Lingual thyroid

Posted by Beachhouse25 @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.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

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.

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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?

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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...

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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/?

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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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Hi kimr, I didn't have your exact problem, but at the beginning of this year my PCP told me I should have a parathyroidectomy as my serum calcium level was too high, but that I was too old and that surgery was too risky for me. I did some looking on the internet and a found that it was recommended that the surgeon you find should do at least 3 of these surgeries a week successfully and each within 15 minutes! I had to take 3 flights out to get to Mayo as I knew that a surgeon there would undoubtedly have those qualifications. When I met with the surgeon they assigned to me, asked those questions. She said she had done at least 4500 of them, she only operates on the thyroid and parathyroid, and she works 3 days a week! The surgery proceeded without any complications and I was on my way home within 24 hours! And full recovery has been uneventful and succeeded in lowering my calcium level to the appropriate level. . Besides, she had a great "bedside manner" and was a joy to work with.as was the doctor who over-saw all my preliminary tests and thru the whole time I was at Mayo. This was my second trip to Mayo for a totally different issue.. @gailfaith

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@gailfaith

Hi kimr, I didn't have your exact problem, but at the beginning of this year my PCP told me I should have a parathyroidectomy as my serum calcium level was too high, but that I was too old and that surgery was too risky for me. I did some looking on the internet and a found that it was recommended that the surgeon you find should do at least 3 of these surgeries a week successfully and each within 15 minutes! I had to take 3 flights out to get to Mayo as I knew that a surgeon there would undoubtedly have those qualifications. When I met with the surgeon they assigned to me, asked those questions. She said she had done at least 4500 of them, she only operates on the thyroid and parathyroid, and she works 3 days a week! The surgery proceeded without any complications and I was on my way home within 24 hours! And full recovery has been uneventful and succeeded in lowering my calcium level to the appropriate level. . Besides, she had a great "bedside manner" and was a joy to work with.as was the doctor who over-saw all my preliminary tests and thru the whole time I was at Mayo. This was my second trip to Mayo for a totally different issue.. @gailfaith

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Gail, I LOVE your response! Talk about "due diligence" in educating yourself and THEN taking matters/your health/your life/your serenity into your own hands! You go girl! Kudos to you! Katherine

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@gailfaith

Hi kimr, I didn't have your exact problem, but at the beginning of this year my PCP told me I should have a parathyroidectomy as my serum calcium level was too high, but that I was too old and that surgery was too risky for me. I did some looking on the internet and a found that it was recommended that the surgeon you find should do at least 3 of these surgeries a week successfully and each within 15 minutes! I had to take 3 flights out to get to Mayo as I knew that a surgeon there would undoubtedly have those qualifications. When I met with the surgeon they assigned to me, asked those questions. She said she had done at least 4500 of them, she only operates on the thyroid and parathyroid, and she works 3 days a week! The surgery proceeded without any complications and I was on my way home within 24 hours! And full recovery has been uneventful and succeeded in lowering my calcium level to the appropriate level. . Besides, she had a great "bedside manner" and was a joy to work with.as was the doctor who over-saw all my preliminary tests and thru the whole time I was at Mayo. This was my second trip to Mayo for a totally different issue.. @gailfaith

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Thanks, Katherine., gailfaith

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