Why is my body falling apart?

[Dlcochr]

Hello I'm a young female 5'3 115lbs non smoker non drinker never done drugs and have no children,and have always been health until 4 years ago I was diagnosed with dilated cardiomyopathy out of the blue..well I lived with it and meds and therapy and I was back feeling better.. Then my whole body started aching. Everything in my body hurts ALL the time. Muscle, bone neck and chest mostly. Then went to doc for small uti and she informs me that my right kidney has shrunk and is not functioning but they can not figure out why. I always have pain in lower back but I still never got any answers now just the other day my lung collapsed. I will feel amazing and then it's like my body just flares up. Docs have done many test but most are normal. Any thoughts? Does this sound like auto immune? Thanks any answer will help.

[TheLightSeeker]

Can you provide any details regarding your DCM diagnosis, cause-even if only suspected- and treatment protocol?
Have all viral, bacterial, fungal, mycoplasma and parasitic related infective agents, been ruled out?
What about inflammation of heart muscle from immune system disorders, such as lupus? Lupus is somewhat consistent with the kidney involvement
and flare ups.
Has your thyroid function been tested? Have you had Free T3, Free T4 and Reverse T3 thyroid function tests?
There's strong evidence to suggest a Lupus- Hypothyroid connection.

Looking forward to your reply.

Best wishes,
Niko

[Dlcochr]

Hello light sticker I see it's been a very long time since this post. And I'm thankful that you answered back. I'm still going through the same symptoms except worse. I've had dozens of lung collapses and three surgeries since that last post on my lungs. I was diagnosed with catamenial pneumothorax . I still have dilated cardiomyopathy but my EF is up so that's good. My muscles still ache and spasm and my bones feel like they are rubbing together very painful. And everything always happens at the same time. They still haven't found out what is causing it but I think it's getting close. And you are right I was diagnosed with hypothyroidism about a year ago and have been on medicine ever since but it still hasn't change my TSH level and my T4 is low. I was also diagnosed with thalassemia a few months ago which means my red blood cells are very small and I'm anemic so I'm going to have to go see a hematologist soon. So now I'm going to a neurologist because the doctor thinks it could be some autoimmune. Maybe MS or lupus. My husband has lyme disease he has since he was 17 but he was treated thoroughly and hasn't had many symptoms since. So for anybody who's been going through any of these same symptoms just don't give up I've been going for years in and out of hospitals they know that there's something wrong but they don't know what it is. I'm a young woman not overweight non-drinker non-smoker I look completely normal and you would never think that I have already been diagnosed with heart disease.lung disease. thyroid disease. kidney disease. And whatever this terrible muscle pain is. They say that all this stuff is wrong with me but they don't want to put it all together and find out what the 1 cause is
. Because it's not like I have all these things it has to be just one thing causing all these things. And I do research everyday all day and I feel like I'm a doctor LOL because I seem to know more than they do sometimes. But just don't give up. I know some days seem hopeless and full of pain. So hopefully one day we will figure it out.

[TheLightSeeker]

Sorry about all your suffering.
Your chances of improvement through
conventional medical doctors are limited.
Forgive me for being blunt, but the fact is that your unregulated/under-regulated hypothyroidism, remains unresolved while ON medication for a year!
-Thyroid hormones affect kidney function through various mechanisms.
- There are numerous drugs used in kidney disease which may have adverse effects on the thyroid.
- T4 may convert to Reverse T3 (a negative thyroid hormone, further reducing T3)
- Most commonly prescribed hypothyroid medication is synthetic T4 under various brand names.
Contra-indicated when Reverse T3 is
elevated, since T4 is the source for RT3.
Unfortunately RT3 is rarely tested for!
- Iron overload and hypoxia, both effects of thalassemia, may affect thyroid function, which in turn can affect cardiac output and organ integrity (lung,liver,heart etc)

There are far too many possible
associations and interconnections at play here.

My opinion is that you seek a very
competent Functional Medicine Doctor, who can connect all the dots
and facilitate your recovery.


While I'm here, something I forgot to mention, is that when I had been checking out Dr.Barnes work, one particular finding stayed with me.
From ALL the thousands of patients he treated for hypothyroid
(using natural desiccated thyroid ) NONE of these patients developed Lupus.
The ones who had been already diagnosed with Lupus, NONE developed any new signs of organ involvement, while being treated by Dr. Barnes for hypothyroid!

Please let me know if you have any questions.

Best wishes,
Niko

PS. Have you ruled out Lyme Disease and its co-infections?
I know it's a tough endeavor, but it could be a possibility if you were exposed through the exchange of bodily fluids, while you were with your husband, before his recovery.
I could not establish a timeline from the details in your post