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Old 04-09-2010, 11:59 AM   #1
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autoimmune disease? please help

Hi


I am confused, I hope someone can help.

I was diagnosed with 'auto-immune disease' a week ago, because my TPO was 488 in a range of 0>35.

Here are my other results.

TSH 2.24 in range of 0.28-3.89 mIU/L
T4, FREE 0.82 0.61-1.12 ng/dL
FERRITIN 22.7 10.0-154.0 ng/mL
THYROXINE (T4) 9.3 4.5-12.8 ug/dL
T3 UPTAKE 35 32-48 %


Is it normal to have your levels change in the matter of weeks? My primary DR ran labs and then the ENDO DR ran labs a couple of weeks later and they are not the same.

Ok, so I had an ultrasound before finding out I had an autoimmune disease. I guess the tech misread the ultrasound because what she thought were nodules, are because my thyroid is abnormal b/c of the autoimmune. I did have 1 small nodule that is inflamed, but not large enough to have a biopsy. I have an enlarged goiter and the Endo DR said that my thyroid looks exactaly how 1 looks when they have an autoimmune disease. Needless to say, my visit today was pointless. Had they run the TPO test from the beginning, they would have known what they were looking at when doing the 1st ultrasound. Now.. my questions. I researched and see that the thyroid related autoimmune disease are Graves or Hashimoto's.. I have mostly ALL of the classic symptoms of Hashimoto's and have for a very long time. Because my other levels are 'in range' does that mean, I do not have hashimoto's? The Endo DR wants to meet again in 1 YEAR. I told her NO, because I have all of these symptoms and i really need treatment. She had a 'reason' for every symptom, such as 'the reason you are always cold, well girls are always cold' .... Then she said we can check the levels again in 2 months, but since my other levels are in range, just need to wait and see, and if they got hypo, then i can get medication.

I really thought I would have meds to help my symptoms. I've been feeling terrible for YEARS and what if this continues to go untreated? Can someone please explain what it is to have an autoimmune disease with that TPO, yet the other levels are ok? Do I not get treatment and just wait for it to attack my thyroid and kill it, or just wait for my levels to get to where they go hypo and get meds. ugh !! I'm so aggy.

Thanks

 
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Old 04-09-2010, 06:22 PM   #2
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Re: autoimmune disease? please help

Hi,

I am in the same boat with similar numbers, and am in the process of getting an appt to see the 3rd endo to see if he will treat!

One thing you can do in the meantime is ask your doctor to check Vitamin D, iron, etc. to see if any of these are contributing to your symptoms.

I wish I had better advice! Good luck!

 
Old 04-09-2010, 07:43 PM   #3
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Re: autoimmune disease? please help

Quote:
Originally Posted by tiredpuppy View Post
Hi,


I am in the same boat with similar numbers, and am in the process of getting an appt to see the 3rd endo to see if he will treat!

One thing you can do in the meantime is ask your doctor to check Vitamin D, iron, etc. to see if any of these are contributing to your symptoms.

I wish I had better advice! Good luck!

Does vitamin d and anemia cause autoimmune disease? I know my iron is sometimes low. That was also checked, but apparently raised no concern. Is this the 3rd different endo Dr u are seeing? what are your experiences with them?

 
Old 04-09-2010, 09:26 PM   #4
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Re: autoimmune disease? please help

The autoimmune disease that you have is Hashimoto's thyroiditis. It's the leading cause of hypothyroidism in industrialized nations. You are hypothyroid now, based on your TSH and free T4. That needs to be treated now, not watched for years until your levels reach some 'magic' place that's good enough for your stupid endo. I would ditch her in a heartbeat. She's trouble that you don't need now.

"In range" levels aren't necessarily your particular optimum levels. Your free T4 is about 40% of its range; an average healthy person would have FT4 of around 70%, sometimes higher. You're in the same predicament as a woman whose foot measures a 9 being told that she should darn well be comfortable in a 7 because it's within the standard women's size range. Not!

If your free T3 is similarly low, the combination is sure to create multiple hypoT symptoms, as you have discovered. Yet your stupid MD apparently places no value on free T3. She didn't even bother to have it tested. The thyroxine and uptake tests she ordered are completely useless, revealing nothing useful about your thyroid status.

If this continues untreated, you may develop some permanent physical damage that will destroy your well-being. I met a woman on this board a few years ago whose trusted family doctor refused for all of her adult life - for well over 20 years - to treat her hypothyroid unless her TSH reached 10. By the time it did, when she was in her late 50s-early 60s, she was in congestive heart failure due to hypoT. After she learned that a better doctor would have treated her sooner, she felt betrayed and defeated. This kind of stuff happens every day. Don't let it happen to you. Educate yourself about every aspect of the disorder, because it's likely you'll have to advocate for yourself to get what you need. I don't think you'll get it from that so-called "doctor". ("Girls are always cold." ?!?!?! Give me a break!)

Science has yet to figure out why the autoimmune disease process starts. So asking how you got this is futile. No one really knows. Although they're working on some hypotheses, nothing has been yet proven.

Good luck!

Last edited by midwest1; 04-09-2010 at 09:28 PM.

 
Old 04-10-2010, 09:21 PM   #5
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Re: autoimmune disease? please help

I have Hashimotos, and was diagnosed in January after feeling sicker and sicker for an entire year. My numbers looked like your TSH and free T4 and I had the high antibodies and positive ANA, but I didn't know any of that till I pulled my own labs nearly a year later (though I was getting my thyroid levels checked every few months along the way due to my symptoms). I also have a family history of auto-immune diseases, and my mom died of complications from an auto-immune disease (Behcet's), so none of this was a surprise to me.

I was finally treated by a P.A., not an endo. I have never yet seen an endo, but I have an absolutely fabulous P.A. who is watching everything, treating me, and who has even ordered the free T3 that most docs won't order. Additionally, she has increased my meds even though my numbers look great, because I have still been dealing with the same symptoms and haven't had much relief even though things look great on paper.

I felt absolutely, positively horrible when my numbers looked like yours. I had flu-like aching constantly, could hardly stay awake, was freezing all the time (and I live in a warm climate), etc. etc. Now my numbers are vastly different (TSH .66 and free T4 1.05) and I'm still feeling so tired much of the time, my hair is still falling out, I'm still cold, can't lose the 16 pounds I've gained despite diet and exercise, etc., but I am definitely feeling more energy than I felt two months ago - so it is starting to get better. I was increased from 50mcg levothyroxine to 75mcg levothyroxine, despite the above numbers, because the P.A. is going by my symptoms and not just my numbers.

I still have a lot of issues that I've had for years - neurological stuff, nearly-constant swelling of feet and ankles, etc. But that may or may not be due to Hashimoto's - I'm not exactly sure.

Find another doctor. You don't have to be stuck with an endo. You can get treatment from a P.A. (so far I have seen two female P.A.'s and they are both wonderful, good listeners, and willing to treat - I am sticking with one in particular, but both are good), family doc, etc.

I don't think that some doctors understand that when you are dealing with the auto-immune component, having numbers "in range" doesn't tell the whole story. The antibody attacks cause a whole host of problems and I can definitely say that I have felt far less achy at the lower TSH. If you're feeling icky, find another doctor who will treat you!

 
Old 04-11-2010, 10:47 AM   #6
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Re: autoimmune disease? please help

Hi,

Yes, it will be the third endo. I have also seen a rheumatologist, family practice doctor, my OB/GYN, etc.

The first endo said that everything was normal, but ordered more tests (Vit D, Iron, etc.) when I started crying in his office, and the tests came back showing I was very low in those areas. He recommended that I go to Costco and buy over the counter weight loss products like Alli (which the prescribing info says is not good for people with thryoid problems).

The 2nd endo said that there was just "too much going on" and I should wait until some of my other health problems got better before trying to treat the thyroid.

Both endos wanted to see me again after a few months.

The family practice doctor said that my hair falling out was normal for my age. The OB/GYN said it was normal for me to be forgetful, etc.

The 3rd endo is a specialist at a major medical center so his first appt is in June, so I am waiting now....treating symptoms until I can find a doctor that will treat the underlying problem.

Good luck!!

 
Old 04-12-2010, 07:04 AM   #7
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sadiebabie HB User
Re: autoimmune disease? please help

Thank you to those who replied

It really makes me ANGRY to see how many people are in the same boat or not getting treatment because they haven't hit that range' YET". .I read that auto-immune disease is NOT curable, which means it will only KEEP happening until it eventually kills my thyroid. It's just having all of these symptoms for SO long and not knowing the cause, then finally finding out about all the thyroid issue and seeing mostly EVERY SINGLE SYMPTOM is there, it's like finding out the sky is blue. Now, to be denied treatment to possibly help? Ugh. I am sure my ENDO is a newbie in the field.. She got pretty shocked at how I refused to take NO for an answer. But I am going to see what my DR says now or find another Endo... bleh!

 
Old 04-15-2010, 07:25 AM   #8
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Re: autoimmune disease? please help

Ive recently been diagnosed with Hashimoto....I have always been hypo...and then all of a sudden my levels showed too much thryoid which means hyper. I went for a thyroid scan and then the doc saw me. He told me that i had both symptoms and that my thyroid was doin a flipflop.
He gave me methimazole 10mg once per day. I got back in another 2 weeks for blood work.
I have felt no different and my symptoms are the same.
I dont understand alot about thyroid. Its really confusing.
I have alot of excess weight that just wont fall off and Ive tried everything.

 
Old 06-08-2010, 09:38 AM   #9
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Re: autoimmune disease? please help

My TSH levels are went up, so the synthroid was decreased from 75 to 50; then went way down, so the synthroid was increased by 2 extra 50s a week [talk about a confusing dosage: 1 pill 5 days a week, 2 pills 2 days a week??], and I do think my energy levels are stabilizing. But no explanation for the swing. Anybody know why this happens?

As to losing weight. I've had hypo for 8 years, gained weight that nothing seemed to remove. Got a new internal medicine dr, and as he was leaving the room at my last appointment where I had complained about weight gains, he turned around, looked at me, and said "do more."

So I did. Joined a gym and gradually got into serious cardio burning programs. Those skinny lime green capris now fit me again! Took a lot of hard work, but now I love working out, and how I look and am feeling better.

 
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