Operation in 2 days, need advice please.

[nickym1]

I go to hospital for a half or whole (to be decided) thyroidectomy on 2nd Jan. Just the right side of my thyroid is quite large, and I've been told that I can decide whether to have half or whole thyroid removed. My scan showed large nodes within the tissue of my thyroid, but the fna results were inconclusive. I really don't know what decision I should make. My blood test came back normal. I have been very worried about this, as I really don't know what I'm dealing with. I'm not even sure what questions to ask! Any suggestions are very welcome.

[helvella Administrator]

Number one - I don't know much about enlarged thyroids, etc.

Number two - what a very difficult question, for you especially.

Have you been tested for thyroid antibodies (maybe Thyroid Peroxidase antibodies, TPOab)? This might affect your choice.

Have you got the actual blood test results (and reference ranges)? We have heard "normal" applied to grossly abnormal results so many times we do not trust the word "normal" any more.

As I understand, your choice might effectively be constricted by what they find during the operation. For example, if they find what they consider "suspicious" material, they might feel that total removal is in your interests. And it does seem likely that having it done in one operation is better than doing half and going back in a while for the other half. Make sure you have discussed this and put your decision is in writing.

We hear of people after thyroidectomy not getting properly treated with replacement thyroid hormone (which would probably be levothyroxine only). There is a rule of thumb that you would probably need at least 1.6 mcg of levothyroxine per day for each kilogram of your body weight. Very likely, that would need raising quite quickly but you have to start somewhere. It is important not to hang about.

(Some doctors,especially GPs, seem to think you have to go as slowly as with someone who has been suffering hypothyroidism for years. But if your thyroid hormone levels are OK now, then the aim is to get back there asap.)

If (or should that be "when"?) you are on levothyroxine be aware that it is important to take it consistently, away from food, drink other than water, supplements or other medicines. Say, aim for a two-hour gap if possible. Doctors usually say in the morning but a fair number of people take it at bed-time - and that might be easier or work better.

There is much,much more - but maybe that will give you some thoughts?

Do, do come back. I hope someone with direct experience will answer soon.

Rod

[nickym1 in reply to helvella]

Rod, I have replied, but in the wrong place. Sorry, it's further down this post. Thanks for responding so quickly to my question. I wish I'd found this site days/weeks ago!

[helvella Administrator in reply to nickym1]

No problem!

Hoping it goes well. And, without pushing yourself too hard to do so while you are still recovering, we want to hear from you after. OK?

[shetlandscooby]

Hi,

In April 2011 I had an MRI that showed too many lymph nodes or an enlargement of lymph nodes in the right side of my neck. The scan was requested by my chiropractor due to me getting pins and needles almost constantly in my right hand and having a history of fused verebra in my neck. Following the MRI I had an ultrasound, CT scan with contrast and then a FNA that come back inconclusive. After the surgeon poking my neck it was decided that my right side needed to come out. In October 2011 I had my operstion, and once healed I felt the best that I had done for a long time. Unfortunately in my case they found 2 small tumours in the nodule in my thyroid and I had to have the rest of my thyroid removed in November 2011 and another small tumour was found on the left side. Due to having to have RAI twice afterwards my thyroxine levels are still being adjusted.

Your surgeon should suggest what is best for your thyroid and will look at the condition of the tissue whilst removing the side that needs removing. If I had to turn back time and have it all done again I would have 2 operations in the chance that there is nothing horrible in the right side and I may of been able to keep my left side. Obviously each case is different but I would strongly advise you to discuss all the options with your surgeon when you meet him before the operation.

Hope it all goes well for you.

Charlotte

[nickym1 in reply to shetlandscooby]

Charlotte, thanks for sharing. I responded in the post below, as I hadn't spotted the 'reply' button. Thanks again.

[nickym1]

Thanks Rod for your suggestions. I haven't had any extensive blood rests done at all. I wish I had the results I do have to share with you guys, as you seem more informed than the gp's. Charlotte, thank you for sharing your experience with me. I also have had problems with the C4 part of my spine fused, which resulted in years of shoulder problems, and eventually rotary cuff surgery in 2007. My shoulder problems persist to this day.

I was originally told that complete thyroid removal would be done due to the size of my lump, and this should have taken place on12/12, but I got postponed at the last minute until Jan. At my most recent appointment (to try to get the op back on before Christmas) I was given the choice of half or total!

My problem is that I lost my younger sister in December 2011 to cervical cancer, so the fear of cancer is very fresh and rather close to home. I don't want to take any chances, but would rather hang on to half of my thyroid if possible.

I'm due in hospital 7.30 am tomorrow, so feel it's late in the day to be trying to make this decision.

However, if the hospital can guarantee a swift second op (should it be necessary) I'm liking the half thyroidectomy idea for now. I guess I'll have to speak to my surgeon and see what he says. I happen to know that although I haven't met him yet, he is the consultant in charge, and he is the one who originally said that the lot should come out.

I'm also concerned that despite being told by the hospital that the thyroxin will make me feel normal, lots of people here seem to be having ongoing problems. This worries me.

I turn 40 in a few days time - I should be in my prime!

Well, thank you guys. Wish me luck,

Nicky.

[TTLady]

I had a TT a year ago take thyroxine daily and haven't felt this well in years. Its worth remembering that the majority of people on forums etc are there cos they are still struggling there are just as many out there with no problems at all they just aren't on these sites because they feel fine. I'm sorry you've got to make such a decision so fast

[nickym1 in reply to TTLady]

That's a very good point. I guess I'll keep an open mind until I've spoken to my surgeon tomorrow. It's difficult to get my head around all of this as it's happened so fast in my case.

Thanks for sharing.

[TTLady]

Sorry hit the wrong button!!!! All the best for tomorrow Nicky make your decision for yourself and don't allow them to bully you into doing what they want. Here's to a healthier new year xx

[nickym1 in reply to TTLady]

Ah, thank you.

Yes, here's to a healthier New Year!

[Hidden]

I had a sub total thyroidectomy for Graves but the remaining half died after the trauma of the op, which went wrong. So, it's maybe worth baring in mind that sometimes it won't function even if half is left in. My parathyroid glands were destroyed in the process too leaving me dependent on calcium and alfacalcidol daily for life. It's difficult keeping my calcium in range and my kidneys have a harder workload dealing with the daily calcium dump.

Not wishing to scare you nicky, just stressing the importance of finding a skilled surgeon who had done this op many times. xx

[nickym1 in reply to Hidden]

Thanks for sharing. Sounds like you have a hard time of it. I have looked into my surgeon, and I am happy with what I've read, and been told by a friend who works at the hospital that he's excellent. So fingers crossed. x

[shellybelly_71]

If your tumor is spread over both sides I am sure they will take it all away, if not they may leave it behind. I had my right side removed then the left a few months later. The op is no problem, really not painful, but take things easy after. Good luck for tomorrow x

[nickym1 in reply to shellybelly_71]

Thank you. Good to know that it's not too painful - that's always a worry. I'm concerned about breathing afterwards. Did you find your windpipe was affected at all? I'm hoping not!

[shellybelly_71 in reply to nickym1]

No, I had no problems really. The first op my voice was a bit David Beckham when I shouted, which was highly amusing. No problems with the voice on the second op. Didn't have enough pain relief for the second op, but that wasn't my throat are that was sore it was whatever position they had my head in, wee injection on morphine sorted that thou. They didn't give me it the second time cos they thought that's what was what made me feel sick the first time, I wasn't sick just squeeze. You will have a drain in after while your in the hospital, just mind and take it with you when you get up to the loo lol, I got up while mine was still attached to the bed lol. Honestly you will be fine. Just take things easy. I know your worried about the cancer side, mine was. One thing I would say to you is about your medication. I was put on thyroxine, after my second op. I was only on it for 4 weeks and came of it for just 2 weeks because I had to have radio iodine therapy. Now really they like you off thyroxine for 4 weeks before this. Since I have had this I am on lythyronine. Which you only need to be off for 2 weeks before the iodine treatment. Once you have your firts treatment of this you need a follow up scan which again you need to come off your meds for. So if I were you IF they remove the whole thyroid ask if you could be put on this instead of throxine, it would be much less of a pain for you IF you have to come off it. fingers crossed thou that this is not the case for you but if it is, try not to worry. I come of my meds on the 25th of this month then in for my folow up scan, then hopefully I will be cancer and thyroid free. If you need any more advise just come here.Not so many that have had a thyroidectomy but lots of very good advice for your good health x

[nickym1 in reply to shellybelly_71]

Thanks so much for taking the time with all this. I really appreciate hearing other stories, as just a few weeks ago I didn't even know where my thyroid was! I feel pretty clueless!

I hope that your follow up goes well, and I'll certainly update on here after my op is over and done with.

Do you know how long it takes for results of the op to come back? I was told that they will be chopping my thyroid into tiny pieces and checking it all, but I wonder how long I have to wait?

Cheers again,

Nicky.

[shellybelly_71 in reply to nickym1]

Mine took far to long, supposed mistake from my surgeons secretary. She got her arse kicked to another job. Mine was back in just over 3 weeks but I didnt get it for 6 weeks, it was my gp that gave me it, I went to him and asked him to look up the sky system, am in Scotland so dont know if we are different. Then it was all steam ahead. My oncologist says the new pathologist are finding all these new micro carcinomas.So be sure they will go over it well. You are more than welcome, I wish I had had someone to talk to before. X

[nickym1 in reply to shellybelly_71]

Oh poor you. That must have been a shock after six weeks!

I am writing down questions to ask tomorrow before surgery, and am finding you all really helpful. Thanks so much x

[Hidden]

Hi Nicky - what a difficult decision, ultimately the surgeon will make it for you, depending on what he finds. I hope it goes well for you.

In my case, I had a partial Thyroidectomy (half removed) 2 years ago, the fna results were inconclusive too but the nodule was deemed dodgy (but luckily benign) the other half has 'functioned' so far without Thyroid medication, although I do have 'hypo' symptoms these are much better than the way I felt before the op.

Get your blood results for before and after, and ask about the parathyroids too and...

take food & water! (e.g soup in a vac flask) - eventually I was offered some toast, which was not helpful with a sore throat! Also I massaged the scar with Vaseline to start with, and then bio-oil, luckily hardly noticable now. Best wishes to you - Jane x

[nickym1 in reply to Hidden]

You would think that the surgeon would just do what he deemed necessary, but when I asked the registrar, I was told that the surgeon would need a definitive plan of action before proceeding. I will speak with him before surgery, and decide from there I guess. I only wish I knew what was causing the lump, as I haven't been particularly ill even. Anxiety, insomnia, night sweats. I'm only guessing that these symptoms are connected. Nothing has been confirmed. Thanks for sharing, and for the advice. Nicky.

[Hidden in reply to nickym1]

Sadly they don't tend to look at causes just treat per symptom. Personally my take was 'better out than in'. Now I think, only from reading a lot afterwards, that, for whatever reason which can trigger an autoimmune response inc. hereditary prone stuff and/or vitamin/mineral deficiency and/or gut problems, who knows? - but the body just tries to compensate e.g. the Thyroid becomes enlarged (goiter) trying to make more hormone - but everyone is different.

All the best for tomorrow sweety Jane x

[nickym1 in reply to Hidden]

I feel like I found this site in the nick of time!

Thanks Jane for taking the time. I get the 'better out than in' - but if it's not cancer, I wanna keep t'other side in the hope all can be normal again!

Of course, if it is cancer - and I won't find out until they've tested whatever they remove, then it's got to go..........oh what to do? .......

[Hidden in reply to nickym1]

I purposely didn't say what my preference would be, we're not docs here after all - just fellow sufferers. I had a 4" scar and was really annoyed knowing others had a neat small inch scar - but my surgeon wanted a good look around, now I know why. Hopefully multinodules are a better bet than a single one like me, and I'm sure you'll be fine - don't forget your soup!

Also there's some lovely trendy scarves around - treat yourself! And please let us know how you got on, Jane x

[nickym1]

Well, I'm here at the hospital. Have met my surgeon, and we've decided to remove just half.

If they find cancer, I will have the other half removed at a later date in order to have RAI treatment. Hopefully this wont be necessary of course.

I don't expect to be seen until later, as day patients go first. Preparing to be very bored......x

[Hidden in reply to nickym1]

Hi Nicky, just checking up on you!

I remember I waited all day & was last, at least you've seen the surgeon. All the best J x

[nickym1 in reply to Hidden]

Well, starting to feel human again! All went well I believe. I'll know more when results come back of course. The surgeon called it a F............... Adenoma? until/unless they find out otherwise. The F is a word I cannot remember, not the rude one!

I'm doing alright though,

Cheers, Nicky

[Hidden in reply to nickym1]

Lol! Brilliant that you're feeling well enough to post Nicky, hope you manage to have a good night's sleep, take it easy, I stayed in one night then think I had 2 weeks off work. They gave me co-codamol, be wary it er.. clogs you up a bit, but lactulose helped!

Don't forget regular checkups and to get your blood results, keep a record and sometimes they need reminding they are supposed to be monitoring you.

You may mean follicular adenoma, that's what mine was anyway (benign). I had to ring up for result as they forgot to tell me (5 weeks more worry).

Cheers too! Jane

[nickym1]

Thanks to everyone for sharing and offering advice. I'm home now. Just had the right half of thyroid removed after all. I go back for results in approximately 2 weeks.

I was told yesterday that my calcium levels would be checked before I left the hospital, but this didn't happen - even when I requested this. Nor did I have any blood test that I'm aware of. I was simply told to look out for numb fingers, ear lobes etc. as this would be an indication of low calcium.

Hey ho. I'm glad that this part is done anyway.

Thanks all, Nicky xxxx

[Hidden in reply to nickym1]

Good that you're home, & hope you have a swift recovery

Don't forget to insist on that Calcium test (recommended by the surgeon?) parathyroids affect calcium, they are 2 rice sized glands attached to each Thyroid lobe, they should have left them intact, if possible.

I wasn't told about numb fingers & ear lobes - & did have numb fingers - but Vitamin D supplements are helping me (my GP won't do a Calcium test 'tho - thanks for the info I will insist!)

All the best Jane xx

[shellybelly_71 in reply to nickym1]

Glad your home and all went well. Phone your gp and tell then your calcium wasn't tested and your worried, I wasn't allowed out hospital till my result was back! Get your feet up and look after yourself x