why it is that during hypothyroid treatment, new symptoms seem to crop up along the way? When I first started levo, along with the usual levels of joint pains and aches I’d had for a while, I developed the most excruciating hip and groin pain (had to use a walking stick)that lasted a couple of weeks and then went away completely and I’ve not had it again since. More recently, before increasing my dose to 87.5mcg, I had severe and sudden-onset elbow pain/tendonitis in both arms and weakness in my arms (with no obvious cause/injury) that made them feel like there was no power or strength in them. This has now also resolved completely. Before starting levo I never had any issues like these with hip/groin pain or elbow pain. Very strange. I understand that the levels are fluctuating and the body is balancing-out, but what is happening in the body to create these new, but transient issues?
I would like to ask…: why it is that during... - Thyroid UK
I would like to ask…
when we change dose, the level of thyroid hormones is changing ~ both as a result of dose change itself , and because your thyroid and your deiodinase's will then respond to this change ... ie. the thyroid could change the amount of T4 / T3 it puts out (if it is putting any out) , and the deiodinase's may change how efficiently T4 is converted to T3 ) .
which means your cells ( nearly all of them, all over your body) will be getting different amounts of thyroid hormone than they have had for a while previously ..... more (or less) thyroid hormone action in cells then leads to different functioning in what ever part of your body those cells are in.
hence we find all sorts of changes in symptoms in various body parts when we change dose.... until everything's settled down again , dose has been stable for several wks /months , and body has got used to the new status quo.
Thank you ,Tatty. So…more thyroid hormone in the cells could actually be the cause of pain? Or is it less hormone that causes the pain? Sorry, it takes me a while to understand stuff. Hence, daft questions.
more thyroid hormone can sometimes cause us functional problems (and pain in various body parts) ,
and,
less thyroid hormone can also cause functional problems and pain.
eg . if you take it to extremes ~ hyperthyroidism is known to cause muscle weakness in some specific muscle groups . eg in the large leg muscles closest to the torso leading to the classic hyperthyroid sign of suddenly finding it impossible to getting up from the floor.
and presumably anything that is happening differently in our muscles can cause us pain.
i see adding levo as like a car that's only been able to potter around at 5 mph on flat roads for a few yrs due to low quality fuel / insufficient fuel... stick some nitroglycerin in it's fuel tank and it'll shoot off at 75mph up a potholed road , but it's springs and shock absorbers will no doubt complain quite loudly, at least initially , cos they've seized up from lack of movement on a flat road , and need to get freed up .
Ahhh, I love that car analogy! That makes it really easy to understand. Thank you. Just thinking - I’ve actually got muscle weakness in my thighs and have had it since before treatment where and I have found it/find it hard to climb upstairs and get up off the floor before so can that be related to hypo as well as classic hyper sign?
i don't have personal experience of that one , but i would think it's one of those signs that is 'similar but different' ... it's probably very hard to tell the difference unless you've ever had it from being properly hyper and then feel a similar but slightly different form of weakness when hypo .
Yes, I see what you mean. At the moment it feels a bit like trying to walk up the stairs with sandbags tied to my legs!
This is how it feels when b12 is low for me.
My last b12 was pretty good. It surprised me because I thought it would have been low. I’ll test it again I think. Thanks
This is what low iron and/or ferritin feels like for me.
Thanks, HB. Always good to know what others find/experience. I think it’s thyroxine that’s my problem because every time i increase, after a few weeks when the levels go up and stabilise the issues resolve. That said I will test all my ferritin, folic, iron etc later on in the year to see what they’re all up to.
That turned out to be low iron for me.
Hashis/hypo is nuts! I’ve never known anything like it!
I was getting terrible back pain before diagnosis, thought I'd had a slipped disc but didn't. That bas never returned since originally starting levothyroxine.
And was having elbow pain (along with a ood other symptoms) before finally getting an increase recently.
I’ve had back pain too. Weird isn’t it. It gets better then returns, but the hip pain and elbow pains were new, never ever had them before. I seem to have been on a roundabout of recurring symptoms and pains with these odd one-off totally new and out of the blue symptoms chucked in. It just made me wonder why it happens, with new stuff cropping up after starting the treatment. My husband thinks it’s maybe because all the areas that have been starved of t4 are starting to wake up!
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A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
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This makes a lot of sense. I’ve resigned myself to the fact that I think working up slowly through the hormone increases and giving things time to settle and repair is going to take me a couple of years, at least!
This sounds exactly like me at the moment 😢
Mum isn't on Levo but the posts in reply to your post are really interesting.
Mum had unbearable neck pain and foot pain so bad seh coldn't walk.
She is back exercising again with just some soreness in the foot. They increased the cortisol acertate in hospital and it made the foot pain worse, we think.
With your last lot of results I'd say you are still on the way back up and like Tatty puts so well different things start to come back to life which gives some weird aches and pains and might also highlight other deficiencies which need supplementing
Free T4 (fT4) 15.5 pmol/L (12 - 22) 35.0%
Free T3 (fT3) 3.4 pmol/L (3.1 - 6.8) 8.1%
T4:T3 Ratio 4.559
Expect more weirdness 🤗
Blimey…when you put it like that…those % are not great are they! That really shows it. I think it’ll be a slow climb back up again won’t it. I’ve been taking 87.5mcg for the past 3 weeks as a stepping stone to the full increase of 100mcg, maybe I need to start introducing the 100mcg now, and then test again six weeks from now. My last b12, folate and vit d were pretty good. Ferritin was low and I’m working on that. My periods have been heavy but that settles when the t4 is higher too. I think the aches must be thyroxine related as they seem to settle or resolve completely when the dose is increased.
Slow is a good approach, you'll likely start to feel the drop off next week so you'll know to up things again, are you taking magnesium good for relaxing and selenium is good for conversion.
Like Tatty says as your body goes up a gear it isn't always a smooth transition as you still don't have enough hormone to go around so some places are missing out and others are jumping into life... well creaking at least 🙃
Thank you, TiggerMe. I’m not on magnesium or selenium. I’ll have to get some. I’m worrying about going up to the full 100mcg dose increase daily because the last increase dropped my tsh (of 1.96) to below the range. Luckily, the reporting GP said “no action. only just below range” then the tsh started to slowly rise again and then symptoms eventually came back and coincidently the tsh was tested and came back at 1.96 again and my gp said she was happy to try another increase to 100mcg.
Common for people to be low in magnesium and it helps with absorption of Vit D and aids sleep so its a winner, comes in various types, I tend to go for a complex... healthline.com/nutrition/ma...
Selenium no more than 100mcg daily, beneficial but not to be over done
As your dose is still settling in it's not unusual for your TSH to climb again over time so regular testing for the first year is a good idea, I think this is often why so many are left on an insufficient dose as they too quickly swap you to annual testing
It would seem that your TSH is quite a good marker when for many of us it is misleading
Thanks for the info, TiggerMe. That’s great. You’re right about swapping too quickly to annual testing - they tried to put me on annual testing right after starting on the 50mcg dose!
😲
Us jolly Hypo's also often suffer with an imbalance in copper / zinc ratio so if you are troubled with mouth ulcers or slow wound repair it would suggest low zinc which I think is the more common swing
I found getting on the right dose and correcting the main players folate, ferritin, B12 and Vit D is only 2/3rd's the issue and then rebalancing all the other things that have suffered over the go slow years
I’ve got a mouth ulcer at the moment on the inside of my cheek!
Time to treat yourself to oysters 🤮 or as I prefer a bit of zinc picolinate has sorted out my often sore mouth
Oysters….arrrggghhh….runs away screaming…😂 🤢
🤮totally agree ….exactly that! Pass me the zinc!
I would stick it out on the present dose otherwise you are not giving the body the chance to stabilise on your present dose. I wish I had understood the importance of graded increases. An endo who never saw me, just instructed my GP to ‘titrate’ the levo. I got a 25 mcg increase and it made me very ill and it’s made me very apprehensive about increases. I have been stuck on 100 mcg for a long time. Present increase of 6.25 mcgs alternating days and have struggled with that!
Thanks for sharing your experience. I’m going to sleep on it.
Don't think you can absorb it that way 🤣🤗
🤣🤣🤣🤣
“Expect more weirdness” hehe! 😂Oh that did make me chuckle. It becomes a way of life doesn’t it…all the weird stuff. 🤣
took adding T3 to a long used 100 mcg levo dose to loosen up and reduce hip pain/ stiffness almost immediately…weird!
Good to know. Thanks.T3 is something I might need to look at it the future, but I really need to try and get my t4 levels up to see if that helps first. 35% through range is pretty dire at the moment. Every time I’ve had an increase the general aches and pains have got better. The t4 and t3 go up but then start dropping as time goes on. I just need to crack-on, keep moving forward and get on the right dose (eventually) and then see how it goes. The horrendous hip pain that started when i first went on levo resolved completely after a few weeks and hasn’t returned, thankfully!
Thanks for posting this. I'm in same situation. It was really helpful to understand what's happening, and read everyone's advice. Hope you're feeling well soon.
Has anyone gone back to levo after years on NDT?
Should I be worried? 
Has anyone got low back pain with tender points in buttocks? 
Muscle pain...not sure why.
