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.
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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.

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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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1 Replies:

  • Ok well I have hashimoto disease it is a thyroid condition that likes to play tricks! I was diagnosed about 8 years ago when I gained 30 lbs in about 6 weeks after being 98 lbs for all my life. My husband and I wuit smoking and it through my body into a tail spin. I didn't know that smoking masks a potential thyroid problem and when you quit if you have it it comes out full force. With Hashimoto you swing back and forth on the scale so when you feel bad and you go in the levels could have already leveled out. Also the "normal range" of your thyroid is HUGE, not everybody feels good within that range.Lets say the range of normal limits at your lab are a 4.0 to a.04 is normal 4.0 being hypo and.04 being hyper....(may be the oppisite I cant rember (foggy memory lol) anyway I might feel great being a 1.5 but I have to go to a 4.1 before they say hey ok your off. If you find a good endo they can explaine it alot better than I.I hope this helps somewhat!Michelle
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