Seasonal improvements when Hypothyroid?

[SpringFairy]

I have severe M.E + co-morbidities, but suspected Hypothyroidism/Hashi's. Awaiting appointment.

I have far more energy & mental cognition in the Spring + Summer (as long as it's generally warm & dry) before crashing out back into bed with very low energy levels the rest of the year, until Spring again.

I've been told that as your TSH naturally drops in summer, this may explain why. But to this extent?! 🤔

Is there anyone else with hypothyroidism, esp Hashi's, who has experienced this bizarre disparity?

Thank you 🙂

[HowNowWhatNow]

This rings a lot of bells

[Alanna012]

Increased daylight and increased levels of Vitamin D is what is happening in spring and summer.

There are articles linking reduced daylight in winter with fatigue conditions like ME and fibromyalgia and hypothyroidism and the use of daylight lamps and red light at night are often suggested as helpful.

Some sort of link with light waves and the eyes and the thyroid receptor (?) That lies behind the eyes as well. Don't quote me on that or ask me to explain it but there's some sort of mechanism there. I graze stuff as my attention is really poor at the mo.

I know your bog standard artificial light is said to be a hormone disrupter, particularly of melatonin and personally the longer artificial lights are on, the more wound up I feel, it's why I cling onto daylight in Autumn until it just gets too dark to not put the lights on. I hate artificial light. If I didn't live with children I would live by candlelight in the evenings. I experimented 2 days without using any artificial light and felt so much felt calmer. Darkness is meant to be a signal for rest.

Daylight is a signal for energy and I have read I think by dr Lowe as well as others that if you can, you ought to get outside first thing in the morning after sun has risen , and if you miss that window, afternoon when sun is highest.

If you think about it life on earth depends on sunlight and its' rhythms and we're so off with it now. Sunlight signals our hormones. Both by its appearance and disappearance.

I suppose ideally we would all sod off for 6 months somewhere warm and sunny in winter then come back in the spring.

[SpringFairy in reply to Alanna012]

Thank you. That all makes complete sense to me. Just didn't expect it to be so vastly different energy wise.

I also detest artificial light!

I keep reading about the getting out in sunlight in the morning & hopefully I'll be able to do that in future. It's just impossible with the M.E. at the moment.

Thanks for your input

[Alanna012 in reply to SpringFairy]

I completely understand, I rarely manage it either, if you have no energy virtually any physical output is difficult if not near-nigh impossible.

[klr31]

I used to feel slightly better in warmer weather before I was diagnosed with Hashimoto's, just M.E. It took a few years to become optimally medicated but I definitely became more stable once I was. It wasn't the whole answer for my M.E unfortunately.

Get your results once you have had blood tests and learn about the thyroid. Symptoms are definitely similar to M.E.

Good luck.

Karen

[SpringFairy in reply to klr31]

Thank you Karen. That's what I'm hoping for too.

Sorry to hear it hasn't helped so much with the whole M.E. picture

Best wishes x

[klr31 in reply to SpringFairy]

I'm very grateful for the improvement it has brought even though I'm not completely better. I was so ill. Hope it helps. Best wishes,

Karen

[waveylines]

I was originally diagnosed with CFS/ME. Two years later diagnosed with hypothyroidism as a consequence of ME.......hmmmmm not ure I believe that one! I personally believe I was mis diagnosed in the first place.

I definately feel better in warmer weather. This is a recognised feature of hypothyroidism. I usually have to slightly reduce my thyroid meds when its hot weather & increase it when its very cold.

[SpringFairy in reply to waveylines]

Mm, yes, sounds like a misdiagnosis to me too. But good, as no-one recovers from M.E. Well, figures are at 5%

Very interesting to hear you have to alter your meds with temperature variations! Thanks for sharing.

[waveylines in reply to SpringFairy]

According to the nhs specialist people do recover from ME & I'm living proof of that. I did point out to him that hypothyroidism should of excluded me from the diagnosis. His answer was but you didn't have it when I diagnosed u with ME. What a load of rot!! Of course I did he just didn't diagnose me! Because of him I have to disclose ME on any health or travel insurance as its on my medical record. So so so wrong! Lol....

[SpringFairy in reply to waveylines]

So annoying you have to disclose of the original M.E. on your applications. You are totally right that you should have been excluded from diagnosis.

It's great you have recovered anyway & it sounds like the other people I know misdiagnosed along the way and eventually correctly diagnosed, treated & recovered. So they didn't recover from 'M.E'. at all (& probably never had it). I know which camp I'm hoping to be in, heh heh.

I wouldn't trust many HCP's in the NHS with their M.E. information anyway. So many either don't believe in it, or else believe it's psychological sadly.

[waveylines in reply to SpringFairy]

Indeed & thats so wrong of them. They haven't really got to the bottom of the cause though if I'm right there has been a connection made to mitrochondria dysfunction? Its a horrid condition and I do wish they'd move beyond psychologistical. Two people I know who have this condition have very strong mental outlooks......

[tattybogle]

One of the first things that took me to the GP was this winter/ summer difference in how i functioned (or didn't .... from late October to early February)... eventually this ,and other symptoms/ bloods , led to my hypo diagnosis.

I'm the other way round to wavylines~

I got diagnosed with 'sub clinical autoimmune hypothyroidism' first, and then '?cfs/me' a couple of years afterwards , when the levo didn't get me back to feeling 100%, ~

They said my fluctuating symptoms couldn't possibly be anything to do with my thyroid, which was now 'treated' as well as it could be (with Levo .. they conveniently forgot to mention there may be other options to Levo ). These 'fluctuating symptoms' only started when my thyroid went wrong... i certainly didn't have them before i had a thyroid problem .. funny that .. must just be a curious co-incidence eh?.

I was perfectly ok before the thyroid disease ,....very fit, very active ,loads of stamina , and there was no question mark about the validity of the thyroid diagnosis , (it was following a birth, i had family history of autoimmune thyroid disease, i had extremely high TPOab >3000 [0-50], my TSH was 5.7 / 6.8 and rising , my TotalT4 was below 30% and falling lower) I stayed feeling about 75% better on levo for about a year, (once i had got up to 150mcg ), but then after about a year on 150mcg, my post exercise 'crash' (lasting a day or two where i couldn't really work) , became more of a problem again .. and there was no room to increase my dose of levo anymore ... (i tried increasing it anyway for a few weeks just to see for myself , but this time a dose increase didn't help whereas it had improved things for a few months each time previously when i'd increased from 50 to to 100 then 150mcg )

.... so that just left "your thyroid is fixed , if you think it's M.E.... i'll refer you, but the waiting list is massive and to be honest i don't think they are the right place for you"... waited 2 and a half years .. he was right .. not much use really ( that 's being polite . don't get me started )

I've never been very convinced i have cfs/me... i find it too suspicious that i just happened to get both autoimmune hypo and M.E at the same time . The CFS/ME service did accept me for a long programme of 'treatment' ..... my GP notes just say 'fatigue' or 'chronic fatigue' all over them .. i don't think it actually says CFS/ME as 'a diagnosis' anywhere.

Throughout all this .. i have never really been able to totally get rid of this issue of being able to function mentally/ physically much better from early Feb onwards ,and much worse from late Oct onwards. have tried light boxes and all sorts over the years , direct sunshine in the morning when you can get it is obviously really helpful, but at the end of the day , i now just accept that i hibernate in winter and i do my best to enjoy it ... bears don't seem to mind it, why should i ? ..... i just learned to live/ work round it and not let it bother me .. i trust i will always feel better in february, so depression has no power over me anymore ...... i treat November to Feb as the equivalent to 'night time'...ie , not a lot of stuff gets done , but i don't expect it to , so i don't get upset about anymore, .....spring is like 'morning' , i feel pretty good so i do stuff then .

[SpringFairy]

Thank you so much tatty for explaining your story. Very interesting about how differently you feel too. So sorry you're here.

My GP has never taken my increasing symptoms seriously so I probably never emphasised the differences. It's got worse over the years unfortunately & can't be ignored.

Gah, sounds like another medical misdiagnosis Yes, the M.E. 'treatment' is ridiculous isn't it? I needed a wheelchair once I'd finished the Graded Exercise & CBT.

Thank you for your last paragraph too. Nice positive reframing. As the years go by, there isn't much else you can do but embrace the situation is there. I loooove Spring though, a reminder I do still have a little energy!

Enjoy this nice time of year tatty x

[BiscuitBaby in reply to SpringFairy]

Hi SpringFairy

I also do better in the summer. Life is just generally easier. I find in the winter it's a battle to keep warm!! I decided ti go private with mu thyroid treatment after my last appointment with a gp resulted in a referral to neurology for functional neurological disorder!! I certainly didn't want that all over my notes! The other option was cfs! I was prescribed t3 by private endocrinologist and dare I say it I feel close to normal! I am hedging my bets a bit at the moment as I'm still thinking my body might settle into the dose and I'll deteriorate again. But it's coming up to summer so I know I will feel better.

[tattybogle in reply to SpringFairy]

i am doing just mowed my lawn..... and the back alley....smelled some lavendar , and some thyme.... found some frogs...

[helvella Administrator Thyroid UK in reply to tattybogle]

found some frogs...

Endocrinologists in your garden?

(They certainly are not princes.)

[tattybogle in reply to helvella]

bloody well hope not ....

[SpringFairy]

That's fabulous news Biscuit! Well, not the FNU or CFS diagnoses obviously! 😡 Def fight those off.

I too struggle to keep warm & wish I could somehow live in the Med. Not possible.

Very interesting about your T3. I do hope you find these improvements last. Fingers crossed for you! 🤞

[BlueKeith]

Ive had the same seasonal symptoms for over 30 years . I've been going away to the canaries every February and for that week and a few weeks after my symptoms eased and then the spring was here so symptoms stayed at bay. 18 month ago I got diagnosed with hypothyroidism and now take 75 mcg of levothyroxine which has made me feel almost cured apart from the odd spell of brain fog. I now take a vitamin d pill every other day in winter and seem to be doing ok. Hope you find your cure.