Just add Hashimoto's
 

I had a fantastic (???) visit with an endocrinologist on Friday. I don't think fantastic is the right word but I'll go with it. She took one look at me, my labs and my PET scan from JUNE and Dx'd me with Hashimoto's.

I am NOT CRAZY! I am NOT a hypochondriac! I was really beginning to think I was making myself ill. I sailed through my mastectomy, I worked through chemo, I climbed over radiation and then I HIT A WALL. I had been getting better and better and better and then I was worse and worse and worse than I was during the worst of chemo. And I was certain I was doing it to myself and worse, so was my MO and SO.

I'm feeling pretty vindicated. My endocrinologist was surprised no one brought up my PET scan from JUNE. She has requested a report to go with the images. It's a little depressing that it may have been caught earlier and I may not have had to feel so miserable. C'est la vie! I'm going to be well again and that's all that matters. :)

Oddly and coincidentally, my PCP had run some of these labs in Nov and they were normal. Endo explained it away --- that at the time I was probably very hyperthyroid and coming down as most of my thyroid gland had been destroyed and was dumping T4/T3 into my blood. The nodule my MO imaged two weeks ago was a pseudo nodule and is really the last remaining bit of healthy thyroid tissue (about the size of an M&M).

Don't give up. If you feel worse after chemo chase down an answer. Don't let anyone tell you "of course you feel sick, you just had chemo and radiation" or "it's not uncommon to have depression after chemo and radiation".

As for that new puppy....it's on hold again. I can barely put my shoes on, never mind try to house train and socialize a baby Rottweiler.

Re: Just add Hashimoto's
 

What is Hashimoto's??? I know I think sometimes I had a misconception of how I would feel when I was done with treatment, but it is very maddening the colaterol damage.

I feel the most healthy when I wake up in the morning and as the days goes on it is quite the slippery slope!!

Re: Just add Hashimoto's
 

Hashimoto's is low thyroid function (hypothyroid). Graves disease is high thyroid function (hyperthyroid). Euthyroid means no thyroid at all...me. I used radioactive iodine to burn it out in 2001.
Hope this helps,
Karen

Re: Just add Hashimoto's
 

Good to know, thank you!

Re: Just add Hashimoto's
 

Taken from:

https://www.facebook.com/notes/thyro...53693224649639


Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.
I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Shortness of breath or "air hunger?" Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ?
Hives? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.
Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's disease

Re: Just add Hashimoto's
 

So sorry! But at least you have a good endo and can treat this with meds.

Just out of curiosity - did she indicate that your treatment for BC had anything at all to do with the thyroid issue?

Best
Janis

Re: Just add Hashimoto's
 

Here is a link to an excellent recent article published in The Oncologist concerning Hypothyroidism Following a Cancer Diagnosis: http://theoncologist.alphamedpress.o...t/19/1/34.full

You will need to register to access the site and the article, however, registration is free.

Hopeful

Re: Just add Hashimoto's
 

Answers...good for you...unfortunate that it had to go like this...yet, now you can get to feeling better!!!

Much more insight for me...as I am having lab in Feb due to an over active thyroid...will need a scan if needed.

Prayers and hugs being sent your way!!! :)

Re: Just add Hashimoto's
 

Love the endo! She called to see how I was doing---not her office, SHE called me. I feel GREAT! Still painful hands, feet, wrists and elbows but much less than before. The fatigue is VASTLY improved. I am feeling better, I am feeling HUMAN. Thank GOD. I was beside myself. I felt better during chemo. YUCK! JayKay, she did not say that there was a connection between BC Tx and Thyroiditis. However, the literature indicates that there is a relationship between thyroid Dz and BC. Usually thyroid Dz is found first. My Endo had a radiologist review my PET scan to see if there was some indication back in June. She said there wasn't any indication of any Dz process at that time but it doesn't mean it wasn't happening. Many of my "symptoms" predate my BC. It's possible it all went crazy at once...some environmental influence. Who knows. I'm just happy to have a Dx and Tx and to be feeling better. I honestly thought I was crazy and making myself sick. I never complained during, chemo, rebounded from each treatment quickly and returned to work the following week. I sailed through the first bit of radiation and CRASH---hit a wall. It was NUTS. I am sooooo relieved. Susan, has anyone said your thyroid issue is related to BC? Is yours Dx'd as Graves?

Re: Just add Hashimoto's
 

Lots on thyroid function, breast cancer, hashimoto's and related topics here

http://her2support.org/vbulletin/showthread.php?t=53928

Re: Just add Hashimoto's
 

Thank you very much, I truly appreciate this valuable and knowledgeable information!!

Re: Just add Hashimoto's
 

Oh my gosh, I am going to ask for testing. I hurt almost all the time, and my oncologist told me I had chemo-induced fibromyalgia. I can't go six hours without taking a nap, and I have lost a ton of weight. A trip to the grocery store wears me out. I can't keep weight on because I just can't eat. I also have elevated liver enzymes, but Im pretty sure that is due to my Tykerb. Can't hurt to have it checked. You must be soooo relieved to know what was causing you to feel so bad, and to know that there is a treatment for it. Im so happy for you...Lots of prayers and big cyberhugs headed your way.

Re: Just add Hashimoto's
 

Re: Just add Hashimoto's
 

Thank you, I'll look at that.

Re: Just add Hashimoto's
 

Hi, yes it happened to me too. I was diagnosed with BC at 48, got shingles, lost my period completely, got pneumonia, got MRSA 4 times, got chemo neuropathy, gained over 100lbs so I was sent to an endocrinologist who diagnosed me with hypothyroidism, now taking medication for life, and now diabetes and sleep apnea. I also have GERD and hiatus hernia. Chemo and radiation completely messed up my body but save my life so just have to keep fighting, right? Have a great day everyone!

Re: Just add Hashimoto's
 

I read all this again, and I go for my 2nd opinion tomorrow. I feel just like you, and I try each and every day. I come to work and sometimes the pain is doable but then like yesterday by the end of the day it my feet and hands hurt so much I couldn't stand it. I just wanted to go straight home and cry then go to bed.

It is all the things you said above......And I have thought this isn't any quality of life, and I am ready to be done now and Jesus just take me to heaven. I keep searching for an answer because I want to live life more then I did before Cancer because I realize how precious life is and I didn't appreciate my health.

I have taken my 2nd dose of 50,000 units of Vitamin D and maybe that will work. Heck, I don't know.

I get everything you said, and I hope you are feeling better!! What do they give you for this disease?? How do they figure out if you have it???

Re: Just add Hashimoto's
 

I was diagnosed with Hashimoto's in 2001, after feeling rotten, awful memory, depressed, etc. I thought it was just peri-menopause. Felt so much better after getting on Synthroid.

Now, I am confused about what to do. Last October's PET scan showed my breast cancer had spread, so I wasn't real concerned about thyroid ultrasound that showed some nodules. They had been there since last thyroid US over 12 yrs ago. Now that my scan in Jan. says I am in remission, my surgeon decided to do an ultrasound on my thyroid last week, then did a biopsy on a nodule that had grown since Oct. The results were not clear, and he wants me to have a nuclear sonogram. Seems to me that the PET scan from Jan would have shown if it were cancer, wouldn't it?
I don't want to go off the Synthroid for the 4 weeks prior to testing, as they require.