Pain in legs: Hi everyone just thought I write... - Thyroid UK

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Pain in legs

R4RAA profile image
73 Replies

Hi everyone just thought I write to ask anyone about pain in there legs as mine legs have become painfull, and as I write this one of my legs are really hurting and has woken me up at 3.49 in the night. Do you think it has anything to do with my thyroid Meds?

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R4RAA profile image
R4RAA
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73 Replies
Ciara profile image
Ciara

Hi R4, This is a good question, I am sorry I don't have an answer for you because I am experiencing the same thing and like you I was thinking along the lines of it having something to do with thyroid/ meds. Maybe someone else can chime in and offer some answers. Take care.

Astridnova profile image
Astridnova

Leg pain for me is intimately related to dosage of thyroid medication, dessicated pork thyroid and thyroxin. Here is my experience: I identified my hypothyroidism from pre-tibial swelling (leg swelling) which I also associated with my right knee popping out of its socket under stress and pain and instability in left knee. (I found, by the way, that sublingual B12 supplements helped knee stability to some degree.) I was prescribed dessicated pork thyroid initially and worked up to 1grain. I know it is a low dose but the swelling went down and my knees became stable. Neck and other muscle pain, plus easy fatiguabiliity disappeared. I took the dose up to 1.5 grains and the symptoms started to come back. Trial and error showed me that too much or too little pork thyroid meant symptoms would come back. It had to be just right. My doctor did a blood test some time later and said that I was low on T4 and suggested I take thyroxin. Immediately a lot of pain came back and some swelling. I have tried taking thyroxin on two more occasions, just to ensure I was giving it a reasonable trial. The last try nearly crippled me. I was also taking1 graub and 1.5grains of pork thyroid on alternate days, which was okay, but, with the addition of thyroxin (T4), I had blinding headaches, walked uncertainly and was wearing bandages round my knees. I have lost a month and a half dealing with all the wierd aches and pains. I stopped the thyroxine and the head pain abated, but my doctor had suggested taking 1.5grains daily, and I found that the knee pain continued. I stopped any thyroid meds for one day then recommenced 1grain daily. Overnight I went from nearly crippled to comparatively normal. That was yesterday and I'm still good today. I should add that a complicating factor in my dosage was that a batch of pork thyroid did not seem to be the dosage that it said and I had descended again into hypothyroidism. I don't think that my body can process thyroxine. The short answer to your question is that leg pain is significant for a proportion of hypothyroid sufferers, as I have learned from looking up knee and leg pain on these forums. :-) A longer answer is that it seems to take a turn around of about three months for me to come back from an unsuccessful medication change. Best of luck. :-)

Astridnova profile image
Astridnova in reply to Astridnova

When I wrote 'I was also taking1 graub and 1.5grains of pork thyroid on alternate days', I meant to write, I was also taking1 grain and 1.5grains of pork thyroid on alternate days. :-)

maggiesloper profile image
maggiesloper

I have leg and lower aches almost all the time but I don't not if it's related to thyroid supplements or not. My mother who has been on it for about 55 years (she's 85) the same. Long story short I think ots probably related however, your description of stopping thyroid medication and then the pain stopping immediately seems difficult to substantiate as a cause and effect phenomenon because the half life of thyroxine meds is about 4 weeks. In other words if u stop the thyroxine today, it will take about a month to get it put of your system

Astridnova profile image
Astridnova in reply to maggiesloper

With regard to your valid criticism that it could take a month for thyroxin to leave my system, it could also be, with regard to the thyroxin that it was really toxic for me, just in a daily dose then. Or that what is measured as a blood level does not reflect what happens with absorption on a day to day basis. With dessicated pork thyroid, if I vary my dose at say 4am, the next day I can see the changes. My doctor says he has a number of patients who also experience almost immediate effects. When I first started, after a few days, my legs went down. When it was prescribed to my mother, the day after, her huge legs had gone down to normal, and I saw her ankles for the first time. My father, who is a physicist, said he couldn't understand how a medication could have such a rapid effect. I suggested that it possibly effected a change of state.

peggykayd profile image
peggykayd in reply to Astridnova

I agree with you about t-4 medications causing leg pain. I am on 1 1/4 gn Naturethroid and many times over the years I have tried to add 25mcg of different brands of t-4 to this dose in order to bring my free t-4 levels up. But after a few days of this additional t-4 I begin to get an ache in my leg that gets worse each day and I have to take pain medication and lay on a heating pad go get any relief from the pain. As soon as I stop the t-4 the pain goes completely away. This has been several different brands including Synthroid, Levoxyl plus several generics. So it is quite true that this happens and I have given up trying to add any. Peggy

Sandria profile image
Sandria in reply to maggiesloper

I had exactly the same experience. I k ow it sounds weird but it us real whatever the reason it happens 's

Gemma123 profile image
Gemma123

I had the same problem....... I was hyper and the only thing that helped me was taking magnesium tablets half an hour before bed. I used solgar magnesium with B6 400mg. You need to take 3 tablets a night. I got this info from other sufferers and I'm so glad I tried it. I hope your problem subsides soon.

Pixielula profile image
Pixielula

I would recommend anyone suffering with muscle/ joint pain to get there bloods done. Get your B12 vit D folate and ferritin done, its very common to have a b12 deficiency and low vit D when you are hypothyroid. I would advise not to supplement until you know if there is an underlying problem especially with B12. Your thyroid bloods need to be optimal also, not just in range!

Before last year I was not on any medication. Apart from a large nodule my thyroid was working OK. I was also doing yoga, walking and swimming every week. I never had any pains etc.

In the Oct 2015 I had my thyroid removed due to a deviated trachea and was started on 100mg Levo. then 125mg levo. By the time April came approx 5 months after Levo starting I was cold all the time and my legs and thighs were hurting a lot I couldn't ever get up from the floor without help. After seeing Endos and Doctors (they were no help) I started myself on NDT it took 3 to 4 months to get the dosage right. Now I have no leg pain I am back to walking and Yoga every day. I am on 2 grains per day.

For me I know that it was the Levo that was causing all of my symptoms. I hope this helps.

Sandria profile image
Sandria in reply to

Ditti

Maryh1 profile image
Maryh1

Try potassium for leg cramps.

mauschen profile image
mauschen in reply to Maryh1

A dangerous medication if used without medical supervision

Maryh1 profile image
Maryh1 in reply to mauschen

No, not dangerous at all. But the leg pain people here seem to be talking about seems related to their thyroid medication, so of course they should see their doctor. I personally have never experienced this. I started on NatureThroid at less than 1 grain and kept increasing the amount by .25 every week until I got to 2 grains. I could not go any further as I got heart palpitations and chest pain. So I knew I had hit my limit.

mauschen profile image
mauschen in reply to Maryh1

I responded to your advice to try potassium. Potassium can be very dangerous if taken without supervision. It can cause heart rythm problems if taken in excess.

Maryh1 profile image
Maryh1 in reply to mauschen

If that happens don't take it.

I'm on a low carb diet that requires more potassium. I have found this relieved leg cramps. I have recommended this to friends and it works every time. I don't think there is any risk. If pain continues then it's something else, so time to see a doctor.

mauschen profile image
mauschen in reply to Maryh1

"If that happens ..." It might be too late!

I don't take potassium, I was only alerting others to the dangers associated with taking it without proper supervision and necessity. Rythm disturbances can be fatal, for this reason alone one should be fully informed of the potential consequences in my opinion before deciding to suppliment.

LAHs profile image
LAHs in reply to mauschen

I guess you could just eat a banana now and again, if you are approaching your potassium limit you will not feel like eating another one for a while. I believe your body tells you what it wants but you must listen carefully. You could also get blood tests to go along with this approach, "Trust but Verify"!

mauschen profile image
mauschen in reply to LAHs

@LAHs, is this response aimed at me?

LAHs profile image
LAHs in reply to mauschen

We were talking potassium, that made me think of bananas, I wasn't really aiming them at anyone.

mauschen profile image
mauschen in reply to LAHs

Bananas are a good dietary source of potassium.

Maryh1 profile image
Maryh1 in reply to mauschen

Did you know one banana contains 400 mgs of potassium? I'm on a low carb diet. Banana's are high in carbs so I don't eat them. Instead I take potassium pills. No heart palpitations!

helvella profile image
helvellaAdministratorThyroid UK in reply to mauschen

Inadequate potassium can be dangerous!

An appropriate level - more than many of us consume ...

Available evidence indicates that this level of potassium intake should lower blood pressure, blunt the adverse effects of sodium chloride on blood pressure, reduce the risk of kidney stones, and possibly reduce bone loss.

nap.edu/read/10925/chapter/2#9

mauschen profile image
mauschen in reply to helvella

From the same resource and reference but page 14: "Gastrointestinal discomfort and ulceration of the gastrointestinal tract have been reported with excess consumption of some forms of potassium supplements but not with potassium from the diet. Cardiac arrhythmias from hyperkalemia are the most serious consequence of excessive potassium intake. The typical sequence of findings is hyperkalemia, followed by conduction abnormalities apparent from electroencephalograms, and then cardiac arrhythmias, which can be life-threatening. Such consequences result from either a high plasma concentration of potassium or from rapid and extreme changes in its concentration."

Both hypo and hyperkalaemia are dangerous situations which is why I repeat my advice to Supplement only under supervision of a medical Professional.

helvella profile image
helvellaAdministratorThyroid UK in reply to mauschen

Only likely to occur with relatively high doses of supplementary potassium - especially over a long period.

Given that Lo Salt is a supermarket product, modest use is unlikely to cause a serious issue except under limited circumstances.

Clinical settings in which high intakes of potassium could pose a serious risk include type 1 diabetes, chronic renal insufficiency, end-stage renal disease, severe heart failure, and adrenal insufficiency. In individuals with these diseases or clinical conditions, a potassium intake below the AI is often appropriate. For these individuals, salt substitutes (potassium chloride) should be used only under medical supervision.

mauschen profile image
mauschen in reply to helvella

I disagree

mauschen profile image
mauschen in reply to helvella

Potassium can be dangerous to supplement without supervision

ncbi.nlm.nih.gov/pmc/articl...

emedicine.medscape.com/arti...?

helvella profile image
helvellaAdministratorThyroid UK in reply to mauschen

Both of which emphasise that two (or more) factors are required - e.g. chronic kidney disease as well as significant intake.

Ingestion of potassium supplements – Ingested amounts would have to be massive to be the sole cause of hyperkalemia, but even relatively small amounts can produce hyperkalemia in a patient with impaired renal excretion

I agree that if you have one or more of the factors which make it difficult to get rid of potassium, there is an issue.

One of the big problems is that there is no obvious and clear path for saying "Doctor, I think I might be low potassium. Please monitor me while I try a modest increase in intake." In this real world, it just ain't going to happen. You are unlikely even to get tested.

mauschen profile image
mauschen in reply to helvella

Often there are no symptons in renal failure until it is well established. It makes sense to be under the doctor's care and not take chances with dangerous supplements. Healthy people don't usually need supplements.

My advice remains to err on the side of caution and liaise with your GP. If you or anyone else disagree with my opinion that is your prerogative.

Maryh1 profile image
Maryh1 in reply to mauschen

Most doctors in the US are clueless when it comes to supplements. 400 mgs of potassium is not going to hurt anyone. That's like eating one banana.

mauschen profile image
mauschen in reply to Maryh1

That's a sweeping generalisation of the US medical professionals!

If your equivalency theory is correct, then why not simplify matters and eat bananas.

Now I am starting to feel pain at the top of my legs:-)

Maryh1 profile image
Maryh1 in reply to mauschen

Bananas are very high in carbs/sugar. Could you have a tumor or blood clot? Are you legs swollen? Do you do any walking?

Granny56 profile image
Granny56 in reply to Maryh1

I was being sarcastic Maryh1, however thank you for your concerns. I don't have pain in my legs, a tumour or DVT. I walk minimum 10,000 steps per day and eat bananas in moderation.

cein profile image
cein in reply to helvella

Hi,

I started taking Pottassium a while ago as I read an artical which stated it could help with tiredness and muscle pain and weakness.

It did help and not only that for the first time in a very long time last week my Blood Pressure was normal :-) .

My GP was shocked as I was also experiencing alot of stress at the time .. she said she was looking at putting me on meds as it had been consistently above normal and sometimes very high.

JOLLYDOLLY profile image
JOLLYDOLLY

Hi,

It can be a side effect of the medication, like a dull ache, some times like a cold ache?? I get a lot of leg spasms too but I suffer with oedema. However, I normally find if I am hydrated, they are not as frequent. I have just got used to it now. I can't come off the medication as the medication does the full work of my thyroid (only a partial non working thyroid since birth). If the pain is uncomfortable, I just take a paracetamol and hot water bottle to bed with me. That normally helps me. Also in the winter those nice warm tights you can buy helps as well.

It won't harm to get your B12 folate and ferritins checked though, as sometimes anaemia and B12 deficiency goes hand in hand with thyroid conditions and has similar aches and pains. check for vitamin D deficiency too. It does make a big difference. I take medication for all of it and in a recent bone density scan, my chances of fracture is very low, less than 5%.

In fact I had a recent fall, which has taken three weeks to recover and the hospital sent me for xrays as they felt that I may have fractured my hip or knee joint due to the pain and fortunately for me there was no signs, except for tissue damage. Fortunately now healing thanks to pain killers and rest.

Keep your legs elevated as much as you can, when sitting down too.

Take care and hope the pain eases off :)

Edesem profile image
Edesem

I had so much pain in my legs and my lower back and when the endocrinologist checked my Vit D it came back with a severe deficiency now I'm taking Cholecalciferol to fix it. Would really recommend getting your Vit D checked as it can cause leg pain.

Marymary7 profile image
Marymary7 in reply to Edesem

Hope you are taking K2 with D3 to make sure it goes to the right place i.e. Not your heart valves.

Amazon07 profile image
Amazon07 in reply to Marymary7

K2 MK7!!

greygoose profile image
greygoose in reply to Marymary7

To make sure the calcium goes to the right place, not the D3. :)

Sandria profile image
Sandria in reply to Marymary7

And magnesium too

eda123 profile image
eda123

Hi, 2 weeks in Oct-Nov pain so awful, struggled to walk, sleep disturbed because of the pain etc. Blood test showed needed more levothyroxine. Gradually pain has gone. Feeling better now. Taking 100mcg and 50mcg tbs of Levothyroxine (Almus pharma). Pain started when on 100mcg of Levothyroxine from Almus pharma and 25 mcg tbs from Mercury Pharma. Blamed tbs from Mercury Pharma, but still not sure what actually caused the drop.

Ask for blood test. Good luck!

Redditch profile image
Redditch

I had that for months about three years ago. I don't get it anymore.

3 Things

1. Vitamin D3 - I take 5000I.U daily between November and March

2. Yoga, Gentle stretching morning and night feet slightly apart and bend down from the waist dropping head, breathe deeply and sink further down on exhale. Do it for 10 breaths.

3. Natural Desiccated Thyroid

All good now.

kezza2shoes profile image
kezza2shoes

Hi, 12 months ago I had awful painful legs, just couldn't get comfy. It was caused by a Vitamin D deficiency.

See a Dr and get it checked, it was very simple to treat. Just as pixielula said I wouldn't advise supplementing before a diagnosis.

There's quite a few trace elements that require a fine balance, I'm on zero food supplements at the mo' and my legs are just starting to feel uncomfortable so I'll start Vit D in the New Year. All others I try to get from a healthy mix of nuts and seeds.

Make sure they check your calcium too, mine didn't and prescribed high calcium even though I didn't need it and it could have caused more problems had I taken it.

It might be something completely unrelated but if it's Vit D deficiency please know I felt champion again within just a few weeks and the painful legs eased up within a few days.

R4RAA profile image
R4RAA

Hi everyone thanks to all your replies and will Take all Your information on board. I forgot to say I'm on vitamin D one a day and 125 levothyroxie

Thank you

humanbean profile image
humanbean in reply to R4RAA

How much vitamin D are you taking? And have you had your levels tested?

gem60 profile image
gem60

My experience with leg pains and thyroid is ...if I get leg pains I'm not taking enough thyroxin I get muscle pains in my arms as well My doctor from the hospital picked up on it several years ago my t levels were so low he said my body is looking for thyroxin as I have none of my own anymore. Total thyroidectomy. 30 years ago ....that is what is causing the pain even though my supposed levels at my doctors were fine.... I started on 25 mg extra of Levo thyroxin every day and the pain disappeared I now know if I get leg or muscle pain I increase my dosage. For a while until I feel better .. only you know your body .have you missed any of your dosage for any reason .. also I take multivitamins any way always have for many years so make sure you getting your b12 . Go back to docs,get yourThyroid levels checked ..sounds like your running low . I have been on it so long my doc never argues with me if I want a small increase in dosage even though he says my levels are fine ..

Hi R4RAA wouldn't know about your troubles being linked to thyroid tabs. What I would suggest is you go to Fibromyalgia uk site and look up your symptoms on there as they can be linked.

I was recently diagnosed with Fibro although I have cervical spondylosis the pains I was experiencing like you in my legs etc when walking dog they felt like they were seizing up and to just touch the tops was very painful so I went to GP who did various tests (to keep this short) bloods won't show Fibro nor will X-rays but what they can do is rule out other conditions like arthritis etc. At the same time of being diagnosed with Fibro they saw anomalies in bloods with thyroid - I had a scan on Wednesday.

My advice is to go to your GP and have s word nobody on this forum or Fibro forum can give you medical advice as we are not GPs but what they can do is share their experiences with you. Take care and hope you get sorted soon. Please keep in touch to let us know how you get on. 😘🤗

dovey62 profile image
dovey62

R4RAA

steveBl profile image
steveBl

Ii take 275mg of Levothyroxine and if I take statins or the blood pressure medication Bisoprolol I get pains in the lower legs. Especially at night. I stopped taking the statin and changed to a different blood pressure drug and all is now ok.

Amazon07 profile image
Amazon07

I have been having severe leg pains for over 2 years now. Feet hurt too! I'm on T3 and NDT, supplement Mg and D3 too, and it still hurts like hell. My back aches too and I'm often in terrible pain. And I just turned 40. I'm pretty fed up!! :-( I don't know what to do anymore. I take 24mcg of T3 as a circadian dose, at 3:30am. I get up at 7. I take 1.5 grains of NDT (Thiroyd) at 11am and 1 grain at 5pm. I take 3000iu D3 and lots of transdermal Mg. I eat paleo and make 95% of my food. I very rarely drink alcohol and don't drink coffee. 1 drink about 3 litres of water, redbush tea (with almond milk) and green tea / day so I'm well hydrated. I've no idea why I'm in so much pain, it's awful especially that I have a 2.5 year old daughter and I'd love to be painfree for her. :-(

greygoose profile image
greygoose in reply to Amazon07

Try some zinc.

Amazon07 profile image
Amazon07 in reply to greygoose

Can you recommend a good one please? All the ones I tried so far made me feel really sick, like I need to throw up. 🤢 I know you have to take copper with zinc so I tried to take supplements that have both. And what amount should I take, and how long for? Thanks!!

greygoose profile image
greygoose in reply to Amazon07

Ah, well, it could be the copper making you sick, rather than the zinc. Copper and zinc need to be balanced, it's true. But, hypos are usually zinc deficient rather than copper deficient. So, if you take both, you are maintaining the copper dominance rather than raising the zinc.

I can't recommend a good one, no. I've never had any problem with any brand of zinc - quite the contrary - and the one I buy now isn't available in the UK, so no point recommending it.

You need to take 15 mcg - probably for life, but if you can get it tested from time to time, it might be a good idea.

Amazon07 profile image
Amazon07 in reply to greygoose

Thanks. I'll try takin Zn only then.

Amazon07 profile image
Amazon07 in reply to greygoose

I bought some today, took one and didn't make me feel sick. :-) Here is hoping!! Thank you!! Happy 2017!!

greygoose profile image
greygoose in reply to Amazon07

You're welcome! Happy New Year! :D

Marymary7 profile image
Marymary7 in reply to Amazon07

Zinc on an empty stomach makes you nauseous take with food and it's ok, that happened to me too.

Amazon07 profile image
Amazon07 in reply to Marymary7

Thanks,but I always ok it with food (hubby too, he was feeling even more sick than me..l). Not sure why?! Got Zn only yesterday, took it and I was OK :-) Haven't tried it in him yet...

Marymary7 profile image
Marymary7 in reply to Amazon07

Well you do need copper with zinc so look at food sources....I know copper is in passion fruit, I haven't really looked into it though but was interested as to why I have been craving passion fruit lately?

Amazon07 profile image
Amazon07 in reply to Marymary7

Yummm!! I love passion fruit!! Haven't had it for ages!! I'm salivating right now Lol 😂

greenhills profile image
greenhills

Hi, I have been on replacement thyroxine for 52 years and never had hip, knee, shin, ankle and toe pain, then we discovered the adrenal issue. I have since found an article that describes perfectly all my pain and I can relate it all to my under-performing adrenals. However, I also used to be on a higher dose of thyroxine before all this, so am not certain if that plays a part too. Its all very complex with the two issues together.

Sandria profile image
Sandria

I had horrendous leg pain which was directly related to d3 deficiency . Also magnesium was critical.

It abated to a certain degree but my legs felt like lead and I had to consciously our one in front of the other to walk until I forgot my levI one night and again in the morning.

So it stays in the system 4 to 6 weeks.

Well my pain went

I tried on 2 separate occasions and different to ed of the day and cape the pain hit.

I ditched it and went on ndt and so far no more leg pain.

Maryh1 profile image
Maryh1

I take 400 mgs of magnesium, but not for leg pain.

VixUK profile image
VixUK

I've had a lot of leg pain. When I get it it indicates to me either, I need to up my dose of thyroxine, or I need to increase my B12 / magnesium.

Dutch07 profile image
Dutch07

Hi R4RAA

I also get leg pain and tingling sensation along with lower back ache. I'm not on thyroid medication but my bloods came back indicating low thyroid range and low vit D and B12 so it could have some thing todo with the lack of vitamins as appose to thyroid melds, not very nice feeling at all, wakes me in the night too, 😟

Lucylou0_5 profile image
Lucylou0_5

Hi. I have graves and on carbizamole. I suffered with extremely painful legs and arms and this was only relived when I came off the beta blocker. Are you on a beta blocker?

R4RAA profile image
R4RAA in reply to Lucylou0_5

Hi no I'm not just vitamin D and 125mg of levo thyroxine.

Granny56 profile image
Granny56

Dear R4RAA, I am sorry but your initial post has been inadvertently hijacked by a discussion on supplements.

I don't know whether or not your thyroid meds are to blame or whether you need to look a bit further. Do you attend a cardiologist? If so I would mention this symptom as it can also be cardiac related.

I previously had this symptom in my left leg, my thyroid meds continue but my cardiac status has improved, perhaps worth asking your local doctor to check it out.

R4RAA profile image
R4RAA in reply to Granny56

Hi everyone I thought I let you all know that my leg pain wasn't anything to do with my meds I now have shingles 😣 and the doctor said that was the cause of the pain. Now I am in more pain then before 🤕 Take care to you all.

Granny56 profile image
Granny56 in reply to R4RAA

So sorry to hear that R4RAA. Having had shingles in the past I can sympathise with you on a level that only shingles sufferers will understand. This is a terrible nerve pain which appears resistant to many medications. I have added a few links for information if you need them.

I was infected by my daughter and a group of her school friends who all had chickenpox. It was so, so painful. I really hope the doctors gets a grip of it soon so that you don't suffer much more than you already have.

Get well soon.

britishskinfoundation.org.u...

webmd.com/skin-problems-and...

R4RAA profile image
R4RAA

Hi everyone I thought I let you all know that my leg pain wasn't anything to do with my meds I now have shingles 😣 and the doctor said that was the cause of the pain. Now I am in more pain then before 🤕 Take care to you all.

Amazon07 profile image
Amazon07 in reply to R4RAA

I had shingles 7x. You can ONLY get shingles on the upper body, above the hips. Doxepin cream is great for post-herpetic neuralgia, and bicarb mixed with water into a thick paste applied on the blisters helps to dry off the blisters quickly. Work on your immune system! Eat tons of sauerkraut, water kefir, and other probiotic foods. Cut out grains, gluten and reduce diary to eating only pastured dairy products, only rarely though! Completely cut out refined sugar and stick with honey, coconut sugar, stevia, xylitol and eritrit. Get well soon!

R4RAA profile image
R4RAA

Hi Amazon7 that's what I thought but I was seen by two doctors I was confused because the spots are on my feet and up my leg and is very painful and I can't even put on shoes.I will try out what you have suggested.

Thanks

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