ADVISE NEEDED: Asymmetric Thyroid with one lobe wrapping to the back of esophagus - I am a newbie

[Miah924]

Hello all!

This is my first post and a newbie to this site. I’ve tried doing a little research on here regarding an asymmetric thyroid but haven’t really found what I was looking for.

Okay, for background information. I am a 30yo female and have classic thyroid issues for over two years. I am in the US. Thyroid issues run strong in my family history on both sides (father’s and mother’s side). All the women in my family, aside from one (who had Graves and a thyroidectomy), have hypothyroid issues and are medicated. My grandfather even had a goiter. Most of them were diagnosed in their late 30s to early 40s.

I’ve had a constant Globus sensation in my throat which is annoying all the time and, on some occasions, hurts because of the pressure. I have achy joints, tinnitus, constant fatigue, dry nails / hair, low libido, headaches, weight gain, the list goes on. It’s been such an effort to get testing done for my thyroid. After three appointments, my GP did one test (TSH- 1.712 mcIU/mL (Range 0.358-3.74)) and an ultrasound (see below) that came back normal and said she had no results to send to an Endocrinologist. But she said that it was probably sinus issues and sent me to an ENT. My ENT has been a godsend and first tested for sinus and reflux issues and everything came back normal. She then continued tests which included a CT scan and thyroid bloodwork.

Now for the technical information:

Ultrasound results- Right thyroid measures 4.7 x 1.2 x 1.7 cm, Left thyroid measures 2.7 x 0.7 x 1.0 cm, Isthmus is normal thickness. Remarks: Unremarkable thyroid ultrasound

CT results- There is slight asymmetry in the size of the thyroid lobes with the right thyroid lobe being slightly larger than the left. No thyroid lobe nodules. The mucosal surfaces of the aerodigestive tract appear normal. Impression: No significant abnormalities of neck

Thyroid Bloodwork- Thyroid Simulating Immunoglobulins <0.10 IU/L (Range 0.00-0.55); Thyroglobulin AB <1.0 (Range 0.0-0.9), Thyrotropin Sensitive (TSH) 1.560 mcIU/mL (Range 0.358-3.74), Thyroxine Free (T4) 1.02 ng/dL (Range 0.76-1.46)

My ENT interpreted this information and was shocked to see my CT scan. She showed me that my right thyroid lobe is almost twice the size of my left thyroid lobe and my right thyroid lobe wraps around to the back of my esophagus. She said that she has personally never seen that before but it has happened to others, it’s just rare to see. When she looked at my bloodwork, she said everything looks normal. At this point she said that I could just be really sensitive to my right thyroid lobe and put surgery on the table to remove the right thyroid lobe only. She would be the one conducting the surgery as she is located at the hospital and is the one to do thyroidectomies.

Now for the questions:

Is there such a thing as an asymmetric thyroid that functions normally?

Should I get my ENT to confer with an Endocrinologist to determine that surgery would be best? Or should I ask to be seen by an Endocrinologist?

Should I see about any other tests to do? I am not to familiar with all the options to test.

My right thyroid lobe seems to be within normal dimensions but my left thyroid lobe seems tiny. That’s odd? With surgery on the table for my right thyroid lobe I am concerned that my left thyroid lobe wouldn’t be able to compensate, if that is even a thing.

I am slightly concerned about my right thyroid mostly because it wraps around to the back of my esophagus. If I do start having more serious issues this might become a major problem. My husband and I are planning to have kids (get pregnant) this coming year and I would like to have some closure to this before that happens, especially since pregnancy can mess with hormones and all (my older sister had a thyroid storm after she gave birth to her first child).

I really do appreciate everyone for reading this long-winded post and any advise is very welcome. Thanks in advance.

[JudithW]

Miah 924 welcome aboard. I wonder if a partial Thyroidectomy might be the best answer, ie removal of part of the right lobe. If your tests are normal then there is not over production of the hormones, reduction in size of the right lobe, ie removing the portion which is wrapping around the oesophagus could be what's needed. The right side might have increased in size if the left side is not functioning correctly, as you say it looks small. It would not do any harm for the ENT Dr. to have a word with an Endo.

[Miah924 in reply to JudithW]

Thanks! I am now definitely going to ask my ENT to talk to an Endo and maybe even ask if I can be seen by one.

[MaisieGray]

No help on the asymmetry of your thyroid, but I wanted to say that if disruption/surgery to your thyroid is an imminent possibility, it is important to consider putting pregnancy plans on hold until you are optimised post-treatment. Optimal thyroid hormone levels of the mother are critical for the proper development of the foetal and neonatal brain, and other aspects of the pregnancy and foetal growth. The net effect of pregnancy is an increased demand on the mother's thyroid - the foetus isn't able to synthesize its own thyroid hormones until c12 weeks of gestation - and can precipitate thyroid disease in women who are subclinical.

Regarding surgery, if it were me, I would want a second opinion from a Thyroid, rather than an ENT, surgeon.

[Miah924 in reply to MaisieGray]

I am putting off pregnancy until this is all resolved. I guess I didn’t know how important thyroid function is for pregnancy until you said something. I will be doing more research on that!

I also had no idea there was such a person as a thyroid surgeon. I just might have to drop a comment to my ENT to see if she can confer with a surgeon like that. Especially since I think my case is a bit weird. Thanks for your advice! Definitely worth the note.

[silverfox7]

Welcome to the forum! My concern would be if the right side continues to grown that surgery in the future could be an issue. Neither would I expect the left side to compensate and so you would need a surgeon to give you advice on that. Looking at the wanting to start a family then let's say you go ahead now then surgery becomes an issue, how would you feel going a head with that with a baby or toddler or may be more if surgery is further down the line. You are from a thyroid family so chances are at some point you will need medication so may be bringing that situation forward as may be necessary anyway if you go ahead now will not feel as much of a problem.

I think you need as much information as you can of what may happen in the future and even get a second opinion as well if still unsure. Look into the pregnancy in regard to the effect it can have on your body as it is now and would it be better to have any surgery first and what would the recovery and possible thyroid medication effect you.

You and your partner need to think of the various scenario's then start asking for probable answers. I don't think it will be easy to make a decision but an informed decision should make it easier.

[Miah924 in reply to silverfox7]

Thanks for your words! Good food for thought and great questions to be asking myself! I don’t want to have this issue or a worse issue when I have kids running around.

I am going to have to ask my ENT for a referral to an Endo. I think it makes sense to do so. I definitely want as much information as I can get.

[silverfox7 in reply to Miah924]

Hope things go well for you. Let us know how you get on.

[thyroidx100]

I'm in the UK. My mother had her thyroid removed. No one else in the family had thyroid problems. Fast forward 21 years ago when my son was born my neck started hurting three days later my neck grew big. I suddenly had midwifes nurses and doctors around me. In the middle of all that I went into menopause. My world turned upside down. A year later my right hand thyroid was removed. Four years after that my left hand thyroid grew from left to right. I could hardly breath. Emergency op was done to remove the left side thyroid. The doctor said they never seen such a huge left thyroid. Now something is growing in my throat. Went for a scan normal. But it is growing back to doctor who made an appointment with the hospital. After 7 months waiting I got an appointment on 12 December at 9am. My doctor told me when they remove the thyroid the doctor leave some tissues behind. Maybe that is growing. I was so shocked. I pray all goes well with you. Good luck 🍀

[Miah924 in reply to thyroidx100]

Wow that must have been scary going through all that! I hope they are able to take a look and see what’s going on now! Good luck to you as well!!

I hope you don’t mind but I am wondering how surgery was? How long did it take for your body to adjust to medication? I will be doing some searching on here to see others’ stories as well. I want to see about average time it takes people to adjust to medication. Thanks for your reply!

[thyroidx100]

First I don't know if I'm wrong but you both should try for a child soon. Reason being once my thyroid was removed my husband had to be mum and dad to my other children and look after a baby then go night shift. I could not go shopping due to forget where I wanted to go and how to get back home. I put on weight and most of the time just didn't want to get up. My days felt like I'm neither here or there. Fast forward now I decided to go off my thyroid tables to see if I can loose weight and not have that feeling of gone off. So happy to say I walk everyday lost weight. Even joined a dance and excise class. But I guess I have to go back to the tablets soon. From size eighteen then seventeen now fourteen jeans and size 12 tops. I want to drop another 2 size in jeans size12 is my target. That's why try now for a baby not after surgery. I really don't know if this advice is good or bad. I hope all goes well with you both. Love x

[silverfox7]

Also look into where your thyroid needs to be when you are pregnant. Better to tick those boxes before you join the mums to be club!

[Miah924 in reply to silverfox7]

Good point! Definitely more research to do!!! So new to this! I have to absorb as much as I can 😁 thanks!

[Hidden]

From a a US perspective: I saw an ENT at Johns Hopkins and a surgeon at Penn Medicine who is part of the oncology department but limits her surgery only to thyroid and parathyroid glands. I chose the latter, a female surgeon with great credentials. My problems are not the same as yours, but the American Thyroid Association has a very extensive website, so if you haven’t done so yet, look at that.

If I were you, I would get at least 2 opinions at top teaching hospitals in the largest city nearest to where you live about surgery after seeing a Board-certified endocrinologist first, preferably one who devotes at least 1/3 of her/his practice to thyroid issues.

No worries about having hemithyroidectomy (half). I did well for 32 years in that state before having the remainder of the gland removed 8 weeks ago. It is likely that Levothyroxine/Synthroid would be prescribed if surgery is needed. Dosage may need adjustment after six weeks and a new lab test.

I would probably defer pregnancy until you have an exact diagnosis and a treatment plan is in place.