Rapidly growing singular 6.7cm nodule getting nowhere fast!!!!
Posted , 4 users are following.
Desperate for some advice!!!!
I saw (not my usual GP) about 4 years ago as I had a swelling on the side of my neck & was advised that it was probably a swollen gland & that it would disappear. It has not but has gradually got bigger over time. I have been constantly tired, ache all over, always cold, constipated & had counselling for stress & anxiety.
I started having problems swallowing & feels like someone is pressing on my throat so I went back & saw my normal GP. This was September 2014. He immediately suspected that it was my thyroid & referred my to see a consultant, have a blood test & ultrasound. Blood test confirmed that I had an issue with my thyroid but my GP did not want to prescribe until I had seen a consultant. I had an ultra sound & FNA in October but had to wait until Jan 2015 for results. Was told that I had a 4.7cm singular nodule that was indeterminate and a multi nodular goitre. I was told I must have another FNA which was done in February, I had to wait until April for the results. At appointment consultant was on holiday & computer problems so could not give me full details apart from the results were indeterminate again. Registrar that I saw wanted me to have 3rd FNA but I refused & insisted that I wanted it removing as I felt it was getting worse. Agreed to refer me to see a surgeon asap. After almost a month had not heard anything & was told my notes had not been written up as had computer issues & staff shortages. Finally got my letter & it stated that my nodule had increased to just under 7cm.
Finally saw Endocrinologist 20th May who confirmed that I would need surgery & had short consult with surgeon on the same day who is now arranging for me to have an endoscopy. There does not appear to be any urgency in my treatment. The only comment that I had was that if the nodule is not benign the follow up treatment is extremely good & chances are that it would be benign but could not be 100% curtain.
I'm a 51year old mum of 2 trying to keep things together & just need some advice from people who have been through similar or who can help.
Sorry for going on so long
0 likes, 32 replies
Redwoodgirl hilary45853
Posted
I have to say it is an awfully long time for you to have been waiting. Quite disgusting they took so long!
Ok, now I have only read most of the posts regarding to the answers you have received here. Some have been for other people's postings too, so I will only address your issues.
You can survive quite happily on one lobe of thyroid after surgery. You may well go slightly hypo for a short time untill the other side kicks in and realises its job.The parathyroids, whilst containing the word thyroid, have nothing to do with thyroid funcition, their sole role is to regulate calcium in your body. They sit on each corner on top of the thyroid, hence the name, para-thyroid. Stupid, I know.
They will not normally just remove a nodule, and yours is quite large so will require removal of the lobe it is in. If it is benign, then that is that. If it is a papillary (common) cancer, or follicular, often the removal is all that is needed.
Thyroglobulin is tested only in suspicion of cancer. The thryoid tissue naturally makes thyroglobulin and the level needs to be fairly high to show any cancer. Have you been tested for that?
Your thyroid levels I see on the post here show you are actually hypothyroid at present. The FT4 is very low and the TSH is indicative of that also. Having a multinodular goitre is actually more common than people realise, but in the setting of low thyroid function testing, can indicate Hashimoto's. Your TPO antibodies also reflect that.
Having Hashimoto's is a very tiring and draining experience. I have it and understand it very well. It is an autoimmune disease which attacks the thyroid, often destryoing it in the end which can take many years.
Often having the thyroid lobe removed can also result in even lower thyroid function and to put it bluntly, you will feel even more crap. You will go on thyroid medication (T4 replacement) It takes up to 6 weeks to 'kick in' so no point in being retested sooner, even if you feel lousy. Long explanation regarding that, for another time.
SO ultimately you sound like you are Hashimotos with Multinodular goitre, and a rather large nodule. I had these very same things and can understand your frustrations.
Not all nodules are cancer and unfortunately the only way to find out if it is indeterminate is to remove.
I am a thyroid advocate.
Cheers
hilary45853 Redwoodgirl
Posted
Thank you so much for responding. I have had very little information from the hospital & no explanation as to what is my exact problem apart from what is written on the letters that I have been sent. I'm not sure if it is assumed that I must already know or not knowing what questions to ask. As both my biopsies have come indeterminate this may be the reason!!!
I have had 2 blood tests since last September, the first one at my doctors & the second at the hospital. I don't know if you are ok to eat before or not. My mum has just told me that she always has hers early in the morning & is told not to eat but she is on other medication as well that might have an effect.
I have not been told what the blood tests are testing for or if there is anything else I should be asking for.
Can't thank you enough for your reply as I have learnt more in the last couple of days than in the 38 weeks I have been waiting for treatment.
Thanks again & best of wishes to you
Hilary:-)
hilary45853 Redwoodgirl
Posted
just a quick update. I had a letter on Monday advising that my endoscopy is booked for 18th June so hopefully I'm a step closer to getting some treatment.
Thanks again for your info
Hilary x
jean34329 hilary45853
Posted
I wonder if anyone knows of a surgeon who will remove the multinodular goitre irrespective of the sizes of the nodules. Kind regards Jean x
jean34329 Redwoodgirl
Posted
I was sorry to read that you had had an adenoma. Do you know of any endo surgeons in England who are prepared to remove nodules irrespective of their size? Like Hilary and yourself I have a multinodular goitre and I am very worried about the blase attitude of some doctors I have come across who say that the finding of these nodules is common but then they proceed to do nothing about it. By that I mean nothing is done to either remove, biopsy the nodule(s). This results in leaving the sufferer in an aanxious state of mind and depression adding to the ount of existing anxiety and depression caused by the imbalance of hormones and thyroid disease.
Kind regards
Jean x.
Redwoodgirl hilary45853
Posted
Cheers
Redwoodgirl jean34329
Posted
Multinodular goitre is actually very common and provided the nodules behave themselves you can live quite happily with them. Only if any nodules become enlarged or a person has noticeable effects from the goitre will any doctor treat by surgery.
In this I mean, if the goitre becomes so large that swallowing or speaking or breathing becomes difficult. Nodules which start to produce their own little factory of hormones (usually hyperthyroid meaning too much thyroid hormone) will need treating with surgery. So don't be too hasty to be angry at the doctors. It is impossible to remove individual nodules which are not doing anything without causing serious issues to the thyroid itself. Even feeling the thyroid alot to see if the lumps have got bigger can stimulate it to make more hormones. Something you really do not want, belive me!
If an ultrasound shows a nodule to be less than 1cm, then it is generally seen as being benign, and not needing treatment. Only if it starts to grow exponentially, (meaning very fast), will any biopsy be done.
Many people live with lumpy bumpy thyroids and have no untoward problems. The thyroid around the lumps sometimes itself can behave oddly, too.
I am not able to tell you who to see in England, as I live in Australia. As I mentioned though, you will be hard pressed to find any surgeon or endo who will remove nodules which are not actively producing any sign of disease or a cancer. I know that is not perhaps, what you thought would be the case. Whilst Multinodular Goitre sounds awful, lumpy bumpy thyroid is actually the true meaning of it, and it is a liveable condition. I totally understand your concern. When I first started my journey, I really was freaked out by it all, but have learned it is not as bad as it first seems.
Also to answer a previous question you had about Phenytoin, it can affect the thyroid levels. It can affect the T3 levels in your system. Make sure you do not take any medications within 4 hours of taking any thyroid medication. Your Subclinical Hyperthyroidism is possibly to do with a nodule producing too much hormone, or it could well be the thyroid itself having the start of Grave's Disease. You would need to have high levels of TPO to prove that.
Having said all that, many people have lumpy bumpy thyroids with Subclinical Hyperthyroidism, and it is something that only time can either go one way or the other. Not something you want to hear, I am sure! Thyroid is a weird law unto itself and not one case is the exact same as the other. It really is 'one of those things' in which no one can predict which way it will go.
I know that sounds as clear as mud, but in your particular case I would not worry about the nodules at this point in time. It would only be if the fact your thyroid started 'strangling' you (believe me, you would know this feeling if you had it!) or your hyper symptoms, like agitation (not anxiety), heart rate racing constantly, loss of weight, slightly bulging eyes, inability to sleep due to feeling like you need to get out of bed constantly, then I would certainly get more levels checked and investigate further.
Please also remember, not everything we feel is thyroid related, but alot of thyroid problems make us feel crap.
I know it is not fun having a thyroid problem. I have had mine for more than 20 years. I am going through some dramas of my own at the moment with mine (well, I don't HAVE a thyroid anymore but trying to get my levels right.) so can totally empathise with you on your own issues.
Cheers for now.