Large Goiter, Talk Of Removal - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Large Goiter, Talk Of Removal


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#1 rochellelopez

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Posted 13 June 2020 - 03:51 PM

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Hello everyone!
Hoping to get some input on thyroidectomy. I have been living with a very large thyroid for almost 7 years now. I was able to go in remission for 4 1/2 years then the last few months Im back on meds. My neck doesnt look horrible but its larger and wider than it should be from the thyroid. Every doctor that sees and feels it is like wow! But again not hugely visible thyroid to the untrained eye so I live with it.
Well my last scan showed its pushing a bit on my esophagus. Makes sense since I wheeze a bit when I jog. I also had a panic attack at the end of February, first time ever. It was before going diving I felt like I couldnt breath after getting the wet suit tight around my neck. So of course after the panic attack, stress of having a baby 8 months prior and covid Im back on meds.

 

My question is Im considering surgery this time but Im on the fence. I dont love the idea of having to be on meds for the rest of my life. I truly believe if I was in remission before I can achieve it again. But my thyroid is big! And I do think it prevented me from diving that day.
Does anyone have any feedback on graves and thyroidectomy? Are you able to lose weight? Is it a constant battle of getting the right dosage?
Thank you for your help in advance!!




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#2 mmztcass

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Posted 13 June 2020 - 04:14 PM

Hi rochellelopez:

 

I haven't been able to go back and do more research on your profile to reread up on the older posts, that is, as the posts aren't coming up.  

 

I seem to remember that you saw a functional doctor?  Are you still watching out for any dietary and environmental triggers?  Yes, I realized that having had a baby a few months prior likely set off the symptoms again. 

 

Are your thyroid levels of the Free T3 and the Free T4 are where they should be?

 

In my case with having had a bit of swollen thyroid (I am sure it wasn't as big as yours) which I found out from the past few prior (more like last year) that I couldn't tolerate synthetic vitamins.  I had to go more with whole foods based vitamins along with having adding liquid based minerals.  My thyroid then stopped pressing a bit at times into my throat.   

 

So now with just taking only the food based vitamins along with the liquid minerals in addition to trying to eat organic/non-GMO along with using safer household and personal products that the past few months since February, I have not taken any ATD.  Yes, all this during the COViD-19 situation.  I told my NMD that I was not ever going to go back on the synthetic vitamins and supplements as I felt these didn't help me and actually may have kept me in the "low" state of triggers daily from the on/off swollen thyroid.    

 

I don't have any experience with Thyroidectomies.  Only from what others have said and did.  Perhaps you could do further research?  Then do all the pros and cons with a Thyroidectomy.  A few people have said that with not having a thyroid meant they were dependent on replacement meds and didn't always get enough of these meds which resulted them in being hypO.  

 

{{{hugs}}}



#3 rochellelopez

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Posted 14 June 2020 - 07:25 PM

Hey mmztcaass,

Yes I have had a few posts before but it was a long time ago. This website has always been helpful though over the years!

 

Ive been seeing a functional medicine doctor for about 6 1/2 years. I still see a endocrinologist on top of that since my functional medicine doctor doesnt accept insurance. I have been on very clean supplements for years. I went gluten free almost 7 years ago and that helped me tremendously. I switched a good portion of my diet to organic, grass-fed over the years. Ive done elimination diets, paleo, refined sugar free for a year, and now I have been on auto-immune paleo protocol for 8 weeks. All the diets help me feel good and I am usually able to transition back to a gluten free clean diet after. But on all of those diets I have had the same size thyroid unfortunately. I try to eat and live clean, swapped out beauty products, chemicals to natural on almost everything. It can get crazy though on how there is so many things you can do! And expensive. It starts to control your life! So I just try to do my best. So with that being said the thyroid doesnt seem to change size. It will look less swollen and its definitely possible to get it to push a little less on my esophagus. But with how much bloodflow and activity it has all over ive been told it wont shrink down much. 

I will continue to research and take time before deciding. I definitely feel more comfortable handling hyper than hypo. Just because I know what I need to do and how to recognize symptoms on hyper. Hypo scares me!

But hopefully I can get some input from people who have had the surgery too.

 

Thank you so much for you input and help!



#4 mmztcass

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Posted 14 June 2020 - 08:31 PM

Hi rochellelopez:

 

Oh that sucks for sure about the thyroid size remaining the same for you.  

 

Now here is my next question.  How many children have you had since the thyroid diagnose a few years ago?  This would, I am sure, factor in with the wonky hormones and the back and forth of normal to pregnancy hormones and vice versa.

 

In my case, I was only diagnosed after the last pregnancy in 2000.  I was also pregnant in 1995 which I felt to be having very mild thyroid symptoms of some sort which corrected itself a few months after the pregnancy.  Of course with the last pregnancy, my symptoms switched on full blast after a few months.  Plus living next door to a landfill probably didn't help either.

 

{{{hugs}}} 



#5 rochellelopez

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Posted 14 June 2020 - 09:15 PM

Hi mmztcass!

 

Yes you make a very good point! I was diagnosed with Graves after my first pregnancy in 2013. Since then I have had two more pregnancies. The latest pregnancy feeling the hardest. Its tough bouncing back and forth for sure. I wondering if I gave more time in my healing process if things would calm down more. Im currently 1 year postpartum and cant quite get back to where I need to be yet.



#6 mmztcass

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Posted 15 June 2020 - 12:23 PM

Rochelle:

 

I am almost at the 20 year mark when GD symptoms first began for me.  My son, at the time, was 7 months old.  I tried holistic therapies first with using herbs before being put on the meds in 2003 after my suspected thyroid storm.

 

It has taken me a long time with going through all known triggers until earlier this year before I gave up a large bulk of my synthetic vitamins to switch to include all more organic/non-GMO whole foods and whole foods based vitamins.  I am entering my 5th month without any Methimazole.  Labs will done soon to see how I am doing.    

 

{{{hugs}}}  



#7 Allies

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Posted 16 June 2020 - 04:27 PM

Hi Rochelle :D

 

Goitres are strange beasties and it seems they can be related to either low thyroid hormone levels (where the thyroid increases in size in an attempt to capture as much iodine as possible in order to try and make more - needed - thyroid hormone); or high levels of thyroid stimulating immunoglobulin - TSI (where the TSI acts like TSH and similarly stimulates the gland to increase in size and increase thyroid hormone production - in this case not needed :( ) This means that either hypo or hyper can lead to an enlarged thyroid gland. I wonder though, if either of these might be the cause of the persistent goitre?

 

Have you ever had your iodine levels measured to see if too much or too little iodine intake might be influencing things? And have you had TSH receptor antibodies (such as TSI) tested recently?

 

For myself dietary interventions appear to have been quite impactful (not always in a positive way). I found that once I removed grains and dairy from my diet my iodine levels fell and so did my thyroid hormone levels (they became too low :( ) the goitre I started out with didn't come back though. I think my calcium levels also fell somewhat (not tested for directly, but suggested by mild osteopenia). I've come to the conclusion that if we remove certain things from our diets we are also effecting our nutritional profile and may fall short in some areas unless we ensure that we are somehow getting those nutrients from other sources. Since full-on AIP is, by design, a temporary measure, I'm not sure any nutrient deficiencies would be persistent, but long term paleo might be a problem if we don't consider our nutrient intake

 

I can't give you first hand experience of thyroidectomy as I've not done that - it would certainly remove the goitre (though it might not resolve whatever is causing the goitre in the first place). I think that post thyroidectomy quality of life is profoundly effected by the quality of the treating doctor, since they effectively become a gate-keeper for the supply of thyroid hormone replacement. After my early treatment, I became a bit 'gun shy' and not particulary trusting of an outside agency to get it right, but that's born from personal experience and not all doctors are necessarily bad at this.

 

Cheers
Allies
:D







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