physician simply could not believe that the vaccination caused my reaction... so he asked my mother if she would be willing to let him try again. Well he did try again and guess what ? I had the same reaction ! The physician felt so bad that I remember he bought me a very expensive watch and came over to our house to visit me. I found out later that another one of his subjects had also had a very high fever after a vaccination.... and his research study suddenly came to an abrupt end after that.
In the early 90s, I had allergy shots for 4 allergens. After my first injection, I was told that I would have a red bump on my arm and would need to sit in the waiting room for about 20 minutes. Well, I didn't have the red bump on my arm, but I was very ill the following day after the injection. I called my allergist and he insisted that it wasn't the allergy shot that made me ill. So I was brave enough to try again.... and the same thing happened. My allergist continued to lower the dosage in the shots, but every single time I had an injection.... I became very ill the following day. Despite my allergists advice to continue on, I immediately stopped getting the allergy shots. Years later, two other allergists told me that I made the right decision.
The flu shot. The first or second time that I had a flu shot... I was told that it couldn't make me sick. That was not true. After the infection, I had a slight fever and minor flu like symptoms all week long.
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