Thyroid medication journey. What's yours?

[Kit_Monster]

Having had a rubbish few weeks with my thyroid meds, I was just wondering what others journey's were like on finding out what type and dose suited you? How long did it take? How did you deal with the bad days? And the setbacks?

[greygoose]

It's all on my profile.

[Kit_Monster in reply to greygoose]

Ho greygoose. I've just been reading your story. Wow. Complete failure by the medical profession! And so glad you have managed to find what works for you and your sweet spot re dose

Gives me hope that after a lot of experimentation I will find mine.

I got so fed up of the constant back spasms at random times of the day and night, that I gave my thyroid meds a miss for 3 days. Spasm free!

[grumpyold]

It's all on my profile too. 😩

[Kit_Monster in reply to grumpyold]

Hi grumpyold. Sorry you had to go through all of that. Interested to read that the addition of T3 helped with the back pain thqt developed....

[grumpyold in reply to Kit_Monster]

The back problem predated my thyroid diagnosis, but since I have added some T3 (currently 12.5 mcg a day and 100mcg T4) it seems to have helped with all my aches and pains, not just my spine.👍

[Snooperkitty21]

I’m still following your journey as my story is similar with similar lab results.

I’m currently up to 125 mcg of levo (synthroid) and not feeling any better. Still don’t know if my issue is thyroid and I read you’d tired hormones and that might be my next step. On bad days (which is every day!), I just try to take each day in pieces and set small goals during the day.

[Kit_Monster in reply to Snooperkitty21]

Hi Snooperkitty21, thanks for your post. I'm trying to understand the endocrine system and the thyroid and what's happening with mine.

Sorry to hear you are feeling rubbish still.

Loads of great support and help on this forum 😁 Especially about optimising vitamins and minerals to help as much as possible.

Really interested to hear about your journey. Do message me privately and we can have a natter.

I really must find time to add to my Bio !

[DippyDame]

Long story...detailed in my profile.

[Kit_Monster in reply to DippyDame]

Hi DippyDame, you really have tenacity, stamina and resilience in sorting things out. Seriously impressed.

How did you deal with all the research you did when you had brain fog? I have the memory retention of a gold fish in the evenings (the only free time I have to read).

[DippyDame]

To be blunt....sheer bloody-mindedness!

To survive I just had to do it!

I wasn't working so just did what I could when I could.

My husband has been a huge support.

Oh....and lists and highlighter pens!!!

And chocolate.

i've been very lucky in so many ways.....it could have turned out very differently.

Finding this forum finally turned things round.

I just wish the medical profession would turn round and realise they are wrongly treating thyroid patients, particularly those who do not respond to levothyroxine.

We're all here to help....just ask.

[Kit_Monster in reply to DippyDame]

Made me chuckle when I read lists, highlighters and chocolate. Right there with you! I'm a sticky notes fan and project book fan too 😂

I'm keeping going, though not at the pace I used to when younger. It's more tenacious tortoise now rather than hurrying hare.

[DippyDame in reply to Kit_Monster]

Tenacious tortoise....thats good!

I told one of my sons the other day that I was really as tough as old boots....but with frayed laces!

Chuckling is good!!

[Beau55]

Hi Kit_Monster,

I’m sorry to hear you are struggling getting on the right dose. This thyroid business is really all consuming and some days can feel like utter hell. You are definitely not alone and this will get better! What type of negative symptoms are you having? Have you checked your adrenals etc? Sorry if this has already been asked.

I am currently trying to increase my NDT and feeling particularly crappy and filled with self doubt. I think patience really is key with this (although it’s the hardest thing to have when suffering!).

How far into starting/changing your meds are you? I think you will notice gradual improvements and then one day you will wake up and not think about your thyroid anymore! What a dream.

I can’t give much help with timings etc but just wanted you to know you aren’t alone with struggling starting medication ☺️ X

[TSH110 in reply to Beau55]

this guide worked for me, if you don’t know it have a look it’s very helpful

tpauk.com/main/article/trea...

[Kit_Monster in reply to Beau55]

Hi SarahElizaDavies. It does seem to be a roller coaster ride and one that I hadn't expected.

How are you getting on with your dose increase? What symptoms have you been getting? Are they settling down?

Interesting that you too are struggling with increasing NDT too.

I've been struggling with it on and off from the start. Approx 3 months. Various symptoms of nausea, dizziness and vertigo during the day and acute back spasms and pain (the kind that make you collapse on the floor) in the evening/at night. All approx 4 hours after taking meds and lasting about 6 to 8 hours. Adrenals checked out okay prior to taking NDT. Vitamin and mineral levels all acceptable for thyroid (and still improving)

I'd already done a TSH, T3 and T4 test after 6 weeks and found I was under medicated. So I started to increase the dose really slowly. The symptoms worsened.

Worked out through a process of elimination that the evening dose of NDT was setting my back spasms off during the night. So I stopped it. Then I started getting all the symptoms at once during the day and into the night. I slept sat upright as I couldn't get up if I led down. After 3 days of that and I'd had enough, so just stopped taking anything. 24 hours later, all spasms gone.

Not yet sure what to do next and whether to dip a toe back into the NDT waters again or not.

[TSH110]

A horror story! 9 mths under endo to get TSH between 0.2 and 0.5 but still felt terrible, (125/120 mcg Levothyroxine alternating) two years hell on Levothyroxine. Became suicidal, all days were bad days I felt like a worthless thing with no personality, I lost my job which I had excelled at for decades because I was rendered completely useless. Decision to self medicate on NDT in sheer desperation. Immediate and dramatic improvements until I felt well again (1.25 grains daily) took 1- 2 months to feel properly recovered. Retrained in new career got job in it and have enjoyed it ever since . 7 years of feeling pretty good on NDT.

A real rocky road. And that was just getting optimised! Getting a diagnosis was another journey in hell like climbing Everest with no Sherpa , oxygen or climbing gear so I really had a rough time with it. It’s a miracle I recovered as well as I have with NDT.

[Kit_Monster in reply to TSH110]

Hi TSH110. ☹️ and 😱 . That sounds awful. Just awful. Sending hugs. You shouldn't have had to go through that. Totally failed by medical profession.

So glad you've recovered to where you're feeling better. Really lovely to hear there is light at the end of the tunnel 💞

[TSH110 in reply to Kit_Monster]

It had its interesting side - to go there and come back again was insightful… amongst other things. I find the way it disturbed me very fascinating on an intellectual level , you can’t underestimate the power of thyroid hormones after going through that and it has made me more compassionate and sympathetic to the suffering of others. I see each day as a bonus (I was lucky not to croak) and try and make the most of it - much easier since the NDT completely stopped the awful depression I had suffered from for many decades. It’s odd to feel better than I did for all that time and after going through all that. Also we are lucky to live in modern times where it’s no longer a death sentence. I long for a time when we can choose our preferred medication and this patronising narrow minded way of treating thyroid patients is abandoned for a common sense, grown up approach to our treatment, which could easily be self administered, if my experience is anything to go on. It seems a long time in coming. I believe research like that of diogenes et al will eventually scupper the present endocrinology clique of Luddite’s keeping us ill, but it may take some time to prevail, I may not see it happen but it will be great when it does.