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HASHIMOTO

DJG1
Posts: 122
Joined: Jun 2010

Hello Folks,
I am a Tonsil Cancer survivor. Im usually over one the Head and Neck Board. My questions is if anyone here has Hashimoto, or heard of it? I was just diagnosed with it and understand it is a thyroid condition and autoimmune disease. I have done research on the internet and more confused that ever. Once site suggested Thyroid Cancer along with other diagnose. No information was real clear. I have to call my endocrinologist on Monday, but not sure how long before I will get an appt with her. I will also be seeing my GP and Alternative Doc. Does anyone here have experience with this condition and have any information to offer? I need to know what to even ask the doc's.
Thanks,
Debbie

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Hi Debbie,

Welcome to this board. Not sure if you recognize my name, but I'm also over on the H/N cancer board because my partner Mike is 15 months post treatment for Stage 4 Tonsil Cancer. I'm on this board too because I was just diagnosed w/Thyroid Cancer on 8/16.

You will find that the Thyroid is a very complex organ and even when it's removed, it can affect the entire body. Not a simple process. How did they diagnose you with Hashimotos? What kind of labs? Your endocrinologist will help put some of the pieces together.

I've read some articles relating radiation therapy (which I'm sure you received for your tonsil caner)to thyroid disease. The oncologist told us/Mike that he may experience thyroid problems down the road...the gift that keeps on giving-lame joke, I'm sorry :)

Try to take a deep breath and don't freak out. I wish it was an easy "process" but it's not. There is another website which I've found to be a great resource and they have "Hashimoto" section. www.thyroidboards.com.

Hang in there and let us know what the endo has to say!!

Chris

DJG1
Posts: 122
Joined: Jun 2010

Hello Chris,
Yes I do recognize you from over at the Head and Neck board. To answer your questions, a chiropractor made the diagnose. My TPO ab was 169. Funny thing is that this was a blood test my GP did in January of this year, and neither the gp or Endo discussed it with me. I am trying to stay educated on the deasese. I hope to get into my GP this coming week for some answers and not sure when I will get in the Endo office. Thanks for the thyroid site. I will try to get more information from there. I appreciate all you info. I will you the best of luck. Your are right..cancer..the gift that just keeps on giving.
thanks, Debbie

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Okay, so now I have a question spurred on by your Q&A. I have brain cancer and had IMRT, 30 sessions, 15 years ago. At the time, I was told to expect side effects to show up about 15 years later and they have.

I am being treated for hypo-thyroidism (underactive) and I also have problems with my adrenal glands, both of which require meds.

My question is this: If we have had radiation to the thyroid (my hypothalmus and pituitary glands were almost destroyed during the course of my radiation), is is a given that you will develop Hashimoto's or something more serious that could require treatment? I have an endocrinologist (among 7 other docs on the roster) and he has not mentioned anything like that. Is this something I should be worried about and if so, what questions should I ask him?

I appreciate you letting me butt into the conversation here, but the question on Hashimoto's made me wonder.

Thanks ladies!

Teresa

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

The thyca surgery pathology report revealed that I had Hashimotos - but I only found out after the thyroid cancer diagnosis. My TSH was always in range though I did have hypo symptoms often (thinning hair & fatigue, for example). What I now know about Hashis is that patients need to be monitored for nodules on the thyroid - something about Hashis makes one more prone to developing nodules (usually benign). For some, perhaps as yet unknown reason, nodules in Hashis patients can become cancerous, perhaps at a higher rate than non-Hashis patients. I think this is the case, though just based on what I've gleaned - I don't have a particular reference for that. My docs believe that, in my case, Hashis was the thyca trigger. HOWEVER, I must stress that having Hashis does not equate to having thyca or even that you will develop thyca. Just want to be clear on that.

I had external beam radiation myself (to the neck) as part of my thyca treatment. While staying in an ACS Hope Lodge I met a few folks getting EBR to the neck for other cancers and I was curious if docs told them about the risks of thyca from exposure to the radiation. I am not sure what the statistics are like for EBR patients getting thyca down the road, but because EBR makes surgery much more difficult in the area zapped, I wondered if anyone out there recommends thyroid removal prior to EBR. I suppose the direct link may not be strong enough to warrant removing a perfectly functioning part of the body.

DJG1
Posts: 122
Joined: Jun 2010

Teresa,
As far as butting in, welcome. Belive me no problem here. To answer your questions, I have no idea. I am just now trying to find out about Hashimoto.
ALAPAH,
thanks for your info as well. I do know only from research that having radiation does bring the risk of "Cancer" .. Crazy isn't it? we are treating cancer with something that can cause cancer. Radiation can cause cancer in different places, some have lung from the radiation, but I think the thyroid has the higher percentage. I do know that having radiation to the neck area you have a 1/4 chance of your thyroid not working at all. What I am not sure about if cancer of the thyroid is part of the 1/4. I think the risk of Hypo thyroid is very high after radiation. In my case I was HYPO prior to H&N Cancer. I have been taking synthroid for over10 years with no problems. Ever since the cancer diagnose and radiation, they can not get the number elevated. One time they are up the next time they are down. In 14 months I have went from 125 mg all the way down to 88 mg, and back up to 125 again. Today I am at 100 mg and it still is not right. I was told this is one of many of the Hashi symptons.
Thanks to everyone for the information. If I learn more, I will share with everyone.
Debbie

nasher
Posts: 507
Joined: Apr 2010

there have been many people dealing with Hashimoto's that have been here in the past

I do not have experience with it so i don't normally speak for it.

the best answer i can give you is look through the pages of this thyroid cancer board and see what discussions you come up for hashimoto's

you say you are confused and dont understand things.

ask us questions and don't fear asking them wrong... worse case we might be able to improve on your questions and maybe help give you a base line of knowledge so you ask better questions.

what are you confused about

Tullee
Posts: 1
Joined: Dec 2011

Hi I did have Hashimoto for many years before my thyroid was taken out. I had many throat infections and lost my voice 4 or 5 times a year. My thyroid began to harden and put pressure on my throat and i felt i was swallowing a golf ball all the time. I decided to have my thyroid out and this proved to be a good move as they found small Follicular cancer. The Hashimoto is now gone and i cant remember the last time i had a sore throat. I am 6 years post surgery and healthy. My only wish was that had i know what i know now way back then i would have done all i could to get my thyroid working properly. Post surgery i am well and healty but i dont have the stamina that i once had. Dont get me wrong. Every day above ground is a bonus.

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