Can someone please advise if the leg pain and exhaustion I am feeling can be down to the thyroid meds - have had X-rays and physio nothing seems to have helped- today is particularly bad, now in both legs. Does anyone else experience this.
Leg pain : Can someone please advise if the leg... - Thyroid UK
Leg pain
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dandiliontilt
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Thank you. Do you use something else instead.
I have had painful legs for years, I can now not remember when they didn’t bother me. I do suspect it’s linked to long term under medication as I had a good few years of getting steadily worse when ndt was originally replaced with levo. I now take levo + ndt but still have persistent pain.
Buddy195Administrator
I had ongoing leg pains and saw a physio for this. When my thyroid medication was optimal and folate and B12 were high in the range (after testing I started supplementing with Thorne Basic B) the pains disappeared.
I’ve also found that my overall leg circulation has improved by taking turmeric daily (I was starting to be troubled by cold feet and throbbing leg veins).
Very best wishes to you.
SlowDragonAdministrator
vit D3 53.0nmol/L
Ferritin 37ug/L (10.0 -300.0
Vit B12. 169ng/L. (180.0 - 1000.0)
Folate. 3.4ug/L (>4.0)
Your vitamin D was far too low
How much vitamin D were you taking
(I know you stopped taking all supplements recently)
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
This is what I was taking and will start taking again today.
I have the doctor ringing today so I’ll ask for a vitamin blood test.
Cytoplan D3 +K2 100ug each
Cytoplan sub-lingual B12 1mg
Boswellia 400mg (providing 260mg boswellic acids whatever that means)
I’m sensing it’s messy, I don’t know what I’m doing really, I just need the straight forward 4 vitamins don’t I?
Kindest regards
So vitamin D is 4000iu daily which may be enough, or may be too much
Retest twice year
Vitamin D you swallow as tablets or gels should be minimum 4 hours away from levothyroxine
Low folate
Likely to need vitamin B complex that contains folate (not folic acid) to improve low folate and keep all B vitamins in balance …as well as sublingual B12.
But remember to stop any B complex a week before all blood tests as contains biotin
Low ferritin
You need to get GP/endocrinologist to do full iron panel test for anaemia or test yourself privately
Meanwhile increasing iron rich foods in diet
Thank you so very much SlowDragon.
I’ve just been given these test results from the drs receptionist- this is all she can make out. It appears to be the latest, and due to no bloods not being taken at the moment I’ll have to wait for an up to date reading.
Ferritin 37
Folate 3.4
B12 169
No vit D
Apologies I’ve already given you this, sorry
Sorry but you need the ranges on these results as labs do vary
Being Hypothyroid frequently results in LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Ferritin range is typically 12-150 if female or 12-300 if male
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Aiming for ferritin at least half way through range and nearer 100 likely better
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
So……I’ve spoken to the dr who assured me my vitamins are all adaquate, so I will get a private test done. And these are my latest Thyroid blood tests before going on this trial of T3 and T4 combo.
Plann: Sample 210029162-1 Serum. collected 5/7/21 8.30 Received 5/7/21 9.34
Thyroid function test
Thyroid Stimulating Hormone 0.20 mU/L 0.20 - 5.5
Free Triiodothyronine
Free Triiodothyronine 3.7 pmol/L 3.1 - 6.8
Free Thyroxine
Free Thyroxine 23.9 pmol/L 10.0 - 24.5
dr who assured me my vitamins are all adaquate, LOL .. i've just been round the block in a car whose front nearside tyre has 'adequate ' air in ..... it goes round corners without coming off and the rim's not grinding on the tarmac ... but if i got a pull i'd still get 3 points on my licence.
I suspect your body might work best with 'optimal' rather than 'adequate' vitamins
Lovely, thank you
So Ft3 was dire and terrible conversion
Likely vitamin levels far too low
We need OPTIMAL vitamin levels
Come back with new post once you get results
Have you done Dio2 gene test?
My leg pain all went away once I got my T3 high in range - you’ll need a referral to get a trial of T3 from an Endocrinologist to bring your T3 up as your t4 is already high so you can’t really take an increase in Levo.
Some find it difficult to get T3 prescribed and their only option is to self source it online.
Folate and B12 look extremely deficient
Strongly recommend getting full thyroid and vitamins tested privately
Ohh, and 500mg krill oil
Hi I had very bad leg pain especially when walking. It was in the back of my thighs and glutes. Sometimes in front thighs when resting. Got so bad I wouldn’t eat properly because I couldn’t stand to cook. Small slopes felt like mountains. Is this the same as yours? It disappeared with the addition of T3 to T4.
Yes, very similar, I have been taking T3 along with T4 for a couple of weeks now. I live in hope of this pain subsiding.
That sounds like mine. But how much T3 and how much T4 are you on? I’m starting to think I’ve gone way past my sweet spot.
10mg T3. 125mg T4
Are your legs swollen as well?
I was on T4 100mcg and Endo reduced that to 75 mcg and added 15 mcg T3. I may have increased the T3 too quickly because when I got to 15 mcg the pain came back as well as other symptoms (too hot, swollen face and feet, exhausted). I reduced back and am now on T4 75 with 10 T3 all taken at 4am. Is not foolproof as still have bad days with either brain fog, or debilitating fatigue, or foot pain, but today was a good day so I’m having some good days which I didn’t have before. Overall though the leg pain has gone (it went immediately I took my first T3 dose - 5mcg). I can walk much faster - I have my stride back and don’t feel I’m shuffling if that makes any sense? I think it’s very easy to overshoot the sweet spot (at least for me it is!). Interestingly the Endo was adamant leg pain was not thyroid. I was adamant it was because you just know your ‘normal’ don’t you?
The only time I felt momentarily better for a few days was when I took 125 Levo and 10 T3.
Now I’m on 125 Levo and 30 T3. My FT4 has plummeted, my T3 is lower than on T4 only and I can barely move. My feet hurt so much I could cry when I stand. I can’t walk properly at all. I’ve just shuffled around the block. Panting and feeling like my hips were caving in. It’s ridiculous.
How did you go about your reduction? How did you do it, by how much? Did you suffer side effects?
I don’t know if I should battle on, retest in 4 weeks with a view to increasing again, or go backwards. I’m not really capable of anything like this.
Well after my last rather upbeat response I can now report that I’m now going rapidly down hill again! What IS it with these meds?? For the last few mornings I’ve had to go sideways downstairs because of shaky painful legs, my feet are now hurting so much I’m using my hands to help me get upstairs. Walking is starting to slow again… I’m still on 75 T4 and 10 T3. I’m exhausted and feel as bad today as I did a year ago (if not maybe worse?). When you felt well for a while what happened next? Why did you change your dose? When the Endo put me on T3 I waited for about a week after reducing T4 from 100 to 75. Then added T3 5 mcg. Felt amazing for a couple weeks. This is the problem isn’t it?? You get those days or weeks when you’re convinced you cracked it and then it goes away. It feels really confusing - and cruel. I’m so sorry you’re having all this pain! Am right there with you.
Oh I’m so sorry to read this. Sounds like you need to increase. That’s the worry, I’m remembering that I felt good for a few days on 10 T3, but who knows that it wouldn’t have worn off anyway.
I followed the private endo’s dosing strategy. I’d tried it before based on the group but it wasn’t successful. I wanted to just have some piece and let him guide me. I knew I shouldn’t have done it. It was too fast and a bit whacky. More akin to off the wall T4 dosing. It broke me. I’ve barely felt well since. So far I can safely say I feel much worse on T3 + Levo than Levo alone, even thought that wasn’t doing anything!
Maybe hang in there and re-test? Hard but at least you’ll have an idea of where you are in ranges. I think my next test is in 3 weeks. I’ve been tempted to tweak but have stopped myself otherwise will have no idea! JAmanda has said pain went when T3 is high. Maybe yours isn’t high enough yet FancyPants54 ? Hang in there!!
My T3 isn’t at 50% yet. When I increased from 25 to 30 T3 two weeks ago, that first day, I felt better. More energy and I could walk faster and with better gait. Just the one day though!
I had to get my T3 over 6 to have my legs and feet feel better.
That’s what your profile says - it’s like your T3 just refuses to increase… have you tried NDT?
Yes, I used Armour for a while under Dr Peatfield. But he got sick and hospitalised at a crucial point for me and because I didn't know enough about it at the time I stopped it. Now it's been reformulated and is hard to get. I did feel good on it up to the point when I didn't and he wasn't around.
I feel hopeless this weekend. Walking hurts more than ever. My hips are joining the pain party with my feet and legs now. I'd do a test, because it feels like my levels have dropped. But it's only been 2 weeks. I'm not sure how I can cope with this for 4 more weeks and then test. But even then, what would I do next if my levels are worse. I have felt momentary miraculous improvements associated with T3, but they are limited to a few hours at a dose change point. It never lasts and it's plunged my T4 level in a ridiculous way.
Have you tried splitting T4 only? I’ve just read your profile. What a journey you’ve been on! 😳 😖HashiHouseman was describing how he eventually found splitting T4 helped and how he was able to stop with the T3 by doing that. This is my next likely experiment depending on my new results.
I have tried it for a bit. It made no difference to me. I don’t even want to split T3 really. But for now I am.
Is this a know side affect ? Have had leg pain on and of for years but now so bad I can’t ride my bike or walk any distance I was copying ok with all other symptoms as long as I could exercise now in a really crap place
I literally can’t do anything anymore.
I think a lot of people talk about aches and pains including foot and leg pain. Mine has been going on for 2 years now apart from occasional eureka moments where T4 doses have been upped or T 3 added but then the pain relief just doesn’t last. I think it’s pretty scary. And horrid. And I’m totally and utterly fed up. It really is crap.
My leg pains went when I hit my T3 high in range.
• in reply toJAmanda
Yeah I have to agree here, my ft3 has to be high in range for pain, stiffness to go (we are talking 6.1 or higher in a range up to 6.8). And also, I can only tolerate NDT.
JAmanda• in reply to
Yes I’m at 6.3.
• in reply toJAmanda
Mine has currently fell a bit tl 6, may I ask where your ft4 sits with ft3 at 6.3? This is one bit I'm still trying to figure out for myself.
JAmanda• in reply to
Yes I don’t understand this either - some on here say it doesn’t matter where your t4 is so long as your T3 is high enough for you. Mine was 15.9 on 100 Levo so I just increased it to 125 to get the t4 equally high with the T3. Just to see if that has any effect. But I am tempted to give up the t4 completely.
• in reply toJAmanda
It will be interesting to see what it does after an increase for you. I am also tempted to remove the addition to my Levo to Armour to see how it might feel. Been trying to balance ft4 with ft3 since December and it's just a nightmare to be honest (when I have ft3 high in range, I can't get t4 high).
JAmanda• in reply to
Yes but do you feel it matters that your t4 is low? I went very low on t4 once before and couldn’t sleep but it could have been because my t3 wasn’t yet high enough! I’m trying everything.
• in reply toJAmanda
I have the same dilemma, my ft4 was low in range with high ft3 and I definitely had hypo symptoms. But also it could have been that my ft3 wasn't high enough for me. The issue is I'm still having problems falling asleep even with ft4 being at 66% of range.
I suffered excruciating bone pain in my legs which was found to be caused by VitD deficiency. After a prescribed course of supplements, I continued with a course of daily 10,000iu D3 until my level reached the top of the range. I maintained my level there, where I feel best, with 5,000iu D3 daily. I know when my Vit.D levels have dropped because my bone pain returns. Low levels of Vit.D also contribute to fatigue and depression. Maybe resolving this deficiency would help you, too.
Very interesting, thank you.
SlowDragonAdministrator
I had excruciating bone pain while correcting low vitamin D
I had been severely deficient for decades. (Hashimoto’s and undiagnosed gluten intolerance)
Apparently pain can be due to bones remineralising when improving low vitamin D
Took 3-4 months to improve and then vanished completely
Important to be taking magnesium supplements too when on vitamin D
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
2 good videos on magnesium
Buddy195Administrator
This is very useful to know. Thanks 😊
When I was on NP Thyroid, I had pain all over, muscle pain, nerve pain. The day I stopped taking it, the pain was gone.
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