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Debilitating fatigue after partial thyroidectomy for papillary cancer

Posted by beekeeperj @beekeeperj, Feb 1 5:51pm

I was just introduced to this support group and everyone’s descriptions of their experience has been helpful.

I had a partial thyroidectomy 4 months ago and started on Synthroid.25 mcg 2 months ago. Since the beginning of January I’ve had increasing fatigue requiring bed rest. 15 minutes of puttering in the house, loading the dishwasher and I’m exhausted, often have to lie down. I’m sleeping well.

Other symptoms are persistent nausea and dizziness. I’m told my levels are normal and no other intervention is offered.

Would love to hear if anyone else has experienced similar. Thanks

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

gillsden | @gillsden | Feb 2 8:02am

Hello - I posted a similar situation a few months back as well. I had a partial thyroidectomy. I experienced extreme fatigue to the point I couldn't get out of bed and bad muscle pain. I also am experiencing weight gain.
My first blood work showed I was now hypothyroid (levels were always good prior to finding out I had cancer.) The doctor said I would feel much better after getting my levels up with Synthroid. He put me on 75 mcgs. My last labs showed my thyroid levels were in optimum range and I was very surprised since I am still experiencing the symptoms. Its been six months for me. Follow up ultrasound next week. I don't understand what is happening and I am sorry to hear that you are experiencing the same. I am constantly searching for answers and will be sure to share should I find out something that will help make sense of it all. Best off luck to you and take care!

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1 reply
beekeeperj | @beekeeperj | Feb 8 4:36am
In reply to @gillsden "Hello - I posted a similar situation a few months back as well. I had a..." + (show)
@gillsden

Hello - I posted a similar situation a few months back as well. I had a partial thyroidectomy. I experienced extreme fatigue to the point I couldn't get out of bed and bad muscle pain. I also am experiencing weight gain.
My first blood work showed I was now hypothyroid (levels were always good prior to finding out I had cancer.) The doctor said I would feel much better after getting my levels up with Synthroid. He put me on 75 mcgs. My last labs showed my thyroid levels were in optimum range and I was very surprised since I am still experiencing the symptoms. Its been six months for me. Follow up ultrasound next week. I don't understand what is happening and I am sorry to hear that you are experiencing the same. I am constantly searching for answers and will be sure to share should I find out something that will help make sense of it all. Best off luck to you and take care!

Jump to this post

Hi- I thought I had responded to you but don’t see my post so I hope this isn’t a repeat.- I thank you for sharing your experience.

My partner ended up taking me to ER. Tests and specialists later the neurologist said I have signs of myasthenia gravis. Further tests to confirm but he gave me the medication for it and it is like magic. 20-30 min after taking one my eyes are effortlessly wide open, some energy and what a giant relief.

Ironically, I also saw the oncologist a few days later and he decided to increase my synthroid to 50 mcg since my levels are on the low side and I have an intolerance to cold.

Phew- I guess the lesson is to persist if I know something is not right. Thanks again.

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tuckie | @tuckie | Feb 9 9:58pm

Hi
What is your TSH? From 0.5 - 4.2 is normal.
Having more Synthroid brings your TSH down.
I know as I am 5 years post thyroidectomy. If you have cancer in 1 lobe thyroid it will be high on any possibility that you have a bit in the other, I did.

Ask top surgeon Mr Gary Clayman. He would remove the whole thyroid. Papillary Cancer disappears down Lymphs too.

I hope it was your choice to have only 1 lobe out. ??

So hypo-thyroid over 4.2. Hyper thyroid if under 0.5. I take more if I wish to bring TSH down and less Synthroid if you wish TSH to increase.

I made a horrible mistake when I reduced my usual Synthroid 125mg to 100mg to climb a little from TSH 1.3.

Instead over 3-4 weeks it climbed from TSH 1.3 to TSH 9.1. Whow and my clinic took 8 days to give me the result.
Then it was wrong at TSH 12!
I went on to increase 100 daily to 125mg daily for a week and then 150mg every other day. Friday's result was TSH 2.0.

So hypo it was no wonder in driving I had continual tired eyes.

So I have learnt my lesson to have careful survellance when you change your dosage. Weekly I reckon.

cheri JOY. (tuckie)

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