PoisonedApple
Member
- Joined
- May 4, 2015
- Messages
- 8
So, I've been lurking (reading without registering/posting) these pages for quite awhile as I've been seeing doctor after doctor, specialist after specialist, and am getting more sick and more frustrated by the day.
Backstory: I'm 26 and female, I grew up in constant very high-stress (neglect, poverty, abuse) type situations, and have always had widespread pain in my joints and muscles. I always attributed this to the fact that I had Lyme Disease at age 4 (and was subsequently bombarded with antibiotics) and subsequently "cured." I didn't always have access to food or medical care, and basically existed on cheap, starchy, grain/carb-laden foods. I was up to something like ~265lbs at my heaviest, even though I was barely eating. No amount of calorie counting, eating the "right foods", exercising, whatever took any weight off me, and so in desperation I decided to try going low-carb. I had all the obvious symptoms of PCOS, and after losing over 100lbs, I was given an official diagnosis (of PCOS and of insulin resistance, as well as excess androgens) and a prescription for metformin, and lost a few more pounds. I had never felt better in my life - I had energy, I was an appropriate weight, etc. Granted, I was still depressed and less functional/energetic than most people, but it was the best I'd ever experienced, and was okay with that. I kept the weight off for ~5 years, because every time I started to increase my carb intake, the weight would come back on LIGHTNING fast - and it wasn't just water. Something that took a week or two to gain would take months to lose again, so it just wasn't worth it to me.
In the last year or so, my health took a nosedive. I graduated from my university and lost my insurance, found a job soonishly, and have insurance again elsewhere. But over the last year - no matter *what* I eat, no matter what macronutrient ratios, calorie counts, whatever - I've regained almost 50lbs. Again, this is after keeping the weight loss of ~120lbs off for five years. It's not because I don't know how to count or measure, it's not because I'm not willing to try all the different methods and styles of eating that I can. I had to unlearn and relearn how to eat before, and I've got no problems doing it again. Changing the style of my eating has had zero effect. Even eating *nothing*, I gain weight ... Some days I'm so exhausted that I collapse straight into bed after work, without even bothering to undress, let alone eat. Additionally, the muscle and joint pain has gotten unbearable. Worse than it's ever been - crippling. The fatigue is out of control. I'm sleeping way too much, not getting any rest. I don't have the energy to do anything, see anyone anymore. I've lost more than 50% of my hair. I used to constantly be hot, and now I'm always freezing. Friday, for example, it was 80 degrees and I was wearing a sweater, and my fingers were still bluish from how freaking cold I was. I've been diagnosed with fibromyalgia, chronic fatigue syndrome, reynaud's, etc. There are ANAs in my blood (but no rheumatoid factor, so I "don't" have RA).
The circle of specialists all defer to one another: they all send me to each other to treat my symptoms but nobody wants to address the underlying problem. In the last 6 months, I've gone from 4 medications to 14 - and yet my quality of life isn't getting any better. The weight gain isn't slowing or stopping. The pain is getting worse every day.
I went to a naturopathic doctor outside my insurance to get some labs run that my rheumatologist, endocrinologist, etc wouldn't run. Here's what we found:
TSH 3.17
Reverse T3: 17.6 ng/dl (Ref Range 9.2 - 24.1)
Thyroxine (T4): 12.4 ug/dL "High" (4.5 - 12.0)
Triiodothyronine, Free: 3.3 pg/mL (2.0 - 4.4)
Both kinds of thyroid antibodies - negative
Cortisol: 30.1 ug/dL "High" (6.2 - 19.4)
Lyme tests - negative
HNK1 (CD57) Panel
% CD8-/CD57+ Lymphs: 2.0% (2.0 - 17.0)
Abs.CD8-CD57+ Lymphs 40 "Low" (60 - 360)
No HIV/AIDS
Epstein-Barr, Parvo, Cytomegalovirus, HHV-6 - all positive
________________________
To me, it's glaringly obvious that I have a thyroid problem - most likely some kind of thyroid hormone resistance. How can my TSH be over 3, with "high" T4, and "normal" T3, and yet I have almost *every* symptom of hypothyroidism? The only symptom I don't have is a low pulse (mine is elevated; more on that in a minute) but no doctor, not even the naturopath, will consider my request to let my try some T3 to see if it helps.
What do I do now? I'm miserable, and I'm in danger of losing my job (and therefore insurance) because of my exhaustion. I'm crippled by my anxiety - I've never even learned to drive a car, for example. My hands, feet, and face are swollen EVERY MORNING and I can hardly use my hands/wrists. My knees and hips were my worst joints before, and they've gotten SO. BAD. that I can barely walk around. I have a low temperature when I wake in the mornings, but it "normalizes" throughout the day.
________________
Medications BEFORE all of this:
Bupropion XL 300mg (NDRI; can raise heart rate) (antidepressant)
Adderall XR 30mg (stimulant; can raise heart rate) (ADHD)
Metformin 500mg 2x/day (insulin resistance)
NuvaRing (for the agonizingly painful periods from PCOS; settled on this because the pill exacerbated my symptoms)
________________
Medications now:
All of the above PLUS -
Acyclovir 800mg 3x/day (for all those 'opportunistic' viruses)
Prazosin 1mg before bed (recently stopped taking; it was for PTSD/nightmares but when I take it, the dreams are worse and I can't physically get out of bed the next morning, it's like I'm paralyzed)
Naproxen 500mg
Meloxicam 15mg
Methocarbomol 500mg (3x/day "as needed")
Vitamin D - 50,000 units 1x/week
Fluconazole 1x/week (because if I don't take it once weekly, I get a yeast infection that wont go away. Took a month to get rid of...)
Amitryptiline before bed (I also stopped taking this: I also couldn't get up after I took it)
Spironolactone 25mg 2x/day
...and holy crap, I can't remember the other one?
_________________
I want to be off almost all of this crap. I'm so desperate, at the end of my rope here, and I'm really sick of being told that it's all happening because I'm depressed instead of the fact that constantly being fatigued and in pain and not fitting in any of my damn clothes is depressing. I don't WANT to go on ANOTHER antidepressant. And I *know* it isn't all the medication CAUSING this to happen, because I'm only on these things BECAUSE it's happening. They're ALMOST ALL new medicines.
It seems to me like the writing is on the wall, that it's glaringly obvious that I NEED some T3...but I'm stuck.
Ask me anything if I've left anything of interest out - I'm an open book. A desperate open book.
Backstory: I'm 26 and female, I grew up in constant very high-stress (neglect, poverty, abuse) type situations, and have always had widespread pain in my joints and muscles. I always attributed this to the fact that I had Lyme Disease at age 4 (and was subsequently bombarded with antibiotics) and subsequently "cured." I didn't always have access to food or medical care, and basically existed on cheap, starchy, grain/carb-laden foods. I was up to something like ~265lbs at my heaviest, even though I was barely eating. No amount of calorie counting, eating the "right foods", exercising, whatever took any weight off me, and so in desperation I decided to try going low-carb. I had all the obvious symptoms of PCOS, and after losing over 100lbs, I was given an official diagnosis (of PCOS and of insulin resistance, as well as excess androgens) and a prescription for metformin, and lost a few more pounds. I had never felt better in my life - I had energy, I was an appropriate weight, etc. Granted, I was still depressed and less functional/energetic than most people, but it was the best I'd ever experienced, and was okay with that. I kept the weight off for ~5 years, because every time I started to increase my carb intake, the weight would come back on LIGHTNING fast - and it wasn't just water. Something that took a week or two to gain would take months to lose again, so it just wasn't worth it to me.
In the last year or so, my health took a nosedive. I graduated from my university and lost my insurance, found a job soonishly, and have insurance again elsewhere. But over the last year - no matter *what* I eat, no matter what macronutrient ratios, calorie counts, whatever - I've regained almost 50lbs. Again, this is after keeping the weight loss of ~120lbs off for five years. It's not because I don't know how to count or measure, it's not because I'm not willing to try all the different methods and styles of eating that I can. I had to unlearn and relearn how to eat before, and I've got no problems doing it again. Changing the style of my eating has had zero effect. Even eating *nothing*, I gain weight ... Some days I'm so exhausted that I collapse straight into bed after work, without even bothering to undress, let alone eat. Additionally, the muscle and joint pain has gotten unbearable. Worse than it's ever been - crippling. The fatigue is out of control. I'm sleeping way too much, not getting any rest. I don't have the energy to do anything, see anyone anymore. I've lost more than 50% of my hair. I used to constantly be hot, and now I'm always freezing. Friday, for example, it was 80 degrees and I was wearing a sweater, and my fingers were still bluish from how freaking cold I was. I've been diagnosed with fibromyalgia, chronic fatigue syndrome, reynaud's, etc. There are ANAs in my blood (but no rheumatoid factor, so I "don't" have RA).
The circle of specialists all defer to one another: they all send me to each other to treat my symptoms but nobody wants to address the underlying problem. In the last 6 months, I've gone from 4 medications to 14 - and yet my quality of life isn't getting any better. The weight gain isn't slowing or stopping. The pain is getting worse every day.
I went to a naturopathic doctor outside my insurance to get some labs run that my rheumatologist, endocrinologist, etc wouldn't run. Here's what we found:
TSH 3.17
Reverse T3: 17.6 ng/dl (Ref Range 9.2 - 24.1)
Thyroxine (T4): 12.4 ug/dL "High" (4.5 - 12.0)
Triiodothyronine, Free: 3.3 pg/mL (2.0 - 4.4)
Both kinds of thyroid antibodies - negative
Cortisol: 30.1 ug/dL "High" (6.2 - 19.4)
Lyme tests - negative
HNK1 (CD57) Panel
% CD8-/CD57+ Lymphs: 2.0% (2.0 - 17.0)
Abs.CD8-CD57+ Lymphs 40 "Low" (60 - 360)
No HIV/AIDS
Epstein-Barr, Parvo, Cytomegalovirus, HHV-6 - all positive
________________________
To me, it's glaringly obvious that I have a thyroid problem - most likely some kind of thyroid hormone resistance. How can my TSH be over 3, with "high" T4, and "normal" T3, and yet I have almost *every* symptom of hypothyroidism? The only symptom I don't have is a low pulse (mine is elevated; more on that in a minute) but no doctor, not even the naturopath, will consider my request to let my try some T3 to see if it helps.
What do I do now? I'm miserable, and I'm in danger of losing my job (and therefore insurance) because of my exhaustion. I'm crippled by my anxiety - I've never even learned to drive a car, for example. My hands, feet, and face are swollen EVERY MORNING and I can hardly use my hands/wrists. My knees and hips were my worst joints before, and they've gotten SO. BAD. that I can barely walk around. I have a low temperature when I wake in the mornings, but it "normalizes" throughout the day.
________________
Medications BEFORE all of this:
Bupropion XL 300mg (NDRI; can raise heart rate) (antidepressant)
Adderall XR 30mg (stimulant; can raise heart rate) (ADHD)
Metformin 500mg 2x/day (insulin resistance)
NuvaRing (for the agonizingly painful periods from PCOS; settled on this because the pill exacerbated my symptoms)
________________
Medications now:
All of the above PLUS -
Acyclovir 800mg 3x/day (for all those 'opportunistic' viruses)
Prazosin 1mg before bed (recently stopped taking; it was for PTSD/nightmares but when I take it, the dreams are worse and I can't physically get out of bed the next morning, it's like I'm paralyzed)
Naproxen 500mg
Meloxicam 15mg
Methocarbomol 500mg (3x/day "as needed")
Vitamin D - 50,000 units 1x/week
Fluconazole 1x/week (because if I don't take it once weekly, I get a yeast infection that wont go away. Took a month to get rid of...)
Amitryptiline before bed (I also stopped taking this: I also couldn't get up after I took it)
Spironolactone 25mg 2x/day
...and holy crap, I can't remember the other one?
_________________
I want to be off almost all of this crap. I'm so desperate, at the end of my rope here, and I'm really sick of being told that it's all happening because I'm depressed instead of the fact that constantly being fatigued and in pain and not fitting in any of my damn clothes is depressing. I don't WANT to go on ANOTHER antidepressant. And I *know* it isn't all the medication CAUSING this to happen, because I'm only on these things BECAUSE it's happening. They're ALMOST ALL new medicines.
It seems to me like the writing is on the wall, that it's glaringly obvious that I NEED some T3...but I'm stuck.
Ask me anything if I've left anything of interest out - I'm an open book. A desperate open book.