Aa
Aa
A
A
A
Close
Avatar universal

My body is a mess and I dont know what to do anymore

Im 35 and female. My medical history is Ehlers Danlos Syndrome and Subclinical Hypothyroidism. I was adopted and both parents are deceased but I did find out some medical history. My bio mother died at age 41 from cirrhosis (drinker) and father died in his 70s from pancreatic cancer. I had an upper endoscopy and was told everything looked good. I had an appointment with a genetic oncologist since my twin sister has had ovarian cancer in the past but I had to cancel due to poor insurance at the moment.

I have enough symptoms with that thyroid issue that I was hoping to start some therapy but I was let down with that by being told I wouldn't start thyroid replacement until my t4 level becomes an issue because currently it's only my TSH that is high.

Now I understand a lot of my problems are from the Ehlers Danlos Syndrome. I had my first joint replacements at age 30 and currently my left SI joint is causing me a lot of issues.

But what I am really writing about and what is really preventing me from being productive, especially at work FATIGUE. The fatigue I am experiencing in my limps is extreme. They tingle, zap, twitch, and just don't seem to have an energy supply to them.  Another issue is I am underweight. In my medical notes from my last visit, I noticed the doctor said I have malnutrition. But I EAT, nonstop. I was thinking for some time that I might have lipododystrophy but then I thought nah, the doctors wouldn't have missed that. I am just so fed up with myself I don't know what to do anymore. It's ruining me. I am afraid to date and I avoid people in general because of their rude comments. Does anyone have any idea what is going on? I have had so many tests that I give up for 1-2 years at a time and then go back to testing. I feel like my fate is to become an alcoholic and just stop trying to get better.
2 Responses
Sort by: Helpful Oldest Newest
13167 tn?1327194124
Ugh. Thyroid issues are so complex.  When they say you have "subclinical hypothyroidism",  that means mild hypothyroidism without symptoms.  That doesn't sound like it applies to you.  Can you find another doctor who will,  on a trial basis,  prescribe thyroid meds for you to see if it helps?  Endocrine issues are an inexact science,  and considering how much you're suffering,  it seems a little flexibility on the part of the doctors is in order.  I'd google endocrinologists,  and see if you can find someone who is willing to try to help out.  Best wishes - fatigue is awful.  
Helpful - 0
Avatar universal
I have no idea about the disease you have, but the thyroid issue isn't a disease per se.  The Tsh test is mostly about your adrenals, and the T4 and T3 and how well they convert to one another is the thyroid test.  Apparently, you don't qualify as having thyroid disease, and if they put you on medication for it your thyroid will die.  They're trying to prevent that.  There are ways of trying to deal with a sub-optimal thyroid without killing it off and you should discuss this both with your specialist and someone who practices natural medicine or complementary medicine, as there are herbs that some find effective for this.  As for the rest, wish I could help, but can't.  Did they test you for nutrient levels?  Did they test you for whether you have a genetic problem with B vitamins?  Becoming an alcoholic has more to do with depression, and it's up to you.  Again, wish I could help, but when you have these fibromyalgia, chronic fatigue type issues it can take a long time to find a doctor who will truly help.  Often you find them at the Mayo Clinic or Johns Hopkins, seldom at your local doctor.  Peace.
Helpful - 0
Have an Answer?

You are reading content posted in the Undiagnosed Symptoms Community

Top General Health Answerers
363281 tn?1590104173
Nelson, New Zealand
1756321 tn?1547095325
Queensland, Australia
19694731 tn?1482849837
AL
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Discharge often isn't normal, and could mean an infection or an STD.
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.