XP: Hashimoto's Disease

jessalynn221

Does anyone have this? apparently i do and i am reading up on it. any insight would be helpful.

thanks

Jewlz018

It has to do with your thyroid right?  I don't personally have it, but have heard of it.

What is your Doctor telling you?  Sending big hugs your way!

jessalynn221

My RE is retesting me tomorrow to see what is going on. Apparently when i went to an endocrinologist last year they found out, but never told me. I was trying to get my test results to send to the RE and when they called me back the doctor said she never tested my TSH levels, but "you know you do have Hashimoto's Disease"! So i kind of blew up at her and said she never told me that. She only told me I was borderline with my thyroid.

Fun!

babyike

My mom had Hashimoto's.  She ended up with a thyroidectomy (removal of thyroid gland) and takes a fairly high dose of Synthroid everyday.  Her scar is just above her clavicle on her neck and it's about 2 inches long.  It kind of looks like a "smile" because it's horizontal but curved upwards. 

She is fine now, and hasn't had any real issues since.  She does know that she cannot use the generic form of Synthroid (she had bad side effects).  I remember when she was first diagnosed her symptoms were pretty intense (extreme fatigue, extreme weight gain, extreme hair loss, a few other symptoms).  I have no idea what the "norm" is for Hashimoto's but this was her experience.  She wasn't TTC, so I'm not too sure how that is.

Have you read the Thyroid Hormone Breakthrough?  If not I highly recommend picking it up. It's all about thyroid and women's health throughout the lifespan and includes sections on TTC.

(((Hugs))) and GL.

EDIT:  That is super crappy about your endo not telling you!!!  I would be FURIOUS! 

katib77

I don't know much about it but I do have nodules (non-cancerous lumps that will eventually become a large goiter if left untreated) on my thyroid that after several years of u/s and biopsy have been told right when we started TTC that the right side of my thyroid should be removed because they're growing rather quickly.  I told them I wanted to try and get PG first but now that we've been trying for 7 months and nine cycles I'm thinking I'll go get it done this spring and start seeing an RE. 

I was told since it doesn't effect my thyroid levels (yet) that I should be fine TTC but I've heard many women say once they got their thyroid levels under control they were able to concieve so think of this as a positive that they're looking into it for you, can treat it, and it can help in your TTC.  I'm so sorry your endocrynologist (sp?) didn't tell you. Good luck with the test & your RE!

jteneback

I don't have any advice but I am sorry to hear this!  Hope you are in good hands with the RE.

minkys_silly_monkey

I really don't know much about it but my mil has it.  She is fine and takes a pill everyday for the rest of her life.  I also have bumps on my thyroid that they just found in nov.  They say that it is pretty comon and they did a biopsy on them and said they were fine.  However now I have to go back every six months to have it checked out.  Oh and I have not vitiamn D.  So ladys have your D level checked.  Sorry about the all about me.

mrsf123

My mom has it.  She's had it for 20 years.  I can find out ANYTHING you want to know. PM me or post here!  Hope to be of help!

Edit: My mom has to take sinthroid but didn't have to have anythign removed so I think there are different stages or degrees of the illness.

mrsz2008

babyike:

My mom had Hashimoto's.  She ended up with a thyroidectomy (removal of thyroid gland) and takes a fairly high dose of Synthroid everyday.  Her scar is just above her clavicle on her neck and it's about 2 inches long.  It kind of looks like a "smile" because it's horizontal but curved upwards. 

She is fine now, and hasn't had any real issues since.  She does know that she cannot use the generic form of Synthroid (she had bad side effects).  I remember when she was first diagnosed her symptoms were pretty intense (extreme fatigue, extreme weight gain, extreme hair loss, a few other symptoms).  I have no idea what the "norm" is for Hashimoto's but this was her experience.  She wasn't TTC, so I'm not too sure how that is.

Have you read the Thyroid Hormone Breakthrough?  If not I highly recommend picking it up. It's all about thyroid and women's health throughout the lifespan and includes sections on TTC.

(((Hugs))) and GL.

EDIT:  That is super crappy about your endo not telling you!!!  I would be FURIOUS! 

This is exactly what I was thinking, sorry you're going through this ((hugs))

jessalynn221

thanks everyone. i am waiting to see what my RE finds out after running all my tests. i am not too sure I want to jump to any conclusions based on what the crackpot endo told me. So since i am getting all the blood work tomorrow am i should find out soon.

lattelady2

Hey, sorry this is a bit late, but I have Hashimoto's. The way it was explained to me is that it is hypo-thyroidism (low) caused by antibodies that attacked your thyroid - it's an autoimmune disorder. I have Diabetes (Type 1) and my endocrinologist found it at a regualr appointment after noticing my thyroid was slightly enlarged.  They know it is Hashimoto's vs. just a low-thyroid because of the presence of the antibodies in your blood.

I'm on 75 mcg of a generic of Synthroid (Levothyroxine). My levels were monitored every 3 months for the first year (I see him that often anyways), and then yearly since then. Its really been no big deal, the biggest hassle is just trying to remember to take that pill in the morning! If you are put on it, be sure to read all the instructions. You have to take Synthroid before you eat, not with milk, and not with your PNV too.

Hope this helps! GL!

weddinginbloom

I have Hashimotos and it was not as dramatic as some of these ladies' posts, so try not to worry until you hear more about your case.  What I was told about it is that the body cycles through hypo- and hyper-thyroidism because of the antibody activity on the thyroid.  I would suggest getting a second (or more!) opinion, especially if you were not happy with your doctor thus far because there are vastly different ways of approaching this condition.  The first endo I went to said "you'll have to take these thyroid pills the rest of your life, increase by X amount when pregnant."  I was like whaat?  The second endo I went to (who was also quite young) put me on gradually decreasing doses and finally had me come off the pills.  My levels have since been fine (it's been 3 years) and I just have them checked every year now.