Desperately Seeking A Diagnosis (Headache, High BP, Etc)

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Good afternoon all. I'm 25 yo, had always been healthy, thin and do not have BP cases in my family. 

Long story short: for the last 2 years I've been feeling like total CRAP. 

I have visited several different doctors and no one could diagnose me until now 

Main symptoms: headache, weight gain (+- 25kg/ 55 lbs), nausea, high blood pressure (max 170/120), tachychardia (from 80 to 130bpm), fatique and general tiredness. 

I've been submitted to a thousand different tests, including blood, CTs, MRIs, BP monitoring, etc, etc, etc. After many doctors and many tests, one test came up too high: Plasma Aldosterone 35 ng/dl (normal until 31). When repeated, it was 47.5 ng/dl. Renin was tested to calculate ratio (Renin: 0,90 ng/ml/h - Ratio: 52.7). My doctor said I probably had an adrenal mass, and this would explain many things such as high BP. I started researching and learn quite a bit about hyperaldosteronism. 

So recently I had a CT scan which came back clear, apart from micronodules in my liver (all smaller than 5mm and a 2cm mass in my ovary). Adrenal glands clear. Came back to the doctor, and when I asked what else could cause this hormone to be higher she said: NOTHING, only an adrenal mass. Imagine my disappointment in, again, not knowing what I have. Meanwhile, I have headaches every day, I can't lose a single pound and I only keep gaining weight even though my diet decreased in calories substantially - I have no appetite for most of the time. 

I'm done with visiting doctors! First neuro for headache, then cardio for BP, then endocrinologists meanwhile I just sink in symptoms. I'm done having tests, I'm done going doctor after doctor. I just want to live my life feeling GOOD. How I feel is really impacting in my everyday life: I can't function, my work productivity is decreasing, I just want to stay in bed. 

I BEG, please, if someone has been through something like this or even if someone has experience in this field, PLEASE HELP ME. I don't know what to do anymore.

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  • Posted

    Have you looked at dysautonomia at all? Have a google and see if that rings any bells.
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    • Posted

      Nope, I actually never heard about it. I'm gonna check it, thanks for the suggestion!

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  • Posted

    I  understand your desperation. I do not know what  adrenal mass means, I never heard or it !!! Adrenal problems give you LOW BP!!!, NOT HIGH!!! I am on the same boat, trying with the help of mindful meditation (easy said than done when one is to stress out/worried). Look, I think perhaps you are hypothyroid. Again, it is very difficult to get doctors to give you the right tests for that. I get the tests privately. You are young and you have plenty of years ahead of you. To start with, if I were you I'd find a good page to learn mindful meditation. I have been doing it for more than a year. Look into Dalai Lama, or some Buddhist 'reliable' page. I am 80 years(looking 65 as I take care of myself)  fighting my ill health on my own with the help of DuckDuckGo and Mozilla Firewall recently (I was using Google Chrome before). The tests you need for hypothyroidism are: FT3, FT4, Reverse T3, TPO antibodies, Thyroglobulin antibodies, sex hormone binding globulin, Ferritin, Serum Iron, TIBC. I live in Australia where the population is 25 million people spread in a huge country, (distances are big). Good medical help difficult to find.

    But you live I guess in UK? where you can find a holistic doctor or integrative medicine doctor.

    If you had a saliva cortisol test, they are not to expensive, you could rule out any problem with adrenal glands, and the same laboratory where they run these tests can give you a list of Holistic , integrative, functional doctors. My experience with mainstream doctors has been appalling. I hope I have helped you.

    All the very best.

    monsie :-)

     

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    • Posted

      Thats just plain wrong to say adrenal problems only give a low BP. An adrenal mass (tumour) could give a high BP as they often secrete catecholamines such as adrenaline. Take a look at pheochromocytoma for more details
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    • Posted

      PLEASE RED CORRECTION ON MY SECOND LINE FROM THE BOTTOM

      Thanks for your reply

      People, normally do not have adrenal tumors. I should have explained it better. The first thing tatix13 should do is to have the saliva test to discard Cushing's disease and other possible, not very common adrenal problems. She's a young woman. Once the levels of cortisol show that she does not have adrenal problems, then she can check the thyroid gland. With a weight problem that she has I thought  more about hypothyroidism than adrenal tumors. She was worried enough and I am not familiar about that type of tumors to start digging into things that are so unusual. One step at the time. I apologize for not having addressed the thing better.

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    • Posted

      My doctor was suspecting pheochromocytoma in the beginning. These masses indeed stimulate the secretion of hormones which could cause high BP, such as aldosterone.
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    • Posted

      Hey, thanks for the reply and the other reply also. As matt2015 said, high BP is often a symptom of the "secondary hypertension", which is often linked to the adrenals. 

      I had a cortisol test also (blood) and it was also increased. My doctor didn't seem to care much about it. I live in Brazil and I'm fortunate enough to have a health care plan and I don't have to rely in public health, which would be a nightmare and would never get me such answers.

      I also had most of the tests you mentioned, and my thyroid hormones look fine, even though I do have three nodules and two cysts. I guess it's nothing related to the thyroid then.

      I've never heard of these integrative medicine doctor or holistic doctors here in my country, but I'll def take a look and see what I can find.

      Thank you for your quick reply and help. I hope I can find a diagnosis soon!

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  • Posted

    So you live in Brazil... well it is like me, I live in Australia, and nobody knows what is going on here....!

    I explained things to you thinking you were in UK!!!. Sorry I only confused you. I do not understand very well. I still do not understand very well if you have a tumor, are you having any treatment for it?

    As for the hypothyroid tests, doctors in any country are prone to say : 'everything is fine' 'you are not hypothyroid'. Then, as one learns more, and finds ways away from the mainstream doctors, one can fine tune into the 'results'... and one find out that one is HYPOTHYROID.

    To have high cortisol levels you say, it is important. How high? Mainstream doctors do not care about it... I wish I could tell you some stories about blood tests 'interpretations'. Now, I understand you have to stay with the health system... I'd appreciate very much if you can tell me exactly what is the situation with your adrenal mass. is it being treated? Thanks, monsie

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    • Posted

      Hey. I do not have na adrenal mass, as I said in my first post. I do not have a mass/tumor as far as I know. What i said is that my doctor told me the only reason for aldosterone increase would be na adrenal mass, what was not found in my abdominal CT.

      I do not have hypothyroidism, this one is rather easy to diagnose due hormone dosage. I've had these hormones tested three times so I'm positive it's not that.

      ?And no, I'm not being treated cause no one seems to know what's wrong with me.

       

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  • Posted

    I'm 21, and I'm having the exact same issues other than weight gain. I have yet to go through as many tests, but I have had blood work and an EKG done. Those came back fine. My doctor basically has no idea what to do with me, and it's frustrating. rolleyes My next step is to see an internist. 

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    • Posted

      You are lucky, no weight gain! enjoy that one... I mean it thing about the good things you have in your life, keep writing them down... and go to see an internist. Take the results of your latest tests with you, do not forget.
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    • Posted

      I know right! It's so so so damn frustrating. I can't cope with feeling so sick all the time and doctors not knowing anything. I wish you luck and hopefully we'll get a diagnosis soon. Let's keep in touch!

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  • Posted

    Hello, well first of all your Dr. is terribly uninformed about how only a mass can cause hyperaldosteronsim.

    There is this procedure that can be done called an adrenal vein sampling. Basically they will take blood samples from both of your adrenal glands and find which one is producing the high aldosterone. In a lot of cases, even though someone may have a mass it's not necessarily coming from the the mass. So sometimes doctors take out the wrong adrenal gland.

    It's not a fun procedure but it is necessary and can give you the diagnosis you need!

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    • Posted

      Hey! Yes, ever since I got these high adrenal hormones I've been researching and I've came accross the adrenal vein sampling exam. However, if my doctor do not "request" it, I can't have it. 

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  • Posted

    So, UPDATE. I've had another appointment with another endocrinologist. He proceeded to tell me there's many reasons for aldosterone increase. Anyways, he ordered another bunch of blood and urine tests and I'm waiting for the results to come back to another appointment.

    ?He told me something has to be wrong, there's no way I have all those symptoms, altered test results and not have anything, we just have to find it. HOW GREAT!

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