large substernal Goitre in the aortic arch

[Annsandra13]

Hello all,

I would like to hear advise from anyone who has had surgery to remove a substernal large goitre.

I have now had 2 ultra sounds, I MRI scan and had been told it was located going under the breast bone, however after seeing the registrar I have since found out it large and on the left side and the size is 6 x6 x6 cms, she used the term a Giant Goitre, this is compressing the trachea and is quite closely applied to the vertebral column. Apparently these are what are causing my symptoms.

I have been having problems sleeping as sleeping on the left side causes wheezing and difficult to find a comfortable position , my breathing at night according to my husband is very disturbed,

Bending over cuts my breath off and I have at times swallow problems.

The doctors are saying that I have to decide on whether to have surgery, it is complex and carries risk, so I am coming to terms with possibility of having surgery as I read that any goitre of over 4 cms should be removed, but I am concerned about it being on the left and in the superior mediastinum.

I am yet to have the CT scan that will tell more about any further complications.

Hoping to have some advice.

Best wishes to all

Ann

[PurpleNails Administrator]

The location & growth of your goitre is your issue & why you require treatment but it’s very important that you have a full thyroid function.  

Most standard test do not test thyroid fully.   

You may have been told function is not affected but you still need a pre surgery benchmark. With TSH, FT4, FT3, Antibodies, vitamin D, B12, folate & ferritin.

 I have a hyper nodule of 5cm but it is not substernal. 

[Annsandra13 in reply to PurpleNails]

hi Purple Nails,

It’s so kind of you to respond so quickly, I will ask for all the blood tests you are suggesting, my recent test said that they had returned to normal, but the TSH SERUM was 0.25 and had returned to in range . Apart from the symptoms I told you about I seemed to be putting on weight constantly and feeling very cold, and tired does this affect you? I really appreciate your help AMD advice thank you

Ann x

[SlowDragon Administrator in reply to Annsandra13]

Very unlikely to get full thyroid test with both thyroid antibodies and Ft3 via NHS

all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Both companies offer “local to you” private blood draw for an additional fee

Or you can do DIY finger prick test

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

come back with new post once you get results

[Annsandra13 in reply to SlowDragon]

hi Slowdraggon,

Thank you for the information , I certainly will take the advice and do an early morning blood test, I had the feeling the GP’s were not thinking anything was particularly wrong and unless the tests were both abnormal nothing needed doing, the ultra sound test had showed multi modular lesions on both the right and left of the thyroid, the left being larger but they seemed more concerned about a lesson on my Larynx so that over took the thinking, it seems it is not a polyp they think. So it is only this week I have been told about the substernal Goitre size and position. With my symptoms being a little more pronounced. My concern is the compression on the trachea and esophagus and if this will further deteriorate. Looking at the link for Hypothyroidism I most certainly have many of the symptoms.

Again thank you again

Kind regards

Ann x

[PurpleNails Administrator in reply to Annsandra13]

So you have history of low TSH?

From your previous posts you have low FT4 & high in range FT3. 

Testing TSH is inadequate, the TSH can appear normal but thyroid levels may not be.    (The thyroid stimulating hormone is a pituitary hormone - it signal the thyroid to produce - it alters over time and can be affected by other factors - including not responding effectively) 

You may have autoimmune issues affecting thyroid of part of the goitre may be over functioning, although this often increases FT4 & FT3 gradually & TSH would remain low. 

Have you had antibodies tested? 

I’d also obtain copies of your ultrasound & MRI scan reports, (& future reports) that should also give an explanation about the health of thyroid.   

Has a nuclear or uptake scan ever been suggested?  

As function is not the focus of doctor’s concern, the goitre location is the over riding issue. this may have been overlooked. If your function is low it could be worsening the swelling, adequate treatment might reduce it.

[Annsandra13 in reply to PurpleNails]

Thank you for such a good insight into Thyroid function, I have just had the last report of the Thyroid function, it has been very misleading to me as my GPS have not had concerns about the results, I saw a private specialist 18 months ago who had said the goitre was under the breast bone and suggested a CT scan to my doctor, which was the right way to go but since then I have had the MRI and ultra sound, whoever I had seen had not told me the location until this week but all seem to be saying it’s up to me to make the decision. I will ask for the CT which will tell much more about the risks associated with surgery.

I have attached the MRI result

Kind regards

Ann x

MRI result

[PurpleNails Administrator in reply to Annsandra13]

“Huge multinodular goitre which extends to the aortic arch in the superior mediastinum displacing the trachea to the right” 

So this is clearly impacting important structures. 

“The appears almost spherical measuring 6 x 6 x 6 cm”   - noting shape & size. 

“This extension is quite tightly applied to the vertebral column which might account for the dysphagia” 

“No abnormal lymphadenopathy demonstrated” this means the lymphatic (infection fighting) system is not reactive - this is good. 

“No change in the left-sided supraglottic small nodular lesion”. This notes nodule near airway is unchanged. 

“The remainder of the upper airways show normal appearances” 

“Expected age-related disc dehydration in the vertebral column No significant disc protrusion or herniation”

 Conclusion: Large multinodular goitre. 

“If concern remains for a tracheal malacia, consider HRCT of the thorax in both inspiration and expiration to assess for a tracheal malacia.”

High resolution computed tomography suggested, for tracheal.  Malacia refers to softening (of the tracheal cartilage).   

inspiration and expiration must be to do with breathing & timing of images (not something I know much about) 

[Annsandra13 in reply to PurpleNails]

hi PurpleNails,

Thank you for kindly going through the results, I agree with your thoughts, I think too the inspiration and expiration on how the goitre may effect breathing, it seems it’s mainly during the night when perhaps I move, I know if I sleep on my left side I start to wheeze and can’t really stay as it’s pushing up to my neck, I have read some positive data on surgery

Thyroid Goiter: When is a CT Scan ordered?When physical examination and or ultrasound cannot completely determine how far the goiter actually goes, then a CT scan should be ordered. The CT scan will show areas that the thyroid goiter extends and prepare the expert thyroid surgeon their safe and effective approach to remove all of the goiter gland and spare all other structures.

Even though a thyroid goiter may extend extensively below the sternum (breast bone) and go well into the chest, these goiters can almost routinely be removed through a relatively straight forward low collar incision in the lower neck. If your surgeon is telling you that they need to "split your chest" or "open your sternum", make sure that you have identified a highly experience thyroid surgeon. Again, such approaches are almost never actually required.

So that is helpful, I now need a CT scan I think. And full blood tests as you recommended.

Thank you again, it really to receive your support and advice.

Love Ann x