Does Hypothyroidism Change Who We Are? - Thyroid UK

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Does Hypothyroidism Change Who We Are?

lonely_pioneer profile image
13 Replies

Hey folks. I've been documenting my experience with hypothyroidism. I wanted to share some of my reflections in the event they are useful for those searching for answers.

medium.com/lonely-pioneer/d...

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lonely_pioneer
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dandiliontilt profile image
dandiliontilt

Thank you so much for this insight - I have shared it with my older children, who I'm sure thought my reasoning some of the time when I couldn't have my very young Grandchildren was that I didn't want to be part of their lives. When all the time, I wanted nothing more.

I had the same knee jerk reaction to a life of thyroxine...and I'm still researching... I've had my thyroid removed totally through 2 separate bouts of cancer, 2014 & 2015. It's taken so very long to regulate my medication, experimenting dosages, time of day, coffee, no coffee, you name it I've tried it. My instinct tells me I need to get my bloods done again, also somebody pointed out that my left eyelid is starting to droop - mad as it sounds this has always been an indication that my meds are out.

Thank you again, lonely_pioneer.

lonely_pioneer profile image
lonely_pioneer in reply todandiliontilt

Thank you for your insights. From everything I've learned in this eventful 3 years, I've learned to trust the indicators, even if they are a little neurotic. The truth is in the bloodwork, and more often than not, my instincts are correct.

humanbean profile image
humanbean

Does Hypothyroidism Change Who We Are?

I would say that the answer is Yes. Some people manage to recover and end up "normal for them", but some people don't. And for those people who do recover there are some for whom recovery is fragile and can't be relied on to last for very long.

1) If I threatened a healthy person with a knife their body is likely to get flooded with cortisol and adrenaline in response to this stressful situation. When the stressful situation ends the stress hormones recede and go away. Someone with lots of cortisol and adrenaline in their body associates those hormones with feeling stressed, anxious, and possibly depressed. So which comes first? The feelings or the hormones? I suspect it doesn't really matter - the body learns that having lots of adrenaline and cortisol in the body is associated with stress, anxiety and depression.

2) In someone who is running short of thyroid hormones the body tries to keep the sufferer alive and coping as well as possible by producing more stress hormones to substitute for the missing thyroid hormones. As a result situations in their lives that wouldn't normally produce much stress start to become stressful. Situations which are normally stressful become much more so, and the sufferer struggles to cope. Anxiety and depression becomes the norm.

3) In someone whose hypothyroidism is discovered and treated quickly the body will reduce its output of stress hormones as their thyroid treatment dose rises. Eventually, if all goes well, the balance of thyroid and stress hormones will end up approximately back to what it was before the sufferer became hypothyroid and they will feel well.

4) Hypothyroidism often progresses quite slowly. There are plenty of people on this forum who state that, with hindsight, they have been hypothyroid for decades, or since childhood. In this situation they have probably had higher than normal stress hormone levels for all that time. When they finally get treated the body doesn't shut off the tap producing the stress hormones very easily, and so the sufferer ends up being dosed with thyroid hormones while also producing higher than healthy levels of stress hormones. Such people can feel "hyper" and cannot easily tolerate the doses of thyroid hormones they need.

5) In people who have been over-producing stress hormones for many years there may come a point when the body throws in the towel and can't keep on producing sufficient stress hormones to keep them going. Cortisol and adrenaline levels reduce. With the correct treatment the adrenal glands (which produce cortisol and adrenaline) will recover - we aren't talking about Addison's Disease here (although that can occur too, in patients who collect autoimmune diseases, as some do). Patients call this situation "adrenal fatigue". Doctors call this a made-up disease and pour scorn on patients who try to treat it or get treatment for it. But the patient is now trying to keep going with insufficient thyroid hormones AND insufficient stress hormones. They may be diagnosed with ME or CFS or fibromyalgia or hypochondria, malingering, various mental health disorders.

Looking at this problem from another direction, suppose someone is NOT hypothyroid, but has some long-lasting trauma in their lives - for example, an abusive childhood or they suffer with an illness which causes them severe pain which is not treated or is inadequately treated. The body's response to stress of this type is to produce cortisol. If this stress goes on long-term it suppresses pituitary function and reduces the output of TSH, which then reduces the output of thyroid hormones. The thyroid may be perfectly healthy, but it just isn't getting the right signals, and so the patient is likely to feel hypothyroid.

Everything hormonal is connected. So, you asked if hypothyroidism changes who we are. I would say the question should be "Does hormonal dysfunction change who we are?" And I would say the answer is a big, fat YES.

For more info on the inter-connections between hormones, see the first post in this thread from another forum :

forums.phoenixrising.me/ind...

Marz profile image
Marz in reply tohumanbean

Thank you for the link. Will read it again 😊 HNY

humanbean profile image
humanbean in reply toMarz

Happy New Year to you too. :)

MissGrace profile image
MissGrace

I know it’s changed me. I have to think more about whether I have the energy to do what I just used to do spontaneously. I have to be fussy about: what and when I eat; what time I take my meds; when I can have a morning coffee; how cold it is outside etc etc etc. It’s also made me much more grumpy and impatient than I used to be and made me feel bloody ill at times to the point of collapsing and ending up in A&E with abnormal ECGs so they won’t let me out. It’s meant more visits to the GP and challenging him more. It’s meant taking more control and responsibility for my own recovery as my own GP is clueless. Yes, it’s a life-changer. But I always console myself with the fact that it could be worse, there are worse things.

StitchFairy profile image
StitchFairy in reply toMissGrace

Of course you are so right in saying 'it could be worse, there are worse things'. Perhaps the worst aspect of this disease though, is not the illness itself, (which has changed my life dramatically and made me feel that I'm not at all the person I used to be), but the fact that doctors simply refuse to 'get it'. And those who don't have the disease don't 'get it', and neither do the fortunate ones who do have it but are absolutely fine and lead perectly normal lives on the medication. It's a lonely path to tread for some of us.

MissGrace profile image
MissGrace in reply toStitchFairy

Perfectly put. One of the curses is looking relatively normal but feeling like c**p! Maybe if our heads fell off and had to be carried in a bag until we were properly treated we’d get what we need! xxx

thyr01d profile image
thyr01d in reply toStitchFairy

O Stitch Fairy I so like your reply, it's exactly what I have experienced and always I feel as if it's my fault because I don't explain properly - scorn and self-condemnation added into the mix!

MiniMum97 profile image
MiniMum97 in reply toMissGrace

Yes to all of this. It completely changes you and your life in so many ways. I feel a shadow of my former self and can’t ever see me getting back to that.

lonely_pioneer profile image
lonely_pioneer in reply toMiniMum97

I know the feeling, MiniMum97... I'm trying to treat my condition as an obstacle, though it does feel like a barrier at times. Stay strong!

RockyPath profile image
RockyPath

If you've seen My Big Fat Greek Wedding, you recall the father's obsession with Windex. I've become that way about everyone I see who has symptoms of hypothyroidism.

"Wait, wait! Don't take a pill for overactive bladder; treat the hypothyroidism! Don't take sleeping pills; treat the underlying hypometabolism with thyroid hormone!"

Thank you so much for sharing.

Lovecake profile image
Lovecake in reply toRockyPath

I’m like that too. I’m physically having to stop myself from saying things to people.

But then, if someone checking their vits and minerals and finding a low level, treating it and feeling better, means that I was right to mention it.

I will definitely not say too much from now on. And then (unless it’s close family)the person will have to sort themselves. I’ll just comment if I’m asked. 🙊

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