1. < Neuroendocrine Tumors (NETs)

After NET surgery I went from having hypothyroidism to hyperthyroidism

Posted by Sherry @bluebelle, Oct 14, 2023

Hi! I have had hypothyroidism for many years. Now after my NET surgery on 8-7-23 in which the surgeon removed a large tumor in my small intestine, one of top of it, one in the lymph node of that area, and 10 other lymph nodes, I now have hyperthyroidism. I continue to drop weight, be shaky, feel hyper, dizzy, not focused, etc. and have diarrhea. I thought all the diarrhea and weight loss I’m experiencing was due to my surgery and some bile acid malabsorption (which they believe is a factor). My hormones are going haywire! My doc is adjusting my thyroid meds and I will see a new Endocrinologist in a couple of weeks. My full body PET scan is the first week of November, and follow up with the oncologist is 11-14 to determine treatment options. Has anyone else experienced this type of reaction after NET surgery?
Thanks!!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2023

I’m tagging @khauert @makebadaniels73 and @sun56 on this discussion in case they have experiences regarding hypo- and hyper-thyroidism that may be related.

@bluebelle, have you seen the endocrinologist yet or is the appointment coming up this week? How are you feeling?

REPLY
Sherry | @bluebelle | Oct 23, 2023

Thank you so much for responding… I am seeing a new endocrinologist on the 31st, as my old one would never reach back out to me:( I’m the meantime I am taking 75 mg Levothyroxine and cut out the pill that was the T3 component (Levothyronine Sodium?) per my PCP until I see my new doctor. I am feeling a little bit better so maybe it’s settling down some. I am having my PET scan in 11-3 and will be seeing a new oncologist on the 6th that specializes in NET cancer. I am so ready to move forward with this and begin treatment in hopes of feeling better soon…

REPLY
1 reply
makebadaniels73 | @makebadaniels73 | Oct 23, 2023
In reply to @bluebelle "Thank you so much for responding… I am seeing a new endocrinologist on the 31st, as..." + (show)
@bluebelle

Thank you so much for responding… I am seeing a new endocrinologist on the 31st, as my old one would never reach back out to me:( I’m the meantime I am taking 75 mg Levothyroxine and cut out the pill that was the T3 component (Levothyronine Sodium?) per my PCP until I see my new doctor. I am feeling a little bit better so maybe it’s settling down some. I am having my PET scan in 11-3 and will be seeing a new oncologist on the 6th that specializes in NET cancer. I am so ready to move forward with this and begin treatment in hopes of feeling better soon…

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Hello @bluebelle ! I have Hyperthyroidism and experience some uncontrollable swelling in my lymphnods at times. I also have nodules and goiters that MOST walk around with and dnt even knw they have them. However mines get irritated due to my NETs at times. I visit an Endocrinologist every 6 months to keep an eye on my situation because if they get 1.5 in size then there will be need for treatment and/or surgery. I also have soft tissue throat scans every 6 months as well. I'm Praying for some relief for u as u seek a new Endocrinologist and I'm continuing to Pray for US ALL with this neuroendocrine that's not so much as discussed as should be,for it affects more than we know. I pray this helped in some way.

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1 reply
Sherry | @bluebelle | Oct 23, 2023
In reply to @makebadaniels73 "Hello @bluebelle ! I have Hyperthyroidism and experience some uncontrollable swelling in my lymphnods at times...." + (show)
@makebadaniels73

Hello @bluebelle ! I have Hyperthyroidism and experience some uncontrollable swelling in my lymphnods at times. I also have nodules and goiters that MOST walk around with and dnt even knw they have them. However mines get irritated due to my NETs at times. I visit an Endocrinologist every 6 months to keep an eye on my situation because if they get 1.5 in size then there will be need for treatment and/or surgery. I also have soft tissue throat scans every 6 months as well. I'm Praying for some relief for u as u seek a new Endocrinologist and I'm continuing to Pray for US ALL with this neuroendocrine that's not so much as discussed as should be,for it affects more than we know. I pray this helped in some way.

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Thank you so much!! Yes, you have helped me a lot! It really helps to know that someone else just ‘gets it’ and knows exactly what you’re going through. My lymph nodes in my neck are swollen and actually hurt lately so I’m anxious to see the new endocrinologist. I’m really anxious to begin some kind of treatments soon too…I just want to feel better:) Prayers for you too as we battle this together…❤️

REPLY
1 reply
makebadaniels73 | @makebadaniels73 | Oct 23, 2023
In reply to @bluebelle "Thank you so much!! Yes, you have helped me a lot! It really helps to know..." + (show)
@bluebelle

Thank you so much!! Yes, you have helped me a lot! It really helps to know that someone else just ‘gets it’ and knows exactly what you’re going through. My lymph nodes in my neck are swollen and actually hurt lately so I’m anxious to see the new endocrinologist. I’m really anxious to begin some kind of treatments soon too…I just want to feel better:) Prayers for you too as we battle this together…❤️

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Yesss...even hurts to swallow at times. No worries Sweetie, God is gonna make sure that you get the RIGHT Endocrinologist that will help you get the answers you are looking for. In the meantime, watch your spices and stress can kick it up as well so stay away from any and all stress and knw that we are all here for some type of comfort, for we all are going through. Please keep us updated on your visit. I'm glad I could be of some help!
😇😊

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