My journey to a partial thyroidectomy to remove a multinodular goitre

My journey to a partial thyroidectomy to remove a multinodular goitre

With a strong family history of thyroid disease I suppose it would be inevitable that I would suffer from the disease as well.

7 years ago as a fun-loving twenty year old I was, like many people that age, looks-obsessed, and wanted gorgeous long hair. My hairdresser unwittingly suggested Kelp as she had heard it made your hair grow. No-one in my family had thought to tell me of my family history of thyroid problems, and not knowing the link between excess iodine and thyroid problems I unwittingly bought myself a bottle of Kelp supplements from Holland and Barrett, and started taking the maximum dosage recommended on a daily basis.

Within a few months yes my hair had grown, but I had also started to suffer the effects of an over-active thyroid. I was constantly anxious and could never settle or relax, and had real problems sleeping. Being always hungry was another symptom - I would finish my meals in 30 seconds flat, and eye up my fellow diner's plates eagerly hoping to polish off their left-overs. My most worrying symptom for a now 21-year old girl was that my periods completely disappeared. I did not have a period for 8 months in total. I was sure my lack of periods was due to stress (I was in my final year of University at the time), but when I finally visited the doctors I was surprised following a blood test to be diagnosed as having an over-active Thyroid.

I was swiftly put on Carbimazole to suppress my thyroid. Although my periods returned I hated my medication as I felt I put a lot of weight on whilst on the tablets. I felt very self-conscious and suffered from low self-esteem. I was ecstatic when after just over a year my Endocrinologist announced me 'cured' and said I could stop taking the tablets.

The weight-gain dropped off and I felt like a butterfly. I started to flourish - buying a flat, and meeting my now husband and a had good few years with no thyroid problems.

Flash forward to last July (2012). My husband and I have been married for 9 months and are talking about trying for a family, when my mum notices a large lump at the front of my neck. When I look in the mirror it is huge - the size of a tennis ball and I cannot believe I have not noticed it before. It moves when I swallow, and we suspect a goitre. As my husband and I have moved house I quickly have to register with a local doctor. Although my parents are convinced it is nothing serious, cancer does run through your mind, and the 3 day wait for my appointment seems a long-one.

I have convinced myself by this point I have all the symptoms of now an under-active thyroid, will be diagnosed as such, put on Thyroxine, and my goitre will shrink. I am therefore surprised when my thyroid function tests come back as 'normal'. I have now developed a tickly cough that I am concerned is caused by the goitre resting on my windpipe. I manage to get an appointment for a scan 4 weeks after my referral but convinced I now have thyroid cancer in a blind panic I arrange for a scan at a private hospital the following day.

At the scan the radiologist tells me he thinks my goitre is just a cyst, but offers to aspirate it . Me being naive I agree to the aspiration thinking this will drain all the fluid from my cyst and that will be it - it will be gone. I pay £500 for the scan and aspiration. The next day I am surprised to see my goitre still there - as large as ever. I call the private doctor back up who explains to me then that only surgery can now remove my goitre, but a lot of people live with them. He recommends that I am referred to an Ear, Nose and Throat (ENT) surgeon to discuss next steps. The good news is the biopsy confirms the goitre is a cyst.

Two months after first discovering my lump I trot into my appointment with my ENT surgeon but his advice is to live with the lump rather than messing with my thyroid and causing fertility problems. He does however want to arrange another scan and biopsy.

During the scan my radiologist tells me the cyst appears to measure 3.9 cm and due to its size he would have it removed. He does another biopsy, and I go on holiday with this conflicting advice ringing through my head. My husband and I are now actively trying for a family.

A second surgeon then tells me the latest biopsy has not come back clear, but as inconclusive. She recommends that I remove the cyst, and potentially half my thyroid, and not to worry about any scar, or impact on fertility, etc. This is the complete opposite advice I received from my original surgeon. In a panic I ask for another scan and biopsy to clarify the situation . This radiologist explains why aspiration alone will never remove my cyst – solid tissue surrounds the liquid, a bit like an egg, therefore even if you removed all the liquid you would still have the shell. The radiologist also confirms that my thyroid problems may be contributing to the fact my husband and I still haven’t conceived.

The results come back again as inconclusive but the surgeon is happy for me to leave things as they are and come back for a repeat scan in 6 months ‘ time.

During this time of conflicting advice and indecision the Thyroid UK website was a great source of information. I used it to research thyroid symptoms and treatments. I made a note of the thyroid blood tests (including anti-body tests) that should be offered to patients and note that not all thyroid tests were done when my bloods were first taken back in the summer. I make another appointment with my GP and request the blood tests. Although he writes the request form he explains that not all the tests are done as a matter of course, and if my TSH comes back within normal range, the lab can refuse to do the other tests. I spend a nervous few days waiting for the results, and am not surprised when my GP calls to tell me I have abnormally high thyroid anti-bodies (1500+) – the normal range is 0-100. Following my research I understand this signals Hashimotos Disease, and be the cause of my goitre. I read it can be treated with thyroxin. When I tell my GP this and ask if I could be tried on Thyroxine he is surprised – and won’t prescribe it because my TSH is normal. He does agree to refer me to an Endocrinologist whose explanation is that my antibodies have been left over from my over-active thyroid now six years ago, are nothing to worry about, and therefore no medication was needed.

Still not pregnant, with a large lump at the front of my neck and frustrated with my experience of doctors and hospitals I became fairly down and depressed, and had a good few weeks leading up to Christmas where I struggled to get out of bed. I tried to cure my thyroid problems naturally with a good multi-vitamin supplement and brazil nuts, but nothing seemed to work.

By spring my husband and I started fertility testing, and convinced my thyroid was to blame for our infertility I book an appointment for the end of May with Professor Gerard Conway – a thyroid reproductive specialist in London on the advice of Thyroid UK.

My last follow-up scan was scheduled for mid-May . At the scan the radiologist said the good news was my cyst had not appeared to have changed, therefore he did not feel the need to do another painful aspiration and biopsy. As nothing had changed I was half-tempted to cancel my appointment with the surgeon the following week which I had pushed for, but was so glad I didn’t. The first thing my surgeon said was he wanted the lump removed, and felt confident he could do it without damaging my thyroid, leaving just a small scar. This was the complete opposite of what he had told me back in September! He said he wasn’t happy with the biopsy results from October and at 27 I was too young to have the question mark of cancer over my head. This was mind-blowing. My suspicious biopsy was now 7 months old, and no one had thought to contact me to book me in for surgery. Surgery was arranged for 2 weeks’ time, allowing me to meet with Professor Conway in the meantime.

Professor Conway was a doctor I felt I had trust in. He explained that as all our fertility tests had come back as normal, the thyroid antibodies could be causing very early miscarriages, and causing our infertility. He prescribed me 50 mcg of Thyroxin there and then, and asked for me to have blood tests every 4 weeks to make sure I was always on the right dose.

Feeling happier I headed to surgery. After my operation my surgeon came around to see me on the ward. He explained that my goitre was a lot bigger than any of the scans had shown – the size of a Satsuma, and had been growing down into my chest. He said this was typical of Auto-Immune Thyroiditis (or Hashimotos). He therefore had to remove half my thyroid, and also prescribed me 50 mcg of Thyroxine in the hoping of preventing the antibodies attacking the rest of my thyroid and causing another goitre.

I am now two weeks post-op and am happy to report I am feeling better than I have felt in such a long time. Whether it the relief of no longer having a goitre, or the Thyroxin is doing the trick I don’t know, but I am just happy to be feeling normal, and being able to go out and live my life again. The scar is small and such a thin line – about 5cm across. I am applying my bio-oil religiously twice a day and it looks better every time I look in the mirror.

The great news is that it is that the cyst was benign. It measured in total 7 cm x 5 cm x 4 cm and weighed 39 grams, so not small by any means and a very large structure to have in my neck. Another surprise is that when everything was analysed was there was no thyroid tissue left – it had completely destroyed and taken over the left-side of my thyroid.

I still have a couple more weeks signed off from work – I am having my first thyroid blood test next week to ensure I am on the right dose of Thyroxin, and will also get all my Calcium levels checked – the thyroid is very close to the parathyroid glands and control calcium levels - if they have been damaged I may need calcium supplements. I have a post-op check with the surgeon in 2 weeks’ time, where I hope I will be discharged, and a year after first discovering my lump I can now focus on getting on with my life.

4 Replies

  • I had my right thyroid removed due to a lump of the size of an egg when I was 23 ..I have three daughters now and that was the end of my problems for 30 years. I didn't need any medication either. You will be fine ! Saying that ..the problem did come back to haunt me 30 years later and I just came back from hospital on Tuesday having my left thyroid removed I am now thyroid glandLESS ..but I am happy more nasty strangular feeling and snoring! all the best with your family planning I am sure all will be well :o)

  • I was shocked to read this in how similar it is to my own experience and i am only 16. i was thought i would take medication to shrink the goitre and all would be well, then they said id just have to live with it, tests were coming up fine and months later here i am with mutli-nodular thyroidism which i have been told is serious and can be very dangerous in my future with breathing problems and that i am borderline of having thyroid cancer. i have been so shocked in how quickly the GPs have changed there mind on the seriousness of my case and i know just how scary it can be. I myself will be having surgery to have the whole thyroid removed so will also be thyroid glandLESS hehe. you sound as though you've handled it incredibly well and i wish you the best on starting your family

  • Good luck in the rest of your recovery- sounds like you are doing really well! I had mine out in February this year and feel well most of the time and the scar is just a red line now. Take care

  • good luck, an amazing story, so happy you are feeling better x

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