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Dodged a bullet -- maybe: A cautionary tale

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Dodged a bullet -- maybe: A cautionary tale

Old 12-01-18, 01:57 PM
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canklecat
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Dodged a bullet -- maybe: A cautionary tale

This may be most relevant to folks who neglect their own health for various reasons.

I've mentioned my thyroid problems in other threads. Long story short, after surgery in November to remove the swollen left half of the thyroid, pathology found cancer.

I'm meeting with the doctors next week to discuss details and the prognosis. For now they believe they got it all and are recommending annual follow-up ultrasounds of the remaining right half of the thyroid.

It's impossible to say whether this specific problem could have been prevented or avoided with earlier treatment. But the fact is, I neglected my health for years -- more than a decade, in fact. I've been the primary caregiver for three successive older family members -- both grandparents, 10 years apart; then, for 11 years, my mom who died a few weeks ago. My background was in health care, so I was the most logical person to take on this role. While all three family members had good health insurance and access to in-home assistance from nurses and aides, the real life problems are more complicated. In-home aides tend to be unskilled and undependable. As we age don't always make the best decisions about our own care. It helps to have a trusted and reasonably objective family member or friend to at least consult for feedback.

In my case my grandparents were both reasonably alert and cognizant enough to handle most decisions for themselves, other than the last few weeks of life. Both died at home, with assistance from hospice care with my grandmother. My mom was a bigger challenge. In addition to many physical problems she had dementia. From 2006 through 2017 her condition gradually worsened, occasionally getting much worse, then a little better. By January this year, after her fourth knee surgery, it was clear she needed more help than I could handle on my own and Medicare/Medicaid wouldn't cover enough in-home nursing and aides to make up the difference. She spent all year in a nearby nursing home where I could keep an eye on her. She died there in hospice care a few weeks ago.

I fell into the cliched caregiver trap of neglecting my own health. The only time I'd seen a doctor in 17 years was after I was hit by a car in 2001. In addition to the injuries the doctors also discovered I had Hashimoto's, an auto-immune disorder that causes hypothyroidism (not all hypothyroidism is due to Hashimoto's, so the complications are different). I had a prescription for thyroid meds but after I took over as my mom's caregiver in 2006 I neglected to continue taking the meds or to get follow-up blood tests, etc.

In January this year I thought I had the flu, which was unusual in itself. For some reason I rarely get the flu and hadn't bothered with a flu shot in many years. But after more than a month it was apparent this wasn't the flu. It seemed more like my old thyroid problems -- exhaustion, aching, depressed, etc. I found an old prescription for levothyroxine and resumed taking it. Within a few weeks I felt better. By springtime I was strong enough that I was setting some of my fastest Strava times since resuming cycling in 2015, even cracking the top ten on a few tough segments.

In May I was hit by a car, breaking and dislocating my shoulder and re-injuring the neck injury from the 2001 collision. While prepping me for shoulder surgery the anesthesiologist noticed my thyroid was so swollen it was crushing my trachea and esophagus. He recommended against day surgery at their outpatient clinic because I couldn't be intubated -- even an infant's tube wouldn't fit.

I knew my thyroid was swollen but didn't realize how bad it was. It happened so gradually that I was only aware of some difficulty swallowing. It felt like a big oval pill was stuck in my throat, permanently. I didn't notice any breathing problems until I was giving maximum effort during bike rides for interval training or trying to crack the top ten on a Strava segment. I just figured it was my old asthma nemesis.

I registered with the local public health care system, which had been good with my mom so I trusted them. But I got a barely competent nurse practitioner who seemed indifferent and gave bad advice. For some reason she told me I didn't need the thyroid meds and told me to discontinue it. That made no sense to me -- the reason my lab tests were within normal limits was *because* of the thyroid meds. But I didn't want to seem uncooperative so I discontinued the meds.

By late July or early August I was practically incapacitated. The worst came when I could barely crawl across the floor to get to the bathroom. A neighbor drove me to the urgent care clinic where a doctor confirmed my thyroid wasn't functioning. The doctor also wondered why the NP told me to discontinue the thyroid med and put me back on levothyroxine. This time it took almost three months before I began to feel normal.

Meanwhile a friend and younger veteran suggested I sign up for the VA, where he got good care. I had registered with the VA 20 years ago but was rejected because at the time they were underfunded, understaffed and overwhelmed with veterans with combat disabilities -- I had no service connected disability, other than minor back pain from lifting patients (I was a Navy Hospital Corpsman).

But now the VA is more than caught up locally and had actually been mailing me letters for three years inviting me to come in to be evaluated. I'd been so busy with my mom I never got around to it, until I really needed help this year.

Besides the shoulder injury -- wasn't much anyone could do about it but wait for healing and physical therapy -- the thyroid problem was rapidly worsening. Between the community hospital and VA I had four needle biopsies, ultrasounds, and either MRIs or CT scans -- hard to recall because I had so many identical diagnostics for the shoulder and neck injury as well. The biopsies were all inconclusive -- dead, calcified tissue, but none of the biopsies could extract enough tissue to be sure whether there was any cancer. The diagnostics showed nodules and spots that caused concerns, so both ENT docs at the community hospital and VA gave identical recommendations.

I went with the VA for full treatment because their level of care and compassion were surprisingly good. This was a welcomed change from the indifference shown 20 years earlier. I know some younger veterans with service connected disabilities who won't go back to the VA now because of the poor treatment they received 20 or so years ago. I've tried to assure them that our local VA is reformed and doing very well. The hospital facility is dated and some clinics appear overcrowded, notably with older, disabled and homeless vets. But the staff treat everyone with respect and compassion.

Surgery went well -- fortunately the thyroid is literally only skin deep and there were no tendrils to complicate removal. It was technically day surgery but I had no one at home to watch me that night. No problem. The VA provided lodgings the night before surgery (they have a large facility nearby with a short term and permanent nursing home, and rooms for overnight guests like me). And they kept me in the hospital overnight to be sure I was recovered enough to go home. I took the train partway home, where a friend drove me the rest of the way home to skip the long and tiring bus transfers. The TRE train between Fort Worth and Dallas is actually smoother, easier and quicker than driving. But the buses can be slow and tedious.

Not much pain, haven't really needed the pain meds -- maybe twice since surgery 11 days ago. No complications. I've even ridden my bike two or three times, starting two days after surgery. The doctor said it was okay to ride my bike as soon as I felt like it, but to avoid lifting more than 10-15 lbs. My road bike weighs 24 lbs. I interpreted that as a prescription for a carbon fiber bike, but I'm not sure my insurance will pay for that particular mobility device.

However the cancer report from pathology indicates this isn't over. Even if surgery caught it, once you've heard the "C" word it's hard to shake. The doctor doesn't anticipate any long term complications, but with my family history it's reasonable to be concerned. My dad died after 10 years with prostate cancer. And my great-aunt died with leukemia. My grandmother had colon tumors, all benign. I don't recall any other family with cancer but I'm not in contact with some of our large extended family.

I was actually more concerned about the other ailments common to my family members who became sedentary with age and infirmities -- obesity, heart and respiratory disease, and, in my mom's case, dementia. That's the main reason I resumed cycling three years ago. My weight is back to near-optimal, I'm in better physical shape overall, and that probably helped with a quick recovery from surgery.

But I do wonder whether I could have made the last few years easier on myself if I'd seen a doctor sooner, especially taking advantage of the reformed VA's offers.

Anyway, if you're in a similar situation, don't neglect your own health.

One of my local cycling friends is entering the same situation I was in a decade ago. I need to have a sit-down with him to discuss this stuff. We all tell ourselves we know better and, yes, we'll look after ourselves. But men in particular need a buddy to nudge or shove them once in awhile.

Thanks for reading. I always intend to write shorter pieces. Failed again.
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Old 12-01-18, 03:15 PM
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Thanks for taking the time to share this. I read every word.
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Old 12-01-18, 03:49 PM
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My understanding is that thyroid cancer is one of the easiest to treat and has the best prognosis. So glad you are finally taking care of yourself.
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Old 12-01-18, 04:54 PM
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Originally Posted by bobwysiwyg View Post
Thanks for taking the time to share this. I read every word.
Same here, check back often and keep us updated
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Old 12-01-18, 06:53 PM
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Originally Posted by bobwysiwyg View Post
Thanks for taking the time to share this. I read every word.
Me too. Glad you're taking care.
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Old 12-01-18, 07:13 PM
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I'll know more after my Dec 5 follow-up, but I'm expecting the only difference will be whether it's papillary or follicular cancer. My age, 61, is a factor, but because I was in pretty good physical shape and want to stay that way we opted for the partial thyroidectomy so I'd still have some advantage of a partially functional thyroid and parathyroid (the latter is important to bone health). I'll be on levothyroxine the rest of my life but there's still a chance the remaining right side will regain function.

As GadgetGirlIL noted, thyroid cancer tends to have the best prognosis of all cancers. It tends to remain in the thyroid, probably assisted by calcification that encapsulates the cancer as the thyroid ... well ... dies. The pathology report described it as necrotic.

In fact, the doctors admitted that the needle biopsies carried a risk of seeding cancer, if any, which might be a greater risk than leaving it alone or just going ahead with the thyroidectomy. Some recent publications criticize what the papers describe as overuse of biopsies, but for now most doctors regard the biopsy as the most conservative, least invasive procedure. I had enough information to give informed consent to all procedures and agreed to the biopsies. But basically all four came up dry and the diagnostic imaging indicated some problems that favored removing the problem area.

I'd be lying if I said I wasn't worried, but I feel pretty confident about recovery and staying healthy. As this publication indicates, a major factor is access to good health care, particularly as we get older. In the long run preventive and immediate remedial care tend to be less expensive overall than delaying treatment.
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Old 12-01-18, 07:23 PM
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Thanks for the post, I need to make time as well, but I'm young and invincible right? Hope you are recovered well by next riding season

Happy holidays!
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Old 12-01-18, 09:22 PM
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The best going forward.
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Old 12-02-18, 11:16 AM
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Thanks for the cautionary tale. Annual physicals, and by competent physicians interested in your health become more important as we age.

Keep us appraised of any follow on treatment. I know a few people who've had thyroid cancer, and their docs managed it well with medication and radiation.

Good luck and health going forward!
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Old 12-02-18, 12:13 PM
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Thank you for all the background and details. That really helps to completely understand your situation. Sending positive thoughts your way.

And 24 lbs is pretty darn heavy for a road bike. Go get you one of those 15-16 pounders and enjoy the ride!!!
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Old 12-02-18, 01:58 PM
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Thank you for sharing your story. I appreciate the vulnerability you have shown.



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Old 12-02-18, 07:02 PM
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And 24 lbs is pretty darn heavy for a road bike. Go get you one of those 15-16 pounders and enjoy the ride!!!
Some people just don't get the C&V mindset.

I wish you the best. Thanks for sharing.
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Old 12-03-18, 08:04 AM
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Cancer often shows no rhyme, reason or mercy. Maintaining a level of fitness can help with whatever treatment is called for. I wish you a favorable prognosis and a speedy recovery.
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Old 12-22-18, 10:24 AM
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Appreciate you willing to share details. It's easy to assume we're healthy and somewhat shielded from disease because of our active lifestyle.

Go to your "annuals" dear friends!

All the best...
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Old 05-16-19, 12:32 PM
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I had papillary thyroid cancer about 12 years ago, complete thyroidectomy followed by a dose of radioactive iodine. There was a lot of things that should have pointed towards this- depression, roller coaster weight gain and loss, but what ya gonna do?

BUT lately I feel like a lot of the same symptoms have returned, doc says TSH is normal. I am also on BP meds and I wonder if my potassium level is screwy again.
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Old 05-19-19, 10:22 PM
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Originally Posted by frogbiscuit View Post
I had papillary thyroid cancer about 12 years ago, complete thyroidectomy followed by a dose of radioactive iodine. There was a lot of things that should have pointed towards this- depression, roller coaster weight gain and loss, but what ya gonna do?

BUT lately I feel like a lot of the same symptoms have returned, doc says TSH is normal. I am also on BP meds and I wonder if my potassium level is screwy again.
Ditto, all the above. Although I don't take BP meds routinely (I occasionally take a beta blocker for severe headaches). I do take some OTC supplements, including potassium and magnesium. Seems to help a bit. Hard to be sure with most supplements, as there's seldom any immediate or definitive effect.

Six months after surgery I still don't feel quite back to normal. And the remaining thyroid lobe on the right side feels a bit swollen, and I'm having some mild swallowing issues again. I'm kinda wishing they'd gone ahead and done a total thyroidectomy, but I understand the logic. Diagnostics at the time revealed no problems, and they were hoping to preserve some functioning thyroid and parathyroid.

My endocrinology followup is in June. Meanwhile I've experimented a bit with my levothyroxine dosage. They've gradually increased mine from 25 to 75 mcg, but I wasn't feeling any better. I know my endocrinologist is being cautious because there's a delicate balance in thyroid and parathyroid effect, and a bone density scan revealed enough indications of bone loss to concern my doctors. I suppose I shouldn't be surprised but I was anyway.

This weekend I added a 25 mcg dosage just before bedtime, in addition to the 75 mcg morning dose. I suddenly had more energy Sunday than I've had in more than a year, and got up early for a long casual group bike ride. For the past six months it's been hard to drag my aching, zombie body out of bed before the crack of noon, let alone ride a bike early in the morning. I'm in physical therapy for the injury from last May's collision, and I've had to schedule my sessions no earlier than noon -- it's that difficult to get started most days.

But my positive experience this weekend is too limited a trial. Might be coincidence. So I'll repeat it this week. If all goes well I'll ask my doctors about it. As the saying goes, it's easier to ask forgiveness than permission.
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Old 05-20-19, 06:14 AM
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Originally Posted by canklecat View Post
Ditto, all the above. Although I don't take BP meds routinely (I occasionally take a beta blocker for severe headaches). I do take some OTC supplements, including potassium and magnesium. Seems to help a bit. Hard to be sure with most supplements, as there's seldom any immediate or definitive effect.

Six months after surgery I still don't feel quite back to normal. And the remaining thyroid lobe on the right side feels a bit swollen, and I'm having some mild swallowing issues again. I'm kinda wishing they'd gone ahead and done a total thyroidectomy, but I understand the logic. Diagnostics at the time revealed no problems, and they were hoping to preserve some functioning thyroid and parathyroid.

My endocrinology followup is in June. Meanwhile I've experimented a bit with my levothyroxine dosage. They've gradually increased mine from 25 to 75 mcg, but I wasn't feeling any better. I know my endocrinologist is being cautious because there's a delicate balance in thyroid and parathyroid effect, and a bone density scan revealed enough indications of bone loss to concern my doctors. I suppose I shouldn't be surprised but I was anyway.

This weekend I added a 25 mcg dosage just before bedtime, in addition to the 75 mcg morning dose. I suddenly had more energy Sunday than I've had in more than a year, and got up early for a long casual group bike ride. For the past six months it's been hard to drag my aching, zombie body out of bed before the crack of noon, let alone ride a bike early in the morning. I'm in physical therapy for the injury from last May's collision, and I've had to schedule my sessions no earlier than noon -- it's that difficult to get started most days.

But my positive experience this weekend is too limited a trial. Might be coincidence. So I'll repeat it this week. If all goes well I'll ask my doctors about it. As the saying goes, it's easier to ask forgiveness than permission.
Yes, it took months after my surgery to get it straight. I am on 150 mcg and have been for ten plus years. I get blood drawn every 3-6 months and every once in a while the doc says your TSH is a little low/high, maybe we change it. I always tell them no thanks, lets wait and see what the next blood test says, and it always returns to normal.
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Old 05-20-19, 11:23 AM
  #18  
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Whew... this thyroid thing is a roller coaster. Felt terrific Sunday morning. First time in a year I've felt well enough in the morning to get up before noon, let alone ride bikes. Rode 46 miles including 20 casual paced miles with friends. The route was very hilly but we took it easy since some folks on the ride weren't in great shape.

Monday, I can barely move. Not even sure I'll make it to PT. (Although I feel well enough to whine on the internet. )

I ride 20-30 mile hard workouts a couple of times a week, and usually a longer easier ride once a week. So it's not the distance or exertion.

Just darned unpredictable metabolism.
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Old 05-23-19, 11:21 AM
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Originally Posted by canklecat View Post
Whew... this thyroid thing is a roller coaster.
I've been on Thyroid medication for 47 years. 200 mcg. Doesn't seem possible, but my thyroid grew to 4x standard size but quit producing when I was 13 years old. Since 1971 I've been taking that pill. It was cows extract back then, and you never knew how to dose. Every cow was different but kept me going. Synthroid came out maybe 30 or 40 years ago, and it worked great. Every time I use a generic to save money, my energy level was all over the place. Went back on name brand, TSH good, felt good.

I did learn an interesting tidbit. Walnuts mess up the Synthroid uptake. My cycling days I would pack walnuts and raisins as my energy food. Ride a lot, eat a lot of walnuts... so I was self-inducing oscillations. Had I always consisting eaten the same amount, TSH levels would have been constant but I didn't eat that daily, nor even weekly.

These days my healthy snack is almonds and dates.

Not enough post history for links, so you have to remove spaces

www. synthroid. com/starting/taking-synthroid-the-right-way
  • Foods like soybean flour, cottonseed meal, walnuts, and dietary fiber may cause your body to absorb less SYNTHROID from the gastrointestinal tract. Grapefruit juice may cause your body to absorb less levothyroxine and may reduce its effect. Let your doctor know if you eat these foods, as your dose of SYNTHROID may need to be adjusted
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Old 05-23-19, 01:44 PM
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@roundrocktom -- Thanks. I'll pay a little closer attention to my diet. I do have some drastic variations in energy level, so it's possible my diet is contributing some issues.

I'm going to ask my endocrinologist about increasing my levothyroxine dosage. Officially I'm still on 75mcg, which is much lower than most folks I've heard from who take thyroid meds. Most of them seem to be taking 150-200mcg. That may be why my energy level is still so erratic, usually very low.

Unofficially I began adding a 25mcg dose before bedtime. This study indicates nighttime/bedtime doses work better for some people than the usual advice to take meds first thing in t emorning on an empty stomach. The only problem for me is I often tend to eat late, so even at midnight I'm not taking meds on an empty stomach.

With the 100mcg total dosage I was able to handle a 45 mile casual paced morning group bike ride this weekend (around 11 mph). I haven't had enough energy for a ride before noon since last year, so that was unusual for me. And a little more spirited 45 mile group ride Tuesday evening, around 16 mph. No problems with energy level either day, just the usual aches and pains from neck, back and shoulder injuries. Stretching partway through helps.

But the following days after both rides I was exhausted, could hardly get out of bed. So I'm not quite back to normal.
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