Aching legs with medications: Hi! I’ve been... - Thyroid UK

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Aching legs with medications

norty1 profile image
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Hi! I’ve been struggling with my medication dosage for almost two miserable years after being diagnosed and stable on Naturethroid for 8 years. Once it came back in after shortage it caused hair loss, joint pain and fatigue. I was able to improve after switching to NP Thyroid but than that one had reports of return of hypo after it started smelling like cat urine. I’ve tried everything since and synthetic would give me lower leg ache during sleep which is a symptom my doctor can’t explain. I’m now trying Armour NDT again and having it with that. It stops me from being able to raise but I still have signs of hypo like hair loss, muscle pain, constipation etc. I also have some occasional heart palpitations which could indicate hypo or adrenal. Any thoughts? Especially on the aching legs.

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SlowDragon profile image
SlowDragonAdministrator

First step is to get FULL Thyroid and vitamin testing done

What vitamin supplements are you currently taking

Do you have Hashimoto’s?

Are you on strictly gluten free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

If/when on NDT or T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Please add most recent results and ranges if you have any

Or come back with new post once you get results

norty1 profile image
norty1 in reply to SlowDragon

I test first thing in the morning 24 hours before my last dose. I have tested all vitamins and done complete thyroid and iron labs. The thyroid usually comes back not optimal but not bad (probably because I am not taking enough thyroid, I was optimal on 1 grain of Naturethroid and currently can’t go higher than 1/2 grain of anything without leg aches etc). Iron labs ok depending on who you ask. Gluten free since Oct 1, 2020, dairy free since 12/15/20, no soy, alcohol free since 1/6/20. Nothing standing out in vitamins. I do notice my creatine is always not optimal. I’ve been tested for other autoimmune and I did develop hashimoto about three years ago. I was also under a lot of stress when the Naturethroid failed me and am probably going through menopause. I am taking estradiol and progesterone. Because I can’t figure out what is causing what I am currently only taking the medications above and a probiotic. I have been tested things myself at home and through my doctor. Waiting on home thyroid test results and just mailed another 4 point cortisol test and recently did full iron. I’ll post those when I get home. Have you ever heard of leg aching happening as a result of medication? If I could figure this out I think I could raise to get my thyroid to optimal levels.

norty1 profile image
norty1 in reply to norty1

My latest iron (1/6/21):TIBC: 248 (250-450)

UIBC: 125 (131-425)

Iron: 123 (27-159)

Iron Saturation: 50 (15-55)

Vitamins (12/18/20):

B12: 861 (232-1245)

Vit D: 51.5 (30.0-80.0)

Fol: 10.7 (>=4.7)

Zinc: 76 (56-134)

Iodine: 46.4 (40.0-92.0)

Antibodies (9/22/20 - gave up Gluten 10/20):

Thyroglobulin: 3.9 (0.0-.9)

Thyroid Peroxidase: 26 (0-34)

Thyroid (12/3/20 on 50 mg of Thyrovanz - leg tingling started, sinus pressure, dizziness began)

TSH: 1.75

FT4: 1.19 (.82-1.77)

FT3: 2.6 (2.0-4.4)

Cortisol (2/3/20):

Morning: 7.6 (3.7-9.5)

Noon: 1.8 (1.2 - 3.0)

Evening: 1.2 (.6 - 1.9)

Night: 1.3 (.4 - 1.0)

MTHFR C677 - heterozygous

I'm waiting on results of new thyroid tests on Armour 30 mg and new 4 point cortisol test.

norty1 profile image
norty1 in reply to SlowDragon

Just got my most recent labs:

FT3 - 3.3 (2.1 - 4.2)

FT4 - .9 (.8 - 2.0)

TPO - 36 (0 - 60)

TSH - 2.5 (.5 - 4.7)

Vitamin D - 39 (20 - 80)

RT3 - 20.3 (8 - 31)

I'm guessing RT3 so high is not good?

SlowDragon profile image
SlowDragonAdministrator in reply to norty1

Bloods should be tested as early as possible in morning before eating or drinking anything other than water and last 1/3 of daily dose of NDT 12 hours before test

So if you took last dose 24 hours before test Ft3 result is false low result

On NDT when adequately treated TSH is frequently suppressed

norty1 profile image
norty1 in reply to SlowDragon

I did follow those guidelines. Do you mean their was an error in the test? I took a home test with Paloma and it took an usually long time for the results. I guess I need another test.

norty1 profile image
norty1 in reply to SlowDragon

Here are my cortisol results:

Morning: 6.8 (3.7 - 9.5)

Noon: 1.5 (1.2 - 3.0)

Evening: 1.2 (.6 - 1.9)

Night: 3.1 (.4 - 1.0)

The last three tests I have taken have had high night time cortisol. I also noticed that I have typically had a low FT4 range compared to my FT3.

SlowDragon profile image
SlowDragonAdministrator in reply to norty1

On NDT Ft4 is frequently low

That’s just the way NDT works

It doesn’t suit everybody

norty1 profile image
norty1 in reply to SlowDragon

I didn’t know that. You mentioned that my FT3 was a false low result since I had waited 24 hours after last dose to test. What does that mean? Would you have expected it to be higher?

SlowDragon profile image
SlowDragonAdministrator in reply to norty1

Day before test you need to take last 1/3rd of daily dose of NDT 8-12 hours before test

FT3 levels drop significantly in the blood after 12 hours

norty1 profile image
norty1 in reply to SlowDragon

I had not been told that before. I take my thyroid medication at 7 am each morning. My first doctor had me take it as usual in the morning and then test. My new doctor says 24 hours before. Am I supposed to cut my 30 mg Armour into 3?

SlowDragon profile image
SlowDragonAdministrator in reply to norty1

If it’s a single tablet....yes

Swissgirl profile image
Swissgirl in reply to norty1

Hi Norty1. I am currently on 150mg Armour and still increasing very gradually, due to some still ongoing hypo symptoms. When I increase my body seems to struggle and I get worse symptoms for a few days, until my body adapts to new dose. At the moment I take 60-45-45 (every 4-5 hrs). The dose you are on of 30mg seems extremely low. Is this your starting dose? You can get 15mg Tablets as well, so you could split the dose over at least 2 x per day. Although I find I have to split 3x per day. I also chew/ dissolve the tablets in my mouth, to allow for some sublingual absorption.

There is some useful info about Armour here: stopthethyroidmadness.com/

Oh- I also get aching legs and worse muscle weakness when hypo symptoms worsen, after upping dose!

Hope that helps and you start to feel better too.

norty1 profile image
norty1 in reply to Swissgirl

Thank you so much for your reply! I thought I was crazy about the leg aching. No doctor seemed to have heard that before. I had a suspicion that maybe it was an adjustment symptom but wasn't sure. I was on 1 grain (60 mg) of naturethroid for years without any issues but got messed up after it went bad. And my doctor lowered my dose to 3/4 of a grain when my tests came back with high FT3 which I suspect maybe have been due to the biotin I was taking. I do have 30 mg and 15 mg of Armour so I think I will try to increase it and not panic about the leg stuff.

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