Muscle/joint swelling and pain: I have been... - Thyroid UK

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Muscle/joint swelling and pain

Hbmum
Hbmum

I have been taking levothyroxine for 20 years now. Not noticed many side effects. However I have started with widespread swelling and pain in various places. Toes, fingers, hands, wrists. All extremely painful to touch and swollen. Rheumatologist thinks it’s a reactive arthritis for a throat infection but all my inflammatory marker blood results are normal. Does anyone know if side effects like these can suddenly happen years after starting levothyroxine?

Thank you in advance

50 Replies
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SeasideSusie
SeasideSusieAdministrator

Hbmum

Has the brand of your Levo been changed recently and did these symptoms coincide with that?

Hbmum
Hbmum in reply to SeasideSusie

Thank you for replying. I think one of my doses changed to Teva brand. I think I’ve been mix and matching the brands recently. Could that have caused such severe reactions?

SeasideSusie
SeasideSusieAdministrator in reply to Hbmum

Teva brand causes problems for many people. It is lactose free and they use Mannitol instead and it appears this may be the culprit. However, some people do get on well with Teva.

Best to stick to one brand, one that you know you have no problem with.

What dose has changed to Teva brand, and did these symptoms coincide with that?

If you think this is the culprit there are ways and means of achieving a dose by alternative different doses or cutting tablets, etc. What dose do you take daily and what dose tablets have you got?

Hbmum
Hbmum in reply to SeasideSusie

Yes it’s coincided with these symptoms, I’m on 150mcg daily and it’s the 100 dose that’s changed to teva. My TSH is currently 4 - that may be causing problems too? I’ve never really looked into it before but from what I’m reading it should be around 1? I’ve never had joint and swelling pain before.

SeasideSusie
SeasideSusieAdministrator in reply to Hbmum

Hbmum

Yes the aim of a treated hypo patient on Levo generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.

I would speak either to the Pharmacist or your GP and emphasise that since using Teva you have experienced these symptoms and can you have the same brand as your 50s. Ask for the brand you are fine with to be named on your prescription or marked on your record at the pharmacy.

Submit a yellow card report to MHRA:

yellowcard.mhra.gov.uk/

In the meantime, use 3 x 50mcg for your dose.

Do you have any other results or just TSH?

For a full picture you need

TSH

FT4

FT3

Thyroid antibodies

And because we need optimal nutrient levels for thyroid hormone to work properly we aso need to test

Vit D

B12

Folate

Ferritin

Whatever results you have, you can post them, along with their reference ranges (ranges vary from lab to lab), for members to comment.

Hbmum
Hbmum in reply to SeasideSusie

Thanks again for the effort you are taking to reply to me. The only other result I have is a serum ferritin level of 85. No other thyroid function tests were done. Can a higher TSH cause soft tissue swellings and pain? It’s so bad at the moment and just in hands and feet. Doctors have done two blood tests in three weeks but because everything is within normal ranges they aren’t concerned. It’s just frustrating when I’m in so much pain. I’m on a low dose of steroids to try and help it. I feel at this time I can’t really bug the doctors anymore! Felt bad already at having to contact them. Think I’ll do what youve said for now and get the brand changed. I think if I remember rightly it has quite a long half life so might take a couple of weeks to notice any changes coming of Teva? I may see if in the long run I can be referred back to endocrinology But when all the doctors are less busy.

SeasideSusie
SeasideSusieAdministrator in reply to Hbmum

A Ferritin level of 85 is good if the range is 13-150. If the range is different then Ferritin should be half way through range.

Can a higher TSH cause soft tissue swellings and pain?

People experience different symptoms with hypothyroidism (and a TSH of 4 is far to high so you're hypo). List of symptoms, (not exhaustive) :

thyroiduk.org.uk/tuk/about_...

I think if I remember rightly it has quite a long half life so might take a couple of weeks to notice any changes coming of Teva?

Half life is 7 days, so from today's 100mcg there will be 50mcg left next Friday, then 25mcg the following Friday, then 12.5mcg, etc. During this time the other brand will be building up so yes, it may take 2 or 3 weeks.

Hbmum
Hbmum in reply to SeasideSusie

Thank you again for your help. I’ll keep the thread updated( in case it helps others) and let you know how I get on.

Workingitout
Workingitout in reply to Hbmum

Hi, l have benefited from taking one brand of Levo rather than a mix of two. I discovered this about 18months ago when using up my Mercury Pharma 25’s instead of taking one of them with an Activas 50 l am on 75mg daily). I noticed the heaviness in my legs disappeared and l generally had more energy and felt much brighter in myself.

I have recently had awful joint pain, mostly in my hips and shoulders which seems to have stemmed from a virus l had in November. I feel l have benefitted from reducing high oxalate foods such as spinach, chia seeds, potato’s including sweet potato, and no longer taking vitamin C tablets.

I have added a magnesium supplement in powder form as well as CoQ10 and feel my brain is clearer and l am feeling generally good at present, still some pain in joints but much lower level and finding l have the energy to write the book l have been working on for years and do major spring cleaning!

Hope your pain and swelling eases as you use one brand only.

Hbmum
Hbmum in reply to Workingitout

Thank you for your reply. I will definitely try this. Pain is very bad in wrist and feet this morning. Seems to pop up in one place and then disappear and then appear in another. I too had a virus feb time that was hard to shake off. Mainly throat related and even now I’m still getting a bit of a sore throat. Wonder if it’s all related.

Workingitout
Workingitout in reply to Hbmum

My pain moved around too, when l stretched out my hip joints it moved to the back of my knee and one shoulder! I had looked up physio exercises for arthritis for painful hips and found it really helpful to do the exercises. I think the combination of stretching, changes to diet (l am gluten and dairy free and now having more meat and less high oxalate foods) and adding the supplements l mentioned have all helped.

I wish you all the best with reducing your pain, l found mine was at its worst just before it got better!

Espeegee
Espeegee in reply to Hbmum

I really hope you can get this sorted. I don't think anyone in pain or having medical problems need avoid "troubling" GPs at the moment, you have as much right to advice as anyone else. If you bear in mind that folk who think they may have this virus aren't being seen by GPs (they refused to have any input with my granddaughter) they're generally not that busy. I pass through the car park of our practice regularly and it's nowhere near as busy, I presume people are staying away for the same reason as you. Your health is important, don't neglect it 😉

WonderWomanNo1
WonderWomanNo1 in reply to Hbmum

Hi there, I totally understand your pain, I’m afraid though I can’t be of any use as I’m still trying to figure this all out myself! I’m not going to get my bloods done or bug the Drs right now but some days are bad, even to the point my big toe seems to cramp or ‘lock’... pain in the souls of my feet, ankles, elbows, forearms, wrists, knees & calves, Infact most of the time all I want to do is to lye down. No one understands the pain unless you have it. I’m 47, probably peri menopausal, I’m hypo & apparently fibro. I need to sort all this out when we can safely visit the Drs again. Hope you get it sorted, I will follow any advice too! X

Batty1
Batty1 in reply to Hbmum

Believe it or not arthritis can happen out of the blue like it did to me 3 yrs ago after thyroidectomy. But if it’s a possibility that your thyroid meds are causing this then have the doctor prescribe original medication as see if this helps.

LAHs
LAHs in reply to Batty1

Same thing happened to me. Within a month of starting Levo I noticed pains in my knees. The first ~three months after my TT I was on T3 only and I felt fine. As soon as my (stupid) Endo changed me to Levo I got pains in my joints. I saw an arthropod (bone doc) who told me I had arthritis and I asked him how it could possibly spring up overnight, he had no answer. It was quite obviously due to the Levo but no docs knew anything about Levo back then - wait a minute, they still don't.

So now, 15 years on I have bone on bone arthritis in my knees. It had obviously dried up the cartilage, just in my knees, but that's bad enough. Oh, and for what this is worth I asked my current arthropod if the drying up of cartilage means your bones are getting osteoporosis and he said no. He said that it was possible to have sky high bone density with dried up cartilage and vice-a-versa.

a1glenn
a1glenn in reply to Batty1

The same happened to me after my surgery. It’s so frustrating because I am active but it doesn’t seem to help.

Janetcat
Janetcat in reply to Hbmum

I had awful reactions with Teva. cluster headaches and joint pain. Read a lot of other people have reactions too.

Buzcat
Buzcat in reply to Hbmum

Myself and daughter had to go back to our usual brand mercury pharma after taking Teva wee became very ill and as I have said before our doctor told us to go to a lawyer if you have not been long on it my advice would be to get off it even some doctors don’t know that changing your brand can be catastrophic to some people and it doesn’t say on the pack it’s lactose free either.

Hbmum
Hbmum in reply to Buzcat

What were your symptoms after taking Teva?

Buzcat
Buzcat in reply to Hbmum

At first a feeling of being very unwell then hair started falling out pains in legs and arms hand spasms painful swollen breast lymphatic system not right vascular system not right lumps in either side of neck heart racing I could go on the list is endless both myself and daughter had the same symptoms that’s how we knew it was the Teva this is the third time they have put this out and had to withdraw it don’t no why they it’s not been withdrawn this time

It could well be Teva. It contains Mannitol and acacia powder and I am allergic/ intolerant to both and they cause my joints to swell up.

Hbmum
Hbmum in reply to giselajames

Thank you - I’m hoping it gets out of my system quickly!

As your TSH is too high it is possible the FT4 & FT3 will be low in range. As many of us have discovered it is low T3 that causes symptoms. T3 is needed in every cell of the body.

Swelling can indicate inflammation which often starts with a less than healthy gut. The gut lining/ immune system needs good levels of T3 too. Also how are your VitD levels ? VitD is anti- inflammatory as well as being a steroidal pro- hormone.

Before I was diagnosed with Hashimotos in 2005 I had swollen wrists and fingers. Also had Low VitD . I also had Crohns diagnosed almost 50 years ago so have had lots to learn 🧘‍♂️🧘‍♀️

Do you have Hashimotos ?

WonderWomanNo1
WonderWomanNo1 in reply to Marz

Hi there, how do you get tested for Hashimotos please? My mum has Hypothyroidism & so now do I. I am 47 was originally placed on 25mg July 2019 then was put on 50mg still on this now. I’ve recently woke up feeling very cold, sweaty & shivering... is my dose too low? Not had bloods done recently as it’s not safe to do so I think. My vita min D & B12 were fine. I did have H-pylori in my stomach that needed to be eradicated.... could this be why I ache all over? Just a thought?

Hbmum
Hbmum in reply to WonderWomanNo1

From what I’ve seen there are private tests through medi check? Think this measures antibodies which indicates Hashimoto? I might be wrong though.

Marz
Marz in reply to Hbmum

I posted the link for you below - for testing companies ...

Marz
Marz in reply to WonderWomanNo1

It would be better to start your own post as it will get missed here ! I have posted a link for Private Testing lower down in another Reply ..

Saying B12 and D results are fine - is only an opinion and not a result - what were the actual results ?

Without results and ranges it is impossible to say you are correctly medicated.

I’ve not had any blood tests for vit D or Hashimotos. Dr seemed to be getting a bit impatient last week because my inflammatory markers were low and everything else they said was in normal range. Do you know if you can get legitimate blood tests done via home/online? Might be better especially during this time?

Marz
Marz in reply to Hbmum

Private Testing used by thousands here. Go to the main website of this Forum - link below - click onto ABOUT TESTING in the Menu - where the companies and tests are listed ..

thyroiduk.org

Buzcat
Buzcat in reply to Hbmum

My doctor advised me to go private as the NHS won’t do certain tests because they know what has happened to people with changing brands our doctor said not to time watch he doesn’t know when wee will get back to normal it’s been nearly two years now I thought I had been poisoned after taking Teva .

765nottyash
765nottyash in reply to Buzcat

From personal experience I find Drs to be really rubbish, and by rubbish I mean an absolute waste of time and energy.

Look at your diet, being hypo means we develop allergies, changing my diet has been more helpful than any endocrinologist or specialist, and my G.P was a total waste of space.

Hi I had similar problems, my Dr suggested I had arthritis, however giving up dairy helped immensely and to day all my aches and pains have vanished. It's worth a try and you would know with in days of giving up dairy if it is affecting you.

Hbmum
Hbmum in reply to 765nottyash

Thanks - did joint swelling /pain come on suddenly? Mine came on over a period of a few days/week. Can you suddenly develop an allergy/intolerance to something like dairy?

765nottyash
765nottyash in reply to Hbmum

Yes, but when you are hypo you are even more likely to develop allergies.

I've been hypo 11 years, I don't know exactly when it came on. Noticed first that I'd started putting on weight, then we when on a trip to Paris and I was really struggling to get up and down steps. Went to Drs suggested it was my age and arthritis and tennis elbow, load if rubbish because I now have no pain in my joints at all.

Hi I experience same. Am on 125mcg Mercury pharma...only brand I can tolerate. TSH always under 1. Found joint pain increased couple years ago when went up to 125mcg. Things I find help...exercise, gluten free....biscuits, cakes, scones REALLY give me flare ups. However, my father had osteoarthritis, & my mother has suffered with polymyalgia rheumatica, so maybe it's just in the genes! I really want to increase my levo dose see if it helps? as have been having other hypo symptoms e.g flabbyness in stomach & legs...I call it marshmallow fat!! depression now & again, & the subject of this and your post: aching joints. And I exercise regularly & do intermittent fasting. However, suspect i'm coming out of menopause so maybe connected...double whammy...hypo & menopause...what fun! Hope you find some answers to your aches & pains :)

Hi Hbmum, I was taking Levo for around 5 or 6 years when I started to get joint pain of varying degrees. It became quite debilitating at times but then used to disappear the next day. This meant that I lived with it for years without really seeking much help. I got tested for arthritis but that was negative. After lots of reading I started to notice the possibility that gluten could be playing a part. So in July 2016 when I was 43 (I mention my age as I wonder if it is years of abuse on my digestive system that has meant the symptoms only came out in later life) I decided to cut out gluten for 3 months to see if it had any effect. And to my surprise it did- within a week I had had no joint pain and there were a couple of times that I ate things that I thought were gluten free, then had joint pain and when I looked back at ingredients, I could see that there was hidden barley or wheat where I would not have expected it. I have never looked back and over the last few years every now and then I throw caution to the wind and eat something containing gluten on purpose (and because I have forgotten how awful it makes me feel and am obviously a slow learner!) and it has such a bad effect not only on my joints but my mood and digestive system. I do wonder if I have coeliac disease but I could not put myself through eating gluten fo the 6-8 weeks needed for the testing. From what you have said I would highly recommend cutting out gluten as a trial of 1-2 weeks to see.

Hbmum
Hbmum in reply to Smitho1972

Thank you - definitely worth a try. I’d do anything to get the pain to go away!

It is suprisingly easy (especially if you are in lockdown where you are as there is no risk/difficulty in eating out. The only thing I miss is crusty bread and decent pizza. I find gluten free pasta tastes the same and then all meat, veg, fruit, fish etc is all naturally gluten free. I love crisps and there are plenty of crisps that contain no wheat or barley and it doesn't mean you only have to shop in the 'free from' aisle(thank goodness!). Good luck and if you can, perhaps share whether it works for you.

Hbmum
Hbmum in reply to Smitho1972

I will do thank you

I started on hookworm therapy a few years ago, and 2 month after starting, I suddenly got all sorts of joint pain, finger pain, foot sole pain. Long story short I could no long take the 3 x 60mg NDT per day I had taken for the past 3 years, without significant side effects. I'm now on 1 x 60mg plus a tinny bit of Levo each day. My take on it is the worms fixed my autoimmune issues and my thyroid recovered somewhat - I no longer needed as much NDT/Levo. ( I don't really know) But your symptoms remind me of my weird pains - not enough thyroid = joint pain like arthritis and too much thyroid = finger tips and foot pad / sole pains. It took me a year to work it out and now I self medicate using the two symptoms as my rough guide.

LynneG
LynneG in reply to jamesal0

I have heard of hook worm therapy. So brave of you. Good on you :)

Hi Hbmum, quick reply (ha!) Thyroid issues, 90+% are autoimmune. I am sure you have an all one body mindset. Whatever you put into your body affects and goes to all cells/organs in your body. Whether thats the contraceptive pill or a paracetamol. So whether meds or food or food carrying toxins, infections and food causing problems eg gluten breaking down the intestinal lining in everybody (whether gluten sensitive or not. All depends on the function and health of your body whether you break your oral tolerance and crash)

The state of the health of our mitochondria as we age (mitochondria are our energy producing organisms - 1000's in every cell of our energy consuming organs eg, heart, brain, eyes, liver, thyroid, immune system and 100's if not 1000's in all and each every other cell.

And also the state and balance of your gut microbiome. Those organisms depend on your food intake and anything else you consume. Consume the wrong stuff and you feed the wrong organisms/ gut bacteria which will then proliferate and knock out the good guys on whom you depend for your health and life.

Unbalanced gut bacteria will damage your intestinal lining with or without gluten, leaving your blood stream open to many toxins and large fod proteins that didn't have the chance to get broken down, flooding your body and basically causing ill health/ damage to any organ forever until you sort it.

Arthritis doesn't need a name /diagnosis. You can see and feel the result and certainly results from 'Leaky Gut' There are so many books written about. For instance Professor David Sanders (NHS gastroenterologist Sheffield Hallamshire Hospital)

his book - Gluten Attack. Autoimmune Protocol - many books. See Dr Tom O'Bryan you tube video interviews and books also. And take heed, when your joints are affected, it's not just your joints, but your heart, your blood vessels, your brain and any other organ.

I was diagnosed with Rheumatoid arthritis many years ago. Change your diet and lifestyle because whatever you are doing now has led to this, as with all of us - you are not on your own with this.

I take many food based supplements to support my health but ensure your vit D level is high. Rheumatology some 10-15 yrs ago were the first to test my vit D blood level before it became trendy with GP's. I like mine at 140-150 mmol/L. My opinion having read so much and contacted Grassroots, Vitamin Research Council. Vit K2 needs to be taken at the same time as D. K2 is a fat soluble vitamin like vit D. (It Is Not K1) (see Canadian Kate Rheaume Bleue's book: The Calcium Paradox - the little known vitamin that may save your life.

I use Natures Answer vit D drops 2000iu per drop - easy therefore to get 5, 10, 20,000iu without a cup full of pills. I also take Vitabay K2 drops.

At this time of Corona Virus, (if you have arthritis you will be nutrient deficient and your immune system is out of whack, over reacting or confused etc-not a good thing with this virus about) I am taking liposomal vit C as per Dr Levy - see his you tube lectures on vit C

And the biggie with me, the supplement that has made the biggest noticeable difference is Serrapeptase. It is a proteolytic enzyme - goes into blood stream on an empty stomach and cleans up the blood, disolves fibrin (aka inflamed swellings) I take Serretia from Advanced Supplements.co.uk Tel Josephine, she will explain how it works and give you advice. You can mention my name if you wish to explain why you are phoning out of the blue - very nice knowledgeable lady.

Get yourGP when the nation is back on course to test your serum Fibrinogen levels. A healthy system should be in the bottom third of normal level. Anything higher and there is trouble ahead with heart etc. See Brtish GP/Cardiologist Dr Malcolm Kendrick's work - Blog/Books/You tube video interviews .Most people with RA have levels above the normal range. I try and bring down with Serrapeptase.

I had similar issues. After seeing many specialists I saw an Integrative Medicine dr. I was severely inflamed and couldn't tolerate taking Levothyroxine. I was put on vitamin d, magnesium, omega 3, and cbd oil. He tested my hormones and I was put on bioedentical hormones. I'm not sure what helped ; probably all of the above. I highly recommend seeing an Integrative Medicine Dr. I feel so energetic and pain free. Good Luck to you.

HB mum. Curious you mention this all over body swelling, I had a throat infection start of Jan and approx ten days later my body had swollen from face to feet. My face and lower legs were especially painful with the swelling being so full in my legs that I ended up ripping my calf muscles. My TSH also skyrocketed. My Endo dismissed it as I suggested it was a reaction to the throat infection despite never suffering from body swelling before. My inflammatory markers were also within range.

Hbmum
Hbmum in reply to Mangodog

Hi it’s really strange. My inflammatory markers are all low but I’m still suffering from swelling and pain a month on. All blood tests are normal. But doctor won’t do thyroid levels as mine are ‘within range’ but they aren’t where they normally are. Did yours clear up?

Mangodog
Mangodog in reply to Hbmum

Yeh my bloods were normal as well other than a 1/3 increase in the TSH. It had taken til mid/end of March before the swelling really went down along with my TSH which came down around 10% at that point and now almost back to where it was before the strep infection . I found regular hot baths and saunas helped with keeping the swelling at bay and loosing off the joints. Not massively but enough to find a bit of relief from the pain. The pain from swelling in my face and lower legs was the worst. Still have a very small amount of swelling but its not restrictive unlike before. Question for you, were you in the 6 weeks or so prior to the strep infection ill with any back colds/flu like symptoms?

Hbmum
Hbmum in reply to Mangodog

Hi there, my tsh is higher than it’s been before. But doctor won’t adjust meds yet. My swelling is really weird base of foot, fingers and back of hands and then over the weekend my knees. It comes and then goes and then pops up somewhere else. Hot baths do provide relief. It’s all so weird. Yes I had a run of not been overly well before I had the throat infection. I’m wondering if it’s a funny immune response? I just want it to go away now!

Mangodog
Mangodog in reply to Hbmum

When you say base of foot, are you meaning the sole or the heal? I had trouble walking as the swelling and tightness made flexing my foot as normal impossible so much so that I had to walk flat footed or shuffle in my socks if I was in the house 🤣. Also the swelling in/on/around the tendons in my lower leg and those in my hips made any attempt at walking even more difficult. As for funny immune response, I am agreeing there as a month prior to my Strep throat infection I was laid up in bed for 10days with the flu and was just getting back to some form of normality when the throat infection struck, then 7-10 days later this poxy reaction.

Hbmum
Hbmum in reply to Mangodog

Swelling is on the padding of my foot underneath base of toes and very tight. Weirdly also back of hand too with swelling. I’d had a horrible tooth extraction that got infected and then laryngitis. About three weeks later I got this horrible throat. Then this.... Sounds awful to say as I’m glad my blood tests are normal but if my inflammatory markers were up it might explain all of this!

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