Advice on aching joints : Hello, thanks for all... - Thyroid UK

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Advice on aching joints

Conkerlover profile image
21 Replies

Hello, thanks for all the help from posters so far, I need to pick your brains again!

The husband has been on levothyroxine since July and is now on 150. It has helped with some symptoms and things like his cholesterol have dropped however, since he started it (starting dose 100) he has really achy joints especially in his knees and feet, if he stops moving then everything seizes up - this has only been since he has been on the levothyroxine, also his sleep is poor. Could this be a side effect of levo? Or could it be something else, how would I find out? From his test results it appears that it is hashimotos although the GP hasn't mentioned anything

Any help much appreciated

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Conkerlover profile image
Conkerlover
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21 Replies
Regenallotment profile image
RegenallotmentAmbassador

Hi,

Do you have recent blood test results for FT4 and FT3?

Here are some ideas.

It can be under or over replacement. It can be low FT3 with normal FT4.

It can be low ferritin, it can sometimes be helped with magnesium.

Any opportunities for sauna/cold water therapy? Hot baths with Epsom salts, a swim?

Conkerlover profile image
Conkerlover in reply toRegenallotment

Thanks for responding - results below. His red blood cell count is below reference range and a couple of other ones are still low

Tsh - 3.02 (0.27 - 4.2) T3 - 5.3 (3.1 - 6.8)

T4 - 14.7 (12 - 22)

Regenallotment profile image
RegenallotmentAmbassador in reply toConkerlover

Was that a morning test?

No dose for 24 hours before testing ?

That’s quite a healthy FT3 with a low FT4

Is he still in 150mcg T4 and no T3?

TSH suggests he’d benefit from another increase. But FT3 is already fairly high.

What else was low? d? B12?

Tagging  SlowDragon for advice.

Conkerlover profile image
Conkerlover in reply toRegenallotment

Bear with and I'll dig out the other test results

Morning test and 24 hour gap. The 150 was introduced about 1 month ago and another blood test due in a week or so but via GP so limited test - the results above are from medichecks

Conkerlover profile image
Conkerlover

OK, slightly embarrassed as they were my results! No wonder they looked healthy - sorry, it's been a long day. I'll just get his

Conkerlover profile image
Conkerlover

These are the correct results but everything else was correct so medichecks, 24 hour spacing, first thing in morning

Tsh - 24 (0.27 - 4.2) T3 - 5 (3.1 - 6.8)

T4 - 13.2 (12 - 22)

Vit d - 59.8

Ferritin - 147

tattybogle profile image
tattybogle

Hi , how many weeks has he been on 150mcg ?

are these latest TSH / fT4 /fT3 results from 150mcg ? or was dose put up to 150mcg after this test ?

Tsh - 24 (0.27 - 4.2) T3 - 5 (3.1 - 6.8)

T4 - 13.2 (12 - 22)

For me personally ,achy knees / feet is a sign of undermedication, but it won't be for everyone.

Conkerlover profile image
Conkerlover in reply totattybogle

It got put up to 150 after this test but it seems the more medication he has the worse it gets? The achiness didn't start until he started levo and every time the dose has increased then the aches ramp up more if that makes sense

Regenallotment profile image
RegenallotmentAmbassador in reply toConkerlover

Yep makes sense, the T4 is replacing his own thyroid production and it’s not optimal yet so he’s feeling the symptoms. Until it’s optimal there is a good chance he will feel worse than before.

Needs to keep going for another increase at 7-8 weeks. Worst weeks for me of an increase were always 3-5. Hang on in there.

Vitamin D nearer 100 would be better, take 3-4000iu through the winter, D3 with K2 and if you can make him add some magnesium either to the bath or as a supplement (biglycinate is well tolerated) I buy mine on Amazon, I avoid citrate as it upsets my tummy.

Is he on statins?

Conkerlover profile image
Conkerlover in reply toRegenallotment

Thanks!

Vit d is hopefully improving as using the mouth spray with k2 - no statins - do you know when is best to take magnesium?

Regenallotment profile image
RegenallotmentAmbassador in reply toConkerlover

Good work, I take my mag at bedtime, hubby does absolutely any time of day 🤣

SlowDragon profile image
SlowDragonAdministrator in reply toConkerlover

Is he taking Levo waking or bedtime?

Magnesium best taken afternoon or bedtime…..at least 4 hours away from Levo

Which brand of levothyroxine is he taking

Does he always get same brand

Retest 6-8 weeks after dose increase

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Conkerlover profile image
Conkerlover in reply toSlowDragon

Thanks for your response

Levo in the morning, he is still struggling with when to take it and not have tea so has it as soon as he wakes up then waits 30 mins before having a cup of tea

I'll check the brand - I think it's always the same one - apparently it just says 'levothyroxine sodium' - is that right?

SlowDragon profile image
SlowDragonAdministrator in reply toConkerlover

An hour before tea might be better

If he usually gets up in night for loo ….can take Levo then

Or set alarm for 6am …..have Levo in pill dispenser at side of bed…Take levothyroxine and go back to sleep

tattybogle profile image
tattybogle in reply toConkerlover

Mmm ... i see what you mean , but i'd not worry too much about the achyness at the moment if he's only been on 150mcg for a few wks .

the thing is, he was extremely hypo at diagnosis and those latest result show he is still pretty bad ... changing thyroid hormone levels within the body is more like changing direction in a supertanker ... everything takes such a long time to do what its doing and stabilise and we can't speed it up much , other than get dose increases when needed and then wait 6 weeks or more to see the effect .

"try that dose for a couple of months ,and THEN see how you feel, and another blood test" is the answer to most thyroid questions, and i can imagine you are both sick of hearing that. Unfortunately it's true .

but in my experience , things like achy knees/ ankles should gradually improve once he's on the right dose.

but yes , it's also worth keeping an eye on/ record of which brands of levothyroxine he is being given... some people find they notice problems with one brand but not another.

A ( hopefully) Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

SlowDragon profile image
SlowDragonAdministrator

what were his folate, B12 and thyroid antibodies results you did via Medichecks

Conkerlover profile image
Conkerlover in reply toSlowDragon

Folate - 10.3 (>7)B12 - 78.6 (>37.5)

Thyroid antibodies - 87.3 (0 - 34)

Thyroglobulin antibodies- 151 (0 - 115)

SlowDragon profile image
SlowDragonAdministrator

Many people find Levothyroxine brands are not interchangeable.

Often Most easily available are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Conkerlover profile image
Conkerlover in reply toSlowDragon

I've just checked the box and it is accord - sorry for the wrong answer, it's all still a bit new and confusing

FallingInReverse profile image
FallingInReverse

Just a quick reply to say that achy joints, including achy ankles and uncomfortable achiness when putting my feet down on the floor when waking up - was a symptom of undiagnosed hypo for me that went away when titrating Levo up to optimal over the past year or so.

Even now on bad days it can return.

I will also say that lots of things happen when you start taking Levo as your body adjusts. We read here frequently of people thinking there is a side effect when they start Levo when it can also just be the lingering hypo that you are taking Levo for.

I haven’t read the whole post above, just sharing my experience with this symptom.

tattybogle profile image
tattybogle in reply toFallingInReverse

totally agree.... adjustment periods and unexplained weirdness etc as things adapt and catch up.

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