Author Topic: Anyone have their thyroid removed?  (Read 3042 times)

Tami1982

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Anyone have their thyroid removed?
« on: October 03, 2016, 04:41:05 PM »
I have been monitoring multi nodular goiters for about five years now.  They were pretty stable, but they have now grown. I have two on each lobe.  They are starting to impact my swallowing.  I have had multiple biopsies over the years and all come back clean. 

Since they have grown the doctor is sending me for a surgical consult.  My labs fluctuate every time I go in.   Hyper-normal-hypo-normal-hyper.  All over the place, but not huge swings.  Fairly narrow in scale.  Last labs, from two weeks ago - utterly normal. 

I'm concerned about removing what kinda works, and being on expensive medication the rest of my life.  I understand that some versions of hormone therapy are more effective than others, and the better ones are more expensive.  Getting stuck paying for meds for the rest of my life is not something I want to do.

I'm already trying to manage diabetes and chronic idiopathic inflammatory illness, this just seems like another thing.  I don't know if I should wait until I really struggle with swallowing - which may never happen or have it now. 

I also have huge bursts of energy, and then am down for weeks or even months.  I don't know if this is hormone related from the thyroid, from the diabetes, from the other conditions I have? Who knows!  I'm afraid of being hypo and exhausted the rest of my life.

Has anyone here had a similar situation or speak to their results post op?  Medication?  Any feedback would be helpful!

Thanks!
« Last Edit: October 03, 2016, 06:29:55 PM by Tami1982 »

arebelspy

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Re: Anyone have their thyroid removed?
« Reply #1 on: October 03, 2016, 05:42:52 PM »
My mother had her thyroid removed (IIRC, she was like.. 19, 20 maybe?), and takes a single pill each day for the hormones missing because of it.  I'll text her to see how much her medication costs.

EDIT: Followup: She said she pays $17/mo.  I asked if insurance was covering part, bringing it down to this amount, or if this was the total one would pay if uninsured.  She said no health insurance on it, but a Bartell Drugs pharmacy discount; full price would be $24/mo., for what she takes.  Can get more details (name of the drug or whatever) if you need.
« Last Edit: October 03, 2016, 06:01:09 PM by arebelspy »
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justchristine

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Re: Anyone have their thyroid removed?
« Reply #2 on: October 03, 2016, 05:58:17 PM »
I still have my thyroid but it essentially nonfunctional.  I'm on what's considered a full replacement dosage of levothyroxine which costs $10/month.  Fwiw, it works well for me.  I know other people that felt better on Armour or its equivalent.  When I tried that it was more like $40/Mo.  The only other drug would be Cytomel or its equivalents.  I've never been on it and from what I've heard it's harder to get a prescription for...not sure on price.  Honestly $10-40/Mo is a small price to pay if it will stop the hypo to hyper swings.  I only had one year long hyper swing before my thyroid gave up and went hypo.  I can't imagine dealing with that swing multiple times.

LeRainDrop

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Re: Anyone have their thyroid removed?
« Reply #3 on: October 03, 2016, 06:00:24 PM »
I'm sorry to hear of your thyroid irritation.  I'm 35, have a very small cyst on one side of my thyroid, and just recently started taking low-dose L-Thyroxine.  I'm finding it easier to keep my energy level stable and to take off weight.

One of my friends had half her thyroid removed around age 58.  The biopsy showed cancer, so they went back and removed the other half of her thyroid.  Amazingly, her doctor decided that she would not need hormone replacement medication.  The surgeries were about two years ago, and as far as I know, she remains cancer-free and doing well.  I haven't asked if the medication situation has changed since then, so maybe it has or maybe it hasn't.

My dad also had half his thyroid removed around five years ago, so he would have been about 60.  He has not been on any hormone medication, but just gets a new ultrasound done every 6 months or year, I can't recall which is his schedule.  The doctor has not found anything concerning since his surgery.

ETA:  I pay $20 for 90 days of medication.  Without insurance, it would be $33.59 for the same quantity.
« Last Edit: October 03, 2016, 06:06:15 PM by LeRainDrop »

hops

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Re: Anyone have their thyroid removed?
« Reply #4 on: October 03, 2016, 06:01:51 PM »
The most commonly prescribed replacement drug is levothyroxine, which is very affordable ($4 for a 30-day supply or $10 for a 90-day supply with most health plans; the brand name version, Synthroid, is what I take for more precise dosing and it's $260 per year). Once you're on it you'll need it for the rest of your life, there's no getting around that, but a dead (or missing) or wonky thyroid will mess with your health to such an extent that the cost is well worth it.

I have no personal experience with Armour or Nature-Throid but others might. Sorry I can't be of any help about thyroid removal itself; I still have mine, it's just completely useless.

(Others have beaten me to the punch!)

Life in Balance

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Re: Anyone have their thyroid removed?
« Reply #5 on: October 03, 2016, 06:15:21 PM »
I had my thyroid removed about 8 years ago.  The surgery recovery was very doable, about 2 weeks of limited neck movement, sleeping on back, etc.  Scar is barely noticeable now.  One thing I do notice is that it's nice my neck stays the same size now all the time (before it would swell, then shrink). 

Have been through the hypo-hyper swings back and forth over a long period of time.  They are exhausting, much worse than being just hypo or just hyper.  Now that I'm on Levothyroxine and my dose has been figured out, it's pretty smooth sailing.  When your thyroid is out of whack, it can contribute to some pretty weird symptoms and exacerbate other conditions.  So, having it removed may provide an unknown silver lining for you. 

The meds range from $4-12/month for me, depending on what my insurance is doing.  Since it tends to be a stable prescription (once you find the correct level), 90-day supplies are easy to do and probably cheaper too.  I'm investigating that option for myself for next year.  I've actually been on Levothyroxine for about 12 years, but had some trouble getting a stable dose figured out (due to undiagnosed Celiac and lack of absorption).  For a long-term med, it's fairly affordable. 

Guava

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Re: Anyone have their thyroid removed?
« Reply #6 on: October 03, 2016, 07:10:36 PM »
Posting to follow.

MsWillow

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Re: Anyone have their thyroid removed?
« Reply #7 on: October 03, 2016, 08:23:18 PM »
Posting to follow, as well. I have hypo too.

teen persuasion

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Re: Anyone have their thyroid removed?
« Reply #8 on: October 04, 2016, 06:23:18 AM »
My BIL had his thyroid removed, they said it was Hashimoto's disease.  He had an allergic reaction to the stainless steel staples used to close the incision.  He's been having problems getting to a stable dose level, so he has issues with sleeping, temps, energy levels.  Interesting that another poster mentioned undiagnosed Celiac disease affecting absorption - his fraternal twin brother is diagnosed with Celiac disease, and my sis suspects BIL may have tendencies as well, but they are having problems getting it confirmed.


Life in Balance

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Re: Anyone have their thyroid removed?
« Reply #9 on: October 04, 2016, 07:40:58 AM »
My BIL had his thyroid removed, they said it was Hashimoto's disease.  He had an allergic reaction to the stainless steel staples used to close the incision.  He's been having problems getting to a stable dose level, so he has issues with sleeping, temps, energy levels.  Interesting that another poster mentioned undiagnosed Celiac disease affecting absorption - his fraternal twin brother is diagnosed with Celiac disease, and my sis suspects BIL may have tendencies as well, but they are having problems getting it confirmed.

In my opinion, it's totally worth exploring (along with any other food sensitivities that would upset his digestive system).  Since it's absorbed in the small intestine, the Celiac had a huge impact on my absorption rate.  My dose varied from .125 to .250 mcg, which is a huuuuuuge range for Levothyroxine.  Once I went gluten-free (and made other changes to my diet), I settled in at .150 and have been there for 4 years.  I still occasionally test in the "hypo" range when I'm having food issues, but at least now I know a super clean diet (no dairy, no grains) will get me back on track without having to adjust my dose.  Much easier!!

Dulcimina

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Re: Anyone have their thyroid removed?
« Reply #10 on: October 04, 2016, 10:03:53 AM »
I had my thyroid ablated with radioactive iodine to treat Graves disease about 20 years ago. I was on Synthroid for the first 7-8 years, then Armour thyroid, and recently switched to Np thyroid ($14/3months) because Armour tripled in price to $90/3months.

Other costs - Some doctors might require you to see them every six months in order to refill your prescription.  Blood work might be required at least that often.   For at least one doctor, this was a money grab.  I'd ask him if I could have the blood work before my office visit, so we could discuss any changes and so he would know whether to adjust my dosage.  He always refused.  I have a high deductible health insurance, so for me this added up. I was seeing an ophthalmologist for the Graves eye disease and a gastroenterologist for digestive issues that developed after my thyroid was gone.  For a while, I was also seeing a naturopathic doctor, which wasn't covered by insurance.  Currently, I'm down to one functional medicine doc, I call her to have my prescription refilled, and I am the one who makes sure that I see her at least annually.

Miscellaneous other issues -
  • when I was on Synthroid years ago, there used to be times when it simply wasn't available.
  • Some people are OK with Synthroid alone.  Some of us needed T3 (or whatever else is in natural dessicated pills) as well.  You'll need to figure that out.
  • When Armour was reformulated, I  had return of hypothyroid symptoms indicating problems with absorption. Also, there have been times when my thyroid hormone/TSH levels were "normal" on paper.  But my cholesterol was high, I was gaining weight, my hair fell out and I had brain fog.  Even though those are classic symptoms of hypothyroidism, I had a hard time convincing the doctors that I wasn't just flaky, fat and lazy.


On the plus side, like Life in Balance and teen persuasion mentioned, figuring out food sensitivities is one area where you have control and it can actually help with autoinflammatory conditions.  For example, I've had Graves eye disease and all the issues that come with it for twenty years.  But since changing my diet, my eyes look normal and close normally again. 

LeRainDrop

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Re: Anyone have their thyroid removed?
« Reply #11 on: October 04, 2016, 12:01:16 PM »
My BIL had his thyroid removed, they said it was Hashimoto's disease.  He had an allergic reaction to the stainless steel staples used to close the incision.  He's been having problems getting to a stable dose level, so he has issues with sleeping, temps, energy levels.  Interesting that another poster mentioned undiagnosed Celiac disease affecting absorption - his fraternal twin brother is diagnosed with Celiac disease, and my sis suspects BIL may have tendencies as well, but they are having problems getting it confirmed.

In my opinion, it's totally worth exploring (along with any other food sensitivities that would upset his digestive system).  Since it's absorbed in the small intestine, the Celiac had a huge impact on my absorption rate.  My dose varied from .125 to .250 mcg, which is a huuuuuuge range for Levothyroxine.  Once I went gluten-free (and made other changes to my diet), I settled in at .150 and have been there for 4 years.  I still occasionally test in the "hypo" range when I'm having food issues, but at least now I know a super clean diet (no dairy, no grains) will get me back on track without having to adjust my dose.  Much easier!!

Hashimoto's is both a thyroid disorder AND and autoimmune disease.  Right before they actually tested my blood for it -- it turned out negative -- my endocrinologist told me that the most common food allergens associated with Hashimoto's are gluten and dairy, so if that turned out to be my issue, she would recommend that I eliminate those from my diet, one at a time, to test my body's response.  She also said that for any thyroid disorder in general, the most conservative course is still to experiment with eliminating possible food allergens -- people who are really, really worried about losing their thyroid in the future will often make these food changes right away.  However, if the thyroid changes in the future are still a long ways off or not personally all that worrisome to you, you don't have to modify your diet.  Early finding of thyroid disorder, it's really up to you if you want to go all out with the autoimmune diet or not.

Tami1982

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Re: Anyone have their thyroid removed?
« Reply #12 on: October 06, 2016, 04:47:51 PM »
Thank you every one, so much, for your responses.  Information overload!  I really feel like I don't grasp exactly what is going on and am definitely going to have to have more detailed conversations with my doctor.  I'm getting the Whole 30 book next week and going to read and prep for it.  I'm going to try it for 30 days.  I am really not wanting too and not looking forward to it (I'm going to work on this mentality!) but if this prevents surgery or maybe can shrink them due to their inflammation, I'm willing to give it a shot. 

I'm going to need some time to read, process, clean the kitchen, get stuff together and figured out.  When I do it, I will post on my journal because I'm definitely going to need support on this front. 

I'm glad to see that even though the meds vary in cost, it's not a tremendously expensive medication. 

Abe

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Re: Anyone have their thyroid removed?
« Reply #13 on: October 06, 2016, 07:13:41 PM »
Here is advice if pursuing surgery:
1. Make sure the surgeon is someone who does at least 1-2 thyroid operations a month. The risk of complications is related to the experience of the surgeon.

2. The main long term complaint after thyroidectomy is change in voice, and also symptoms of hypothyroidism despite normal thyroid hormone levels. The reason for both is not well understood.

teen persuasion

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Re: Anyone have their thyroid removed?
« Reply #14 on: October 06, 2016, 08:30:15 PM »
My BIL had his thyroid removed, they said it was Hashimoto's disease.  He had an allergic reaction to the stainless steel staples used to close the incision.  He's been having problems getting to a stable dose level, so he has issues with sleeping, temps, energy levels.  Interesting that another poster mentioned undiagnosed Celiac disease affecting absorption - his fraternal twin brother is diagnosed with Celiac disease, and my sis suspects BIL may have tendencies as well, but they are having problems getting it confirmed.

In my opinion, it's totally worth exploring (along with any other food sensitivities that would upset his digestive system).  Since it's absorbed in the small intestine, the Celiac had a huge impact on my absorption rate.  My dose varied from .125 to .250 mcg, which is a huuuuuuge range for Levothyroxine.  Once I went gluten-free (and made other changes to my diet), I settled in at .150 and have been there for 4 years.  I still occasionally test in the "hypo" range when I'm having food issues, but at least now I know a super clean diet (no dairy, no grains) will get me back on track without having to adjust my dose.  Much easier!!

Hashimoto's is both a thyroid disorder AND and autoimmune disease.  Right before they actually tested my blood for it -- it turned out negative -- my endocrinologist told me that the most common food allergens associated with Hashimoto's are gluten and dairy, so if that turned out to be my issue, she would recommend that I eliminate those from my diet, one at a time, to test my body's response.  She also said that for any thyroid disorder in general, the most conservative course is still to experiment with eliminating possible food allergens -- people who are really, really worried about losing their thyroid in the future will often make these food changes right away.  However, if the thyroid changes in the future are still a long ways off or not personally all that worrisome to you, you don't have to modify your diet.  Early finding of thyroid disorder, it's really up to you if you want to go all out with the autoimmune diet or not.

Wow, these things are really intertwined, and it seems some doctors don't know it.

My BIL was told it was either Hashimoto's or thyroid cancer, so they wanted to remove it in one go, and biopsy afterwards to confirm.  No cancer, so presumptive Hashimoto's.  They told him it was probably some minor virus he had that triggered his immune system to attack his thyroid.  I've never heard that they were told of a connection between food sensitivities and thyroid issues; I'm sure my sister would have explored that if she was aware, she's been eliminating any possibly problematic foods from the family diet to try to address their son's GI issues.

LeRainDrop

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Re: Anyone have their thyroid removed?
« Reply #15 on: October 06, 2016, 09:15:24 PM »
Hi, teen persuasion, I'm not a doctor or a medical professional, but just conveying what my endocrinologist told me when I saw her in August.  I'm not sure she meant that food allergens necessarily cause the thyroid disorder to begin in the first place, but rather that they can exacerbate that condition.  Here are a couple online resources that I found that may be helpful to your BIL:

http://thescienceofeating.com/food-combining-how-it-works/eating-with-hashimotos-disease/
https://www.hashimotoshealing.com/hashimotos-diet-keys-to-success/

bogart

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Re: Anyone have their thyroid removed?
« Reply #16 on: October 06, 2016, 09:37:05 PM »
I used to take Levothyroxine for hypothyroidism -- don't anymore/currently (T4, the thyroid hormone that is Levothyroxine, binds with estrogen and I am a perimenopausal woman, so this is not weird -- as my estrogen levels have declined, my semi-functional thyroid is coping better with my body's demands).  It's been a long time since I needed to look this up (and I am not a medical professional, etc. etc.) but my recollection is that only the thyroid can make T4, which is a largely stable/unused compound until the body needs it, then the thyroid and some other organs (kidneys? I forget) have the ability to turn T4 into T3 which is the "usable" form of the hormone, then the body uses it up and it is gone.

Levothyroxine is just T4.  This works well for many people and is relatively easy to dose and take because the body can let appropriate amounts of it sit around "in the system" until it is needed for T3.  OTOH, some people seem also to have trouble converting T4 to T3 and find they do better taking a product that contains both (Armour) or a T4 product + a T3 product (Cytomel).  Things that contain T3 generally have to be taken twice daily I believe, and are harder to get the dosage right. 

Unfortunately I don't think you know until you're trying, which group you're in.  I tried both (Levothyroxine and Armour) at different times and found the straight-up T4 worked better for me.

That said, having your thyroid out of whack is really, really annoying and leads to all kinds of nutty symptoms.  So getting problems addressed is probably worth doing.  And yes, the medications are usually pretty darned cheap.