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EndocrineWeb Community Advice

Frustrated, and beyond annoyed with symptoms.

From: shocktrauma2010 - 5 years 21 weeks ago

I went to the endocrinologist well prepared showing my family history, my clear signs and symptoms, and knew my blood was "normal."

Endo was pretty sure I had hashimotos and he said I have a goiter. I knew from an ultrasound previously that I have nodules on both sides.

He ran blood again and included thyroid antibodies. Once again it was all normal except for Vit D. He's not willing to try thyroid meds without bloodwork supporting it.

TSH- 1.40
T4- 1.13
THYROID PEROXIDASE- <10
Vit D- 11

I started exercising and eating better the day the results came in. I also took 50,000iu Vit D 3x per week for 4 weeks. The Vit D has made no difference.

I just gained another 4 lbs! I didn't eat horribly to begin with, but made an effort to eat even better, and always staying within 1200-1300 calories. I exercise with a bowflex treadclimber, and hula hoop (burns a TON of calories) daily. I also use varying workout DVDs because I have back problems and can't do much without pain (I'm in physical therapy).

What do I do now?

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6 Responses

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I stayed borderline Hypo for years. Never treated. Lived with Severe leg cramps and freakish swelling of the hands and arms. Couldn't lose weight to save my life.

Finally a year ago I stopped my normal daily vitamin regimen and dipped over and became really ill. Blacking out, Strong memory loss, Feeling like I lived in a haze. Wide spread pain that crippled me up. I was dianosed with Fibromyalgia and began all sorts of drugs that didn't help and I only grew worse.

I read an article relating Fibromyalgia and the Pituitary/Thyroid glands one night. Next day I begged my family doctor to retest my thyroid. She did. I was full fledge Hypo. She immediately put me on Synthroid. All of my symptoms immediately cleared within 4 hours after the first dose.

That is... until February of this year. The leg cramps came back. I got frustrated and started seeing an Internal medicine Doctor. No help there. Symptoms grew worse. Finger nails got thin and started peeling. Hair became dry and brittle. Skin started feeling slightly sunburned all the time.

4 Weeks ago... Memory started getting very bad again. Wide spread pain came back. Feeling like I was coming down with the flu each night. The feel of mild fever. Internal Doctor tested my thyroid "It's fine. Stay on same dosage"

Got mad and stopped all vitamin/mineral/herbal regimens again.

2 weeks ago... Steadily getting worse. Ulcers developed in my mouth. Extreme joint pain.

4 days ago... Internal Doctor drew more blood for further testing; He's starting to think maybe something is wrong and decides he wants to refer me out to an Endo specialist.

2 days ago... All symptoms are so severe that I started to realize that I was actually dying. Breathing became very short. Stopped breathing for a minute. Boyfriend jerked me back to reality and rushed me to the ER. Blood pressure was 200/152 and heart rate was 42.

Spent the night on a heart monitor while waiting on the Hospital to get their own blood work back.

TSH 6.8
Their range for TSH 2-4

Immediately given Synthroid. BP returned to normal within an hour. Came home this morning.

My advice is this and I say this with caution.

No one seems to think vitamins will effect the blood tests but thru my own experience I have learned they do seem to effect it.

Next part I offer is this, If your symptoms persist; request more blood work 2 to 4 weeks later and give an honest sample with no vitamin/herbal/mineral tampering.

Lastly, When you ask for the exact number of your test also ask for the range and what that doctor considers to be his range.

I wish you luck and hope you keep me updated. It's a long, painful journey I have taken and I hope you don't go through the same one.

Oh I also forgot to mention I weigh 171 lbs. I weighed 178 2 months ago but I switched to a total sugar free diet with eating mostly health food. I probably take in 800 calories per day. It was very hard to switch the first month and even now I'm tempted to cheat but I don't. The ER was surprised I was able to even lose weight at all.

Oh and I see my Internal doc tomorrow for a follow up and the Endocrinologist on May 27th.

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i urge u to find another endo specialist! order the book called the thyroid solution. you can find it online, by rodale publishers. excellent source!

Rebecca M.

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I have had a similar problem, same problem with my weight, and seemed like I had hypothyroidism, all the symptoms, but my blood work is also all "normal" so everyone just tells me I am fine. I sympathize... I wish I could find a functional endocrinologist... from what I have read online, they look beyond just the "normal" test results because what I have read online in many areas of the net is results can be normal and you can have a thyroid condition but are not treated because of the labs... it is controversial I have heard to treat for the symptoms, but I am of the thought... we know our own bodies, if something isn't right, it isn't right... it doesn't mean it's depression just because they can't exactly see in blood (pun intended) that we have X condition.

I have an awful fatigue that never goes away either, do you have that?

Good luck! I'm in the same boat, let me know if they help you... maybe it can help the others of us in the same situation out there.

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Ok I am in the same place, I am 37 and have had MANY of the signs with none of the tests to prove it. I am angry and have stopped putting faith in my DR. so I am going to give you all the information I have and hope it works for you too, I found Idoral on amazon.com it is iodine/iodide in pill form. I take 4 a day in the morning with water. You are to take it and over the first 2-4 weeks you will start to see as your thyroid goes back to the way it use to be when it worked. The Tyroid is the slowest working gland so it may take a few weeks to get your levels back but it has been a week and I took a shower today and had no hair fall out ( the first time in 3 years) I am also not as tired as I usually am. You need your iodine to be 5mg and iodide to be7.5mg so 12.5 of both. If you are in bad shape you may need 4 pills so a 50mg pill is availible for purchase. Do the reading on it and weigh the pro's and con's and I hope it helps you the way it has helped me.Good Luck I am felling better !

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I wanted to update this post.

Shortly after posting I decided to change my diet to gluten free. I have, very slowly, lost about 6-7 lbs. I still have tons of other symptoms.

Recent bloodwork showed TSH to now be 1.50 which is still well within "normal". My regular Dr agreed that I had to have hashimoto's despite normal, but she didn't want to go against the endocrine expert. She sent me for a second opinion.

A second opinion in my area doesn't exist. I asked my Dr is she would be willing to treat and follow me, and she agreed!

She started me on a very low dose of levothyroxine (26mcg).

Hopefully I'll see a difference on the meds.

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So, it has been 14 weeks since you updated us and started on the low dose of T4, how are you doing?
i'm happy that you found someone to try something with you to see if you start to feel better.

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