Joint Pains worse on 75mcg Levo.: Hi, Sorry, two... - Thyroid UK

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Joint Pains worse on 75mcg Levo.

FancyPants54 profile image
29 Replies

Hi,

Sorry, two questions on the go at once.

Since moving up to 75mcg 3 weeks ago, my knees, ankles and now shoulders are all hurting much more. I'm moving around like a cripple.

They had started to hurt a bit on 50mcg. But it's worse now. I struggled with the dose increase so had to do it very slowly. 3 weeks on 50/75 and now I'm 3 weeks on 75mcg so too soon to retest.

Any ideas why I'm hurting more on the bigger dose? Silly me, I had hoped I might start to feel a bit better!

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FancyPants54
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29 Replies

Are you referring to Levothyroxine? I take 175mcg and attribute my aches and pains to aging! Muscle/joint pain or problems are not listed as side effects. I’ve never had a problem taking it. Sorry I can’t help! Wishing you the best!

FancyPants54 profile image
FancyPants54 in reply to

I'm not attributing any of this to ageing because it started as my dose increased, first to 50 and now 75mcg Levo.

in reply to

There is a little saying a doctor told me about remmbering thyroid isssue.I think it might have been moans,groans and bones.Something like that. Are you sure you aches and pains are age relatedand not insufficiant treatment?

in reply to

That’s certainly possible! For some reason, I’ve never picked up on that info! I have an MD appt at the end of the month and I will ask him. In the meantime, I will look for the info. Thanks so much! Hugs!

shaws profile image
shawsAdministrator in reply to

This is a list of symptoms.

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

Peanut31 profile image
Peanut31

Hi

I experience joint pain especially neck stiffness and shoulders, this is of course thyroid related (I have hashimoto's too)

When I increase my dosage I have muscle pains, and as time goes on it gets better. I've noticed a few days ago I am not in pain.

I'm currently on 100mcg of levo. Normally you increase Levo by 25mcg every 6 weeks after your blood results, they advise 6 weeks as it gives your body time to adjust to the increase.

when I posted a similar question, the reply was I wasn't on the correct dosage yet.

It was also mentioned it could be lactic acid which is related to thyroid issues and metabolism. I have been using coconut oil nightly to rub on my shoulders and neck this is to help inflammation, and it appears to be helping.

Best Wishes

Peanut31

Interesting...I have had shoulder and neck muscle pains for years! They’re irritated now! I’ve always thought it was tension. They’ve never slowly increased my dosage either. They just say they’re going to bump me up to such and such. Oh well...thanks for sharing! Much appreciated!

marsaday profile image
marsaday

Going up on t4 can cause issues with some people. Quite often the higher t4 level lowers tsh and so a person can get a drop in overall t3 levels. This then makes you feel hypo.

It is almost impossible to say for sure the cause unless you have a blood testing lab in the cellar.

The issue is probably a t3 one though. Could you try the addition of a little t3 to see how this went? This is ilkley to help but only a small amount to start with.

Also look into conversion issues. You may not be converting as well as others and the extra t4 is not moving over to t3 quick enough for you to feel ok.

Did you feel any short lived benefit from more t4?

FancyPants54 profile image
FancyPants54 in reply tomarsaday

I seem to be complicated. As my dose has increased so has my TSH, but my Free T3 and T4 have stayed the same and in good ratio. I won't really know more until I have my next blood test in 4 weeks.

I just wanted to know if others had felt more joint pain as the dose increased.

No, I don't get a short lived benefit. Increasing dose so far has made me feel worse and has to be done very slowly.

I've been referred to an endocrinologist, because the doctor is puzzled. So am I. Also worried that the endo will know less than me! At first the doctor suspected Addison's based on a 2 year old cortisol test. But we've just repeated the test and it came back fine. No insufficiency.

It really sounds like the medications is not agreeing with you to me. The thyroid affects so many functions and every cell in your body and as a results the symptoms are an every increasing vast list and it also seems that is also true of reactions to medication. I think we need to see your blood results and that perhaps you should take a couple ofdaysbreak from meds to see if it calms. It might be worth seeing your GP to exclude anything like rhumetiod arthritis which is one of those illlnesses that flare at times.

Going forward it might be that you need another type of hormone replacement than levo but getting that on the NHS will be impossible right now.

There is a list of helpful doctors that you can be sent via email. Look on the thyroid uk website for how to get a copy. Ask your GP surgery for a copy of your blood results to post here and people will advise furthur.

Did you have joint problems before?

FancyPants54 profile image
FancyPants54 in reply to

Hi. I said in my post that I am 3 weeks into the dose increase so I don't have relevant bloods and won't for another few weeks. I always get my results printed out when I have bloods taken, whatever they are for.

No joint issues before. I doubt it's arthritis because I had no issues before. I'm also loosing muscle strength.

greygoose profile image
greygoose

Have you had your vit D, vit B12, folate and ferritin tested? If they are not optimal, your body will not be able to use the extra thyroid hormone correctly, so all sorts of extra problems will raise their ugly heads.

FancyPants54 profile image
FancyPants54 in reply togreygoose

Yes, and I've posted results. The only thing I need to increase is my ferritin, which comes in at 37. I'm taking iron suppliants and iron rich foods for that.

greygoose profile image
greygoose in reply toFancyPants54

Good.

FancyPants54 profile image
FancyPants54 in reply togreygoose

And I've got a new Better You iron spray for buccal absorption. It came today. They have just released it for sale. I'm hoping that might help speed things up.

greygoose profile image
greygoose in reply toFancyPants54

I hope so too. Let us know how you get on with it. I'm sure it would interest a lot of people on here. :)

mrneduc profile image
mrneduc in reply toFancyPants54

I’ve got the iron spray as well - arrived couple of days ago

Judithdalston profile image
Judithdalston

I would suspect it's the hypothyroidism causing the aches/pains etc; the 75 mcg is still a smallish dose, and without seeing full thyroid blood tests, cannot tell if your FT3 is improving/good- have you ever had a FT3 test? Do you know if your have Hashimoto's, with thyroid autoimmune antibodies- it can cause peaks/ troughs in your thyroid hormone levels ie feelings of under and overmedicated, as dead thyroid cells are dumped into the blood stream along with thyroid hormones. But Hashimoto's is also characterised by poor gut absorption which means essential vitamins and minerals, from food, drink or supplements, are often low if not deficient. It might be worth getting your VitD, B12, folate and ferritin blood levels tested- they need to be at the higher end of their ranges ( see SeasideSusie's posts/replies on this); lack of them can lead to various aches/pains/exhaustion, and poor conversion of T4 to active T3. If your doctor won't test for these 4 vits/ mins or T3 it might be worth considering private blood test ( see Medichecks or Blue Horizon- medich cks has 20% offers on Thursday).

FancyPants54 profile image
FancyPants54 in reply toJudithdalston

I get my bloods done privately so I have a long list of Free T4 and Free T3 results behind me. I'm mid-dose increase at the moment so don't have any relevant bloods to report. I've not had an antibody test for a while, I guess I should have another. But in the past there have never been any, of either kind showing up.

I do test my vitamins and minerals and all are good according to advice on this site other than ferritin at 37, which I'm working on.

It's all confusing. I understand how hypothyroidism works and how medication should work. But for me it's not working like that so far. With each dose increase my TSH has gone up but my Free T's have stayed almost exactly where they were when I started and in good ratio.

Judithdalston profile image
Judithdalston in reply toFancyPants54

Get your doctor to do lots of tests excluding other causes for pain... I had them but by process of elimination then diagnosed by rheumatologist as having fibromyalgia. This I am now trying to treat it with more thyroid 'meds' as suggested by Dr Lowe ( see his archive on Thyroid Uk)... I am assuming my prolonged and disabilitating. bad aches/ pains and weakness are thyroid related ( I do not convert well). So you have never been diagnosed as Hashimoto's, which you will have gathered here is in itself relatively unusual? Only other suggestion, have you been very stressed recently ? A few years ago I had illness that took me to Intensive Care ( with septic shock/ acute pancreatitis) and had lots of antibiotics...after that my various blood tests were all over the place, lost lots of weight ( half of which had returned within the year) ...and gradually developed 'fibromyalgia'.

I presume you were quite ill interms of symptomatic before you started levo. If I personally had a good level of T4 and T3 and TSH not making sense I would ignore it and doctors will treat a TSh rather than a human being or thier symptoms at times. Is you T4 lower or higher than your T3. It should be higher and if not can indicate thyroid resistance.

FancyPants54 profile image
FancyPants54 in reply to

I was symptomatic in some ways, but not all. I'm never cold and I don't fall asleep in the afternoon etc. But I have no energy and little stamina and a lot of fluid retention and brain fog and no motivation. Huge weight gain. I tick a lot of hypo boxes. My T4 and T3 are in the right balance with each other but below half-way in the reference ranges, which is why, with rising TSH it was considered Levo was the next move.

in reply toFancyPants54

Nobody could possibly have all symptoms. I am hypo but feel hot all the time, temp low when I take it though. You do not have a good levels of FT3 or Ft4 below mid range of these is never good. You did need increase and need to decide if you can put upwith the joint pain for a bit to see if it eases as you get used to medication and the levels increase in your blood or pay for some NDT or T3 to see if it suits you better.Epsom salt baths might help. Although you are between blood tests it can be helpful for us to see blood results. There is a lot of expertise on this forum re less common conditions that can show in blood tests that are not so much about correct doses as underlying causes and they tend to hang around.

Re your rising Tsh it is unusual but I presonally think little of it as a reliable blood result. There can be splurious blood results that need taking again, also the time of day is important. Could you have had an early morning test then followed by the next test midday or afternoon? Also I have come across one person onthe forum who had a nasty fall hitting the back of her head that caused an injury to pituaritary and her Tsh shotup. Whip lash coulddo thesame thing. There have also been people of the forum with really high TSH but feel fine, no symptoms at all and T4 and T3 upper part of range. I personally think the T4 is the most reliable test. It has never suprised me almost always in upper half of range when people are well and lower half when people hypo. It never does anything silly. the only exception is when it is really high and T3very low and person symtomatic indicating poor convertion.

We might never know why your TSH is rising but it is not a blood test known to behave itself.

FancyPants54 profile image
FancyPants54 in reply to

Time of day is not an issue. Since learning the importance of first thing in the morning and fasting (no meds either) that is what I always do. No injuries or accidents either.

I guess the next blood test after being on 75mcg for 7 weeks might give me more of a clue. I'm reluctant to switch brands because I had a bad reaction to Teva. But I do wonder if the lack of progress/aches and pains might be to do with the brand. I'm on Wockhardt.

I just don't know what the symptoms of brand issues might be.

FancyPants54 profile image
FancyPants54

Blasted low carb diet broke me. It was the start of all my problems. I've not been properly well since and that was years ago.

FancyPants54 profile image
FancyPants54

I was loosing weight on a calorie counted and exercise plan for much of a year, but the loss suddenly stopped and I still had about a stone to loose. I got frustrated. I actually felt and looked great. I had no obvious thyroid problems then at all. Perhaps the start of permimenopause but I didn't notice at the time.

My frustration with the last bit of weight loss made me turn towards the wheat belly diet. I did a lot of research and then went for it. It's a very low carb diet, but not restricted in other ways. It was OK but no weight loss. So I went the final mile and cut carbs almost completely in the hope I could kick my body into ketosis. It didn't work. I felt ill. As if I had the flu. I was told this was normal, to stick with it and it would pass in a couple of weeks as my body switched from burning carbs to burning fat. But it didn't get better. I dragged around feeling exhausted. I didn't loose any weight. I couldn't keep it up. But that was 6 years ago. I went back to a sensible diet but my energy never fully recovered and I started having more and more hypo symptoms. It's been a loosing battle ever since. I now eat all food groups, but I am far from well. It's like someone took my batteries out.

I wish I had never done it. I could have settled for where I had got to and been very happy. Instead I ruined my life chasing the Holy Grail of thin!

shaws profile image
shawsAdministrator

As your dose is increased it should ease your painful joints. It is a clinical symptom i.e. pain etc. You might be able to tick off a few more symptoms.

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

FancyPants54 profile image
FancyPants54 in reply toshaws

I can tick off a lot of these boxes now!

So you think it's to be expected that the joint pains started after I began Levo and have got worse as time and my dosage has gone on? I do feel way worse now than before I started. In many ways. But I'm also trying to get HRT balanced and that feels like it's gone off too.

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