1. < Thyroid Cancer

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.

koh | @koh | Jul 20, 2023
In reply to @cocha "Hi @lise01, @hopeful23, @koh - it's been a while since I posted here. Thank you all..." + (show)
@cocha

Hi @lise01, @hopeful23, @koh - it's been a while since I posted here. Thank you all for your updates and tips!

@lise01 good to know that you found a new GP and good luck with the oncologist appointment. I am waiting to get my TSH levels tested next week to see if there is much change from the thyroid hormone test a week after the surgery. I haven't gained any weight so far, but the scar is a thick dark line more than a month after the surgery. I am not sure if that is normal or if something else is going on. I am applying scar cream and silicone scar sheets and have never exposed the scar to sunlight, but there is no change yet.

@hopeful23 congratulations on the move! Hope you are enjoying the new place. Any updates on the thyroid hormone testing?

And how are you all feeling overall after the surgery? Are there major changes that you see?
For me, more than anything else, my GERD/Acid Reflux is completely out of control right now. (For the last year, that is the only other medical issue I have had and the PTC diagnosis came out of nowhere because I was thinking something with my colon or esophagus would show up in the tests I had.) I am at my wits' end and I wonder if the acid reflux has become worse because of changes in the thyroid hormone levels?

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My GERD was MUCH worse after having lobectomy. The doctor told me that this was very common. I think the nodule might have blocked how far the stomach acid could travel and added a little protection.
I have issues with teh side effects of the medicine often prescribed for GERD, I got relief by trying a few modifications (raise the head of the bed……wood blocks or books work!), eat dinner earlier (and no snacks after dinner); and taking Gaviscon before I went to bed. Keeping the acid down helps a lot!
Good luck!

REPLY
cocha | @cocha | Jul 20, 2023

Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was that the two are connected. I have been doing all that you have suggested. In addition, I have recently started having store bought (unsweetened, non-flavored) kefir while I wait for my kefir making process at home to resume (reactivating the grains) and I think that has been helping some. In a day or two I will be consuming the kefir made at home. I hope those probiotics continue to help.
I have the same issue as you - my body does not do well at all with most medications. I have to choose more natural means of fixing health issues most of the time. Famotidine and Omeprazole made my GERD worse.

How many weeks after your surgery did you test for TSH levels? And are you on Levothyroxine? Also my scar shows no sign of lightening more than a month after the surgery. In fact, it's become darker. But that is the least of my concerns right now. GERD is the main issue.

REPLY
3 replies
koh | @koh | Jul 21, 2023
In reply to @cocha "Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was..." + (show)
@cocha

Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was that the two are connected. I have been doing all that you have suggested. In addition, I have recently started having store bought (unsweetened, non-flavored) kefir while I wait for my kefir making process at home to resume (reactivating the grains) and I think that has been helping some. In a day or two I will be consuming the kefir made at home. I hope those probiotics continue to help.
I have the same issue as you - my body does not do well at all with most medications. I have to choose more natural means of fixing health issues most of the time. Famotidine and Omeprazole made my GERD worse.

How many weeks after your surgery did you test for TSH levels? And are you on Levothyroxine? Also my scar shows no sign of lightening more than a month after the surgery. In fact, it's become darker. But that is the least of my concerns right now. GERD is the main issue.

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@cocha- I think I had follow up bloodwork about a 4-5 weeks after surgery and then again about 6 weeks later…. I have been having blood work about every 6 weeks due to fluctuations in levels and symptoms.
I was having symptoms of thyroid disease and felt terrible. 4 months after surgery I had to go on Synthroid ( I wanted the brand name to start out to minimize any variables). As soon as I started the medication I felt better than I had, however it has been very difficult to get regulated on it. Very tricky!
From what I read, they often try and keep the thyroid number very low to prevent cancer from spreading, however I just kept feeling worse every time dose was increased. I changed doctors and this one seems to listen to my symptoms and considers changes.
My doctor said that my TSH numbers are in the normal range however this range might not be normal for me, so he looked at old blood work and said we could try and get me to a similar level and see how I feel.
Getting regulated on Synthroid has been tricky but the issues from not taking it were severe…..if you don’t feel well, definitely give yourself time to adjust to it and monitor your symptoms. The smallest increments can make big changes with how you feel, however it takes about 6 weeks for the levels to show in bloodwork.
Good luck!

REPLY
2 replies
koh | @koh | Jul 21, 2023
In reply to @cocha "Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was..." + (show)
@cocha

Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was that the two are connected. I have been doing all that you have suggested. In addition, I have recently started having store bought (unsweetened, non-flavored) kefir while I wait for my kefir making process at home to resume (reactivating the grains) and I think that has been helping some. In a day or two I will be consuming the kefir made at home. I hope those probiotics continue to help.
I have the same issue as you - my body does not do well at all with most medications. I have to choose more natural means of fixing health issues most of the time. Famotidine and Omeprazole made my GERD worse.

How many weeks after your surgery did you test for TSH levels? And are you on Levothyroxine? Also my scar shows no sign of lightening more than a month after the surgery. In fact, it's become darker. But that is the least of my concerns right now. GERD is the main issue.

Jump to this post

@cocha- as for the scar…. I was using silicone covering however it just kept getting lighter. It was never very big. Definitely give it time! The nurses at the hospital suggested I take picture of my scar every day so I could see the changes. This was very helpful because I could compare it to earlier pictures and see improvements.
I don’t think you need to worry about a dark scar a month after surgery.

REPLY
tglapin1974 | @tglapin1974 | Jul 22, 2023

52 year- survivor of thyroid cancer here. Glad my surgeon removed entire gland. Only side effects: Extra skin dryness, need to monitor bone density for osteoporosis, tendency toward depression that can be managed with daily meditation, regular exercise, a spiritual support group. The older I get, the harder I work to maintain physical, emotional, spiritual wellness. It can be done, thank God. I've learned to become my own best friend, partner with God & an understanding doc, to monitor progress & track changes. Welcome to the club. With love & patience for yourself, you can do this! Ask questions of your health practitioners. I have done ok on Synthroid, but everyone is different. All the best,
Trudy, age 75

REPLY
1 reply
tglapin1974 | @tglapin1974 | Jul 23, 2023
In reply to @tglapin1974 "52 year- survivor of thyroid cancer here. Glad my surgeon removed entire gland. Only side effects:..." + (show)
@tglapin1974

52 year- survivor of thyroid cancer here. Glad my surgeon removed entire gland. Only side effects: Extra skin dryness, need to monitor bone density for osteoporosis, tendency toward depression that can be managed with daily meditation, regular exercise, a spiritual support group. The older I get, the harder I work to maintain physical, emotional, spiritual wellness. It can be done, thank God. I've learned to become my own best friend, partner with God & an understanding doc, to monitor progress & track changes. Welcome to the club. With love & patience for yourself, you can do this! Ask questions of your health practitioners. I have done ok on Synthroid, but everyone is different. All the best,
Trudy, age 75

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Hugs back. Keep on keeping on. You can do it!

REPLY
cocha | @cocha | Jul 24, 2023
In reply to @koh "@cocha- I think I had follow up bloodwork about a 4-5 weeks after surgery and then..." + (show)
@koh

@cocha- I think I had follow up bloodwork about a 4-5 weeks after surgery and then again about 6 weeks later…. I have been having blood work about every 6 weeks due to fluctuations in levels and symptoms.
I was having symptoms of thyroid disease and felt terrible. 4 months after surgery I had to go on Synthroid ( I wanted the brand name to start out to minimize any variables). As soon as I started the medication I felt better than I had, however it has been very difficult to get regulated on it. Very tricky!
From what I read, they often try and keep the thyroid number very low to prevent cancer from spreading, however I just kept feeling worse every time dose was increased. I changed doctors and this one seems to listen to my symptoms and considers changes.
My doctor said that my TSH numbers are in the normal range however this range might not be normal for me, so he looked at old blood work and said we could try and get me to a similar level and see how I feel.
Getting regulated on Synthroid has been tricky but the issues from not taking it were severe…..if you don’t feel well, definitely give yourself time to adjust to it and monitor your symptoms. The smallest increments can make big changes with how you feel, however it takes about 6 weeks for the levels to show in bloodwork.
Good luck!

Jump to this post

Thanks @koh. I had my bloodwork done today and the TSH numbers are way out of the normal range. But I have been feeling quite normal. I have asked my endocrinologist if I need to now start on Levothyroxine. Let's see what they say.

REPLY
1 reply
hopeful23 | @hopeful23 | Jul 24, 2023
In reply to @cocha "Thanks @koh. I had my bloodwork done today and the TSH numbers are way out of..." + (show)
@cocha

Thanks @koh. I had my bloodwork done today and the TSH numbers are way out of the normal range. But I have been feeling quite normal. I have asked my endocrinologist if I need to now start on Levothyroxine. Let's see what they say.

Jump to this post

Cocha, I’m getting another TSH test in 2 weeks (right before I move to VT) and my endocrinologist said that if my level is >4.5, I’ll probably have to start Levo.

REPLY
cocha | @cocha | Jul 27, 2023
In reply to @koh "@cocha- I think I had follow up bloodwork about a 4-5 weeks after surgery and then..." + (show)
@koh

@cocha- I think I had follow up bloodwork about a 4-5 weeks after surgery and then again about 6 weeks later…. I have been having blood work about every 6 weeks due to fluctuations in levels and symptoms.
I was having symptoms of thyroid disease and felt terrible. 4 months after surgery I had to go on Synthroid ( I wanted the brand name to start out to minimize any variables). As soon as I started the medication I felt better than I had, however it has been very difficult to get regulated on it. Very tricky!
From what I read, they often try and keep the thyroid number very low to prevent cancer from spreading, however I just kept feeling worse every time dose was increased. I changed doctors and this one seems to listen to my symptoms and considers changes.
My doctor said that my TSH numbers are in the normal range however this range might not be normal for me, so he looked at old blood work and said we could try and get me to a similar level and see how I feel.
Getting regulated on Synthroid has been tricky but the issues from not taking it were severe…..if you don’t feel well, definitely give yourself time to adjust to it and monitor your symptoms. The smallest increments can make big changes with how you feel, however it takes about 6 weeks for the levels to show in bloodwork.
Good luck!

Jump to this post

@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.

REPLY
2 replies
cocha | @cocha | Jul 27, 2023
In reply to @cocha "Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was..." + (show)
@cocha

Ah, thanks @koh! My GERD is definitely much worse after the lobectomy and my suspicion was that the two are connected. I have been doing all that you have suggested. In addition, I have recently started having store bought (unsweetened, non-flavored) kefir while I wait for my kefir making process at home to resume (reactivating the grains) and I think that has been helping some. In a day or two I will be consuming the kefir made at home. I hope those probiotics continue to help.
I have the same issue as you - my body does not do well at all with most medications. I have to choose more natural means of fixing health issues most of the time. Famotidine and Omeprazole made my GERD worse.

How many weeks after your surgery did you test for TSH levels? And are you on Levothyroxine? Also my scar shows no sign of lightening more than a month after the surgery. In fact, it's become darker. But that is the least of my concerns right now. GERD is the main issue.

Jump to this post

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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