Sore Muscles

[HEA72]

Hi there, do you get sore muscles? Especially in the morning when you wake up? I do, like they've been dipped in battery acid. I'm wondering if this is part of a thyroid issue or something else? This sometimes reduces down with physical movement, at other times not.

[SlowDragon Administrator]

What are your most recent thyroid and vitamin results

What thyroid hormones and vitamin supplements are you currently taking?

[HEA72 in reply to SlowDragon]

Hi SlowDragon

I'm not taking any thyroid hormones now. I have the DIO2 gene polymorphism but found when I took T3 only it made me have the symptoms of hyperthyroidism and crashed me. NDT was the best for my body at 1 - 1 1/2 grains but over time I got side effects from that too. Levo was no good over 25mcg. So came off it. I still feel hypothyroid.

I'm taking multi vitamins and minerals (including those below). I'm peri-menopausal and wondering if low oestrogen and progesterone could be contributing to my symptoms along with possibly hypothyroidism. I'm looking into trailing body identical HRT.

Lab Tests Through Medichecks:

ferritin 51.2 (range 1-150)

folate 18.5 (range >3.89)

vit B12 (active) 150 (range 37.5-150)

vit D 130 (range 50-200)

TSH 2.53 (range 0.27-4.2)

FT3 3.67 (range 3.1-6.8)

FT4 14.6 (range 12-22)

thyroglobulin antibodies 12 (range <115)

thyroid peroxidase antibodies <9 (range <34)

[SlowDragon Administrator in reply to HEA72]

Having Dio2 gene doesn’t mean we can’t convert Ft4….it usually means that we need a SMALL dose of T3 prescribed alongside levothyroxine …usually as split dose 2 or 3 small doses spread through the day

Which brands of levothyroxine have you tried?

FT4: 14.6 pmol/l (Range 12 - 22)

Ft4 is only 26.00% through range

FT3: 3.67 pmol/l (Range 3.1 - 6.8)

Ft3 is only 15.41% through range

These results suggest you are hypothyroid

TSH is not responding correctly to low Thyroid hormones

suggest you reconsider trying levothyroxine

standard starter dose of levothyroxine is 50mcg

Retest in 6-8 weeks

approx how much do you weigh in kilo

Guidelines on eventual dose levothyroxine required is approx 1.6mcg levothyroxine per kilogram of your weight per day

we frequently need to increase dose levothyroxine slowly upwards in 25mcg steps over 6-12 months

Then consider adding T3 if Ft3 remains low once all four vitamins are tested and optimal

Multivitamins are never recommended on here

important to stop any supplements that contain biotin 3-6 days before any blood test

[HEA72 in reply to SlowDragon]

Wow thank you for your concise response, it's really helpful. I'll get my thyroid issue addressed in the new year. I'm getting a hormone saliva test done in the coming weeks (cortisol and sex hormones) and will book in with a doctor (private, so I can get thyroid addressed properly) once I have those results back. I'd like to consider NDT over Levo. Is NDT an option with my test results, would it work as well as Levo + T3?

Brands of Levo I've tried: Eltroxin and a generic (can't remember what as it was years ago)

I weigh 9stone / 57kg

The multi vits/mins I take is actually a mitochondrial support package rather than a multi-vit/min in one capsule. Why are multi vits not recommended here?:

Co-Q10

L-carnitine

B-complex

selenium

vit D3/K2

taurine

magnesium

zinc

omega 3 (algae source)

electrolytes drops

5HTP

[SlowDragon Administrator in reply to HEA72]

NDT suits some people

Others find it too much T3

Obviously NDT vastly more expensive than levothyroxine plus T3, so that’s also a consideration

You won’t get NDT on NHS …..you might (eventually) get T3 on NHS

Liothyronine over 60,000 prescriptions for T3 in England in last year

openprescribing.net/analyse...

Armour only 2000 prescriptions

openprescribing.net/analyse...

Erfa only 300

openprescribing.net/analyse...

[SlowDragon Administrator in reply to HEA72]

Many people find Levothyroxine brands are not interchangeable.

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

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. May 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

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

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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).

Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription 

healthunlocked.com/thyroidu...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime. 

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[HEA72 in reply to SlowDragon]

Super information, thank you very much.

[HEA72 in reply to SlowDragon]

Hi SlowDragon

I had an NHS blood test taken this month (December) they only took TSH for the thyroid testing part. My reading has now increased to 4.49 (ref range: 0.3-5).

My GP insists I'm not hypothyroid because I'm in range. She prescribed me HRT going on my symptoms only because there's no lab test to diagnose perimenopause. Yet my symptoms cross over with hypothyroidism but because the lab test says I'm just in range, hypothyroidism is being dismissed, not taking into account my symptoms. It is so frustrating!

I've booked to see a private doctor who specialises in both thyroid and female sex hormones, in hope I'll get a more educated and comprehensive response on my symptoms.

[SlowDragon Administrator in reply to HEA72]

So it’s likely your TSH will rise over the required TSH of 5 on HRT

Retest thyroid and vitamins in 6-8 weeks

Test early morning ideally just before 9am

(only have water before test)

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

[HEA72 in reply to SlowDragon]

That's interesting. Why does TSH rise when taking HRT? Does that mean I'll feel more hypothyroid if I'm not taking thyroid hormones too?

[SlowDragon Administrator in reply to HEA72]

it doesn’t always

If symptoms are due to low oestrogen/progesterone you might just feel better

If symptoms are due to struggling thyroid HRT seems frequently to result in needing more thyroid hormones

[helvella Administrator in reply to HEA72]

In case this is of some interest, HEA72

This is from British Pharmacopoeia 1973:

Preparing desiccated thyroid (Thyroid BP)