levothyroxine

[Hillman51]

hi .. this could be just me clutching at straws .. a couple of weeks before Christmas I was taking 50 micro grams of levothyroxine ,after a blood test it was raised to an extra 25 micro grams every other day .. slowly since then I have developed joint and muscle pain and wonder if there is a connection.. has anyone else had this happen ?

[greygoose]

Possibly because they didn't increase by enough! That's a silly little increase at your stage of the game. What were your blood test results and ranges?

[PinkSkittles in reply to greygoose]

Why would the symptoms start after the increase though?

Maybe ft4 is converting into rt3?

[greygoose in reply to PinkSkittles]

Well, of course it is. Some T4 - about 30% - is always converted to rT3. But rT3 is inert, and doesn't cause symptoms.

The problem lies when you are a poor converter and your FT4 goes past a certain point (different for everyone) and starts converting to more rT3 than T3. So, the FT3 level drops. And it's the lowered T3 level that causes symptoms.

[PinkSkittles in reply to greygoose]

*into too much rt3?

[greygoose in reply to PinkSkittles]

I'm not sure 'too much' applies, because it doesn't do anything, so it doesn't matter how much you have. Let's just say 'over-range' rT3, which just means 'higher than average'. But, whatever your rT3 level, it's not the cause of your problems. It's the result.

In any case, going back to the OP's question, I very much doubt that his FT4 is that high on his low dose. But, without seeing the results and ranges, we can't say anything for sure.

[Buddy195 Administrator]

I had a look at your previous post from a couple of years ago (re dry gritty eyes) but couldn’t see your blood test results. I’m really surprised you were started at 25mcg Levo & only increased to 50mcg. This is a very small ‘starter dose’. Adding another 12.5mcg (ie 25mcg alternate days) appears very conservative. Do you have a very slight frame or other medical issues that would result in such a low dose being prescribed?

It would be helpful to share TSH, FT3 and FT4 plus key thyroid vitamins (folate, ferritin, B12 and vit D)

[SlowDragon Administrator]

which brand is 50mcg tablets

Which brand is 25mcg

Different brands are often not interchangeable

As others have already said, you have been left on very low dose so highly likely low vitamin levels

With Low vitamin levels symptoms often become more apparent as dose levothyroxine is increased

[Hillman51 in reply to SlowDragon]

hi SlowDragon ..50 is accord ... 25 is wockhardt ..

[SlowDragon Administrator in reply to Hillman51]

So these are generally well tolerated brands

Try splitting the dose

50mcg waking and 25mcg at bedtime

[GreenTealSeal]

In my experience I developed appalling joint and muscle pain/weakness when my ft4 was pushed up too high in range. It was particularly bad on 75mcg levo and over but that may not be the case for you!

[Hillman51 in reply to GreenTealSeal]

are you still the same .. or have you got it sorted ?

[GreenTealSeal in reply to Hillman51]

I’m a bit of a complex case really as I’ve found that levothyroxine doesn’t seem to suit me at all and causes more problems than it resolves when I lowered my dose those issues resolved slightly and completely went away when o stopped taking my it all together- not reccomending that though!

[Quinc in reply to GreenTealSeal]

hello GreenTealSeal

Really interesting that you gave up Levo entirely… like to learn more about this as I also don’t seem to get on with it very well. I was on 50 but have reduced to 25 as I was getting odd palpitations and struggling with going to sleep (when on 25 morn & eve).

I know that I need it but would love to find an alternative to Levo …

Any thoughts?

Thanks

[GreenTealSeal in reply to Quinc]

I’m by no means an expert like those on here and also still figuring it all out at the mo. So can only say what I’ve sort of figured out for myself so far:

I’m subclinical hypo and my ft4 has always been at around 50-60% through range I find pushing this higher relieves some hypo symptoms slightly but pushes my ft4 up over what my body is happy with so I get all these horrid symptoms (seems like I struggle with it over 18ish and the higher it gets the worse my symptoms become)

For me it is my TSH and ft3 that is constantly flip flopping all over the place. The best my ft3 has even been is just under 50% through range…and I was still not feeling great.

I also have another hormone condition that I believe impacts my conversion and the medication I’m currently taking to manage that can impact thyroid function - so feel like this is partly to blame for my intolerance to levo.

I’m currently trialling t3 only until I can speak to my doctor about it all. As you can see I’m a bit of a complex case and very early on in my journey so not comfortable giving advice. But I know there are many others on here that struggle with levo and are t3 mono or on NDT…and are far more knowledgable than I!

It sucks because I really wanted to get on well with just levo alone (cheaper and a bit less faff!) I gave it a year or so of trying but to no avail

[Bethea-Alice]

I did not realise my all over muscle stiffness was a symptom of being hypothyroid when diagnosed in August 2022 and started on Levothyroxine. I didn’t feel any change for a while though constipation was improving. Suddenly in late October I got out of car one day and my legs nearly gave out on me. From waist down I felt as if I would topple forward especially when walking downhill and had to walk slowly and deliberately for months. Also knees and hips felt tender and painful especially when going up and downstairs so that l I had to take one step at a time. I had also had my 4th Covid booster and GP thought it might be related to this but I just don’t know. It was a scary time as I went from walking normally to having to be slow and deliberate. However pain and weakness did gradually subside and now my body stiffness is much reduced. I wish you well and hope you soon get through this (hopefully) rough patch.

[Hillman51 in reply to Bethea-Alice]

hi Bethea-Alice... this sounds quite similar to me .. I had 2 covid jabs that bought on a certain amount of joint pain in my hands .. but I am sure this has got worse since the increase in medication 🤷‍♀️🤷‍♀️

[McPammy]

You’ve been given a 50% increase which could have sent you over medicated. If your joint and muscle pain has slowly arrived since your levothyroxine increase then if I was you I’d get your bloods tested to see how high the T4 level now is also if your TSH is suppressed or very close to it. To check how high T4 now is you must do your blood test about 2hrs ‘after’ you’ve taken your levo.

What was your bloods prior to the increase. And then what are your bloods now after the increase. Your symptoms are over medication if they follow from an increase.

[Hillman51 in reply to McPammy]

hi mcpammy .... I do feel that the joint pain slowly got worse after the increase ,before Christmas I was going out shopping etc,no problem ... I have never had a print out of my blood tests..

[McPammy in reply to Hillman51]

You can ask for a print out of your thyroid results. You should also ask to be able to see Patients Access then you can view everything in line at your leisure. I’d definitely ask for another blood test and say you feel over medicated. Important you take your levo before the test!!!

[redhead41 in reply to McPammy]

Sorry but you should not take your thyroxine before the blood draw as it will only measure what you have just taken. It will be high. Always recommended to have blood draw about 9am, water only as this gives most consistent results.

[Hillman51 in reply to redhead41]

hi red head41.... I never take my levothyroxine before a blood test...

[McPammy in reply to redhead41]

I do both ways. I want to know how high it gets and how low it’s gets. It’s the only way to ensure your TSH doesn’t go suppressed. I keep my levels in range. If you take your meds and it goes too high/ over range then over time your TSH will suppress. My aim is to mirror a healthy persons TSH and levels. Healthy people don’t go over range or have a suppressed TSH. It’s all about managing your levels.

I spilt my levo and t3 medication also. This keeps the chances of spiking over range lower too. I feel energised and I am symptom free as long as I get my usual medications.

If you don’t take your meds before a test and you are checking if you’re over medicated you won’t know as it’ll come back falsely lower

[caledoniancat]

How's your vitamin D3? Low levels are more likely in the winter and is linked to joint pain and muscle weakness.

[Hillman51 in reply to caledoniancat]

vitamin d was at the last blood test ..I do take a supplement ..

[GreenTea23]

Yes this happened me and I had to stay on the 50 as the increase was too much too soon. Terrible muscle pains and pins and needles horrible sensation. I feel it happens when the increase is too much too soon.

[Hillman51 in reply to GreenTea23]

hi GreenTea23... have the pains gone now you are back on 50?

[GreenTea23 in reply to Hillman51]

Hi yes seems to be OK with the 50mgs at the moment. Also I used the B vitamins and they seemed to help things at bay.

[Chez57]

Yes I had it on 50mg to the point I stopped taking it in consultation with my GP to see if it was that causing it and when I did it got better. I'd had really bad muscle fatigue to the point I couldn't lift my arms above my head. She wrote to endocrinology for advice and they suggested I swap brands which I did and so far (fingers crossed) I've been ok on it. Speak to your GP.

[Hillman51 in reply to Chez57]

hiChez57 ... I have long hair which I wear up ,I have trouble lifting my arms up to do it , reading all these comments I am beginning to wonder if it the increase in medication.. are your levels staying o.k at 50 ?

[Chez57 in reply to Hillman51]

Hi Hillman, yes I seem to be ok at the moment but I'm only on my second month of the different brand. I started with horrendous pins and needles when I first started on 25mg and got worse when it was increased to 50. Except we didn't know what that was so got sent to A&E and admitted overnight. 2 appointments with neurology and put on pregabalin for "suspected" FND. Eventually came off that as I was waking up with my joints seized and it was so painful. It was only when I started researching Hypothyroidism that I suspected it might actually be the Levothyroxin and not FND. I have long hair and couldn't put it in a ponytail neither could I drive as couldn't hold my arms up long enough to hold the steering wheel. I actually ride a motorbike and last year I couldn't even contemplate riding it. But now I can drive and if we get some nice weather I think I could even ride. The muscle issue has gone but still got the the electrified feelings but now on Duloxitine for that and although it's not gone altogether I can tolerate it.

I've got blood test beginning of April but whatever it comes out at, there is no way am I increasing the Levothyroxin.

[Hillman51 in reply to Chez57]

glad you are feeling better.. hopefully this is my problem too.. I also get a sort of skin crawling sensation .. how long did it take once the medication was reduced ?

[Chez57 in reply to Hillman51]

Hiya. I've just seen one of your replies to someone else and that you were on Accord!!!!!! That was the first one I was on that I stopped and swapped. I'm on MercuryPharma now. After endocrinology suggested trying a different brand if that didn't work for GP to refer me. The pharmacist rang and said there were 20 brands to go through so could take 20 months to find one that would suit 😱. But luckily I seem to be ok on this one. I think it's a case of watch this space. But if it comes back I'm going straight back to GP because I'm not going to put up with it. Made my life miserable.

[Hillman51 in reply to Chez57]

it does make life miserable.. it’s really slowed me up cos every movement is painful ... how long did it take to feel better?

[Chez57 in reply to Hillman51]

Not long after I stopped it. And been fine since I've swapped. Hope you get it sorted

[Hillman51 in reply to Chez57]

thankyou so much for your help ..take care ..😊

[Nomad12]

Happened to me too, can't increase from 50mg to 75mg without leg cramps and stiffness. Stayed on 75mg for months in the hope the body would adjust, even tried increasing to 100mg thinking the body needed more. Doesn't make any sense though because my blood results show I am undermedicated but my joint/muscles don't seem to agree... I do have the DIO1 & DIO2 gene defect though, so maybe that is my problem, probably need T3 and less T4. If you put your blood test results and the ranges on here, am sure people could advise you. Do you know your root cause yet? Have you had blood tests that include FT3 and the antibodies? That is important to test as well, to get the full picture.

[SlowDragon Administrator]

I have never had a print out of my blood tests..

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

How much vitamin D are you taking

Please add results

[Hillman51 in reply to SlowDragon]

l am taking 3,000 i.u vitamin d

[SlowDragon Administrator in reply to Hillman51]

So you must retest twice a year

[Hillman51 in reply to SlowDragon]

yes I do..

[Hillman51 in reply to SlowDragon]

If split the dose as you suggested.....would it help the joint pains if this is what causing it ?

[SlowDragon Administrator in reply to Hillman51]

when we increase dose Levo, initially this exacerbates any vitamin deficiencies

You may find it easier to tolerate increase in dose by splitting

It could be Wockhardt doesn’t agree with you. Unlikely as it’s generally well tolerated

You could experiment with taking only Accord for 4-6 weeks (cutting 50mcg in half to get 25mcg )

cut with pill cutter or sharp craft scalpel. Store remaining half for next day. It doesn’t matter if it’s not an exact half

or you could reduce your increase in dose to 37.5mcg initially…...by cutting Wockhardt in half

It may simply be too big an increase to tolerate in one go

Lots of people do need to increase in smaller 12.5mcg steps

Then after 6-8 weeks either test first before increasing again

Or just increase again by the other 12.5mcg

[Hillman51 in reply to SlowDragon]

o.k thankyou for your help ..

[Hillman51 in reply to SlowDragon]

should I do this on my own or contact the doctor ?

[SlowDragon Administrator in reply to Hillman51]

Just experiment yourself

GP’s rarely aware that many patients find different brands levothyroxine are not interchangeable

And they rarely grasp just how sensitive some people are to changing doses

Some people find they have to increase incredibly slowly

[Hillman51 in reply to SlowDragon]

o.k thankyou very much ..

[Hillman51 in reply to SlowDragon]

sorry to keep asking questions... I’m going to try splitting the dose to see if it helps with the joint pain , how far apart should I take them .. just feel a bit nervous about doing it ..🤦🏻‍♀️

[SlowDragon Administrator in reply to Hillman51]

Levothyroxine is a storage hormone

Important to take on empty stomach and nothing apart from water for at least an hour after

Waking and bedtime are most convenient usually

[Hillman51 in reply to SlowDragon]

thankyou ..

[Hillman51 in reply to SlowDragon]

me again .. would it be o.k to take the 25 in the morning and the 50 at night ...the only problem would be because I take the 25 every other day ,it means I would take a 50 at night and then again in the morning .. hope you get what I am saying ..

[SlowDragon Administrator in reply to Hillman51]

Yes ….which ever suits you best

[Hillman51 in reply to SlowDragon]

👍🏻...