Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thyroid Surgery Possible Cancer

mygfworld

By mygfworld
in Related Issues & Disorders

Recommended Posts

mygfworld Apprentice
mygfworld
Posted

I've been having thyroid problems for over a year now. It looks like the dr will be removing my throid. Cancer is suspected. I'm waiting for the official test results. I already have Celiac and Hashimotos. It seems other autoimmune diseases have started up too. Feeling like I'm falling apart. So depressing.

I'm hoping someone can give me some advice.

How bad is the surgery?

What is the most helpful thing for recovery?

How do you cope?

Thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Surgery is basically nothing. I stayed an extra day in the hospital because of parathyroid issues, but most people are released the next day. Pain was minimal, went away quickly, and most people don't realize I have a scar unless I tell them.

StacyA Enthusiast
StacyA
Posted

I've known two people who went through surgery - both with flying colors. This may sound terrible - but if you could choose a cancer, doctors say thyroid cancer is one to choose. And one friend was soooo worried about a scar - but the doctor hid it in the natural wrinkle of her neck.

Big thing: check with the hospital kitchen ahead of time about if they can accommodate your diet if you have to stay there overnight. Otherwise pack some food or have plans for people to bring you food if you have to stay overnight (but most of the time it's an outpatient procedure, as far as I know.)

celiac-mommy Collaborator
celiac-mommy
Posted

I've known two people who went through surgery - both with flying colors. This may sound terrible - but if you could choose a cancer, doctors say thyroid cancer is one to choose.

I was going to say the same. I've had the surgery twice. Once when I was 8 and the other a few years ago. Every test I had before each surgery was inconclusive for cancer (multiple tumors all over the gland). The only issue I had with the first surgery was a possible complication of having my vocal chords severed. The post-op report (I obtained later) specifically stated that my chords were complete and intact. I had a voice, but it was really raspy for quite a while and I didn't completely get my full voice back for about a year. Later I was diagnosed with "exercise induced asthma" because I couldn't breathe when I ran at all, but inhalers didn't help. When all the tumers started growing again in my 20's, I saw some fabulous Dr's, and the surgeon who was going to remove the other 1/2 of the gland wanted to make sure all the vocal chords were intact so he sent me to an ENT dr to take a look. My left set of chords are severed and are wrapped around 1/2 of my trachea, paralyzed, so I don't have full expansion of my trachea when I'm breathing hard--exercising. It opens into a "D" shape instead of a complete "O" They had to be super careful during the 2nd surgery that they didn't injure or cut the other side, otherwise I'd most likely have a trach' for the rest of my life, but the 2nd surgery went totally smooth, and although they told me I'd probably never be able to run a mile, I've been running for years now and have completed many long distance runs since--I just know my limits :)

I'm not telling you this to scare you at all, as far as the surgery goes- super easy, just be aware that there are some possible complications. No regrets either, if I had to choose between having cancer and severing a set of vocal chords--cut the chords any day! ;)

wjp Newbie
wjp
Posted

I also have Hashimoto's and my right thyroid was removed in 2007. Just diagnosed with Celiac 1/10. As far as the surgery it was not bad. I stayed over night and even though they suspected cancer, it was not. My right thyroid was extremely inflamed (part of the Hashimoto's) but I did feel a lot better after the surgery. Voice raspy for about 1 to 2 weeks but was fine after that. Hope everything goes well for you.

  • 1 month later...
one more mile Contributor
one more mile
Posted

I had the surgery two years ago. I held it off because of fear of the scar. But the doctor did such a good job that most people do not see it till i point at it. It is in a natural neck crease. It looked really bad at first.so I wore a scarf for a few weeks.

The hard part was the biopsy they did before the surgery to look for cancer. They had do to that because the surgery is a little different if you do have cancer. They missed my cancer because it was tiny. Basically the size of a pencil point. It was fully encapsulated so I had the option of chemo. The doctor was leaving it up to me, which I though was a bad choice. So I leaned forward and asked if I was your sister or mother what would you tell me. We spiked the chemo. He just watches the blood work.

I feel so much better two years latter. sounds odd but My allergies are so much better after my thyroid was removed. My energy level is much more consistent day to day.

masterjen Explorer
masterjen
Posted

I feel for you. I don't have thyroid issues, but I have neuro. and autoimmune issues going on that I am getting checked out. I know what you mean about feeling like you're falling apart: up until such a short time ago I was so vital and energetic and now I feel pretty pathetic.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


georgie Enthusiast
georgie
Posted

My Goitre and nodules disappeared after using Armour thyroid medication ( old formula)and avoided surgery. Scan before and after showed they had disappeared. I now take T4/T3 synthetic combined treatment. Even now if I do not have enough T3 ( Cytomel) I can feel the thyroid swelling again. My TSH stays at 0.01 for safety.

  • 2 weeks later...
marwinbruck Newbie
marwinbruck
Posted

I've been having thyroid problems for over a year now. It looks like the dr will be removing my throid. Cancer is suspected. I'm waiting for the official test results. I already have Celiac and Hashimotos. It seems other autoimmune diseases have started up too. Feeling like I'm falling apart. So depressing.

I'm hoping someone can give me some advice.

How bad is the surgery?

What is the most helpful thing for recovery?

How do you cope?

Thanks!

I had thyroid surgery this past December after two years of telling my primary I did not feel well. They ignore you when you are over weight and over 50!!! I was lucky, they only had too remove half of my thyroid and it was not cancer. The worst part was the dressing they put over the incision. As I have been told, it will take months to get the medication correct. If you don't feel well after taking the medication for 3 months. Go back to the doctor and demand they test your levels again. When I went back to my endo and requested to be retested - he looked at me like I was crazy. I had my new primary do a blood test and my numbers are still low and my liver enzymes are way up. Listen to your body.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.