Strange Symptoms Ruining My Life

Posted by kjmom1116 @kjmom1116, Jan 4 10:08am

I have a ton of issues going on that my doctor doesn't seem very keen to investigate. I'm on here hoping to get some feedback and maybe a push in the right direction towards figuring out what is going on with me.

First I'll give you some background. I am a 31 year old female, 5' 3" 200lbs so definitely overweight. I don't smoke or drink and I don't use illicite drugs. Medically I have diagnosed fibromyalgia which is not currently under any sort of treatment. I have panic disorder for which I take Prozac and Klonopin (prn). I also have chronic migraines, digestive issues and inappropriate sinus tachycardia for which I take Toprol XL. Recent chronic UTI that has been resolved. I do also have a birth control implant which has been in place for 6 years.

Ive been living with most of these conditions for so long that they are just kind of part of my everyday life. However, most recently, I've been having a very strange set of symptoms that have me perplexed. Namely. what feels to me like an adrenalin rush. At least that's the only word I know to describe it. Sort of a very warm sensation that washes over me quickly. As though hot water is suddenly running through my veins. I also get very shaky at the same time and about half the time I get very sweaty, mostly in the hands but it effects my whole body. Similar to when I have a panic attack but not quite the same. It's most likely to happen when I wake up and just after eating. Unlike my typical panic attacks, my heart rate does not increase during these episodes very much at all and my blood pressure remains perfect. My pupils do not dilate although I do get very pale lips and tingling in hands sometimes. Once the episode begins to resolve which can be anywhere from a few minutes to a couple hours, I feel tired and usually get a headache. The episodes also often come and go with just a few minutes in between the waves of that hot feeling and then they slowly get less intense each time before they stop altogether.

I have had routine blood tests, CBC, TSH Cascade, Metabolic panel all mostly normal aside from sometimes having slightly low sodium levels and often my WBC are mildly increased. Ive also been checked for diabetes and an A1C of 5.1 says no diabetes. Blood insulin levels were perfect as well. I've had extensive non-invasive testing on my heart including an implantable loop monitor and an echo and all is well there aside from the tachycardia and some PACs.

Now since the time that these newest symptoms showed up I slowly noticed a few others that got worse over time. For instance I can't seem to lose weight no matter what I do, my body hair has become thick and I also now have facial hair and chest/belly hair which I never had before. It's not terrible. I don't look like a bearded lady but it's certainly bad enough that other people notice. I've not had a menstrual cycle in about 5 years aside from very rare spotting.

That's all I can think to include right now, but if there are any questions I can answer them to the best of my ability. Any help that anyone can provide no matter how small will be so very much appreciated. Thank you in advance for reading this and I apologize for the long winded post.

Interested in more discussions like this? Go to the Diabetes & Endocrine System group.

Hello KJmom116, and welcome to Connect. I am not a medical professional and can't offer diagnostic advice, however, some of the symptoms you describe with the hair growth and weight gain are things that could possibly be hormone related, or related to hormones out of balance. I see that TSH was tested which is thyroid stimulating hormone, and an overactive thyroid could be a cause of anxiety type symptoms. Some doctors test other components for thyroid such as T3 and T4 in addition to TSH to get a better picture of what is happening.

An endocrinologist might be able to look at the big picture of what is going on. Hormones change with aging and menopause, but you are young. Have you considered a consult with an endocrinologist?

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@kjmom1116

I would like to add my welcome to you. I, as well as many other members of Connect, have had hard-to-diagnose problems. As Jennifer, @jenniferhunter, above suggested, I would definitely see an endocrinologist. If you have seen one in the past it might be good to consult again since your symptoms have changed.

Regarding the flushing/warm spells, do you take much Niacin, also known as B3? Large doses of this vitamin can cause flushing.

Also, you do not mention any digestive disturbances. There are some gastric ailments that can cause flushing. Do you have any diarrhea or other digestive problems?

As one last thought, have you looked up all of your medications/supplements to see if any of them have any of the side effects that are similar to your symptoms?

Please remember that it is always your right to advocate for yourself and get a second opinion. Large research-oriented medical facilities, like university medical schools and facilities like Mayo, are often better at diagnosing difficult symptoms like yours.

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I was admitted to the hospital for this exact thing. No answers, but they did finally refer me to the Mayo Clinic! Fingers crossed I hear something soon.

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@kjmom1116 – When I was reading your post it struck me that your symptoms were so similar to my daughter’s illness before she was diagnosed at age 27 with Cushing’s disease.
There is an overproduction of the stress hormone cortisol- it can be caused by overstimulation from the brain to tell the adrenal glands to make cortisol – or the adrenal gland itself is pumping out too much.
She probably had this for years, but it can go in cycles for years, waxing and waning. It is very difficult to diagnose. It is also rare.
My daughter gained a lot of weight over 4-5 years and could not lose it.
She also was diagnosed with tachycardia and treated by a cardiologist with Toprol.
What gets me is that cardiology didn’t pursue testing- it is not normal for a young woman to have tachycardia.
She also suffered from repeated infections.
She was diagnosed with bipolar disorder and treated for it.
It was actually her psychiatrist who diagnosed her with Cushing’s.
He actually looked at her and her features and remembered a lecture from medical school!
As soon as we heard of this we had to find a very good endocrinologist- we found one at a Cleveland Clinic office in Florida. She was quickly tested correctly and referred to another endocrinologist at UVA. It appeared that she had a tiny growth on her pituitary gland. UVA had a dedicated pituitary center.
The growth was removed and all the symptoms disappeared- including the bipolar disorder.
Obviously, this does not mean that you have that diagnosis but there are similar symptoms that don’t make sense. It appears that you have some hormonal problem- your periods and extra body hair.
I don’t know where you live but you have to find a very good endocrinologist. University medical center or Mayo Clinic.
There may be repeat of certain tests because hormone levels go up and down.
I hope I didn’t overwhelm you- it’s a lot to take in.
Can I answer any other questions for you?

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