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hashimoto's thyroiditis???!!??!!
Old 02-13-2012, 06:34 PM
 
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has anyone ever hear of this or have this. I have lost a lot of weight and have the shakes amoung other things and had some test done and the doctor said it this hashimoto's thyroid disease. I am trying to learn all I can about it. Any help would be great.


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Got it
Old 02-13-2012, 06:53 PM
 
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I have "hashi's" as well. It is autoimmune thyroid disease. What you need to know is that it often comes along with other autoimmune issues, esp. Celiac disease which is a gluten intolerance ( and could account for weight loss).

Good news is it's treatable- i take synthroid, but it may take awhile to find right level of meds that you feel good on.

Feel free to PM me if you have more questions.
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Old 02-13-2012, 07:00 PM
 
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I have it. Diagnosed in December, still trying to get my meds regulated. My symptoms were weight gain, more joint pain than I usually have with my arthritis, and extreme fatigue. My dr. did lots of blood work, found some strange stuff, and sent me to an endocrinologist. They found a couple of nodules on my thyroid, too, and we are watching them.
I am just beginning to have more energy, but I'm far from back to "normal". I know 1 other person who has had it for about 5 years, she said it's like a roller coaster for her - she'll be fine on her meds for a few months, then nose dive again.
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Old 02-13-2012, 07:23 PM
 
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I have had thrroid disease for 35 years. When I was first diagnosed it was just low thyroid (Hashimoto's). Over the years they narrowed the diagnosis. It remained pretty well controlled with medication until the last few years. Now I go between over-active and under-active (Hashiitoxicosis). I still take thyroid medication daily. I have my blood checked every two months. I usually can tell when I am "off" because I gain weight, get moody and feel exhausted. The best advice I can give is find a good endocrinologist. My GP just was in over his head.
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Old 02-13-2012, 07:51 PM
 
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My dd was diagnosed with this Jan 2010. She's now 17.

The first few months were tough because her thyroid was acting pretty flaky. It took us a few months to find the right dose but now we are there (but that could change if she gets pregnant, etc.)

Anyway, it's very common and the PP is right that it sometimes goes hand in hand with other autoimmune disorders.

Thankfully, most folks with it can control it and feel pretty normal by taking Synthroid and keeping an eye on things.

Here are the hints I would give to someone going down that path:

1) Based on the medical climate where you live, you will have to consider if this is best managed by a primary care provider (a "family doctor" or even a PA) or by an endocrinologist. They will have different philosophies and approaches. My dd was first referred by her pediatrician to a pediatric endocrinologist who came to town once a week from a bigger city. We started with him but he was very much a busy guy and hard to get in with. So after diagnosis, DD went about two months without medication. When we finally did get in with the doctor, he was about 2 hours late with the appointment and saw us for about 15 minutes and was very much a "numbers" guy. Instead of considering both lab numbers and "how do you feel" he treated based only on lab numbers. Then, he didn't want to see her for another four months after that initial appointment and the medicine wasn't really helping much (too low of a dose for her) but he wanted her on the low level for four months before considering changing it. The pediatrician did not want to prescribe the synthroid ("that's for the specialist we referred you to.") So, I called my doctor and she was happy to take her on, so DD switched from her pediatrician to my doctor who now manages her care. The advantages include that we can get in to see the doctor within days and not weeks, that we can go in there five days a week (not just Friday) and that if my dd says "I have been feeling really sluggish" then the MD considers a higher dose without automatically saying, "Oh, but your numbers are okay." The disadvantages are that our MD is not quite as well versed in thyroid issues as an endo would be. But since my daughter's case is not unique in any way, the care is great for us.

2) Sort of coming off the first point... Recognize that your might need to have lower blood values than the next person. While the lab might say you are within normal range, you still might feel tired. If this is the case, ask to aim lower on your Tsh values. Everyone's "feel good" range varies!

3) Ask to get tested often during this first year.

4) Before getting in too deep, consider your approach to drugs to treat it. The standard treatment is Synthroid which is synthetic. There are also natural thyroid medicines such as Armour and Westhroid (if I remember the names right). Do your research and be ready to request whatever seems best for you. Not all doctors are willing to prescribe Armour. One caution: Armour supplies sometimes run low. Our plan was to use Synthroid and if it just didn't work, ask for a few months trying Armour. We've not needed to go that route.

5) Remember, you'll still have tired days. The amount of thyroid medicine you'll get depends on your blood levels from a lab draw. Then, you'll get this constant amount by taking a pill each day. That pill's amount is added to the hormone that your body is barely still making -- and some days your body will make a bit more and some days a bit less. So, expect some tired days. Discuss with your doctor coping strategies for these low days. My daughter takes Provigil on horrible days. When first diagnosed, she took it probably 20 times a year. Now probably once every six months or so. Usually she slogs through a tired day and then the next day, if she still feels tired after breakfast, she'll take one before school so she is not so foggy ("foggy" is a word you hear a lot from Hashi's folks).

6) While for most things generic is fine, please insist on Synthroid (unless you go the Armour route...). While generics might have the same amount of active ingredient as Synthroid, people find that sometimes generics don't seem to work as well -- possibly due to the different binders (inert materials that affect how fast or slow it's released). So, a 75 mcg Synthroid might act different than a 75 mcg thyroid pill by Acme. Now, of course, someone might feel great on the 75 mcg Acme pill BUT the pharmacy might start getting generic thyroid pills from the XYZ corp and since the pharmacy has you down as "generic OK" then they give you whatever generic they have this month. So, while you might find a good generic, there is no guarantee that you'll keep getting the same one -- or that the company won't change their formula. Synthroid is a consistent pill. If your Rx is written for Synthroid, with generics NOT allowed, you get the very same pill with the very same formula month after month and you can figure out the best dosage for you. If you move across the USA or even to a different country, you can get the very same Synthroid. They also have been around a while and probably know not to mess with the binders and other inert ingredients. So, for your antibiotic or pain killer, get the cheap generic, but insist on Synthroid by name. It's a pretty cheap medicine and your goal is to feel as energetic as possible.

7) Even though you feel like crap, please do your very best to treat your body well. Get some exercise, even if it means only a walk around the block or 15 mins of Wii fit. Do something. Good exercise is good for the body and the soul. Eat terrific foods and limit alcohol, caffeine (though a little can give you a lift), junk food, too much sugar, and smoking. Just treat yourself like a queen. And, try to get good sleep.

8) Sometimes things like this can cause depression. Don't be afraid to tell your doctor that you feel depressed or worn out. Don't be a saint trying to gut it out. Get your symptoms treated.


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Thank You all
Old 02-15-2012, 01:42 PM
 
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I am so thankful for all the wonderful information that you all shared with me. I am relieved that it is something that I can manage, I just need to learn how.

Alicia G, wow so much information. I will reference this if I have questions.

Shenanigan.. Thank you and I will PM you when I have questions.

Thanks fish2 and denilou.. you all made me feel relieved.
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