Some of you might remember that I had mentioned about my 16 year old daughter has hashis and that she had a nodule. Her her fna biopsy result was thy3f and therefore we were given an option to go for surgery or just wait. We decided to go for a hemithyroidectomy. We had a follow up appointment this morning and we were told that the removed nodule had cancer.
So now they will decide whether they want to remove the other half (right thyroid gland) or not. The consultant also said that they might give her a radioactive iodine treatment if they remove the other half of the thyroid.
We were not expecting this news as I had read that most nodules are benign. As a result got stumped and didn't ask the doctor any further details about the type of cancer found. I have requested a copy of her biopsy report.
So my question is; has anyone here had a similar scenario and what should we take into consideration going forward.
Feel totally out of sorts. Could barely finish work and just got home. Wanted to ask all of you and get some guidance.
Please let me know. I have read that removing the other half of the thyroid will affect her calcium levels. Any side effects from the radioactive iodine treatment.
We were offered a full thyroidectomy but we didn't opt for it. The poor girl will have to go through it again. We don't know yet.
Never thought I would be dealing with this in my life. But alas....
Love & Regards
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Keenbean
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So sorry for your loss. All I can say is I have a friend who a total thyroidectomy ten years ago and she has had no problems whatsoever. On the other hand, there was no cancer in her thyroid, so it was removed "as a precaution" but it proved to be unnecessary.
You do need to be aware that not everyone is capable of converting levothyroxine to T3 to power the cells, and then they need liothyronine instead.
Unfortunately, there are too many who refuse to listen. If you can get the rT3 tested at the same time as FT3, this will indicate if there is a conversion problem.
Then if there is, and all else fails, you can track down a source of T3 independently of the consultant. Sadly, some people are forced to do this.
Hiya. Don’t panic. This same thing happened to me.
I had other half out and RAI but there was a question over whether there was vascular involvement.
I had two weeks to decide as they did an multidisciplinary meeting.
Calcium may or may not be a problem depending on parathyroid If they conserve them it’s fine. If they’re damaged it’s more problematic but need supplements.
Give your daughter a hug. Mine turned 17 today. I had my hemi 3yrs ago tomorrow.
Thoughts going forward : get the histo report. I emailed sec and she sent it to me. They don’t like it though.
My decision was fairly easy with it having invaded a blood vessel. I made my decision and the MDT meeting made recommendations, they were the same.
Be aware that it’s generally slow and I feel fairly uncomfortable with people fawning over poor me you had cancer. Mine was easily treated 2 ops, take a tab of RaI and job done. It’s the continual fighting with levels and proper treatment post all that o find frustrating.
Your daughters young, she’ll do well with another op. She may well fly on levo alone but I would get them to acknowledge the risk is of her not getting on with levo and what their solution is. Find out CCG position on t3. Find out which endo prescribes t3. We have two Endos at our trust one doesn’t seem to give t3. That’s mine!!! Had I known I’d have requested other one.
See if the list if thyroid friendly Endos are near yours or in the trust and try get them taking over care if endo won’t enter conversation of what if’s.
The butterfly trust has good dvd. I’ve got a copy I can post. The Macmillan nurse you have been given number for at your trust may have a copy.
Write your questions down for your next appt only leave when they’re answered.
Noted. How long was the recovery after the second op. Coincidentally my daughter will be a month post her op tomorrow. Did you have any side effects from the RAI. How many days were you kept in isolation? Or is there even a need?
What happens if the cancer has spread. Does the RAI treat it or something else is given. Overall quality of life afterwards? Mine has her GCSEs end of May. We just spoke to her school too.
I'll look up for the endos for T3. She does feel very tired in the evenings. Where do I get the list of thyroid friendly endos. We were not given any extra info.
Wishing a Very Happy Birthday to your dear daughter.
Recovery same as first really but didn’t do silly things like running straight after! They put me on t3 before RAI, so 14 March hemi, 29 April completion and rai end June. Was there not a nurse in the consultation with you when you were told cancer and a leaflet given of all contact numbers?
What have they told you are next steps. I would now be getting b12, vit D, folate and ferritin checked by go. My daughter very low ferritin and with Hashimoto your daughter may be too and that’s a huge tiredness cause. You are ahead of the game being on this forum, well done.
My thoughts were it was a tumour it’s gone and so no real urgency to decide. I’m fairly medical so I had to make sure I reassured my hubby and kids.
The ent chap that did surgeries was great, the Endos after were fab until you hit problems.
GCSE’s , hmmm I would wait for histo report if I was in her shoes I would get them out the way unless huge invasion. Find out which cancer as mine was slow growing, was missed 2yrs previously but hadn’t grown much in 2yrs. Read up, I’m feeling your pain. It was much easier me being the patient.
When is the next appointment they should have made already for you?
RAI I was in overnight, didn’t suck sour sweets so saliva gland swelled a bit but was fine after few days. Low iodine diet was rubbish as was stopping all meds for two weeks. You get very hypo.
I’ve found the dvd today but can’t find the little book, look on Macmillan cancer site as think it was one of theirs ( head and neck cancer)
Pm me address and I’ll post it today, should have it by tomorrow.
Thank you soooo much for your kindness. I'll pm you my address. We were told yesterday that they would have a meeting and get back to us. In the meantime we have been asked to go for another TSH blood test and see them during the easter break. The consultant said there's no metastatis. He removed one nodule. So he said whatever will happen now will be purely for her long term safety.
I'll call the secretary today to chase the report. We have requested that is there is a second surgery it should be done after her exams.
Her haemoglobin is low. She's on ferrous fumarate.
Yes, I remember you well. So sorry to hear this. What a terrible shock for you all. How is your daughter coping? You must all still be in shock.
I've no experience to share but thought I'd read on here that they relocate the Parathyroids to some other part of the body. Not related to the Thyroid - just where they are located. So if they are preserved then calcium should be OK shouldn't it.
Hope the hospital send you her copy records swiftly.
I had a full Thyroidectomy and my parathyroids were left intact and were fine. For a few days after the op, they were very annoyed and showed their displeasure for all the upset but I took chewable calcium very quickly each time the tingling around the mouth started and it settled very quickly. Within a week they were back to normal. Your daughter should be absolutely fine in that respect.
Regarding medication, be aware that your daughter may one day need T3 but will perhaps be fine with just Levothyroxine for some time. It was five years before I realised I was not in good health and it was all attributable to loss of thyroid and low T3. I went privately to get a prescription and was lucky to have a GP who then took over the prescribing. For how much longer I do not know...
Hope it all goes well for her. Big hug to her and you too!
It must have been a huge shock. Similar thing happened to my sister in law nearly fifty years ago, she was probably about 20 maybe 21 at the time she had a new baby and two year old and as you can imagine we were all shocked and horrified.
She had just had her second child and was breast feeding when she discovered a lump on her throat. Her doctor assumed it was just a cyst - for exactly the same reasons as you have found. When the baby was a year old and had stopped breast feeding her doctors investigated and found the lump was found to be cancerous.
She had a thyroidectomy right away plus radiation treatment. She was studying for an OU degree at the time and took her books into hospital in plastic bags.
She got her degree, did teacher training, taught for many years, was and still is incredibly active - serious swimming, rock climbing, long distance hill walking, camping, mountain biking, sailing, you name it she’s either done or still does it and she has stayed slim as anything. She and her other half travel abroad a lot and she comes home every now and again to stock up on her levothyroxine and off they go again.
At the beginning I remember she used to feel very stressed when it came to time for her check ups but after a few years she was ok with that too.
So I know it’s ridiculously easy for me to say but your daughter’s future can be very good - in fact if it’s even half as good as my sister in law’s it will be pretty great. Sending you the very best wishes because I can imagine how absolutely shattered you must be feeling.
Tears welled up in my eyes when I read your answer. That's how I want my daughter to be....God willing there will be a silver lining on this cloud. But worried about radioactive iodine treatment and a second surgery.
How difficult it is to be a mother. How painful it is to see someone you dearly love going through this.
I'm hiding my tears from her. Just gave her a quick hug. I knew if I held her long enough I would burst out crying
Tears are welling up in my eyes just reading your response, your children are they are so precious and I can only imagine the agony you are feeling. Stay brave for her and hope it all goes well for your daughter.
Thanks for replying. As mentioned to Mary her parathyroid glands on the left side are preserved despite of the surgery. But the doc says d in absence of adequate blood supply they can stop working. Let's see what is the next step they take. Her TSH in November was 22 and today it was 10. So the consultant said that levo is working and we need to give it time.
Oh good about the parathyroids and I think it depends on the skill of the surgeon not to damage them, so I hope the second op will be as successful.
As for her Levothyroxine dose, it sounds too low, if her TSH is still 10. It has not moved very much in three or more months. How is she feeling? I know nothing about cancer and Levo, so I may be wrong but I think her blood tests should by now be much better and definitely within the reference range.
I'm sorry to hear your daughter's been diagnosed with cancer. If it's well differentiated thyroid cancer then it's very treatable. You will have to take the advice of the oncologist about further treatment as the type of cancer, size, rapidity of growth, age and other factors can affect the decisions and you need expert advice. I haven't had radioactive iodine treatment but hopefully someone with experience here will respond.
Calcium levels are usually only affected if the surgeon cannot retain the parathyroid glands due to position of residual tumor. It's something you could ask about.
If you want to ask questions now you've had a chance to think about the diagnosis, you could ring the surgeons secretary and ask how best to contact the surgeon with your questions or you could write a letter to the surgeon via his/her secretary. If you give a telephone number then they will likely respond and clarify anything you are concerned about.
Yes. The surgeon did say that a few more ppl will now take care of my daughter. Fortunately a good friend is an oncologist so once I have the report ill forward that to him. He said the same thing, about how big it was. It was 1.3 cms we were told. But nothing else. Will keep you all posted. Have u had a complete thyroidectomy? Are u on T3 or NDT or levo or any combination.
Thanks for responding. I remember you did reply to my first post too. Much appreciated.
1.3cms is a very small tumour so hopefully the surgery will have cleared it. If it's well differentiated papillary thyroid cancer then it will likely be an excellent outcome and prognosis.
I had a partial thyoidectomy so still have a portion of one side of my thyroid gland although I am dependent on levothyroxine. I haven't tried anything other than NHS levothyroxine and had trouble with it at the start but am now fine.
My non medical advice as one patient to another if she needs to take levothyroxine is to take only one type, don't let the pharmacy swap brands, take the one that suits, avoid TEVA unless there is a dairy allergy as many seem to have had problems with it. Check vitamin levels and keep them optimal, especially vitamin D. A good vitamin D level is said to aid recovery.
I've lost parathyroid glands on one side but apparently, so long as you have one left the body will adapt. However, check vitamin D levels and keep them optimal, ensure diet contains enough calcium rich foods and later in life, at menopause, ensure additional calcium intake in food and if insufficient then calcium supplements may be needed. Ensure plenty of exercise to optimise bone density and keep a check on it in later life.
Thanks Nanaedake for all your wonderful advice. I do give her b12, vit D + K2 and she has ferrous fumarate twice daily. Her calcium levels are good right now.
But will definitely keep an eye on it. For us the biggest problem right now is not knowing what the future holds, what type of cancer she has, what's the plan of action. But we are seeing the consultant again during the Easter break. So hopefully will have a better idea.
You must be so worried but wanted to offer a little reassurance ...
Same thing happened to me when I was in my early thirties . ( 16 yrs ago) I had two very young children and was terrified when the cancer diagnosis came back after partial thyroidectomy.
I was given various options but opted for full thyroidectomy about five months later when I felt I'd fully absorbed all the info and made the best decision for me.
As others have said she's young and she'll recover well, calcium will be kept an eye on and the scars usually heal very well - no one ever notices mine unless I point it out !
I did fine for 10 years on tbyroxine replacement but then needed more . I now take natural ndt and T3 and that seems to be the best combo for me . Your daughter will find hers . Take care of yourself too, and try not to worry too much , she's lucky to have a mum doing all this research for her !
I opted not to have RAI out of personal choice , though it was recommended protocol at the time so am not able to help with experience there ..
The NDT I have now I source myself from an American pharmacy , it’s fairly straightforward and easy to do .
My endocrine doctor is happy to monitor me on it and just pleased I do well on it and all my blood tests show it clearly replaces Thyroid hormones well .
Good luck with it all , I’m sure she’ll be fine once she gets settled on the right route ..
Hi Sorry I don't know anything about thyrodectomy but I know members all give good advice I just wanted to wish you, your daughter and family well at this stressful and difficult time
This forum is becoming like a family to me with all the medical advice on top. It's very reassuring to get messages from. People who speak from experience. Thank you for your kind words.
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