Hi, I'm new to the group and would really appreciate some advice.
I had an MRI scan which revealed an incidental finding - a thyroid mass. I've had an ultrasound and an FNA. The FNA showed no trace of malignancy but as there are malignant features on the ultrasound I am now scheduled to have the right side of my thyroid removed in a couple of weeks. I have a much smaller mass on the left side which I've been assured will be 'behaving' in the same way as the larger one on the right. The hope is that the larger mass is benign and that the smaller lump will just require monitoring over time.
I've been told that the remaining side of my thyroid will be able to produce enough thyroxine that I won't need to take medication post surgery. I've been doing some independent reading and am not convinced that this is necessarily the case. Does anybody have any experience or advice that they can share with me?
If anybody has been through anything similar, I'd love to hear about your experiences and outcomes too as I'm feeling rather nervous about the whole thing.
Thank you.
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Springy1
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The remaining thyroid lobe will usually take up the slack and produce the thyroid hormone required. It doesn't always, of course, and there is a possibility that replacement will be required.
I had a hemilobectomy five years ago to remove a large nodule which was compressing my trachea. FNA had been inconclusive but histology was malignant and I had completion thyroidectomy 3 months later. It was bliss not having a stonking great lump in throat and to be able to lie down to sleep without choking. I don't actually recall having thyroid blood tests post hemilobectomy until I had the completion thyroidectomy pre-op.
In both cases surgery was done as a day patient with overnight admission for observation. I had little pain on both occasions after surgery and was able to eat and drink normally without discomfort. It is recommended you have soups and soft foods available in case your throat is painful after ward. Healing was good and I have a small fine white scar in the hollow of my throat that is barely visible. I needed very little of the pain relief which was made available in hospital and to take home when I was discharged. I had low calcium after one of the surgeries but it corrected itself within a week.
I had a tiny nodule. There was no discussion on either testing or removing it. I do know someone who had thyroidectomy and is taking thyroid replacement meds. She is doing well and is in fact very thin. I would expect your Dr to close!y monitor your levels and adjust accordingly. I would hope the Dr is open to Armour, Naturthroid , cytomel t3 in case you need medication. I would definitely research alternative medicines and holistic approaches before having a drastic removal. Sadly, we have to become our own advocates and research trustworthy sources like NIH.GOV.
Levothyroxine is the 'preferred therapy' in the UK. Liothyronine (T3) is so expensive it is very difficult to get it prescribed on the NHS and NDT isn't licensed for use in the UK so is rarely prescribed. Most people using NDT have private prescriptions or buy it online and self medicated.
I'd like to meet anyone who really is closely monitored.
The impression you get from the phrase is that the tiniest change from your optimum will be detected and acted upon.
Most of us are on annual tests (TSH only) and with all the other issues (time of day, variable ranges, and so on) you could easily be significantly under- or over-dosed most of the year and it never get noticed.
I long for almost-free instant testing - like we already have for blood pressure and temperature, weight and height, and a few others. If we could instantly, reliably, get FT4 and FT3 measurements would might be able to establish where we feel best. Then make informed decisions to keep out levels right there. Might takes years, might never happen, but I so hope it does.
I am in USA, NDT is gaining ground along with t3 only meds. My Dr is an advocate for NDT. He refuses to prescribe synchroid or levothyroxine .He wants to test every 3 months.
I've not had my surgery yet but I have a suspicion that I may have hypothyroidism - I certainly have a lot of the symptoms although blood tests that I had in March were in the normal ranges...
I had hemithyroidectomy January 2015 after a battle with my GP to take it seriously. I couldn't speak for 4 month due to vocal chords being impaired- was apparently a cold per GP, had a lump over 2cm which then affected my sternohyoid muscle at front of my neck - it stood out and couldn't raise my head, I had infection in my salivary glands, all happening in my neck. Two FNAs and a core biopsy later eventually got a great ENT consultant and an emergency op.
I too found it to be a 'good' op to have. All went smoothly, lost two parathyroid glands with my right lobe but that's not caused any problems. Recovery was good no pain that paracetamol couldn't handle and suddenly I could breath - big deep breaths!
It was a few weeks when went for check up found the side left didn't really work and got put on Levo. Initially my body disliked that idea but I had to take really gradually and that worked. I take a little NDT too now to boost my T3 alongside my Levo and go on how I feel. It took a while - most of 2015 in fact but 2016 saw me do two tough mudders, a day ploughing with Suffolk Punches and a day with SAS romping around countryside discovering new limits.
Winter is here and adjustments needed on levels I think but so glad I had the op. Good luck with yours. Xx
My daughter had a hemithyroidectomy and was assured she would not become under active. Unfortunately she became hypo by the time she had her post op check up. Her FNA was inconclusive and the biopsy turned out to be non malignant.
She is now on levo and struggling with ongoing symptoms.
We had a second opinion before going ahead. It's very different to buck medical opinion when it's your child than when it's you. That's what I found anyway. The emotions and fear in doing the surgery vs not doing the surgery and the possibility of leaving the lump to become cancerous is not a decision I'd wish on anyone.
The surgeon said it was tricky to remove so if it had been left it may have caused more problems in the long run if it continued to grow.
I had a tunour on the right side of my thyroid which had started to get bigger over time. After 5 attempts to get a biopsy the surgeon decided to remove half of my thyroid. The tumour was benign but I was put on synthroid. From what my doc told me, I'd be on synthroid for the rest of my life. I have stopped the synthroid and have started with slow release T3 !i take a morning and afternoon dose. Hope this helped.
It's been suggested I have a hypothyrodectomy (?) as I have a benign nodule. I am hoping to have radio frequency ablation done on it in Italy and be funded by the NHS. Do look into it as it's not so drastic.
I had a large goitre on my thyroid that was beginning to interfere with my breathing so it was removed in my local hospital, quite a few years ago. For the days following the operation nurses would come up to me and ask if I was the one who had THE goitre removed. Oh fame in my own time!
Luckily it was not malignant and although I had most of the thyroid removed I was told my thyroxine levels were just ok. I've since had several more tests including T3, T4 and free T3 and free T4 which are all just within range. Hopefully you may be just as fortunate
Apart from the lump the left side this was the exact same as me. The fine needle came back as fine but the ultrasound was enough for them to prompt surgery. They did give me the option of monitoring it or having half the thyroid removed. opted for removal. They also told me I didn't need medication but a month later and a blood test showed I did need some and I started on 50mcg of levothyroxine. Also tests came back after having the tumour removed it was cancerous. so in February this year I had the other half removed. Now obviously have to have thyroxine and I'm six months months in remission. :)hope things go well for you. xx
Gosh, there are quite a few similarities except I've not been given the choice of monitoring mine. I'm so glad to hear that you're in remission. Do you mind me asking if you needed any other treatment in addition to the operations?
Thyroidectomy will not solve the problem, because the root of the problem is not in the thyroid. Usually it's in adrenals, digestive system or somewhere else. I hate the day when I let the doctor to remove half of my thyroid. I spend all my money to restore my health after surgery and only after 10 years I found the way how to live without thyroxine. My advice to find good homeopath.
If the root problem is a nodule, benign or malignant, thyroidectomy will solve it. Post thyroidectomy I found Hashimoto's burned out and it was Hashimoto's symptoms, not the malignant tumour, which had been making me ill. I didn't have adrenal issues and digestive issues resolved once I was optimally medicated.
Hi when living in the UK 2 years ago I found a lump on the right hand side of my neck that was compressing my trachea. The left side had a much smaller nodule. After an MRI and a FNA I was told that it was probably none cancerous.
None of the surgeons or doctors in the UK seemed unduly worried at all and there was no sense of urgency.
I then moved to France my very experienced surgeon advised me to have the whole gland removed this was done within a couple of months.
I had this done in Oct 2015. The lump was found to be 1/5th cancerous with Papillary Cancer.
I am glad that I took this course of action but everyone is different. I now take NDT and I am almost back to normal. I am 70 years old and was never on any medication until I found the lump. Hope you can make the right choice for you. Good luck.
Hi there, I'm 12 days post hemithyroidectomy. Following a biopsy result of THY3F result I've had the left side removed with a tumor & cyst attached. I have shown no signs of Thyroid issues until the lump came up on my neck.My bloods are normal according to GP but I'm hoping to get actual scores at my appointment with hospital tomorrow. The surgery was quite straight forward just an overnight stay no drain needed. I'm healing well as you can see from the picture on my post today. The pain was quite severe the day of the surgery and I had morphine. But by the time I went home it had settled. I managed with just Ibuprofen & paracetamol. I ate only porridge & soup fir first week, struggled with anything too firm. I'm signed off work until the weekend but I went into work for half a day today and the only thing stopping me going back full time is the fatigue. I am soooo tired, small tasks are exhausting. I'm hoping this doesn't mean my remaining Thyroid isn't working properly. I go back to get my results tomorrow morning, hoping for a benign result!
Hi Adele-84. Thank you so much for sharing that with me - it's really good to hear from somebody who has so recently had surgery and I'm really reassured reading about the pain levels.
I really hope that you have good news today - my fingers are crossed for you! I hope the fatigue soon passes too. Good luck back at work.
Got the all clear ! pre cancerous and they are happy it's all out ! Here's hoping my right side picks up the slack and my ordeal is over ! Best of luck with your journey. Feel free to message me if I can answer any questions for you xx
You're very welcome, I was nervous before hand and it's helpful to speak to someone who's been through it. Anything you want to ask just drop me a line 😊
I had half of my thyroid removed in 2007 due to multiple nodules and a goitre. I lived for 7 years without any medication or hormone replacement tablets, until this year. Following excruciating pain in my remaining thyroid, multiple nodules, tracheal deviation and inconclusive biopsy, my remaining thyroid was removed 4 weeks ago. So, I am now thyroidless. I have been writing posts about my experience post surgery with pictures. If you go to my profile, you can read them if you wish to. I shall receive my pathology results next Monday, so fingers crossed. I feel so much better than before and don't regret doing the surgery. I am back to work and trying to find the right amount of medication for me.
I had a hemithyroidectomy in March 2014. Afterwards, I remained hypothyroid until January 2016 when my GP finally found a suitable dose of thyroxine which made me feel human again. Apparently, if you are 'older', they take it slowly to avoid damaging your heart but they were 2 difficult years. My scar was a lumpy mess but Plastics sorted that out with some injections. Sadly, even though I had a long conversation with the surgeon about singing being an important part of my life, my vocal cords have been damaged and I now have a weakened voice with a much smaller range than before. Although I had been told that one of the two FNAs I had was suspect, it was good to be told after the op that the lump was benign. Anyway, I feel well now and just keep taking the tablets!
Hope all goes well for you. It can be daunting but this forum will give you plenty of helpful advice as you move through the process. Somebody has always been through what you are experiencing and can usually fill in the gaps in your knowledge.
I'm so sorry to hear about your singing - that must be tough. I have been told that there is a slight risk of voice change, and reduced power in my voice. It sounds as though you have had a tough journey but I'm so glad that your lump was benign - that's the result I'm hoping for. Great too that you feel well now.
This forum is massively helpful - I've been doing no end of reading on various website, and various research papers, but there's nothing quite like hearing from those who have already trodden the same path.
Thanks again.
Hi If you decide to go ahead Its very important to find an experienced surgeon who does plenty of Thyroid operations per year. I never had pain afterwards and the scar healed up after 6 months and now it's invisable Before the op I ordered in plenty of baby foods to eat when I got home. In France they have you in for 2 full days. Hope this helps.
If you can avoid the surgery, don't have it! I had a partial done 2 months ago and my depression and anxiety are off the charts! I cannot sleep and my endocrinologist claims my levels are normal? I don't know what to do but I highly recommend you keep your thyroid intact.
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