All Thyroid meds make my main symptom of muscle... - Thyroid UK

Thyroid UK

137,722 members161,506 posts

All Thyroid meds make my main symptom of muscle aches worse. Any ideas why please, thank you.

27 Replies

Hi All

I was diagnosed Hypo in May last year by these Medichecks results from 26/4/19

TSH. 4.24. (0.22 - 4.20)

FT3. 5.18. (3.1 - 6.8)

FT4. 12.7. (12 - 22)

TGO. 113. (<115)

TPO. 9.7. (<34)

And commenced on 50 Levo which didn’t improve the aches at all, so self-started 1/2 grain NDT in November 19 and built up to 1.5 grain in 8 weeks

Medichecks results for 9/1/20

TSH 0.912 (0.22 - 4.2)

FT3 5.6 (3.1 - 6.8)

FT4 17.3 (12 - 22)

TGO 392 (<115)

TPO 61.5 (<34)

Even though the numbers improved, to the point where many on here have said you should feel better, the aches persisted.

Latest NHS results - from 16/3/20, still on 1.5 NDT

TSH. 0.19. ( 0.3 - 4.8)

FT4. 8.3. (7.70. - 20.6)

TPO. 47.3. (<9)

The aches have certainly not improved, in fact they are progressing.

Since 16/3/20 I have “ trialled” a week here and a week there on Levo 50 and Lio 12.5 - separately.

Again, the muscle aches got worse.

I have now stopped all Thyroid meds for 6 days now and I am happy to say the aches are ‘slightly’ better!!

So, can thyroid meds be contraindicated in my case?

Does this mean that I may now be Hyper?

I have been gluten free for 9 months now and take 50 Selenium.

Any ideas gratefully received, thank you.

Alps Holiday.

Read more about...
27 Replies
SlowDragon profile image
SlowDragonAdministrator

As I am sure has been said in previous posts....it’s takes months on a dose before know if it’s an improvement....not trialing something for a week

High TPO antibodies confirms Hashimoto’s

Last test....no Ft3 so that tells little. Ft4 is often low on NDT, Ft3 is most important result

Common phenomenon to initially feel better off replacement hormones....it rarely lasts

Rosie2m profile image
Rosie2m in reply to SlowDragon

I can also agree with this... my main symptoms were joint/muscle pain and it took 2 almost 3 months of levo to see a significant improvement. I also take vitamin d so that could’ve also helped. Either way I feel much better aches and joint pain wise than I did before. I would say that you need to pick your drug of choice and stick to it for 8/12 weeks routinely before deciding if it does/ doesn’t work x

in reply to Rosie2m

Thank you rosie2m

Good to hear that Levo and D resolved your aches

What doses please ?

I shall try another week of D 25ug from Sunday and see how it goes

Thanks

Alps

Rosie2m profile image
Rosie2m in reply to

I’m only on levo 50mcg and just taking the better me vitamin d spray.. I don’t have it to hand atm sorry but I got it from amazon :) . I wouldn’t say I’m completely free of the aches and pains but I don’t think my levo is optimal at the moment but the improvement is massive x

in reply to SlowDragon

Thanks slowdragon for your tips as usual!

I was 6 months on Levo and the bloods were getting better but the aches didn’t, so tried NDT for 5 months and again no improvement

Hence, my ‘trialling’ Levo again

Yes, I think the NHS doesn't do RT3 or TGO, via the GP

I was going to do another Medichecks, but they don’t do blood draw at the moment

Any idea please why TSH continued to drop on NDT, which is good I think?

But FT4 too dropped, which is not good?

Thanks

Alps

SlowDragon profile image
SlowDragonAdministrator in reply to

On NDT TSH almost always drops very low, frequently well under one and Ft4 often drops very low too. Most important result on NDT is always Ft3

On levothyroxine plus T3, Ft4 doesn’t drop low like NDT (unless not taking enough levothyroxine). Some people are ok with Ft4 mid range, others need it in top third of range

Levo plus T3 can be more flexible. Some people on NDT find they can’t increase dose high enough without getting palpitations from high Ft3

On levothyroxine, before even considering adding T3 ..usually we increase levothyroxine slowly upwards...in 25mcg steps. Always retesting minimum 6-8 weeks after each increase......this continues until Ft4 in near top of range....

Always making sure all four vitamins optimal too

If Ft3 remains low after 2-3 months on high dose levothyroxine, then some people need Ft4 over range to get Ft3 high enough. That’s the easiest option...but some of us can’t tolerate high Ft4

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

So basically increasing levothyroxine until high as possible ...if Ft3 remains too low, ....adding small dose T3 alongside levothyroxine ....

If Ft4 is right at top (or just over top) of range on levothyroxine, then dose levothyroxine is reduced by 25mcg and 5mcg T3 added. After a week (assuming going ok) add 2nd 5mcg dose T3 mid afternoon and then wait minimum 6-8 weeks before retesting FULL thyroid and vitamins

SlowDragon profile image
SlowDragonAdministrator in reply to

How much levothyroxine did you get up to before trying NDT?

Looking at previous posts...looks like only 50mcg ...which is only starter dose

Levothyroxine doesn’t “top up” your own thyroid levels...it replaces it

Even if we don’t start on full replacement dose most people need to increase dose upwards slowly (retesting each time) until on full replacement dose

With Hashimoto’s TSH is especially unreliable as Hormone levels hop about

Most medics are cautious on increasing dose, but especially so for anyone over 65

Improving nutrients improves conversion

healthunlocked.com/thyroidu...

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

in reply to SlowDragon

Yes just 50 Levo

I self source and treat, so can do any dose

so may well revisit Levo again

But, firstly! I shall try 25ug D for a week and see how it goes

Thanks again

Alps

SlowDragon profile image
SlowDragonAdministrator in reply to

Have you retested vitamin D, folate, ferritin and B12 recently

Frequently with Hashimoto’s we have very low levels

in reply to SlowDragon

Hi slow dragon

Thanks for input, much appreciated

Results from 9/1/20

D. 79 (50-175)

Ferritin. 122 (30-400)

Folate. 12.01 (3.89-19.45)

B12. Active. 150. (37.5-187.5)

Supplements

Calcium. 1.2g

B12. 12.5ug

Mag. 100

selenium. 50

Phosphate. 1 mg

D. 10ug - now on 25ug

K2. 200ug

My wife ‘found’ this for me -to take calcium out of the arteries

B complex - 1 a day - Asda do one with just 100% Of all the B vits

Unlike some, that are 3000%!

That’s it!

Thanks

Alps

SlowDragon profile image
SlowDragonAdministrator in reply to

How long have you been vegan?

Levels look pretty good.

SlowDragon profile image
SlowDragonAdministrator in reply to

Well 50mcg was only a starter dose

greygoose profile image
greygoose

Low vit D?

in reply to greygoose

Thanks grey goose for the D tip!

My last Medichecks D result was 79 (50 - 150)

And feel that’s fine

Yes I am aware that lots on here aim to get their D above 100

And, if you read my post from last year

I tried 25ug for a week and my Sunday bike ride was not good!

So stopped and went back to 10ug, which I’ve been on forever.

But, at your suggestion, I shall try again!

Thanks

Alps

greygoose profile image
greygoose in reply to

You're welcome. :)

RoadTrippin profile image
RoadTrippin

Magnesium helps muscle aches so highly recommend taking a supplement if you’re not doing so already, also turmeric extract reduces inflammation. Dairy products can also cause inflammatory reactions in many people making pain worse.

As others said, it takes time for anything to help, nothing’s going to improve in a couple of weeks. I’d also get checked by rheumatologist rather than assuming your aches are thyroid related, good luck.

in reply to RoadTrippin

Thanks roadtrippin for the Magnesium tip

Yes, I do supplement magnesium at 100 a day and my latest Medichecks was 280 (150-300)

Also, have tried turmeric, garlic, ginger, black pepper et al, to no avail

My CRP is always negligible, suggesting minimal inflammation?

I don’t do dairy, as vegan

I spent over £10k in 17 and 18 on private testing via a rheumy

4 MRI’s, Muscle biopsy, 2 EMG’s, Ultrasounds, lots of Bloods etc

And NOTHING! found

Thanks again

Alps

RoadTrippin profile image
RoadTrippin in reply to

Aww, I hope you find something which gives you relief, I know a friend got a lot of relief starting magnesium supplements when he got a lot of muscle soreness from running so it can work. Best of luck

SlowDragon profile image
SlowDragonAdministrator in reply to

As a vegan what supplements do you take?

posthinking01 profile image
posthinking01

Hi there - I don't think you are hyper - I think your adrenal glands are showing they can't cope with the uptake in the need for their assistance.

A lot of endo's now give a small dose of steroid to allow for this uptake but of course this is something not all of them advocate so you may have to 'go it alone' with other ways of upping the adrenal function.

Try taking 1,000 mg of Vitamin C a day - if the pains get worse - then stop - then you could try Magnesium oil spray when the pains are bad to help the muscles relax. If you are getting pains in the lower legs this is called shin splints and is definitely an adrenal issue.

I hope this helps

posthinking01 profile image
posthinking01 in reply to posthinking01

Sorry for forgot to add that if an adrenal issue then it should respond very quickly to the treatment I mention - try also to avoid coffee which is an added load on the kidneys/adrenals when they are a bit weakened because of the thyroid hormone you are taking.

If you are taking Vitamin D - sometimes the amount you are taking can give you pain - although in saying this - if you have muscle pain it can be a sign of low Vitamin D - unfortunately with thyroid/vitamin and mineral deficiencies caused by thyroid treatment load can be like looking after flowers or plants - the plant is wilting - lack of water - the plant is wilting - too much water - the plant is wilting not enough sun - the plant is wilting - too much sun.

It is all about finding out what it is causing the issue and adjusting everything accordingly - even your thyroid hormone to see if it is too much for your adrenals - hope all this makes sense.

in reply to posthinking01

Thanks posthinking01 for your tips

I did a Medichecks saliva Adrenal test, where you check 4 times a day

And it came back as unremarkable

My GP, lovely chap, has tried me many times on 30mg Prednisolone for 7days - no help with the aches though

Have tried 1000 C for a week and that too didn’t help

Also, magnesium spray

Thanks

Alps

tinkerbell22 profile image
tinkerbell22

Hi, I've recently found that low potassium may cause muscle aches and pains. The amount we need to consume of potassium in our diet daily is Huge so many don't consume enough. Some of the symptoms of low potassium match hypo symptoms. Have you ever had your potassium levels tested? As with thyroid, low in range results can still mean you are not at optimal level for you, so read the results cautiously.

There is a danger in high potassium too, so might be best to have a test, especially if you consider a supplement.

This isn't to say there's not a thyroid issue of course as your numbers re antibodies especially are troubling, but it doesn't mean it's the only issue either.

Hope this is helpful

in reply to tinkerbell22

Hi tinkerbell22

Thanks for your tips!

My potassium was 4.3 (3.5 - 5.5) in March

I do like my bananas, 4 a day!

Yes the antibodies are high, so I do need to take some thyroid meds, but what! tried them all!

Thanks

Alps

tinkerbell22 profile image
tinkerbell22

Me again, I just reread your main question about feeling thyroid meds make your aches worse. I did have a similar experience when I first started levothyroxine UK prescription meds. It wasn't my muscle aches that worsened though, it was my anxiety, it became out of control, it was really awful. At the same time I developed migraines daily and huge boils (I know, grim!). Most people told me it was just something I had to go through while I found the right dosage and I that these issues would settle over time as my levels improved. I just didn't feel this was right though, and my mum has thyroid problems and has regular migraines since being on UK levothyroxine too! She didn't have them before levo...

What I did was similar to you, I tried a form of NDT, UK version metavive I think it was, instead of levo. For me the t3 content was too high and caused me to feel hyper. But... as soon as I stopped UK levothyroxine my symptoms of anxiety, migraines and boils stopped 😮

After trying metavive I went back to the UK levo and again my symptoms restarted. I stopped UK levo and they stopped. This was enough to test the theory for me! Note I tried different variants of UK levo too and had the same problems.

So then I read that UK levo are generics, ingredients can be cheap and the amount of levo can vary within the tablets! Branded levo, non-uk levo is apparently usually more stable and better quality. So I sought some Synthroid online from abroad, a brand name. This gave me none of the symptoms that UK levo did!!! And no hyperness like metavive.

So it is worth trying all the variants before giving up on levo. It might be there's an ingredient you are sensitive to.

in reply to tinkerbell22

Hi tinkerbell22

Sorry to hear of your and mum’s problems with UK Levo.

Not nice

And glad that Synthroid helped - great!

Are you continuing to feel better on Synthroid?

What are your thyroid symptoms and your Synthroid dosage and your latest results please?

Thanks

Alps

CapnM profile image
CapnM

I find the feedback loop on anything thyroid to be months not weeks.

Hope I don't offend I got reading your posts was a lot of bounding around trying this and that. Its very easy to consume a lot of articles on thyroid and jump into every bit of internet wisdom, you may not do yourself harm but it can be mentally exhausting and frustrating plus you can spend a lot of money on unnecessary vitamins and supplements.

If you don't see improvement you seek then perhaps strip everything back to the basics, start again but take it slower?

I also fell foul of the 'feel better off thyroid after a week' - not something I have repeated.

good luck

You may also like...

Thyroid meds are making my main symptom of muscle aches worse. Any ideas why please? Thank you.

May this year with TSH of 4.24 (0.22-4.20) And over range TGO antibodies at 180 (<115) My main...

I've tried all the Thyroid hormones now, and ALL have made my main symptom of muscle aches worse. Any ideas why please?

2) FT4. 11. (12-22) FT3 4.63 (3.1-6.8) TPO 209 (<115) TGO...

Can you swing from Hypo to Hyper and when you do, can continuing with Thyroid meds actually make your symptoms worse?

26/4/19 TSH. 4.24. (0.22 - 4.20) FT3. 5.18. (3.1 - 6.8) FT4. 12.7. (12 - 22) TGO. 113. (<115) TPO....

Any advice on my latest Medichecks numbers gratefully received, thank you

are my Medichecks results, taken on 9/1/20 TSH 0.912 (0.22-4.20) FT3 5.66 (3.1-6.8) FT4 17.3.

Feel worse after taking Levo 50 for 31 days now. Any ideas why please?

26/4/19 - TSH 4.24 (0.27-4.2) on 25/2/19 this was 3.71 (0.27-4.2) 26/4/19 - free T3 5.18 (3.1-6.8)...