I wonder if my thyroid was going wrong for deca... - Thyroid UK

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I wonder if my thyroid was going wrong for decades before I became hyperthyroid?

Decant profile image
18 Replies

I went hyperthyroid about 19 years ago. My explanation for it has been that it came soon after the birth of my beautiful son (amazing but stressful of course) and then the sudden death of my father a year or so later. I was just rambling on an ADHD forum (DX in 2022 now titrating) and the question occurred: could my thyroid have been going out of whack for many years before, or does the thyroid just decide one day to go wrong?

I've always had generalized anxiety and depression, seeing a psychoanalyst for years (many years before the supposed hyperthyroid triggers). After RAI I was signed off first for the thyroid then a year or two later for depression. Work has been pants since then.

I wonder if the ADHD was masked by early undiagnosed stage of my thyroid going hyper. Maybe it doesn't work like that: I was holding down a hard job, living a pretty normal life, getting married, etc.

I am reaching and rambling here really.

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Decant profile image
Decant
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18 Replies

Decant,

In the depths of my thyroid despair I thought I had ADHD. Inability to focus on what I needed to, hyperfocus on what interested me (ask me a question about cottage gardens...! 🤪), Impulse spending, dreadful memory, executive dysfunction, purchasing multiples on one thing simply because I couldn't see it in the cupboard (it was at the back, therefore didn't exist!) To name a few!

Since getting near optimal those symptoms have shrunk enormously.

I'm not suggesting you don't have ADHD but the two conditions are linked I will never be convinced otherwise.

You might find, like me, getting your thyroid optimal helps with your ADHD.

Decant profile image
Decant in reply to

I have niggling doubts about the DX. It was done by a reputable company (thinking of that awful Panorma hatchet job) who pout significant barriers on my way to treatment (heart MRI, improving but microbiome and thyroid in a better place). But it as a very late (age 56) DX. I also made the *honest* mistake of answering the parental/childhood questionnaire myself. This will always niggle at me.

At root of this is, in addition to the very real thyroid issue, is 1. Looking for an easy answer to every woe (pop a pill) and 2. Disliking my job as a programmer. I pop a pill for thyroid, a pill for ADHD and most recently started TRT (Testosterone Replacement Therapy). Mostly at my own expense. Regardless of of ADHD is real for me, I do need to strengthen my willpower as it has weakened over recent years.

I've rarely met my potential for long, and that's frustrating, but maybe that's just life.

Thank you for your response and I can see myself and my ADHD symptoms in what you say.

My thyroid levels are pretty decent but room for some improvement.

Thanks x

DippyDame profile image
DippyDame in reply to Decant

The thyroid hormone levels in the serum are obviously important for most people but for a small cohort they do not always translate into an adequate cellular level of T3 because a form of thyroid hormone resistance exists preventing this.

The brain needs a huge amount of T3 and cellular deficiency causes symptoms!

I've looked back at my health issues as far as I can recall and they started before I even went to school...most are textbook examples of a form of hypothyroidism.

In my late 50's and barely able to function I requested a thyroid test.....hypothyroidism.

Things just got worse....It's all in my profile.

If they are stuck for a diagnosis they often resort to syndromes....chronic fatigue syndrome, fibromyalgia and the like.

It's a complicated road that medics seem reluctant to tread but one where some scientists have gone

This might give you the gist

medicalnewstoday.com/articl...

in reply to Decant

Feeling like you're not meeting your potential is a really difficult thing to sit with, I think. I struggle with it too.

Willpower is what has carried you to better health so I'd not beat yourself up over that one!

Are your vitamins good too? How long have you been on a stable dose of thyroid hormones?

Decant profile image
Decant in reply to

Yes it is, though I also think it's good to learn a degree of acceptance as I get older, I'm not 21 anymore!

My vitamins last time (May) were as below. I've restarted B complex with additional B12 in addition to magnesium, selenium.

Folate - Serum 21.6 nmol/L (8.83 - 60.8) 24.6%Vitamin B12 50 pmol/L (37.5 - 188) 8.3%

Vitamin D 130 nmol/L (50 - 250) 40.0%

pennyannie profile image
pennyannie

Hey there again :

I'm sure many of us can sit and reflect on the past looking for reasons as to why we are where we are now - and with thyroid issues I'm sure many of us have gone undiagnosed for years only to end up with a bigger wake up call years later.

Living without a thyroid can be a bit like switching from an automatic to a manual gear box and probably feeling stuck in second gear most of the time.

But you can reclaim 3rd gear, possible 4th with optimal vitamins and minerals, and the addition of either some T3 - Liothyronine to your T4 or switching to the fullest of all thyroid hormone replacements - Natural Desiccated Thyroid.

Looking back I read you have tried these options before - and wonder if you ever found your optimal dose ?

It is imperative that you are not dosed on a TSH reading but on your Free T3 and Free T4 readings and the heart and brain take the lions share of T3 - is there is enough in the tank.

Decant profile image
Decant

Thanks. As you say I've tried all the options, but I don't think I ever fully tuned the engine with supplements. Previously I've got well enough to live well and then ignored things. I hope this time will be different and I'll keep monitoring and tweaking! Looking at my latest ft4 I think there's room for improving that, but I've made enough changes recently (TRT particularly but also boosted B complex, B12, selenium, magnesium) that I'll wait for next bloods later in July to make any further changes. I'm also titrating on ADHD meds and even though there's no clear linkage it's still a big change.

Subjectively I did better on T4+T3 and even better on NDT. But it's blurry memory now. I now keep a health journal.

My GP will want a chat when their bloods show a very low TSH again. That will be fun. I'm not going off T3 again (unless to switch to NDT).

Thanks again x

pennyannie profile image
pennyannie in reply to Decant

OK then - just to say - if you want to reply to somebody in particular you need to use their reply button box alongside their comments so they get notified there is a message :

If you want to read anyone else's profile just press the Icon alongside their name and go to their Profile page where you can read everything they have ever written on this open forum.

If you want to find your previous posts you can press the " More " icon top right on this page and read everything you have ever written and all your previous replies.

Decant profile image
Decant in reply to pennyannie

Whoops! I've been on the site for ages and just pressed the wrong button. Sorry for causing confusion!

pennyannie profile image
pennyannie in reply to Decant

No worries - the fall out is all yours really - as you might feel let down that no one answered you :

I do sometimes wonder why I don't get a reply and if I see the post continue again - pop back to read what I wrote in case I didn't make sense - or had upset someone - and / or ' bingo ' - the last reason is generally the one - it's a common oversight -

We can all read everything you write but we don't necessarily come back as the forum gets very busy :

At least you know now !!

sweetczz profile image
sweetczz in reply to Decant

Berberine has brought my TSH from non existent to normal, and has helped to level my T3 T4 free etc. Problem is, it's holistic, and I'm not sure how much Berberine and How often I should be using it. Supplements aren't FDA approved so each brand is different and they are not cheap. I think I started out on a quality brand that helped but then I wasn't sure if i should take it twice a day. The brand got expensive. My thyroid levels are all over the place again. Either it's because I cut the Berberine dose in half or because the brand isn't as good. It's best to have HOLISTIC Health care but who can afford it? They really do help. My regular Endo isn't Holistic but she is Asian and she is aware some supplements do help. I wish she would study herbs etc. Dose of Methimazole and supplements are hit or miss rollercoaster rides with standard doctors.

To actually answer your question though: could my thyroid have been going out of whack for many years before, or does the thyroid just decide one day to go wrong?

(I can only answer with my experience I don't know what the science says but at the moment a lot of thyroid research it is nonsense anyway.)

I think my thyroid just slowed down over decades. I had a lot of trauma growing up and a lot of other environmental factors that contributed to the autoimmunity aspect but looking back I can see evidence of my thyroid failing for years and years. Officially diagnosed at 34 but I can see symptoms crop up since childhood from around age 8.

I suspect thyroids can and do just stop working after physical trauma i.e. being kicked in the neck, or whiplash or something. But I don't think any body part just stops working one day.

I'm not biology minded but I can't think of a single other organ that can simply stop without cause.

Decant profile image
Decant in reply to

Yes, that's what I feel. I've always allowed my job's difficulties make me stressed, I've rarely been able to accept I'm good enough and just float through life, airways wanting to do my very busy, be brilliant (ha), etc. This is probably "impostor syndrome" - an ADHD trait. That stuff imposed stress has not helped my body I'm sure!

in reply to Decant

This world isn't built for the neurodiverse.

I had a terrible relationship with alcohol as a teen/young adult. As a result I would go out on a weekend to pubs and clubs and binge drink until I blacked out. On reflection what I was probably doing (aside from managing some massive grief) was trying to cope with being in such an overstimulating environment. I don't cope well in those environments. But it's what everyone did so I had to because that's just what you do, right?

I have a good job (fully remote with little management) and as I understand ADHD more I can see that I need quieter surroundings and that living in busy towns and cities just isn't for me. Not if I want to keep achieving in my job/family life.

That was a rather long winded and self indulgent way of saying 'maybe consider your environment'! Maybe there are accommodations you could make to help things flow a bit more?

Decant profile image
Decant in reply to

Thanks for sharing. I live in a reasonably quiet town very near the lovely Epping Forest to escape into. Growing up we had a quiet family and country walks. I had my mad drinking years, but now I don't like too much noise, I find it annoying (like in the gym this morning). If finally accepted that at 56 I'm not going to had an amazing career and that I need to do a good job, game the money and pay into my pension and mortgage. I think my next job needs to be quieter with fewer prima donnas. So goodbye to the City and Canary Wharf and the very generous packages. My health and sanity needs to come first.

in reply to Decant

That's funny - I was born in Romford & grew up in South Woodford for some years. My family all hail from that area. :D

I live a few hours away now in a little village. Lovely and peaceful! We're looking to move to a town for the children but I'm hesitant.

Loads of fully remote developer jobs around that pay decent money - probably not London money though! (Husband is a developer and currently recruiting.)

Decant profile image
Decant in reply to

Very close! Perhaps I shouldn't say but I'm in North Chingford. A nice spot though getting more lively by the year. Tied here for a few more years. We'd like to move to the coast, maybe Devon in due course.

If your husband is looking for experienced Java developers then maybe I can help! TBH I think I need company of colleagues at least some of the time - I like collaborating and bouncing ideas of people. I'm now in the minority as a programmer though.

in reply to Decant

Gosh. Very close! Lovely area. Bit too busy for me these days but lovely nonetheless!

Devon and Cornwall are lovely; I keep threatening to home school the kids and move us into a campervan and just live at the beach. :D

Lord - A sociable developer... a rare thing! I know what you mean though, he's just had a developer quit after 4 weeks realising that fully remote isn't for him! The team have a lot of zoom calls and slack contact but it's not as organic as walking over to someone's desk to ask a question.

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