Discussions By Condition: I cannot get a diagnosis.

Hypothyroidism with normal levels? Help!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • July 26, 2009
  • 04:53 AM

This is from another post I put somewhere else, because it's too darn long to retype (sorry! lol). summary at the bottom.

Ok, my thing here is a little complicated. I already know very, very well about starvation diet, etc, and that is not the case here.

I got very sick when I was 13 (CMV). My throat swelled up to a pinhole and I *literally* did not eat for a month. I don't really remember that month, just that I had to drink a lot of Sprite and water, and Sprite now grosses me out forevermore.

After getting sick, within 6 months I was dry-heaving and vomiting all the time. Maybe 3-4 times a day. Half of my hair also fell out. Doctors say its in my head (what?!). Goes on for years, accompanied by a too-many-painkillers-and-turned-my-head-too-f ast feeling. The vomiting turned to blood eventually, and I pretty much vomited blood daily for a period of a couple years. 4 Upper GIs and 7 pills later, because they can't find anything "it must be in my head". Right. It lasted until I was about 17 or 18, and sort of tapered off. Now I maintain with a certain decriminalized substance that has proven to be the *only* thing keeping me from feeling like that. And no, that's not a factor, I used it before I was sick, no metabolism problems. So anyway.

So anyway, ever since then I have also had severe thyroid symptoms..my hair falls out (and is thinning very much so, and has for years; my bf was concerned when he saw it), my nails are dry, brittle and literally peel off, I have pretty much no eyebrows on my outer third (hallmark symptom of hypothyroid), my skin is dry, my temperature regulation is awful, my mind is foggy and I feel very lethargic. Yet, every doctor (the 3 out of 8560945 that would listen and test me) tells me "my levels are fine" but when I get my hands on some meds, I feel *incredibly* better. But you know, as long as the tests say nothing, just like me vomiting blood (can you tell I am disillusioned with the medical system? and i am pre med!).

So through the years. by trial and error, I found I could no longer eat more than 1000 calories a day without gaining a tremendous amount of weight *every week*, as much as 5lbs in some cases. I even tried raising it to 1200, then to 1500, and resulted in over 30lbs of weight gain. Literally had to starve myself to get it off, less than 600 calories a day (I know that is absurdly unhealthy) and exercising 6 days a week, I was still barely, if at all, losing weight. Maybe a pound a week on 600 calories a day and 6 times a week of exercise. That is absurd.

After a year, I got back to 120. My body was happy, I was happy, I felt great, my thyroid conditions seemed to really ease off, and I was happy and not so insane anymore. I was eating about 8-900 a day (all good stuff, lots of multivitamins etc) and working out lightly 6x a week while being active normally, and I felt the best I had ever, ever felt. Even ended up eating close to 1200 a day after a little while, didn't have to think about it, it was just natural.

However, in the following February, about 6 months later, I started feeling awful again. All the thyroid symptoms came back. One week, still doing what I had been doing for a long time, I noticed I had gained about 4lbs that week. I shook it off, but the next week, I gained 5lbs. And this continued for months until I went from 120lbs to about 168, where it sort of leveled off. I am covered in cellulite, something I have NEVER had, even on my arms and knees, I went from a size 3/4 to a size 13/14 in about 3 months. I was a 34B, and now a 38D. My waist went from 25.5inches to 33 inches, and I am now a 27.5 BMI. Very unhealthy, no matter how you cut it.

And now I am back to the point I was before, all but having to literally starve myself to get this weight off. I eat very, very well, lots of protein and some healthy fat, moderate carbs, lots of lean meat, lots of vegetables and moderate fruit. I watch my sugar and fat intake, as well as sodium.

My issue comes when the Burn Rate calculator says that based on me, I burn 1790 calories a day. I find this to be impossible since I gain on more than 800/day now (but do not lose - I have to drop to almost 500 calories a day to lose). Honestly, this sort of massive calorie restriction has put me an inch from an eating disorder for years. It is frustrating and obsessive, and i hate having to limit myself this way. No doctor will even listen to this full story, and if they do they blurt "starvation diet " at me as if I hadn't thought of that. I took about 6 months to work myself up to 1200 calories a day, and I gained over 30lbs. That's not normal.


My symptoms:

weight gain
cold/heat intolerance
motion sickness
nails that literally peel off / have bumps and ridges in them
eyebrows thin, almost nonexistent at the outer ends
very dry skin
hair thinning/loss
mental fog
constipation (without pain - frequency approx. every 3 days, urination is 2-4x daily)
aches in my lower back, ribs and neck

I am also hypoglycemic (minor/moderate - controlled with diet).

Every time i get my thyroid tested it comes back normal.
Limited insurance. ;-\

any ideas?

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