Lived Experience Forum

[Thy]

Hi there,

I had papillary thyroid cancer when I was younger, a total thyroidectomoy and now have hypothyroidism and hypoparathyroidisim.  16 years on and I am still learning about what happens to my mental health when I am over or under suppressed or if my calcium is too high or too low - usually when things go wrong both of these issues are out of whack.  

My mood is very rude to deal with, my work colleagues struggle, my young kids make excuses for me and because I am in it, it takes me a while to work out that I am metabolically unbalanced.  It’s not something that people can visibly see when something is wrong, so it’s difficult for them not to reconcile that it’s not just me being a complete bitch.

It also drives me mad that the medical profession thinks thyroid disease is easy to fix - why do they think a synthetic pill can completely replace a major hormone in the body?  There is definitely a link between brain function and thyroid and calcium, although not one clinician told me that at the time of diagnosis and treatment - I have had to learn the hard way.

I do genuinely feel jibbed - would I have chosen a different treatment path had I’d known my mental health would end up like this???

[Mulgajane]

Whoa Thy New Contributor,

it is so good to hear someone talk about this!

I am a 51 year old woman who is hypothyroid with Hashimotos. I have also been diagnosed with Bipolar II. I struggle with what I have recognised as an 81 day cycle due to my bipolar which is a fascinating number - love to know what that is all about..

I take a synthetic hormone for my Hashimotos and no, it does not cure, nor make me feel 100%, but it is all I have besides looking after myself with diet and exercise.

I agree that there seems to be nothing new on the horizon regarding thyroid help - nobody told me about calcium!

We should talk 🙂

[Thy]

Thanks so much for the support. An 81 day cycle must be very difficult - I can only imagine that it must be like being on a constant roller coaster of emotions!  😊

From the resources I have read, there seems to be a link between thyroid disorders and bipolar symptoms.  I was assessed a couple of years ago for bipolar as I went into a manic state but was deemed to be stressed with a thyroid disorder by the psychiatrist.  More research needs to done in this area - I don’t think the medical profession have joined all the dots on this topic yet.

The other really annoying part is how slow the thyroid hormone takes to fix (around 6 weeks) and how quickly calcium changes (2 days) - so managing 2 chronic conditions with such differing timelines is tricky.

According to the surgeon ‘you will take one little pill for the rest of your life’ - what a complete undersell of a lifelong chronic condition (and its more like 10 pills a day, just for the record)...the human body is not a machine, what dosage works today might not be right tomorrow - we are not a walking pathology test that immediately senses there is a problem, sometimes we just get it wrong.

[Far]

Hi Thy

I had thyroid cancer followed by a complete thyroidectomy (including parathyroid) mid twenties. I am mid 50’s now. By mid 30’s I was diagnosed with anxiety agoraphobia and have been medicated since for this as well.  Early 40’s I was diagnosed as Coeliac. I have had numerous inflammatory conditions requiring mild steroid therapy from ocular to renal and all the joint, skin and muscle pain on and off from around 10 years post thyroidectomy. Vestibular neuritis has given me permanent tinnitus that causes sleep deprivation. My white blood cell count, kidney function, mood, energy, memory and of course thyroid function can fluctuate anywhere from 6 to 12 months. Most recent was under 6 months (hyperthyroid and blood cell count) which is concerning as the turn around may becoming more frequent. I now get carpal tunnel as a symptom of thyroid dysfunction as well. The last Gp I saw reassured me with ‘it’s only carpal tunnel, you won’t die from it’ which I think was a condescending allowance regarding his view of me as a hypochondriac not an agoraphobic. I can’t remember what it’s like to be without some form of pain now, physically and psychologically. I find my mood changes embarrassing. When your in that phase your in too deep to see it. No one understands because you look ‘normal’ you appear to function just fine. The ‘you’ll be fine in about 6 weeks’ from meds adjustment is belittling and trivialising.  No one tells you how to get through that 6 weeks so you make it to the next plateau. Okay, after that mouthful just wanted to say I really hear you and feel it too. Take care. Far