Saturday, 13 April 2013

Thyroid going, going, gone

Hello my wonderful friends whom I know and I don't know yet!

I am now five days post op having my total thyroidectomy and I thought it was time to share :-)

Previous to having my TT (total thyroidectomy) I found it incredibly difficult to find much out there about it that wasn't horrendously negative or just downright depressing.  It was my hope that my experience of this operation and recovery would have a better ending and that I perhaps could write a few blogs about the upside of this operation and living without my thyroid..

Flowers from Mum, Dad and Debs
Some background for you first about why my TT was necessary I suppose might be useful.  About two months ago now I rushed myself off to A&E when my thryoid blew up like a small tennis ball and I convinced myself I was finding it hard to breathe.  They took me in and it was discovered that the goiters I had had for some years, six years at least to my knowledge had grown somewhat, one in particular and was now being described as a tumour, hopefully of the benign variety.

I was released that night with an emergency appoinment to see a Doctor Mark Issard privately in Remuera.  Well as you know my dear friends Doctors and I well we have had a few path crossing moments in the last few years and I have to be honest when I say I was not looking forward to yet another meeting with a doctor and knowing in my heart of hearts that removal of this offending gland was to be suggested.

I meet up with Dr Mark who I have to say is just one of the nicest Docs I have ever had.  This doc restores my faith in doctors completely not only does he explain everything in terms that you understand without treating you as if you are stupid, he is kind, compassionate and has the bedside manner of an angel.  Ok so I totally have a crush on my surgeon :-) but at least it gave me something else to think about other than cutting my neck open!!  Joking aside though he has been brilliant from beginning to end in his treatment of me.

My Very nice Room at St Marks Hospital
When I first saw him I had an ultrasound that discovered that the lumps and bumps had grown hugely since a scan six years ago when my multi nodular goiters had been discovered when I was pregnant with my first baby.  I was told back then not to worry about it and just to ignore it - not very good advice it turns out!

Flowers from Rod (Six months together now!)
I also had a CT and this was I believe to establish where all my nerves and muscles were due to having previous neck surgery some seven years ago when I had titanium discs put into my neck in Australia.

It was at this point Doctor Mark discovered something that other doctors up till now had missed. I had something called 'Hashimotos' disease.  During tests in the past my results were always normal but this Doctor decided to do tests that were not your average tests as I had all the symptoms of having hypo thyroidism without the blood tests and had done for years.  To cut a long story short my results for Hashimotos came back as a reading of 357 I believe the normal reading is under 50 or some such thing. It will sound strange but I was actually pleased when I found out about the Hashi's as I felt like I wasn't going mad afterall!  All these years of being freezing cold, losing my hair, finding it impossibly hard to lose weight (even though I did) all had a reason and that was this Hashimoto's disease.

For those of you who don't know what it is a quick low down on the disease from our friends at Wikipedia (!) -

Hashimoto's thyroiditis or chronic lymphocytic thyroiditis is an autoimmune disease in which the thyroid gland is attacked by a variety of cell- and antibody-mediated immune processes. It was the first disease to be recognized as an autoimmune disease.[1] It was first described by the Japanese specialist Hakaru Hashimoto in Germany in 1912

Signs and symptoms

Hashimoto's thyroiditis very often results in hypothyroidism with bouts of hyperthyroidism. Symptoms of Hashimoto's thyroiditis include Myxedematous psychosis, weight gain, depression, mania, sensitivity to heat and cold, paresthesia, fatigue, panic attacks, bradycardia, tachycardia, high cholesterol, reactive hypoglycemia, constipation, migraines, muscle weakness, cramps, memory loss, vision problems, infertility and hair loss.

The thyroid gland may become firm, large, and lobulated in Hashimoto's thyroiditis, but changes in the thyroid can also be nonpalpable.[2] Enlargement of the thyroid is due to lymphocytic infiltration and fibrosis rather than tissue hypertrophy. Physiologically, antibodies against thyroid peroxidase (TPO) and/or thyroglobulin cause gradual destruction of follicles in the thyroid gland. Accordingly, the disease can be detected clinically by looking for these antibodies in the blood. It is also characterized by invasion of the thyroid tissue by leukocytes, mainly T-lymphocytes. It is associated with non-Hodgkin lymphoma.

Now it isn't usually the case that you need a TT with Hashi's but unfortunately for whatever reason my thryoid had decided to get mega angry and the goiters in particular one nasty one were getting out of control.  When it started to become symptomatic I was left with little choice but to have the offending gland removed.  I gave it so much thought and would rather have done just about anything else.  It had started pressing on my vocal nerves and had started effecting my ability to sing and for me this was the last straw.  My Doctor Mc Dreamy (sorry ;-) explained that this would worsen and over a period of time the growths would eventually cut off my breathing.  So to be honest it didn't take a rocket scientist to realise that it was time for surgery.

1st Day Post Op
On Monday 8th I had my total TT and I would love to tell you that I was my normal calm self but I would be lying.  I don't know whether I had just had too long to think about it or what it was but I was utterly panic striken even believing at one point that I wasn't going to wake up from my operation and this was it.  It has been the scariest week for a very long time and I am so pleased to be out the otherside in recovery mode.  I asked if I could see a picture of the thyroid as I believed this would help me come to terms with having it removed.  I hoped it would look horrendous so it was easy to understand the necessity of removal.  As you can see from my picture I certainly got this wish!!

Probably the hardest part of my operation day was saying goodbye to my Mum and sister who had accompanied me to the hospital and worrying about them!  I know that when I was in recovery I could hear them talking. I could hear the worry in their voices but the sedation was so heavy I simply couldn't open my eyes to reassure them, I just kept smiling in their general direction hoping that would help!  It was great to later speak to my little Mum and let her know I was doing ok.  It is so often the case that I believe it is so much harder for those who are the carers than those who are the patients!!

My Thyroid!!

For all those out there contemplating a TT for me so far it has been a total success.  Apart from the actual operation which is grueling and I did feel like I had been run over by a lorry for that first day. I feel quite amazing already.  I wasn't expecting to notice the lack of goiters in my neck but it's actually very noticeable to me when I swallow and even when I breathe.  I started on the meds for life two days ago and so far so good.  I have also not put on any weight yet and I am eating healthily and normally at the moment.  I was under the impression it would be liquids for weeks but I was eating the following day so even that bit wasn't true!!

2 Days Post Op
Sleep is a bit of a strange thing at the moment but at five days post op that could still be the anesthetic wearing off. Yesterday I slept like a baby whereas tonight again I have only slept for a few hours at a time etc. I do however  definitely already feel like I have more energy even though I am still recovering from major surgery.  I am also much happier in myself so I have to say I have great hopes that for me this has been a good decision and will continue to be one.   I know of course I will have my ups and downs but to be honest my life before TT wasn't exactly working out for me so the choice was pretty easy really.

On a vain note the scar already looks amazing and considering it was an operation on another scar it looks just amazing, my Doc it turns out is also an artist!!
4 Days Post Op

Will keep you updated folks!

If you are someone who is thinking about a TT or you have Hashi's and want someone to talk to please don't hesitate to drop me a line.  I was so desperate to talk through what I was going through with someone positive and who could tell me that for them it was the best thing they had ever done! You can get hold of me by going to my contact page here on my website.

Well folks back to bed for me now, knackered!! Remember folks rest up and be kind to yourself :-)

I know I have already mentioned my amazing surgeon Dr Mark Issard but I would like to take this opportunity to mention the absolutely awesome staff and nurses at St Marks Surgical Centre in Remuera.  Your care was outstanding and I felt so well looked after, you nursed me with compassion and bucket loads of empathy and I am most grateful to you all.  I was very scared when I came in and you made it a much easier experience for me.  It makes all the difference in the world to be nursed by nurses whose calling in life is to be a nurse.  The whole team at St Marks were faultless and I can't thank you enough for making my stay feel like a stay at The Hilton :-)    P.s the food from Nutmeg was also absolutely first class!!

The only place better to be than St Marks it turns out is to be at home with my folks and my lovely girls.  I am being thoroughly spoilt and looked after and my girls are being really good for me.  My eldest constantly asking if she can get me anything or tucking me up on the sofa when I am resting.  My parents have as usual been so wonderful and once again I am left asking myself what I would do without them in my life!!  The emotional support apart from anything else over these last few months has been tremendous let alone taking us in and looking after us all now.  Mum and Dad you are amazing and I love you more than words can tell you.

Have a great day!

My apologies in advance for any grammatical or spelling errors, I am on pain meds and the screen at times has been blurry!!!

Kate x

I wish I hadn't had to have my thyroid out at all and that I had taken my problem more seriously earlier.  If I had found out about the Thyroid factor I would have tried this than surgery!


  1. Well done for sharing your story Kate, even in your drug addled state!
    Like you said, there needs to be some positive reports on surgery such as this as people will undoubtedly always go searching on Google for advice which almost always ends up filling them with dread!
    So pleased to hear you're recovering well.
    Onwards and upwards, may the force be with you! :-)

  2. So glad the op was successful Kate. My Auntie had overactive thyroid and my sister had underactive thyroid and goiters and as I told you had to have her Thyroid gland zapped entirely. Years on she is absolutely fine without it and fine on her medication. I am sure you will be fine too and that they have done the right thing. Thinking of you and praying for your speedy recovery. Sending love and hugs Celia xxx

  3. This comment has been removed by the author.

  4. I am scheduled to have my thyroid removed on Friday. My parathyroid level is high, so the surgeon will be checking those rascals as well. I'm nervous, but I feel so terrible most of the time even on meds that I'm looking forward to having it removed. How are you feeling now?

    1. I am doing really well, my meds go out of whack every now and then but mostly I am doing much better. My weight is still an issue but that's probably because I eat too much!! Good luck with your operation I am sure it will go really well and you will be feeling much better in no time. Be kind to yourself when you come out of hospital and don't rush things, It took me a good couple of months to really feel the benefit so just take it easy. Kx

  5. My name is September. I've had hypothyroidism for two years now and I am 18. I would really like to know if you've lost any weight, what meds you have to be on for life because of the removal and whether or not it has made you in a better mood

    1. Hi September, I am sorry it's taken me such a long time to reply, I managed to lock myself out of my own blog!!! So weight loss yes that's a hard one, however I seem to have found myself a lifestyle choice that works to make me feel better and I have lost 12kg in 12 weeks. I went Paleo on the advice of my doctor and it's honestly the best thing I have ever done, I feel so much better. I have also changed to natural thyroid extract and that has vastly improved the way I am feeling too. I found an amazing doctor who is a GP but works holistically, she is totally amazing. So I hope that helps, 18 is so young to already be having thyroid problems. If you happen to be on the Gold Coast of Australia I know a great doctor!

  6. Kate, your story has relieved alot of my worries. I have to have half of my thyroid removed, due to a large goiter. I too worry about not waking up after surgery. I'm getting older and it is a worry. I talk to a surgeon this next week to decide a time. I'll be glad when it's over and I can feel better. Glad to hear that you are doing well. Thanks again for your story.

    1. I hope your surgery went well and you are now well on the way to recovery! It's a long road but one that will I hope make you feel much better!

  7. Well done I have Hashimoto's, found out one week ago after goiter and 8 kg weight gain in 4 weeks.
    Doctor said it should go down but finding talking and sleeping painful. Plus I feel like I have glue stuck in throat.
    Should I push to have removed

  8. With medicine, a food regimen, and physical activity it is possible to lead a normal life. It is not a condition alternative thyroid remedies that will resolve itself. Unless something is done a person will never feel completely right.

  9. Does this mean now that you have to be on Thyroid meds for ever?

  10. Thanks Kate for your blog. My op is 7 days away for a TT. Your positive comments are reassuring. Only found out today so reading your words is all I need for now. Your experience has relieved some of my anxiety.


Would love to hear from you!