Thyroid UK
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multinodular retrosternal goiter

I have a multinodular retrosternal goiter which is pressing on my windpipe, I have had an ultra sound and a catscan the doctor says it all needs taking out and I need to go onto thyroxine. My thyroid results are normal although I have a lot of symptoms which point to hypothyroidism even my doctor was surprised with normal results.

TSH 0.78

Ft4 10.8

My dilema is do I have my thyroid removed and go on to Thyroxine when it is supposed to be working properly? Or do I risk it growing further into my chest and the only way they can remove it is to break my collar bone to remove it?

40 Replies
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Sorry but your results are not normal and they are incomplete

Freet3 must also be done

I suspect this like TSH and T4 is low and this means you actually have

Central /pituarity Hypothyroid which is different to more usual Primary Hypothyroid and i doubt your GP or many endos have a clue

Not sure you should rush into surgury ...try levothyroxine first as that should shrink the thyroid on no account take anything with iodine in it inc multivitamins or iodised salt or kelp or spinach ....(iodine can swell the thyroid ) but bear in mind that many Central Hypo patients like my husband , daughter and grandaughters only do well on NDT not levo or t3

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Thank you for this information, I would love to try levothyroxine but I am at a loss as how to get it prescribed.

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Go back to your GP with print outs of info on CENTRAL HYPOTHYROID do not wait around

Your GP clearly knows zip about central hypothyroid

You need help of a true expert not a GP or a jobbing surgeon ...where in country are you ?

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UK

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Not which country ...where in the UK ? So we might know a really good endo who actually understands thyroid

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Sorry I should wear my glasses North West of UK.

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Well what you need is a really top surgeon and a really good endo

Lets hope someone in your area can suggest both PDQ

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RFU,

As there are no lab ref ranges it isn't possible to say with any certainty that Issybelly has central hypothyroidism. GP has said results are normal which indicates FT4 is within range. If it is a range like 7 - 17 or 9 - 19 then 10.8 doesn't indicate central hypothyroidism.

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Agreed Clutter ...these GPs are a pain not giving ref ranges

I always think of 10 as the bottom line for t4

If only all the labs used the same ref ranges it would help

But to scare a patient into an op like that without every possible avenue being thought of is not acceptable

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RFU,

A substernal goitre growing down into the chest can't be shrunk with Levothyroxine and needs surgery to remove it.

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Ok ...then the OP needs to be reffered to a really good surgeon along with darn good aftercare from a good endo which sure as heck is not what she has seen so far

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Without ranges it's difficult to tell your results , but the FT4 looks low

Can you find the ranges out?

For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Hashimoto's can cause goitre and swelling

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

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Thank you I will look into that. But won't these results be what the doctors have already tested for? If I get the results I just can't see how I can get the doctors to listen and get the treatment I really need I haven't done very well so far.....

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Issybelly,

Can you post the lab ref ranges for FT4 (figures in brackets after results).

TSH 0.78 excludes primary hypothyroidism. I'd need to see where in range FT4 10.8 is to say whether or not central hypothyroidism is a possibility.

Retrosternal goitres can grow deep into the chest cavity and the deeper it grows the more likely radical surgery including breaking your collar bone or ribs to access it will be required. If you are undecided ask for a second opinion.

Type "retrosternal goitre" and "Substernal goitre" into the Search Thyroid UK box to see previous posts.

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I only have those two reading I made a note of them when they were shown to me quickly by a very dismissive doctor. I have been treated like I'm a nuisance when I've been to the doctors and I put my foot down and was referred to hospital where I saw a hormone specialist who did no test and said it was my age or my Fibroids(something else I'm trying to sort out) causing the problem. I've also seen the several thyroid doctors different one every time I go. It's gone from it's your age and it would be vanity to remove it to its Sub sternal we will have to break your collar bone to get that out, I requested a cat scan just to check how big it was etc. To my final visit this week that’s big it needs to come out might as well take it all out.

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Issybelly,

You could ring the GP receptionist and see whether the range is on your records. In future insist on being given your results AND the lab ref ranges. Data Protection Act entitles patients to their results so don't take rubbish from doctors or health care professionals about this.

Members have had substernal goitres surgically removed without breaking collar bones and ribs. It's if it started growing around other organs that better 'access' is required.

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Thank you the Doctor this time said he didn't think he would have to go through my collar bone. I will go and ask if I can have a copy of my results. Because I'm dealing with two health issues I'm struggling to take in all the information. If a thyroid is swollen it says to me it's your body saying there is something wrong, but when you are being told everything is normal.....

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Issybelly,

Well there is something very wrong with a thyroid growing down into your body and that's why they're recommending surgery to remove it. It doesn't mean your thyroid levels are off though. Ask whether thyroid antibodies have been tested. I felt very unwell with elevated antibodies (Hashimoto's) and a large thyroid nodule although my thyroid levels were euthyroid (normal).

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Hi Clutter I've been to the doctors today and spoken to the receptionist and made an appointment to see the doctor. I asked for my thyroid results and this is what she gave me Serum free T4 level 11.5 and Serum TSH level 1.14. I asked about the T3 and she couldn't find a test result. Something else which I found disturbing and frustrating she only had the one set of results, I have been back and forth with this. Please can you give me some advice on how to approach this with the doctor so I get some answers I feel very kept in the dark.

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Issybelly,

TSH 1.14 is low normal but without the lab ref range I can't tell whether FT4 11.5 is good or poor. Ask your GP for the ranges when you see him/her and ask whether thyroid peroxidase antibodies were ever tested.

T3 probably hasn't been tested. It's not often done in primary practice now.

Receptionist may not be able to access historical records or you may need to pay for results older than 40 days. Have a word with your practice manager. You should be able to buy your entire medical record from your GP practice for £50.

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7.00 -17.00pmol/L

For T4 level is that the level?

0.40 - 4.50 mu/L for tsh.

Thank you for your advice.

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issybelly,

FT4 11.5 is just under halfway through range which is normal for someone not on Levothyroxine.

If you go ahead with the substernal thyroidectomy you will need a full replacement dose of Levothyroxine which will be given to you the morning after surgery.

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So could this be down to my tf3? And if it's will the thyroxine work? I just can't understand if you have a lump on your neck why they don't test everything?

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Issybelly,

A lump in your neck is a separate issue and is not affected by TSH, FT4, FT3 and thyroid antibody levels.

It's unlikely your FT3 is low when TSH and FT4 are normal. Levothyroxine works for the majority of patients once they're optimally dosed and and vitamin and mineral deficiencies are corrected.

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Thank you as you can tell I'm having a major wobble.

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Issybelly,

And why wouldn't you when you feel unwell but are being told it's 'not your thyroid' but at the same time have been told you need major surgery!

TSH and FT4 are euthyroid (normal). FT3 is unlikely to be abnormal. My guess is that thyroid peroxidase and/or thyroglobulin antibodies may be abnormal and causing your symptoms. Your GP can check thyroid peroxidase antibodies but probably not thyroglobulin antibodies.

If thyroid peroxidase is positive it will confirm autoimmune thyroiditis (Hashimoto's). If it is negative it will not conclusively rule out Hashimoto's and you might want to order a private thyroid test to check FT3 and thyroglobulin antibodies.

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Thank you again so much to take in

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Are you talking about the Surgeon or the Doctor. If you can find an experienced thyroid Surgeon that does plenty of operation each year.

If the thyroid can be removed they tilt your head right back and pull it out without touching your collar bone at all. Mine came out easily and my trachea moved back into place. The long you leave it the worse it can be for removal.

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You have a legal right to your results ...do not accept the crap you have been given ...fibroids and gyne issues occur as a result of hypothyroid

You only really dealing with one issue ....USELESS ENDOS

Any chance your near Kent

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Thank you for your support I could do with taking you along to sort them all out.

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Would love to ...endos make me so mad ....but i see little option but for you to have it removed ...def not RAI

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I had a retrosternal multinodular goitre. It really is dangerous as they can compress yr windpipe and you do need it taken out asap as rates of growth vary. My mng had been monitored for 3 years as i didn't want my thyroid taken out unnecessarily. Wish I'd known then that levo may have reduced nodules BUT once it becomes substernal then it has to come out. Try not to worry too much about being thyroidless there is lots of help and advice here.

It would help to get a full set of bloods ie tsh t4 and deff t3 prior to the op so you have an idea of levels that yr body is used too.

Good luck x

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Thank you. Could they have prescribed levo if your readings were normal?

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I believe they can as long as yr bloods dont go over range. I need to find some research for this as a friend is currently in this situation x

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Thank you x

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Hi issybelly. I have also recently found out I have a large retrosternal multi nodular goiter and am feeling bewildered and a bit overwhelmed. My blood results showed normal thyroid function and normal thyroid peroxidase antibodies levels. But I know myself I'm not feeling well, compression symptoms and underactive symptoms (??). Despite being told (and reading in med papers) that if, it descends into the chest cavity, the only option is surgical removal, my endocrinologist has suggested that radio active iodine treatment may be an option. I understand the need for sending me now for a CT scan and a barium swallow to see what's going on down there but he also wants a further ultrasound to see if they can get a Fine needle aspiration biopsy (FNA) of one of the (too many to count) nodules. The first radiologist i had said that an FNA would be pointless given it's got to come out anyway and it would be really difficult as there were too many nodules to count. Presumably, he will then recommend the radio iodine treatment instead of surgery if the test results show no signs of malignancy. I wonder if anyone has avoided surgery for substernal goiter and what the treatment was? I wish you lots of luck issybelly, will you be having a total or partial ? Don't know about you, but i just want it gone now and hate all this being in limbo.

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I guess I'm want it explaining more I feel very kept in the dark with it all I've pushed all the way to have the ultra sound and cat scan as my opinion is you don't have a lump for nowt, I've gone from we don't do operations for vanity purposes, to oh you have a retrosternal multi nodular goiter we may have to do a partial op to following a cat scan lets do a total thyroidectomy. Wishing you lots of luck too with your op please keep me posted how you go on. Take Care. xx

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Hi I had my thyroid removed in October 2015 before that I wasn't on any medication and my blood test results were fine.

I had a retrosternal goiter which was pushing my trachea out of place. I had an FNA and was told to leave it no treatment was offered in the UK.

I had trouble breathing and as soon as I moved to France the surgeon told me to have it removed which was done without delay. The lump when removed had 1/5th Papilary Cancer which never showed up on the scan or FNA.

If I were you I would have it removed immediately it can be a difficult operation when it's growing downwards. I am now well and feeling fine.

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thank you have you been ok with the thyroxine medication following the op?

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I was given Levo and was on it for 7/8 months but it left me feeling ill I then switched to NDT and now self medicate.

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