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Possible thyroid cancer but no follow up planned

Posted , 3 users are following.

shirlanne2017
shirlanne2017

Hello, I would be grateful for any feedback because I'm quite nervous since my last appointment with my endo. 

For 30 years I've been taking thyroid meds for Hashimoto's Thyroiditis and I just saw my endo for a checkup and this time he said my thyroid was enlarged and nodular. He suspects I may have "a little thyroid cancer" as he put it but he doesn't want to do anything but keep an eye on it. My symptoms are extreme fatigue, pressing feeling on my throat, difficulty swallowing, hoarseness when I talk, dry cough, and general malaise. My endo says that as long as I'm on enough thyroid replacement there's nothing to worry about. 

My thyroid levels are good and my tsh is very suppressed so the dr doesn't think that it will grow but I'm a nervous wreck since he raised the possibility of cancer. I want to know for sure and if it is cancer then decide whether to wait and see based on information and not a hunch. Am I being a worry wort or should I push for more tests? 

Any help would be appreciated.

0 likes, 16 replies

16 Replies

  • VictoriaRoy
    VictoriaRoy shirlanne2017

    Posted

    That was very inconsiderate and insensitive of the doctor to use the word CANCER and then do nothing. Of course you are going to worry!  Insist on a thyroid ultrasound!!!  Dont worry about the possibility of cancer, thyroid glands go nodular all the time, mine did, after several years of hashis. Ive had 2 ultrasounds since, and no change since the first one, and the nodules are benign. However, you need that ultrasound so you know exactly what is going on with your thyroid and to put your mind at ease.
    • shirlanne2017
      shirlanne2017 VictoriaRoy

      Posted

      Thank you so much for the reply.  Just wondered how others would respond to something like that before I full on panicked!  I think the thyroid ultrasound is a good idea and I'm going to try and get that in the works asap so I can know what is going on.  Many thanks for your encouragement!

    • VictoriaRoy
      VictoriaRoy shirlanne2017

      Posted

      Shirlanne, any normal person would panic after a doctor visit like that! I really can't see where he is coming from with a comment like "a little thyroid cancer", I can ony assume he means its a little 'nodul' and he doesnt expect it to grow.  However, most thyroid nodules are not 'cancer', and even though there is no way HE can tell what sort of nodule(s) yours are at this time, he's obviously pretty confident it's OK. An  ultrasound can confirm that the nodules are benign, and IF any nodule looks a bit suspect, its easy to do a needle biopsy of it.  When I was in a flap about my thyroid nodule, before my ultrasound, my GP said 'oh don't worry about it, anyhow, if you are going to get any sort of cancer, thyroid cancer is the best one to get'!  Seems thyroid cancer has a very high cure rate. But we still worry,  it's normal! 

    • shirlanne2017
      shirlanne2017 VictoriaRoy

      Posted

      Thanks for the encouragement VictoriaRoy.  Working on getting the proper tests so I can breathe easy about it regardless of what it is!
  • anne10359
    anne10359 shirlanne2017

    Posted

    Thyroid cancer is the best cancer to have, if you must have cancer, because it is encapsulated and very, very rarely affects other parts of the body.

    However your symptoms are not in line with a thyroid that needs no extra help...I am wondering if you have a parathyroid adenoma.  Your symptoms are consistent with that.  It is easy to find out....ask your doctor to test your calcium, PTH (parathyroid hormone) and Vit D levels.  Raised calcium (even slightly raised) accompanied by high PTH and low Vit D would tell you that you have a parathyroid adenoma.  This would require surgical removal and therefore they would probably remove any cancer on your thyroid at the same time.

    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      Oh my goodness I didn't know anything about a parathyroid adenoma.  I have requested the ultrasound already.  Will contact the dr again to ask for the blood work you suggested and hope they will agree to do it.  Such a fight to get any work done with my insurance but that sounds a bit more serious than the thyroid cancer.  Thanks for the info anne10359!

    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      anne10359 I had a thyroid ultrasound and blood work a couple of days ago.  The ultrasound showed a perfectly normal thyroid and the thyroid blood work was normal.  I asked the dr to check my parathyroid and the PTH was slightly elevated (66 pg/ml with range of 10 - 65 pg/ml).  I suspect my dr will brush this off since the serum calcium is in the low end of the range (9.6 mg/dl with the range being 8.5 - 10.3 mg/dl) but do you think it warrants any further investigation in light of my symptoms?
    • anne10359
      anne10359 shirlanne2017

      Posted

      When the PTH is raised, the calcium should be low, so I think that your blood test is likely saying things are okay.  Be worth getting them done again in a few months, just to double check.  A GP can do them easily enough.  Raised calcium, raised PTH and low vit D are the worrying results.
    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      Hi anne10359.  Thanks for the feedback on my blood work.  The dr ordered a vitamin d after seeing the elevated pth and it came back normal so perhaps there's nothing to worry about like you said.

    • anne10359
      anne10359 shirlanne2017

      Posted

      Usually they do the calcium, PTH and vit D in the same test, but hopefully your good vit D results do confirm that you don't have an adenoma.  Seems like it

       

    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      The dr added the vitamin d test to the original order so it was done on the same blood as the other tests.  He also just added a creatine test which came back normal, too.  His best guess is that I may have hypertrophy of parathyroid gland(s) and he didn't seem concerned about doing anymore follow up to find out why.  It just seems like something is wrong but not wrong enough for the dr to take it seriously not to mention the fact that I feel like heck and there's no explanation for it.  

    • anne10359
      anne10359 shirlanne2017

      Posted

      Perhaps you should ask for a referral from your GP to a different endocrinologist?  That way you will get a second opinion and will feel safer about trusting your endo if the opinion is the same.   Take copies of your test results with you to save having to do them all again and let the new endo know that you just felt that you were not getting answers that explained how sick you are.
    • anne10359
      anne10359 shirlanne2017

      Posted

      Actually I just googled hypertrophy of parathyroid gland and it reckons it is extremely rare and all 4 glands are likely to be enlarged.  I would definitely see another endo, if it was me.

      Good luck.

    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      Endo wants to wait 3 months and test again.  Says it's common in women over 50 to have enlarged parathyroids?  I have another endo but he's outside of my insurance so I can't afford to have him treat me but when I sent my labs to him he suggested I ask other endo to do a scan and if there are adenomas they should be removed regardless of calcium levels.  But that's not going to happen anytime soon.  Meanwhile I am sick and all they want to do is put me on antidepressants.  sad

    • anne10359
      anne10359 shirlanne2017

      Posted

      Your endo is right that the group most likely to have enlarged parathyroids is women over 50...but all of those women need surgery to remove them.  Those enlarged parathyroids don't shrink again and they constantly bombard our bodies with hormones releasing calcium from our bones.  The ONLY cure for parathyroid adenoma is surgery and your bones are at risk of osteoporosis, your kidneys of kidney stones...etc.  The man is a fool IMO!   

    • shirlanne2017
      shirlanne2017 anne10359

      Posted

      This is what you get with an HMO.  At least I got my primary care to order a bone density test so I can compare that to the last one to see if my osteopenia has gotten any worse.  If it's much worse then I'll take that to the endo and see if I can twist his arm to do the parathyroid scan.  Thanks for the support cause I don't know anything about parathyroid disease except what I read online and there seems to be controversy over how to manage it when serum calcium is normal.

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