# New - long post



## Australian Butterfly (Jun 6, 2013)

Hi,

I'm new here (37yr female) - my story so far...

My story begins last November when I experienced sudden weakness and stabbing pain in my left hand, along with numb spots. I went to the GP who ran an ultrasound/x-rays on my wrist looking for carpal tunnel or fractures. Both came back clear, he then referred me onto a neurologist who ran a neck MRI looking for nerve compression in the neck to explain the numb wrist/pain. They did find some bone spurs but concluded these were not compressing nerves. Incidental nodules in the thyroid were noted. I was then referred for a thyroid ultrasound of nodules and a Brain MRI as my left leg had also started to go numb. The largest nodule was 1200mm on the left side mixed solid/fluid so i had that biopsied and it came back suspiscious for papillary carcinoma. 22nd May I had the left gland removed and a frozen section done while I was under, came back clear. I went back a week later to find out I had a 700mm and 200mm papillary cancers and the original 1200mm nodule was inconclusive/suspicious for cancer. 5th June (2 weeks later) I have just had the right side taken out. Home from hospital and on 100mg of Thyroxine, 1200mg Calcium and Vitamin D. Recovery second time round so far seems easier than first time which has suprised me!! The incision site is alot more painful but I guess that is cos they've been in twice in two weeks! I have a follow up next wednesday to find out if any cancer is in the right gland. I wanted to know how you know if the cancer has spread as I had no signs of the cancer (lumps etc) and am concerned it may have spread. The numbness has cleared up (despite the fact my GP, neuro and endo surgeon all said not related to thyroid?) I still have stabbing nerve pain in the wrist (hoping this is not permanent) and muscle weakness. Has anyone experienced this before in relation to thyroid? I have had my calcium tested and that came back normal but my thyroid has been tested lots and come back normal even though I've put 17kgs on and been very fatigued last few years. A few weeks ago I ended up in an ER department with heart palpatations (it was a few days after the biopsy and I think it aggravated the gland) and numb face. Calcium came back normal and again they said had nothing to do with thyroid. Thankfully that hasn't happened again since!


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## joplin1975 (Jul 21, 2011)

I can't say I've had stabbing pain, but I did have lots of really bad muscle and joint pain.it has resolved itself now that the gland is removed and my meds are regulated.

I'm glad the surgeries went well for you!

You probably will have a follow up whole body scan. They give you a radioiodine pill and any metastatic tissue will "light up" when they scan you. Most people have residual tissue, as thyroid surgery is never clean and leaves some tissue behind. After the diagnostic whole body scan, you'll get another radioiodine pill to kill off the remaining tissue.


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## Australian Butterfly (Jun 6, 2013)

Hi Joplin,

I'm so glad it resolved for you. I've definately seen an improvement in mine so I'm hoping it continues. The biggest nodule was on the left side and have only had numbness/pain on left side...too much of a coincidence for me!! :tongue0015: With the Radioactive Iodine my surgeon indicated he wouldn't necessarily do that unless there was cancer in the right gland as well and I guess that is what is bothering me, cos I just want to rule out they have got it all!! It's still early days and I guess I will know more when I go back on Wednesday. I'm so relieved to have found this board!


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## KeepOnGoing (Jan 2, 2013)

They don't always do RAI - I had pretty much the same experience as you - partial followed by completion surgery. As the other half of my thyroid was clear and the 2cm papillary carcinoma was encapsulated, I didn't have to have RAI. At the time, I did feel a bit uncertain about this, but decided there was no point seeing an oncologist and not believing what he told me! I'm still being followed up every 3 months, with ultrasounds etc, and my TSH is being suppressed to try to prevent it coming back.

Good luck with those results!


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## Australian Butterfly (Jun 6, 2013)

Just realized my post should read 12mm, 7mm and 2mm - don't know why I added zero's!!! Brain? I'm guessing you have all figured this out already  If I don't end up having the RAI then yes I hope to be monitored fairly closely initially I guess just to make sure everything looks good.


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## joplin1975 (Jul 21, 2011)

If you don't have whole body scans, just make sure you have regular *stimulated* (that part is important) thryoglobulin labs drawn, along with ultrasounds.


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## KeepOnGoing (Jan 2, 2013)

I guessed (about the zeros)!

Hang on in there - it can all seem a bit overwhelming at this stage, but there are people on here who've been through it and come out the other side - and who are incredibly kind and generous with their help and support.


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## Andros (Aug 26, 2009)

Australian Butterfly said:


> Hi,
> 
> I'm new here (37yr female) - my story so far...
> 
> My story begins last November when I experienced sudden weakness and stabbing pain in my left hand, along with numb spots. I went to the GP who ran an ultrasound/x-rays on my wrist looking for carpal tunnel or fractures. Both came back clear, he then referred me onto a neurologist who ran a neck MRI looking for nerve compression in the neck to explain the numb wrist/pain. They did find some bone spurs but concluded these were not compressing nerves. Incidental nodules in the thyroid were noted. I was then referred for a thyroid ultrasound of nodules and a Brain MRI as my left leg had also started to go numb. The largest nodule was 1200mm on the left side mixed solid/fluid so i had that biopsied and it came back suspiscious for papillary carcinoma. 22nd May I had the left gland removed and a frozen section done while I was under, came back clear. I went back a week later to find out I had a 700mm and 200mm papillary cancers and the original 1200mm nodule was inconclusive/suspicious for cancer. 5th June (2 weeks later) I have just had the right side taken out. Home from hospital and on 100mg of Thyroxine, 1200mg Calcium and Vitamin D. Recovery second time round so far seems easier than first time which has suprised me!! The incision site is alot more painful but I guess that is cos they've been in twice in two weeks! I have a follow up next wednesday to find out if any cancer is in the right gland. I wanted to know how you know if the cancer has spread as I had no signs of the cancer (lumps etc) and am concerned it may have spread. The numbness has cleared up (despite the fact my GP, neuro and endo surgeon all said not related to thyroid?) I still have stabbing nerve pain in the wrist (hoping this is not permanent) and muscle weakness. Has anyone experienced this before in relation to thyroid? I have had my calcium tested and that came back normal but my thyroid has been tested lots and come back normal even though I've put 17kgs on and been very fatigued last few years. A few weeks ago I ended up in an ER department with heart palpatations (it was a few days after the biopsy and I think it aggravated the gland) and numb face. Calcium came back normal and again they said had nothing to do with thyroid. Thankfully that hasn't happened again since!


Aw; gee..................

You have had a time of it for sure!!

 and a big welcome too!

Have you had Thyroglobulin and Thyroglobulin Ab done prior to your surgery? This can sometimes be used as a marker to track this sort of thing.

These articles may be helpful.

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

You may have peripheral neuropathy which should resolve w/treatment.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669


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## Australian Butterfly (Jun 6, 2013)

Hi,

Andros - thanks for the links they were very informative, particularly the neuro information as all the doctors seem reluctant to admit a link! I got my results from the second surgery last wednesday. There was a cancer 5mm just outside the right thyroid gland. There was also some hurtle cells in the right gland. My surgeon also explained that when they took the left side they took 2 lymph nodes right next to the gland and one has been "reactive", I wasn't aware of this but glad they tested some lymph nodes - he didn't test any on the right side tho which I was suprised by? Anyway he has said he is confident he has removed all the cancer, doesn't want me to have the RAI as the long term side effects can be nasty. After my initial followup bloodwork in 6 weeks he want me to just have blood tests once a year. Testing magnesium, calcium, Thyroid Function, and Thyroglobulin. My concern with the blood tests is before the surgery my Thyroid Function tests were all coming back normal and clearly my thyroid function was not normal. Does this sound like a reasonable follow up treatment plan? I do trust his judgement as he is a very good surgeon. I think the shock of the cancer diagnoses is hitting me now rather than before I had the surgery and I feel apprehensive about if they have got it all. I feel utterly exhausted am spending most days just sitting on the couch and sometimes crying (think because Im tired) ...hoping my energy levels improve in the next few weeks! My surgeon wants me to get my meds adjusted through my GP but I'm wondering is it better to go to an endo for this? I realise I've probably posted in the wrong spot and should have started in newbies section...sorry about that.


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## KeepOnGoing (Jan 2, 2013)

It's good news that he is confident he's got all the cancer out.

I'm no expert, but shouldn't there be some sort of ultrasound on a regular basis? I didn't have RAI, but I do have regular (every 6 months) ultrasound follow-up and see a consultant every 3 months.

Also, have they mentioned TSH suppression? Getting your TSH down to 0.1 or below (that's my oncologist's aim, though we're not there yet!) As I understand it, that's an important part of keeping it away.

I'm sure the experts will be along soon to give their (much more informed) opinions. These are just ideas from what has happened to me in a fairly similar situation but totally different country and medical system.

And yes, I know exactly what you mean about the shock of the cancer diagnosis not hitting until after the event. It was exactly the same with me. It will get better - hang on in there and be kind to yourself. Your hormones are up the creek at the moment and we all know what that means...


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## joplin1975 (Jul 21, 2011)

Agreed. They are moving away from WBS because of the radioactive iodine, but you do have to have ultrasounds. At least for the first five years.

And, again, that Tg *has* to be stimulated - either by thyrogen or going hypo. And you *have* to have TgAB run with the Tg.

Good luck!


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## Australian Butterfly (Jun 6, 2013)

Ok, thanks for the info. When I go to my GP for 6 week test I will ask about the ultrasounds (neck - looking for enlarged lymph nodes I'm assuming ? if they are not doing whole body scans). I think I will have to ask my GP for a referral for an endo as the surgeon hasn't mentioned any of the specific tests you have mentioned, my Surgeon did mention that my TSH has to be at the very low end of normal and wrote it on my blood test notes for the GP so I will keep an eye on that.


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## joplin1975 (Jul 21, 2011)

Yes, looking for enlarged lymph nodes, but also making sure there's no regrowth of thyroid tissue (very possible as thyroid surgery isn't a clean procedure...there are almost always thyroid cells left behind).


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