Newly diagnosed with thyroid cancer and have 2 main concerns

Posted by hopeful23 @hopeful23, Apr 8, 2023

Hi all. I just got my biopsy results a few days ago. The 2.2 CM nodule in my right lobe was suspicious for Bethesda Cat 5 papillary carcinoma. I have an appointment on April 12th with the surgeon who will presumably operate on me. Until I meet with him, I won't know whether he'll recommend a thyroidectomy or lobectomy.

After reading these Q&As, I am particularly concerned about the hormonal changes that will occur after having my thyroid removed. People have described changes to their quality of life, lost relationships, and general misery. I am petrified of this outcome. I'm 65 years old and I was hoping to enjoy the next couple decades.

Secondly, it seems that some people have had good experiences with dessicated thyroid vs the typically prescribed Synthroid or Levo. Do endocrinologists generally disapprove of dessicated thyroid, or are they willing to prescribe it? Anyone have any insight into this debate, or can you tell me about your experience with either form of thyroid replacement? Do thyroid replacement drugs work for anyone, or is everyone miserable? Am I only seeing the horror stories?

Thanks in advance for any help or reassurance you can give me.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

@cocha

@koh - so my endocrinologist had called for a TSH 1 week after the lobectomy and my TSH number was just over 5. (it was usually between 2 and 3 prior to surgery) She asked me to start taking Levothyroxine 50mcg which I took for a couple days without any side effects, and then stopped because the surgeon who I met the following week said I need to wait for my my 6 week bloodwork (to start on Levo), because the body was still adjusting. So come 6th week, I have my TSH levels tested and they are now at 11.5! So my endocrinologist asks me to start on 75mcg. Up until then, I have been feeling pretty normal. But 2 days into taking 75mcg Levothyroxine, I am feeling so sleepy in the mornings.

Is this just the body adjusting, or is this too much (or too less) Levothyroxine? I did not feel like this with 50mcg. And frankly, I was just fine without any thyroid hormone replacement.

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@cocha - I think it’s hard to know if it’s your thyroid or the medicine, but if you were fleeing better in 50mcg maybe you can ask your endocrinologist if you can take that dose and see if your TSH number comes down.
In my opinion, the doctors goal seems to be to keep TSH as low as possible to prevent cancer but sometimes they prescribe too aggressively. I read that some people are put on levothyrocine immediately after surgery while the body adapts and then they consider removing it. I have an issue with sudden fatigue now and I am trying to figure out the cause too.
Good luck!

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@cocha

By the way, after starting on kefir (and before taking levothyroxine) - store-bought initially and then home-made - I am happy to report that my GERD symptoms of a year and a half have become 95% better! It is surprising how a simple home remedy and a simple diet fixed this. I was also taking some papaya enzymes from time to time along with this, but never stopped the kefir regime. I believe the kefir reinstated the good bacteria in the gut which then took care of the acidity.
I thought this might help some GERD sufferers. 🙂

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I'm impressed with the kefir and papaya regime. Years ago, after my thyroidectomy, I had GERD and took Prilosec for maybe 10 years. A functional medicine doctor helped me get rid of it with targeted antibiotics and going gluten free, but I also greatly improved my diet and wonder if I really needed the antibiotics. But the takeaway is that acid reducing medication can make everything worse because certain bad bugs can grow in a low acid environment. Lately I found that Diet Coke brings it back....

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@bevr

I'm impressed with the kefir and papaya regime. Years ago, after my thyroidectomy, I had GERD and took Prilosec for maybe 10 years. A functional medicine doctor helped me get rid of it with targeted antibiotics and going gluten free, but I also greatly improved my diet and wonder if I really needed the antibiotics. But the takeaway is that acid reducing medication can make everything worse because certain bad bugs can grow in a low acid environment. Lately I found that Diet Coke brings it back....

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@bevr did they test you for H.Pylori? Because that could also give you symptoms of GERD and antibiotics are prescribed to treat an H.Pylori infection.

Yes, gut bacteria is critical and most physicians are not addressing the root cause of disease.

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@cocha

@bevr did they test you for H.Pylori? Because that could also give you symptoms of GERD and antibiotics are prescribed to treat an H.Pylori infection.

Yes, gut bacteria is critical and most physicians are not addressing the root cause of disease.

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Yes. I had H.Pylori, though a mild case. Sometimes I wonder if antibiotics are always needed.

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I'm sorry you're going through this too. I had to have my thyroid removed due to cancer. Two times this happened & Dr said enough is enough, we need to remove it due to too many cancerous nodules coming back & too soon together.
I was put on levothyroxine after surgery at 100mg then added 25mg then up to 200, now I'm at 175mg.
It's definitely a roller coaster! I'm tired, have fatigue in afternoons, insomnia at night, weight gain since surgery in April. I'm a mess I'll admit. Dr is going to switch me over to name brand Synthroid medicine & see if that helps. I certainly pray it does.
Good luck on your journey & I hope all goes good for you.

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@colorado73

I'm sorry you're going through this too. I had to have my thyroid removed due to cancer. Two times this happened & Dr said enough is enough, we need to remove it due to too many cancerous nodules coming back & too soon together.
I was put on levothyroxine after surgery at 100mg then added 25mg then up to 200, now I'm at 175mg.
It's definitely a roller coaster! I'm tired, have fatigue in afternoons, insomnia at night, weight gain since surgery in April. I'm a mess I'll admit. Dr is going to switch me over to name brand Synthroid medicine & see if that helps. I certainly pray it does.
Good luck on your journey & I hope all goes good for you.

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@colorado73 - Getting regulated on Synthroid is much harder than I had ever heard about, however using the brand name eliminated some of the variables. I am working on getting the right dose for me and it is tricky. Although my TSH and T4 numbers are in the normal range the side issues were still terrible….. I have a lot of the same issues that you described. However, reducing the dose and monitoring the symptoms with the blood work has helped. I take 50 mcg a day and one day a week I take an additional dose ( 12.5 mcg…… half of a 25 mcg tablet). Having some of the negative issues improve makes me think I am on a better path and figure it will just take some time to get optimal results. One of the issues I had when seeing a previous doctor was that she just kept increasing my Synthroid and I think some of the issues I was experiencing was due to having too high of a dose. It is tricky but keep working with your doctor and go back for blood work as soon as possible when symptoms continue, so changes can be made. The headaches, insomnia, leg cramps, brain fog, depression, nausea, aches and pains will improve when the dose is right, but it’s important to use the blood level numbers AND how you are presenting to determine the best dose for you. Good luck!

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@koh

@colorado73 - Getting regulated on Synthroid is much harder than I had ever heard about, however using the brand name eliminated some of the variables. I am working on getting the right dose for me and it is tricky. Although my TSH and T4 numbers are in the normal range the side issues were still terrible….. I have a lot of the same issues that you described. However, reducing the dose and monitoring the symptoms with the blood work has helped. I take 50 mcg a day and one day a week I take an additional dose ( 12.5 mcg…… half of a 25 mcg tablet). Having some of the negative issues improve makes me think I am on a better path and figure it will just take some time to get optimal results. One of the issues I had when seeing a previous doctor was that she just kept increasing my Synthroid and I think some of the issues I was experiencing was due to having too high of a dose. It is tricky but keep working with your doctor and go back for blood work as soon as possible when symptoms continue, so changes can be made. The headaches, insomnia, leg cramps, brain fog, depression, nausea, aches and pains will improve when the dose is right, but it’s important to use the blood level numbers AND how you are presenting to determine the best dose for you. Good luck!

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Had a total thyroidectomy 51 years ago, when I was 24, & glad I did. Younger friends who were diagnosed 10 years later had a lumpectomy & were miserable, checking every 6 months for cancer. Why am I glad I had the total? So far no return of cancer. Learned to accept dry skin & tendency toward depression with self-care, meditation, 12-Step support groups for the past 36 years. 1 endo guy insisted I take Synthroid only, because generics lack quality control of dosage. At age 75, kind of late to try an alternative replacement. Primary & latest endo nurse check me out 1-2x/ yr.,not a problem. Note: As a senior, it's more important for you to have thyroidectomy, since thyroid cancer
spread after young adult is much faster & aggressive. Good luck & God bless. I'm grateful to be doing as well as I am: Train 3-4x/ week with cardio boxing,
seem fairly energetic on 50 mcg. Synthroid 6 days/wk., 1 mg on 7th day; have 2 indoor kitties, 1 porch kitty, looking for a cat-friendly puppy or young pup. Life is good. Look up Dr. Bernie Siegel books & cd's on what he learned from his cancer patients who defied their docs' prognosis. Hugs, Trudy

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I you have to ask for
Stats- I like numbers. What are the percentages and odds on cases like Mine!!??
Personally after having a perfect panel thyroid removed 8 years ago and a big lump in my neck that will be something I am sure- found it yesterday- if you are not risking death - what type is it. Stage and growth pattern- then decide. I want to research it and make
My own choices for sure. You will give
It WAY more
Thought and consideration than anyone
Else. Gather as much info as
You humanly can . It’s a
Gauntlet. Prayers and
Best wishes to you

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Did you recently find a lump on your neck?

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@cocha

@koh - so my endocrinologist had called for a TSH 1 week after the lobectomy and my TSH number was just over 5. (it was usually between 2 and 3 prior to surgery) She asked me to start taking Levothyroxine 50mcg which I took for a couple days without any side effects, and then stopped because the surgeon who I met the following week said I need to wait for my my 6 week bloodwork (to start on Levo), because the body was still adjusting. So come 6th week, I have my TSH levels tested and they are now at 11.5! So my endocrinologist asks me to start on 75mcg. Up until then, I have been feeling pretty normal. But 2 days into taking 75mcg Levothyroxine, I am feeling so sleepy in the mornings.

Is this just the body adjusting, or is this too much (or too less) Levothyroxine? I did not feel like this with 50mcg. And frankly, I was just fine without any thyroid hormone replacement.

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Hey @cocha
Long time no chat. I'm circling back to see how you've been faring on Levo since July. My lobectomy was on April 25th. For about 4 months, my TSH was in the normal range, albeit high. My new NP in Vermont ran my labs recently and my TSH had hit 6.81. She contacted my previous Endo in Maine who said I should start on 50 mcg of Levo. I've been dreading starting Levo because of all I've read and heard about the side effects. So I'm wondering if things have improved at all for you. Like you, I've had no symptoms, so it's especially hard to start a new drug when I feel okay.
Thanks for any info you're willing to share.

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