Help!!! Hi. I seem to manufacture thyroid growths. Have had 2 left side goitres removed, last one Oct. 11. 10cm mass seen Jan 13 in chest. Today after biopsy diagnosed as thyroid tissue.
As in upper chest operation would need to split sternum to remove it and danger of damage caused to laryngeal nerve and phrenic nerve, so could lose voice and also problem with breathing/diaphram.
This seems to be rare, so am asking if anyone out there has had a similar problem, please please contact me, as in dilemma to operate or not. Thorasic and ENT consultants involved, as major op if go ahead.
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oldfossil
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Didnt know the thyroid could go downwards I thought it just hung around the neck. i knew the voice and breathing can become affected with gotire but thought that was down to the mass pushing on it.
Is it only an operation, cant they shrink the mass? Do they have any clues as to why your thyroid grows like that?
Unfortunately yes. My original goitre could be seen bulging out of my neck, but regrowth went downwards and was a few centimetres from my heart. Not sure whether this one is an extra bit that was dislodged, from the last, or has attached itself somewhere else and grown to 4 inches. Would really like to hear about anyone who has had this happen or knows of someone, maybe one of the professionals accessing this blog.
I had regrowth of the thyroid hence the second operation. it regrew inwards and I ended up with laryngeal damage after the second op.
Is the tissue functioning as thyroid tissue i.e. taking up iodine? If so, why can they not do the RAI instead of another operation? If it is going to keep popping up all over the place and cause you major problems, and an operation is risky, is this not an option?
I do hope that it can be resolved with the best outcome.
I had a retrosternal goitre which was growing into my chest cavity. The goitre was on the right hand side of my neck and was visible. It was after a CT scan that they found that the left hand side of my thyroid had grown down very low into my chest area and was very close to obstructing an artery,(hence having pemberton sign) and obstructing the airways, the right hand side was also growing downwards. I had no choice but to have a TT.
My surgeon had performed retrosternal surgery many times before but told me that mine was the lowest that she had seen. I was told in advance of surgery that my scar may be wider than most or she may have to make a further incision down into the chest to remove the mass. I asked if she could try and remove the thyroid without having to do the extra incision but I gave her my permission to do what she felt necessary on operating table.
When I came too after the surgery I was delighted to find that she did not have to make the extra incision but my scar was wider than normal but has healed beautifully!
Thanks Chris. Really interesting and sorry to hear about TT. I believe mine is not attached but a mass lurking between my lungs, so I haven't been given the option of neckline incision at the mo, as the nerves are too close for comfort and the surgeon wants to see what he's doing, as can't lift it out from the neck. Thanks for the info.
Hello, how did you get on ? What sort of operation did you have. I have to take my thyroid out soon, got to do scan first to see where it is in my chest, the strange thing is ,my neck shows no signs of swelling. It's normal!!!!!!! 😥 I do have problems breathing, gets worse at night. Hope you are well bye
I had a goitre for years and got used to having a lump on my neck then after many years I realised it was getting bigger. As a singer so lost the top end of my voice so went to see ENT guy had an MIR It had been growing in my chest and had bent my windpipe and was obviously pressing on nerves. It turned out to be cancerous and could have been for years. Fortunately on coming out of surgery he said it gifted itself which I then assumed it hadn't attached itself to anything. I was lucky!
Sorry oldfossil
I'm not going to be of much help, just wanted to reply, if only to say I have heard of folks having Thyroid tissue elsewhere or growing down the neck into chest cavity (and seen videos to check, palpate down to the Thymus gland). Again not much real help, I wonder why your body is determined to create more Thyroid tissue?
After my PT op I was warned of damage to laryngeal nerve too, my voice was weak but has returned to almost normal. On my other site (Thoracic Outlet Syndrome) which involves nerve/vascular entrapment in brachial plexus, the phrenic nerve does affect diaphragm. Make sure you get as much info as you can from the surgeons, and ask how many times they have done this procedure too, would they do it on a member of their family? get the full facts/risks before you consent to anything - if you have time to ask that is, and not an emergency. Best wishes Jane
so very sorry. I had no idea that this could happen. I sincerley hope that what ever you decide to do works well and makes you well again. my best wishes
Hi, when I had my thyroid op there was an older lady in who had already had hers removed and it was huge, it went right down into her chest. She was fine after the op. X
So sorry to hear of your problem. I would ask the specialists involved what would be likely to happen if you leave it well alone, before making any decision. My daughter had/has Graves Thyrotoxicosis and had a near total thyroidectomy which we were assured would be the end of her problems - it hasn't been and the eminent endo 'experts' still haven't got her levels right two years on. Also, she developed various growths from bone which have finally been diagnosed as a very rare extension of her Graves problem called Thyroid acropachy. I would want to know, given our totally unsatisfactory treatment/follow-up/diagnosis etc what the exact medical term is for your condition, so you know precisely what you're dealing with. 'Thyroid mass' sounds too vague to me to base surgery on. It took a biopsy before my daughter's diagnosis was arrived at, and beforehand, we had several diagnoses both NHS and top endos saying different things. I do hope it is sorted for you soon - we have found half the battle is knowing precisely what we're dealing with. Good luck with this. x
Hi. So sorry to hear about your daughter and how frustrating not to know for ages what's wrong. Will try and find out what it is, but communication is not great.
Hi OF. Hang in there, there's times we just have to tough it out and keep on putting our best foot forward. Good luck with it.
My experience was a little different, but but not entirely dissimilar.
My thyroid had grown way down under my right collar bone, and had a Hurthle cell cancer/tumour in it too - but there was only a slight swelling above.
I had multiple and obvious symptoms of hypothyroidism, but these were ignored for years.
It seems that the underlying issue that caused the enlargement of the thyroid was auto immune thyroid disease (it leads to uncontrolled cell division) - but this didn't emerge until the pathologist reported on the removed thyroid.
Whatever the case several docs over a period of about eight years missed mine entirely. This despite my repeatedly insisting that I was seriously hypothyroid and providing various briefing documents on the symptoms and so on. The stock blood tests were deemed normal as often happens - my problem was with downstream conversion issues. I was even tested for antibodies which produced some highly questionable results - but they were deemed negative.
I eventually went down with clotting in my left renal artery (probably - based on my own reading since) caused by the hypothyroidism, and despite months in hospital and a diagnosis of kidney and likely adrenal tumours (which turned out to be false) they missed the thyroid - the problem wasn't found for several months.
The more positive news is that while the surgery was fairly aggressive (it left some residual issues around what may be lymph drainage and the like - but it didn't entail opening my chest) I seem to have made a good recovery.
My sense is that quite a lot may hang on what the cause of the thyroid overgrowth is.
Judging by my own situation autoimmune disease can lead to it, but so can a malignancy. If it's even the former there may be good reason to remove it anyway - there seems to be a fairly high likelihood (based on feedback on other forums - no idea what the medical orthodoxy may say) that it can disturb the immune system to the point where it creates an increased risk of further auto immune conditions and may interfere with our ability to convert and use replacement hormone. i.e. quite a few seem to report improvements in health when a thyroid that is a focus for auto immune activity is removed.
The other side of the coin is perhaps what the surgery may entail, and what the risks of side effects are. My inclination would be to take the time to investigate carefully. Especially to carefully screen possible surgeons, and to try to understand exactly what the level of risk and possible outcomes are.
It has no implication for your situation, but I've twice at this stage had surgery that entailed a fairly high risk of complications (once on my back, and then the thyroid) and both seem to have shaken out well.
My personal take was that it was worth accepting some risk in the hope of recovering a fairly decent level of health, but that was a personal call and based on a particular perception of a particular situation...
Is this overgrowth of the thyroid always associated with the autoimmune factor?
Reason I ask is, Im underactive with antibodie indicating autoimmune of Hashis. My neck upwards is swollen but I have all my lymph glands up and enlarged.
I hope I wasn't too blunt OF, it's tough stuff to cope with. It can come out pretty right though - there were times I was resigned to being on a one way trip and it turned out not to be the case.
Pardon more stuff, I hope it helps some of you.
The single biggest issue i found was that neither doctors nor endos nor physicians (including one supposedly holistic doctor specialising in metabolic illness) seemed to have any sense of the total picture - of the enormous range of issues we can run into after long term hypothyroidism and auto immune disease.
With the result that diagnosis and treatment choices are pot luck. As before I was never diagnosed with hypothyroidism or auto immune thyroid disease - it all came out (pun!) after the thyroidectomy.
The other issue was that communication was minimal, with the result that I had to do enormous amounts of reading to even get a handle on what was going on, and the possible outcomes.
The cancer and the highly enlarged thyroid didn't for example surface until the pathologist reviewed my thyroid after removal - up to that point so far as I was told I had a 'lump' in my thyroid which a biopsy decided was risky. No definitive diagnosis though.
One of the complications of these sorts of situation is that it seems that the transition from out of control and defective cell division caused by auto immune attack may only very gradually transition over to become a malignancy. There's a paper out there for example that suggests that there's a lot of disagreement among pathologists on which is which, and hence presumably many diagnoses of malignancy on a just in case basis. This was always a great source of optimisim for me - it looked like there was maybe a 35 or 40% chance that my pet lump was in fact not truly malignant.
Auto immune disease in my case surfaced as stuff like a chronic sinus infection, a tendency to break out in huge lumps (urticaria) in response to materials/foods I was sensitive to, hay fever like symptoms, positive ANA (anti nuclear antibody) tests, Parsonage Turner syndrome (paralysis of an arm for several months - probably caused by auto immune attack on a nerve), fungal infections, urinary tract and other infections, and quite likely my inability to use the thyroid hormone I was producing properly. (it seems that thyroid antibodies can interfere with the enzyme reactions involved in this process) Lots of gut trouble too - never diagnosed, but what sounds very like irritable bowel or that sort of thing.
I also had the usual hypothyroid symptoms - cognitive issues/brain fog, low mood, puffy/yellowish face, joint and other aches and pains, spotty back, fatty liver, blinding headaches, very high blood pressure, cold hands and feet, low basal body temperature, visual disturbances etc etc.
My lymph nodes tended to be OK Raven unless I had an active infection, but that was pretty often. The pattern was up and down. I don't know if auto immune is the only cause of thyroid over growth - but suspect that it isn't as goitre is typically caused by vitamin and mineral deficiencies.
It's hard to know what goes on. The other side of my thyroid was seemingly pretty normal, as was the part above my collar bone. Quite why it grew down one side is hard to know.
The cancer was quite large, but it wasn't necessarily the cause of the thyroid over growth. Luckily too the tumour was seemingly encapsulated - as in it hadn't obviously penetrated blood vessels and the like to spread.
As a final thought. I did a lot of self healing work (meditation), and have a sense that this probably played a big part in my fairly decent recovery.
Oh he k l hope you get forged as painless as possible I sometimes I wondered if I had one more thyroid somewhere else due to the fact mines been removed. And apparently I've only needed 50mcgs levo last 3 year,,,,, good luck x
Thanks to everyone who's made a comment either with suggestions or support, it's good to know I'm not alone.
Hope to speak with an endo in Addenbrookes Cambridge, so if anyone out there has a good/bad word about an endo there, please add a comment here asap.
Also if anyone also has had a mass of thyroid tissue, not attached, lurking in their chest and has had to have a split sternum to remove it please also get in touch, with how it all went.
Hi everyone. Thanks for your support. Update is that have trawled the internet and found papers about this problem. All in favour of surgery, but luckily have a family member with medical contacts and hope that tomorrow GP will make a quick referral for a second opinion to an Endo and have lined up numerous questions. x
This post seems to be three years old but I hope there is someone out there who could answer the original question about whether to get surgery to open up the chest and removed enlarged thyroid. I just learned that I may have to have the surgery but I read somewhere that it is very rare that they do that now but will go through the chest. Wondering if anyone can shed done light on this.
I thought I'd just add my experience of having a thyroidectomy in case it might help anyone . . . I had a very large goitre with several nodules removed in 2006. The goitre mass was growing behind my breast bone and had reached my aorta. My breathing and swallowing were greatly impaired and I had actually been very ill for 20 years before the operation was performed - I had been diagnosed with chronic fatigue back in 1988 but I now think i was actually affected by autoimmune thyroiditis, with a slowly growing goitre. That's perhaps for another post but the operation was performed because my body just couldn't support such a large growth and it was pressing on my windpipe and probably affecting everything in my neck. My surgeon, a highly skilled doc in Aintree 'head and neck'hospital said he thought he would have to go through my breast bone but was in fact able to remove it all through an incission in my neck. I have a very neat scar that's hardly noticeable. Because my breathing was badly affected it was a huge relief to have the goitre removed - it was also very unsightly so I was pleased to have a slim neck again! The surgeon did tell me after the op that it was the biggest goitre he had ever removed during 25 years of operations. I wish anyone facing a similar op all the very best - it's a big undertaking and i hope you have lots of support to deal with it all but if you've been advised to have surgery and you're troubled with 'compression' symptoms from the goitre, it is such a relief to be rid of all that! : )
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Please let us all know how you get on. In my thoughts and prayers. Wendy x
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