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Beachhouse25
@coloradoroses

Posts: 3
Joined: Jun 04, 2016

Lingual thyroid

Posted by @coloradoroses, Jun 4, 2016

I was diagnosed with a lingual thyroid in my mid twenties, hypothyroid and have been on synthroid since that time. Recently, my thyroid levels have fluctuated a great deal and it may be related to hormones, (menopause). Is it common or suggested that a specialist take photos or images of the mass in order to establish a baseline? Is it common to experience fluctuations while on synthroid hyper and hypo? These seem to shift about every 4-6 months, with an accompanying adjustment in dosage. The last two times, I have been hyperthyroid and just want to rule out functional problems with lingual thyroid. Also having difficulty catching my breath and hoarseness. There is a shortage of endocrinologists in my city, and most of them have never treated someone with a lingual thyroid, just read about it in the literature. They have tried to visually see the thyroid gland at the my base of my tongue, but it is not necessarily always visible.

REPLY

Welcome to Connect @coloradoroses.
I’d like to introduce you to a few members who may be able to share information and experiences with you. @lynnkay1956 @neffjsn @katemn have recently mentioned that they also take or have taken Synthroid.

I’m also tagging @jmbjar @michellecrcrn to bring them into the conversation and may be able to give tips on finding a good endocrinologist and establishing baselines, etc.

@colleenyoung

Welcome to Connect @coloradoroses.
I’d like to introduce you to a few members who may be able to share information and experiences with you. @lynnkay1956 @neffjsn @katemn have recently mentioned that they also take or have taken Synthroid.

I’m also tagging @jmbjar @michellecrcrn to bring them into the conversation and may be able to give tips on finding a good endocrinologist and establishing baselines, etc.

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Thank you! I did not see the Discussion board for Endocrine issues so may have posted this in the wrong place. Yes, if you could move it to the Endocrine board, that would be great, many thanks.

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

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Hello Michelle, I have taken Synthroid for nearly 30 years .. since my 40’s.

I can only speak for myself but two things. Years ago my doctor told me to ALWAYS request SYNTHROID brand .. NEVER agree to a generic. Because
generic brands can vary in quality and ingredients. Since then I have had to be VIGILANT because my insurance requires a generic when available .. plus many doctors forget and prescribe the generic and I must remind them. This has led to a consistent quality of the prescription in my body for years.

Secondly .. I have struggled with thyroid issues .. various symptoms for years .. up and down dosages. Only this year did I smarten up and find the leading Endocrinologist in my city who is so good that he is working to balance my thyroid with not only Synthroid BUT also T3!! WOW .. why didn’t I find a good Endocrinologist years ago??? It is amazing to me how I am so vigilant in getting the very best resources for my ill husband . and in the past for my children .. BUT have put my own needs on the back burner much of the time! NOT “Due Diligence” for MYSELF!

OOPS! Thirdly .. I had another specialist who was surprised that in 2014 I had never had an Ultrasound of head and neck soft tissue to find evaluation of Hypothryroidism.
It also established a “baseline” for the future. Perhaps you should suggest some test of this kind? Research testing for your issue.

So these are the things I am doing for my thyroid issues .. hope you find it helpful!

The only other thing I would say is this . YOU are in charge of YOUR body. NO ONE cares about your body as much as you do! You are given just one body in this lifetime. You must take care of your body so IT can take care of you! If I was you I would really educate myself about the various options available for myself .. THEN do your own “Due Diligence”. Request/rREQUIRE whatever testing you feel you need. I have never forgotten a story I read years ago about a woman who never gave up .. she felt she knew her body better than any doctor. She ended up going to SEVENTEEN doctors before she received the accurate diagnosis for her issues. I have NEVER forgotten that story! Remember .. it is YOUR body .. take good care of it! Peace on your Journey! Katherine

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

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I was on synthroid for years and it did the opposite for me. Made my levels bonkers. Was taking Levo and my thyroid was optimal for years til just recently the last year. I always had ultrasounds done and blood work. But never had antibodies done til December which showed elevated levels. I suffered the pastvyearcwuth IBS issues and the gastro dr said 90% of our seratonin is in our guts and 10% in the brain. He said it’s the thyroid gut connection causing my issues- have had numerous ct scans , to rule out blockage and appendicitis with my history of surgeries and endometriosis. Since I’ve cut out most dairy and cut down on sugars and gluten my symptoms have 90% disappeared. I don’t eat processed foods either. My main symptoms are fluctuating hyper/hypo levels, joint pain/some swelling, fatigue. I think for me it’s a few things and my next step will be trying to start tirosint and see how that works. 🙂

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@colleenyoung

Welcome to Connect @coloradoroses.
I’d like to introduce you to a few members who may be able to share information and experiences with you. @lynnkay1956 @neffjsn @katemn have recently mentioned that they also take or have taken Synthroid.

I’m also tagging @jmbjar @michellecrcrn to bring them into the conversation and may be able to give tips on finding a good endocrinologist and establishing baselines, etc.

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@coloradoroses I can move this thread to the Endocrine System group if you like. Just let me know.

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

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I was told my thyroid was basically fried in 2010 because of the immunotherapy I had done during a 30 month clinical trial for stage 4 melanoma ( it was an expected side effect)…but I am NED ( remission). I was put on levothyroxine..but have considered going on Synthroid. I go between 137mcg to 125mcg. My onc always checked my T-3 and T-4 but the local primary care doctor does just a routine panel. I still feel like it’s out of whack!

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

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Hello Lynn, my what you have gone through! Perhaps read through what I wrote to Michelle .. hope you find something that might be of help to you! Peace on our shared journey! Katherine

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

Jump to this post

Yes! It was just about a year ago, and my levels were hyperthyroid, reduced the dosage then a few months later, still hyperthyroid. I chalked it up perhaps to menopause, but because I have a lingual thyroid, the issue of balance is even more vital. Wondering about changing to non-generic if again after a check in a few months the levels continue to be “off”.

@michellecrcrn

Just curious if you’ve noticed changes that started roughly about a year ago? That’s when my levels started changing. I swore it was the levothyroxine. I seemed fine and once I took my pill I felt off afterwards. I asked the pharmacist and she said yes they changed the formula a year ago. I wonder if it’s something also in the formula they changed or added. I’m looking into switching to tirosint. But ironically insurances don’t cover?! Unreal what we go through.

Jump to this post

Had my Thyroid removed in 1975. Hashimotos’ with cold nodules. Thyroid cancer in my family, sister, aunt, maternal grandmother. I’ve opted for Armour Thyroid. The times I was on Synthroid, my numbers were a mess. So I pay for the Armour.  It seems to be the only one that keeps me stable. Hope this helps someone.

Treating a thyroid balance has been very difficult for me. Started with Armour about 20 years ago. Recently I went to Levo but the potency seems to vary. Checked in to Synthroid but was quoted $53 for a months dosage. Insurance won’t cover. Would like to find an endocrinologist as my primary is doing a routine blood panel. Want my ultra sound repeated but he says it doesn’t usually develop into anything. You have to be really firm if you want to get anywhere with this. I get tired of fighting.

I moved this thread to the Endocrine group.

Welcome back @mohavegal. I bet @jmbjar can relate to getting tired of fighting. But if we don’t advocate for ourselves, who will? Right? Is it hard to find an endocrinologist in your area?

Hi. I also have a sublingual thyroid. I am looking for a doctor to remove it, as it has been causing much discomfort, and affecting my quality of life…

Welcome @kimr. If you would like to consider a Mayo Clinic surgeon, I encourage you to call the contact numbers on this webpage http://mayocl.in/1mtmR63.
In this Connect discussion several members (@allegro, @gailfaith and @upnorthnancy) speak of their experience with endocrinologists at Mayo Clinic in Minnesota
– Endocrine surgeons with expertise in parathyroid disease? http://mayocl.in/2cBck97

Kim, we look forward to getting to know more about you. Can you tell us a bit more about how your thyroid is affecting your quality of life/?

Thank you. It is quite uncomfortable at times. Feelings of fullness, aching, burning down side of neck. It is visible now, appearing as if I have a double chin. It is growing, but slowly. It measures about 3cm. It also has a mass within. Was biopsied last year, appears to be benign.

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