Radiation and Thyroid Issues

MJBlueslady

I have bc and had 30 radiation treatments and the only issue I had during the treatments was occasional fatigue. However, 3 weeks or so after the treatments stopped I started feeling lousy(nausea, dizziness, vomiting) and just thought that was part of having cancer but on the 3rd week I started having trouble breathing and was rushed to the hospital in the middle of a thyroid storm which is deadly. Both the emergency doctor and the thyroid doctor said I was very lucky to be alive and they think that the radiation jump started my thyroid which lead to the thyroid storm which has created more issues for me then the cancer. My Radiologist denies this could ever happen but with the breast being so close to the thyroid and my chest was extremely red during treatments I am sure this is a possibility. Was wondering if this has happened to anyone?

Thanks so much for listening and everybody take care and hang in there!!!

labelle

Don't know about causing a thyroid storm, but RADs was definitely concerning to my endocrinologist. I was diagnosed w low thyroid/Hashimoto's years before having BC and when I told my endocrinologist I was having RADS done due to BC, she stepped up her monitoring of my thyroid condition to every 3 months, instead of the usual every 6 months schedule I've had with her for some time. So she apparently thinks RADS can mess with the thyroid, although mine didn't seem to be affected.

Of course, now that I'm taking Tamoxifen I'm back to every 3 months with her because that too can mess with your thyroid.

marijen

Well that's interesting, I just got finished asking the radiologist about damage to my thyroid and she said there hasn't been a problem with other patients. My endocrinologist could give a rat's ass I think and also on my bone density. I know thyroid storms can be horrible. Glad you survived MJBluesLady.

KBeee

part of my neck was in my field, so I have asked MO if he'd check my thyroid numbers yearly and he agreed.

Your situation sounds scary. Glad you're ok.

MJBlueslady

Thanks so much everyone for your posts and concerns, this is a Great place to go for support. I was just wondering if after having radiation treatments it affected anyone's thyroid. I never had thyroid issues before the radiation but I now have Graves disease. One thing good is my thyroid is hyper so I lost 40lbs without really trying, lol. I am doing much better now(knock wood) and as for bc I am in remission(thank God) since December but have to get a new expander put in place as the radiation broke my last expander and the saline leaked out. I guess my body and radiation don't get along very well, although I am not complaining as I have been so lucky and Blessed. Take care.

Kicks

MJBlueslady - For a question for you - how old (and what year) when your tonsils were remove? Years ago (from in the 20's onto the '60') for many, radiation was used after tonsils were removed 'to keep them from growing back'. I have been monitored for possible thyroid issues all of my life adult life because my tonsils were removed when I was 1 1/2 and radiation do to 'keep them from growing back. In my case - didn't 'work' - still have my second set of tonsils at 69. Thankfully, my parents made sure I knew that the radiation was done, but apparently not all were advised or knew exactly what 'TX' was done so many years ago.

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live_deliciously

hi. I am having thyroid issues too. My onc listed in my on line medical portal that I'm being monitored for acute lymphocytic thyroiditis. I haven't been able to ask her about this or what caused it. I've heard radiation or tomoxifen. I'm also having ldl cholesterol issues. I'm done with active treatment and am now on tomoxifen and a. Clinical trial for Affinitor. I have 80% of the symptoms for hypothyroidism. I'm glad I found this post.

MJBlueslady

Kicks, I did have my tonsils out when I was 4 and that was 55 years ago but don't recall being told they used radiation on me. I will have to ask my mother and let you know. Love all the interesting information you receive on this site.

MJBlueslady

Live_deliciously: lol, in my opinion the only way to live, Did you ever have any kind of thyroid issues before you got radiation? You might want to see if your onc feels it could have been caused by the radiation. My mom has had thyroid issues since she was young so I had mine checked every year and nothing until I had radiation, weird. Make sure they monitor your thyroid as it is amazing what your thyroid can affect and cause problems with. Take care.

live_deliciously

hi. I haven't had any thyroid issues previously. The RO was very careful in his planning as well the red area that showed up during rads wasn't anywhere near my throat. So I'm wondering if it's tomoxifen blocking my hormones from my thyroid slowing it down?

marijen

Bump

Anyone get thyroid nodules after radiation

Emily2008

I've had thyroid nodules on and off for 20 years (have Hashimoto's thyroiditis), but on my most recent post-radiation CT, the radiologist noted that one of the nodules they saw 6 months before has grown. I'm seeing my endocrinologist this coming week for an ultrasound. I'm really hoping it's just part of the waxing and waning of the nodules that I've experienced for a long time, rather than a side effect of rads. We'll see...

gb2115

i wonder if the effects of radiation scatter are worse than they let on. I have been having severe dry eye ever since right at the end of rads. Very coincidental timing...RO denies any effect, but eye doctor says it happens...

Emily2008

I've been wondering about that too, as well as about the "1%" statistic that my RO gave me that post-radiation pneumonitis could occur. Well, either my luck really is that bad, or he's minimizing the risks significantly.

Incidentally, my MO said he sees patients with pneumonitis more frequently than 1%, so what am I supposed to make of that?

I would be inclined to take your eye doctor's word on it, for what it's worth.

Not to say that rads aren't appropriate and necessary when the need is there, but it would be nice to feel like the ROs are really leveling with us. When I googled pneumonitis, I found that some women who were experiencing all the symptoms were told by their ROs that they didn't have it. Flat-out denials. Why? Are we really supposed to believe that 30 sessions of rads are *only* going to do good (kill cancer) and not bad (side effects)? Please!

cp418

I was dx in 2014 with hypothyroidism after suffering fora long time with the symptoms. Finally my PCP started me on thyroid medication after my nutritionist did extensive blood labs to confirm. I saw it noted on my medical records as "acquired hypothyroidism". I am convinced it was from my radiation treatments which were applied high up on my chest. My tumor was at the 11 o'clock position. It never occurred to me at the time to inquire about wearing a thyroid cover like when you have dental x-rays or mammogram. If you have hypothyroid symptoms get it diagnosed because diet and exercise alone will not control it. The thyroid medication helped with many symptoms I was blaming on Letrozole.

marijen

it never occurred to me at the time either. Now I am wondering why, a year later, I didn't ask for a thyroid shield. Have two nodules, one has grown 1 cm in six months. Were they there before radiation? Would they tell me the truth? Also have some lung fibrosis which they did attribute to radiation. Not sure how that will affect me in the future

cp418

I hope new patients here starting their radiation treatments will question their radiologist about thyroid protection.

marijen

I never received a thyroid protector for mammograms now that you bring it up. Mother sister and niece have hypothyroid, pretty sure I went undiagnosed for at least 13 years although I had lots of symptons. The tsh test is not good enough. Symptons were definitely worse after child birth

cp418

You have to ask for the thyroid shield during a dental x-ray or mammogram scan. Now that I know better (maybe too late) I ask for this protection. Yes - TSH test alone is not enough and more thorough blood testing is required.

marijen

I'm seeing a specialist next month as nodule is boderline. They'll be looking for C. It never ends. But very few are malignant. There are at least five different kinds of malignancy

marijen

I was just reading that levothyroxine can lower platelets by the thousands. Anybody notice that their platelets are down? Also tomoxifen can lower platelets. Pernicious anemia too, vit b 12 absorption

marijen

I asked Thyroid specialist today why they didn't use a thyroid shield during my 33 treatments. He said because there was no radiation splatter - it was directed at the tumors. However, I had an occult primary that's why they didn't know where to focus so......I was given whole breast radiation. Did get splatter or not? I could kick myself for not insisting on a shield anyways. I did ask in the beginning about my thyroid and I got the not to worry answer. Of course, I was already beat up from three surgeries and a root canal that took two days to complete. About 8 hours. And also bad healing from my third surgery for margins. Radiation later caused Delayed Breast Cellulitis and I had to have 20 PT visits to fix that problem, plus antibiotics, and IBC skin test, prednisone, and two PTs that didn't know what they were doing. None of which was recorded in my chart as if it never happend. The radiologist did admit to me she had no clue what was going on with my post rad breast and had to consult others that also didn't have a clue. I'm still needing PT over a year later, still have pain and swelling. Still have numbness from damaged nerves from the original lumpectomy.

No radiation splatter? Really? I mean how would they really know? Now I'm being watched for Thyroid cancer. Gee thanks medical people

HopefulYogi

I had occult primary, 2swollen lymph nodes under right arm only. Had neoadjuvent chemo, right axillary LND (18removed all NEG) and 28 radiation treatments. I've never had lung or thyroid issues before. Finished rads beginning of June this year. Had to have an X-ray & MRI of cervical and thoracic spine (unrelated to BC) and they found a 1.7cm nodule on my thyroid and radiation pneumonitis in my lung. Both RIGHT side where I was radiated. Now I know the lung is because of the rads, but when I asked the endocrinologist about the nodule being caused by the radiation he said "probably not". I had no thyroid shield. Never even heard of one until now. Don't know if there was a nodule growing before treatment since I don't think that particular area was ever really looked at.

Supposedly the thyroid nodule has smooth edges and feels soft, but due to its size I am having it biopsied today.😳 Wasn't really prepared to find new issues so soon, was hoping to have a relaxing summer after getting thru all the hard stuff. Only 3 more Herceptin treatments left. I'm on symbicort inhaler now for the lung as I am having some shortness of breath( esp in this humid muggy weather) and some raspy/crackly breathing at night when I am laying on my right side only. But no pain, thankfully.

Was glad to find this thread to hear of similar stories, although I am very sorry that you have these issues as well.

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marijen

Hi, I had an occult primary too. And each time I go for a visit they find something new. They say only 5% of nodules are cancer. Mine are too small to biopsy. I read here somewhere that thyroid shield is useless because radiation can go through thick cement. So please let us know how you do. I have nothing for the lung fibrosis but I read the Letrozole I took is good for that. My radiation was over a year ago. Just found out about the thyroid and lung in April. Already had SOB and hypothyroidism. Now they are calling it autoimmune and my thyroid is dissolving. I'm trying to do good things for my immune system. Have to go back to PT too. Sigh..

BrooksideVT

There is scatter from dental x-rays, from mammograms, and from other diagnostic x-rays, but not from radiation therapy. The beam they use is so powerful that it just plows straight onward, scatter-free. Consider the teeny see-through shield your mammogram tech stands behind, and then contemplate the concrete wall that shields the rads techs.

I was so absolutely terrified of rads that the head tech spent about an hour explaining the entire process to me. I asked for a thyroid shield, but once I understood that radiation therapy is a totally different animal, I was perfectly comfortable (at least thyroid-wise).

It's been four years since rads and annual MRI's show my multiple preexisting thyroid nodules remaining perfectly stable.

marijen

Oh that's good news about your nodules Brookside. So did they tell you why the techs have to hide behind a concrete wall then? I do want to believe that there is no scatter.

MarciaM

Hi Mary Jen;
This is an interesting form I found. I've had many thyroid issues since going through breast cancer treatment. I only took a few days of radiation but they definitely radaaited high up toward the neck because that's where the breast tumor was located. Later I found the brain tumor that had traveled all the way to the brain and they never found it in time. I'm well now but I had to have brain surgery and radiation to the brain.
I was diagnosed with Hashimoto's thyroiditis shortly after breast cancer and my thyroid swell seem to get huge and I had a terrible rash and it was due to autoimmune disease. I think a lot of these treatments cause a lot of unknown side effects and the doctors are totally ignorant of what actually is going on when they radiate someone. And they're anxious to deny but radiation causes damage because they don't want to lawsuit that's the primary motive behind mds not looking at things holistically. when they tell you you're going to get a treatment they ought to be honest and tell you that it could damage your whole thyroid. So now I'm being observed for acute thyroiditis and the growths in my neck are being checked once a year by an ENT. Everyone's in denial why being denial why not be honest.? Ill ask for shild next maommgram.
Thank you for your information.
Wishing you all good results,
Marcia

marijen

Thanks Marcia, I'm so sorry to hear about your Brain cancer. How big a chunk has it taken out of your life? Your comments are appreciated. They are so scare of malpractice but really who wants to go through that when they are sick? If only they would be honest and let us decide with the facts. Then it would be on us. I guess it's the time involved and it would take volumes to fully inform us.

I don't think I'm strong enough to go through brain surgery or radiation again. Sincerely.

Emily2008

I think it's incorrect to say there's no scatter. Even my RO told me there is scatter, though they work to minimize it significantly.

There was enough scatter from my bc rads to cause me to develop pericarditis, even though I did the breath-hold technique to move my heart and pericardium out of the field of the beams.

marijen

Well Emily there you go. I wonder if it depends on the equipment and how state of the art it is? Good to know, thx.

HopefulYogi

I asked my endocrinologist again yesterday before my biopsy about the chance of this nodule being caused by my radiation and he says no - only if I had been exposed to radiation as a child , like Chernobyl or something. Still not buying that! They radiated 4 angles. One being the lymph nodes up near my collar bone on that side.

The biopsy was done in his office guided by ultrasound. 3 needles to numb it, then 3 fine needle aspirations. Now the wait... 5 days to 3 weeks. Seriously???? Ugh!

So sorry to hear about everyone else's complications

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