# New to all this...



## seaandy (Aug 21, 2012)

I was just diagnosed with Hashimoto's a week ago by my military dr and it was confirmed today by an endocrinologist that I just saw this morning. So why am I still so upset?

A little back story&#8230;maybe about a year ago I started to get more and more fatigued throughout the day. As time went by, the worse I felt. I have severe constipation problems (lucky if I go once a week a very tiny bit), headaches, sore muscles all over, I've gained 10 pounds in the matter of weeks with no change to diet (if anything I am eating less and healthier that I ever have), always freezing cold, I have zero patience and irritable, and again, always dead tired. My husband will not let me drive once the sun goes down as he's concerned I will fall asleep driving.

I've been in an out of the doctors complaining about how tired I am and the weight gain and I kept getting a response of "eat less and sleep more". Luckily the dr who kept telling me that was discharged from the Air Force and is no longer my dr. In steps the lovely Dr. Bell and the discovery of Hashi's disease.

I end up in urgent care back in May because I had a severe pain in my lower left side and the only thing they could find was that it looked like I was "full of poo" on an abdominal ultrasound. They sent me on my way with some laxative drink and pills and tell me to visit the bathroom for the next 2 days. That by the way&#8230;didn't work. I make a follow up appointment with my new Dr. Bell and she decides to run a thyroid test on me and sent for a thyroid ultrasound.

Ultrasound results: Diffusely slightly enlarged and heterogeneously hypoechoic, showing multiple tiny hypoechoic nodules throughout. There is diffuse increased flow on color Doppler. These findings are consistent with chronic thyroiditis such as Hashimoto's thyroiditis

Lab Results: May 2012 TSH 3.38 and TPO: 309
Compare that to my old results that my previous crappy dr took which my TSH were 1.84 once and 1.68.
(note: these are the only blood tests my clinic will run on me, gotta love military doctors)

With these results Dr. Bell puts me on Synthroid 50 tab and dulcolax suppositories to make me go and gets me a referral to an endocrinologist.

Now the fun part. I see an endocrinologist this morning and he says Yes dear, you have Hashi's. But you don't have any thyroid impairment meaning hypothyroidism. My TSH levels are completely normal. BUT that doesn't explain why you are having all the symptoms of your thyroid having issues. I just cried and cried. My husband shook his head in disbelief and we are now at the "What the hell do we do now point." The endo shook our hands and left the room. I in the mean time have been crying all day.

I've had a really rough time at work the past 2 or so months. I have energy in the morning but once it hits about 1pm I crash. I cannot stop yawning and I have fallen asleep at my desk numerous times. My coworkers have said "you look horrible in the afternoons as I get pale and just sleepy". I cannot get through an 8 hour day no matter what I try. A few coworkers are being just downright vicious because I've missed a lot of work and I feel like I am being alienated.

Maybe someone here will have a little insight or suggestions? I am confused, frustrated, angry, and sad that no one seems to be able to tell me exactly what is causing my symptoms.
Thanks! Lindsay


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## Keba (Aug 11, 2012)

Let me just say, I'm right there with you!
My TSH level is normal and so my Dr. wants to hold off on med's. Meanwhile, life is hard. I've had to adjust my daily routine, and luckily I only work 3 days a week. On those days I really have to be careful. I try to exercise in the morning and eat a low carb lunch or it's very hard keeping my focus. I found myself really hitting a low, but I started looking at this differently.

I'm trying to do fun things to stay positive. 
I do an early morning bootcamp and this really helps my mood.

How long have you been on the Synthroid and does that help? It seems like me you haven't had all the recommended blood tests ran.

Try not to get discouraged by others. They don't understand. I haven't told anyone at work what is going on exactly for that reason.
I sleep on my lunch break, it helps. Even though I get enough sleep at night.

Did they measure your nodules? How large was the biggest one?
You can PM anytime, I can totally relate and know how frustrating this can be.

Prune juice is my friend, but my family's enemy.


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## joplin1975 (Jul 21, 2011)

Oh, I'm sorry. Very frustrating.

You need to look at your FREE T4 and FREE T3 numbers. TSH is an unreliable indicator. It's used to give us information about PART of the picture, but the FREE tests allow you to see how much unbound hormone is available for your body to use...which would more closely correlate to your symptoms. Do you think the doctor would run those tests?

Many, many, many of us have had intestinal issues related to thyroid disease. Once that is sorted out, our guts get sorted out.

How did you feel on synthroid?


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## Andros (Aug 26, 2009)

seaandy said:


> I was just diagnosed with Hashimoto's a week ago by my military dr and it was confirmed today by an endocrinologist that I just saw this morning. So why am I still so upset?
> 
> A little back story&#8230;maybe about a year ago I started to get more and more fatigued throughout the day. As time went by, the worse I felt. I have severe constipation problems (lucky if I go once a week a very tiny bit), headaches, sore muscles all over, I've gained 10 pounds in the matter of weeks with no change to diet (if anything I am eating less and healthier that I ever have), always freezing cold, I have zero patience and irritable, and again, always dead tired. My husband will not let me drive once the sun goes down as he's concerned I will fall asleep driving.
> 
> ...


If your numbers were good when you saw the new doc that is only because of the thyroxine replacement you were taking. Did he take you off of it?

You may have to go outside to get some medical help and/or start learning as much as you can and start writing letters to the higher ups within the military.

Narcolepsy is part and parcel; I too was afraid to drive.

Your doctors are TSH worshipers and that is bad.

Here is some info on the FREEs.............

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Dr. Mercola (FREES)
http://www.mercola.com/Article/hypothyroid/diagnosis_comp.htm
Dr. Woliner
http://www.thyroid-info.com/articles/freet3woliner.htm

I am sorry you are having such a tough time of it. And I do hope we can help!

See if you can go out of pocket and if this lab is in your area.

That is assuming you are in the US.

HealthCheckUSA
http://www.healthcheckusa.com/


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## seaandy (Aug 21, 2012)

Keba said:


> Let me just say, I'm right there with you!
> My TSH level is normal and so my Dr. wants to hold off on med's. Meanwhile, life is hard. I've had to adjust my daily routine, and luckily I only work 3 days a week. On those days I really have to be careful. I try to exercise in the morning and eat a low carb lunch or it's very hard keeping my focus. I found myself really hitting a low, but I started looking at this differently.
> 
> I'm trying to do fun things to stay positive.
> ...


I've only been in Synthroid 1 week (as of tomorrow) and so far I cannot feel any difference. I have noticed though that I am getting a consistant headache a few hours after taking it in the morning though. (I am drinking a ton of water, taking it on empty stomach like prescribed)
They haven't measured the nodules-- the endo yesterday said that my thyroids weren't enlarged (um the ultrasound said they are) and seemed to brush it off. 
I was definitely not impressed. lol


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## seaandy (Aug 21, 2012)

joplin1975 said:


> Oh, I'm sorry. Very frustrating.
> 
> You need to look at your FREE T4 and FREE T3 numbers. TSH is an unreliable indicator. It's used to give us information about PART of the picture, but the FREE tests allow you to see how much unbound hormone is available for your body to use...which would more closely correlate to your symptoms. Do you think the doctor would run those tests?
> 
> ...


I've only been on Synthroid a week so I haven't felt a difference yet. I have another appointment with my regular doctor on the 10th of September (unless my hubby makes a stink and tries to get me in sooner) and will firmly request to have the Free T4 and T3 ran. I pray that they will do that.


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## seaandy (Aug 21, 2012)

Andros said:


> If your numbers were good when you saw the new doc that is only because of the thyroxine replacement you were taking. Did he take you off of it?
> 
> You may have to go outside to get some medical help and/or start learning as much as you can and start writing letters to the higher ups within the military.
> 
> ...


No, not taken off of Synthroid. He said it wouldn't kill me to take it and it probably won't benefit me either (symptom wise) since my TSH is normal according to him. I haven't had my blood taken since I started the Synthroid (it's only been a week) and my regular doctor wanted to take it again at the end of September. 
If I can get back in to see her soon (have an appt on Sept 10th) then I am going to firmly request the Free T3/T4 test. Seems that is what will give me the most accurate reading. 
Thank you for the info. I am definitely learning alot from this forum.


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## Andros (Aug 26, 2009)

seaandy said:


> No, not taken off of Synthroid. He said it wouldn't kill me to take it and it probably won't benefit me either (symptom wise) since my TSH is normal according to him. I haven't had my blood taken since I started the Synthroid (it's only been a week) and my regular doctor wanted to take it again at the end of September.
> If I can get back in to see her soon (have an appt on Sept 10th) then I am going to firmly request the Free T3/T4 test. Seems that is what will give me the most accurate reading.
> Thank you for the info. I am definitely learning alot from this forum.


I see; I thought you were on the Synthroid longer. By all means keep the appt. w/ the reg. doctor. Labs should be done every 8 weeks and the Synthroid titrated upward every 8 weeks until you feel good. This should be based not on labs alone but clinical evaluation as well.

It takes 8 weeks for the T4 to build up in your system in case you were wondering.


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## bigfoot (May 13, 2011)

seaandy said:


> Now the fun part. I see an endocrinologist this morning and he says Yes dear, you have Hashi's. But you don't have any thyroid impairment meaning hypothyroidism. My TSH levels are completely normal. BUT that doesn't explain why you are having all the symptoms of your thyroid having issues. I just cried and cried. My husband shook his head in disbelief and we are now at the "What the hell do we do now point." The endo shook our hands and left the room. I in the mean time have been crying all day.


I think most of us here have been through the same thing; I am starting to wonder if this is a rite of passage for us. Then the frustration and anger sets in, we grab ourselves by our boot straps, and start looking for answers.

First: You doctor is full of it. It stinks so much, I can smell from it here, LOL. You have a TSH that is elevated and high TPO antibodies. If that's not significant and showing that the thyroid needs to be investigated further (and probably treated), I don't know what is.

Second: Like the great folks here have mentioned, press for getting Free T3, Free T4, and Reverse T3 test. Also push for a Thyroglobulin antibody test, as well as a TSI (thyroid stimulating antibody).

Third: If hypothyroidism is the culprit, and hyperthyroidism has been ruled out, you'll want to see a TSH ideally in the 1.0-2.0 range to start with. Then you can improve on that if needed. But since the "Free" numbers are where the magic happens, you'll want to see those at least in the upper half of the range, if not the upper quarter. The Reverse T3 test will help determine if your body is blocking the active hormone (T3) receptor sites with a "dummy" T3-looking hormone. You could have all the T3 in the world but without a place to go it is near worthless.

Fourth: Don't stop at the thyroid. It can be affected by (and also affect) many other hormones and such. Get cholesterol, estrogen, testosterone, DHEA, cortisol / adrenal, Vitamin D25, Vitamin B-12, liver, Celiac / gluten sensitivity, blood glucose / A1C, etc. tested. It's important to have a baseline of labs to spot any changes going forward.

Fifth: Get and keep copies of all your labs. Otherwise you will be relegated to having a doctor (or medical assistant) say your numbers are "fine" or "normal". Those two words are pretty subjective.

Sixth: Find a second (or third, or fourth) opinion. You could try another endo, or search for a PCP who has a good knowledge of treating thyroid and hormone issues. Call a local compounding pharmacy and see who prescribes T4/T3 combo medications. Or call any local pharmacy and ask who prescribes Armour. That should get you someone who thinks outside of the box. Also check for any "anti-aging" doctors, or even well-trained naturopaths (depends on the state, some can RX meds and order labs). You can peruse the Wilson's Temperature Syndrome website and look for local doctors there, too. You might not have that issue, but you should be able to find somebody knowledgeable about thyroid problems.


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## jenny v (May 6, 2012)

> Now the fun part. I see an endocrinologist this morning and he says Yes dear, you have Hashi's. But you don't have any thyroid impairment meaning hypothyroidism. My TSH levels are completely normal. BUT that doesn't explain why you are having all the symptoms of your thyroid having issues. I just cried and cried. My husband shook his head in disbelief and we are now at the "What the hell do we do now point." The endo shook our hands and left the room. I in the mean time have been crying all day.


First, I'm so sorry you're having to go through all of this. I have Hashi's, too, and unfortunately it's all too often a battle--against your doctors, against your thyroid, against yourself. It makes you feel like death warmed over physically and it puts you on an emotional roller coaster.

Second, give yourself some time to mourn/cry/freak out and then pull yourself up and fight. You know how crappy you feel and you have to be your own advocate a lot of the time. That might be forcing your current doctor to REALLY listen to your complaints or it might be finding a new doctor who will. I'm on my 4th endocrinologist and I've finally found one who is incredible. But it took a lot of time, struggle, tears and anger to get there.

So, basically, it sucks but you're not alone and we're here to help you along the way.


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