Painful legs at night: My endo put me on 100mcg... - Thyroid UK

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Painful legs at night

PillJunkie profile image
38 Replies

My endo put me on 100mcg of Levothyroxine and 10mcg of T3 twice a day, three weeks ago to help me out of hypothyroidism. I'm also on a cocktail of drugs to help with my anxiety and depression, but there have been no changes with these.

Over the past five nights I've been kept awake by experiencing pain in my legs on three of the nights for no reason. The pain subsides fairly quickly once I'm up and about. I know that painful legs ican be a symptom of hypothyroidism, but it's strange that it should appear after I take steps to cure that condition.

Has anybody else had a similar experience?

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38 Replies
Buddy195 profile image
Buddy195Administrator

Leg pain/ discomfort can certainly be a hypothyroid symptom.

It can take several weeks/ even months to reach optimal thyroid levels; do share results with us when you retest levels after 6-8 weeks of being on 100mcg Levothyroxine. Ideally test:

TSH

FT3

FT4

Optimal key thyroid vitamins are also important; when were ferritin, folate, B12 and vit D last checked?

PillJunkie profile image
PillJunkie in reply to Buddy195

Thank you for your helpful reply.

I was tested for Ferritin, Vit B12, Vit D, as well as all the thyroid tests on 19 April. The first three were all comfortably normal.

I have another test in two weeks. In addition to the Thyroid test, I am going to be tested for Testosterone Levels, Follicle stimulating hormone level, Luteinising hormone level, Prolactin level, Cortisol level, Insulin-like growth factor.

The only one missing from your list appears to be folate.

Espeegee profile image
Espeegee in reply to PillJunkie

Sounds as though they're looking for a pituitary problem.

PillJunkie profile image
PillJunkie in reply to Espeegee

Spot on! Exactly what my endo said!

humanbean profile image
humanbean

Low minerals can cause cramp which can affect the legs. The minerals I have found that help me with cramp, muscle spasm, twitching etc are :

Magnesium

Iron

Potassium

Sodium

And one vitamin which has helped is vitamin D.

Magnesium can be supplemented safely by people with kidneys that work well. The kidneys excrete excess magnesium. Don't take more than it says on the bottle. Magnesium testing is unreliable, so don't bother wasting money on it.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Iron - Before supplementing with iron it is safest to have had an iron panel test to check for too much. But if you know your iron is fine, and you don't have too much iron, then buy some iron pills and just take one when you get cramp.

Potassium - For info on this, read this article and the comments :

drmalcolmkendrick.org/2013/...

Sodium - The only people who are likely to have low sodium are those on a low salt diet. If you want to supplement salt just put a small amount in water and drink it.

Vitamin D - This can be tested with a finger-prick test - one test is £31.00 :

vitamindtest.org.uk/

If you want feedback on a vitamin D test you can write and ask for feedback on here, although it isn't common for people to test just vitamin D alone - it is usually tested along with a thyroid hormone package of tests.

...

When I get cramp I attempt to get rid of it by taking the above things I've listed in the order I've listed them.

So, first of all I'll take magnesium, wait five minutes and see if the cramp goes.

If it doesn't I will take an iron pill, wait five minutes and see if the cramp goes.

Then continue this routine with the other things I've mentioned.

Personally I keep in stock the following : magnesium citrate, ferrous fumarate, potassium bicarbonate, salt, vitamin D3, but there are alternatives for several of these.

PillJunkie profile image
PillJunkie in reply to humanbean

Thank you for your thorough reply.

I take Magnesium, Iron and VitD, but not Potassium and Sodium. However, I don't get cramp; this is pain, mostly in my hips and thighs. Would these other supplements help with my pain?

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

What were actual vitamin results and ranges

How much vitamin D are you taking

Are you splitting the T3 as 2 x 5mcg or taking all together and at same time as levothyroxine

PillJunkie profile image
PillJunkie in reply to SlowDragon

My Vit B12 was 150. Range was 37.5 to 188

My Vit D was 160. Range was 50 to 250

I take Vit D3 8000iu per day

Yes, I split the T3: 5mcg at same time as Levo in the morning & 5mcg at lunchtime.

Thank you SlowDragon

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

I was on NDT, 3.5 grains per day. I was also on Levo before I started NDT at the start of the year.

So retest thyroid levels after 6-9 weeks on Levo plus T3

See how results and symptoms compare to when on NDT

Why have you changed from NDT ……did it not suit you…..or was it the cost

PillJunkie profile image
PillJunkie in reply to SlowDragon

My endo recommended it. He said that Synthetic Thyroid concentrates solely on T3, whereas NDT covers T3 & T4. He introduced Levo to deal with the latter.

Incidentally, I paid more for T3 than I did for NDT.

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

Which T3 were you prescribed

20mcg Thybon Henning liothyronine tablets dramatically cheaper than 5mcg or 10mcg by Morningside or 5mcg by Sigma Pharma

Most members on private prescription get Thybon Henning 20mcg

cut in half to get 10mcg or into 1/4 to get 5mcg

use sharp craft scalpel or pill cutter

Current NHS price paid

healthunlocked.com/thyroidu...

PillJunkie profile image
PillJunkie in reply to SlowDragon

It was dispensed into a bottle - no brand name. Supplied by Richmond Pharmacy. 8 weeks supply £67 (£1.17 per day). My 500 grains NDT cost £100 (66p per day). I'll ask my endo about Thybon Henning (who supplies them?).

Thank you for your help SlowDragon.

helvella profile image
helvellaAdministratorThyroid UK in reply to PillJunkie

You should always get a Patient Information Leaflet. If there isn't one in the bag, ask for one.

It is possible it is some form of "special" but the price makes that seem very unlikely.

Regardless, have a good look at the actual tablets - what markings do they have? My UK document lists all UK products including, so far as I could, markings on tablets. If you can't identify them from my document, post the details and we'll almost certainly manage. :-)

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

PillJunkie profile image
PillJunkie in reply to helvella

Thank you, helvella, that's very helpful indeed. BTW, the label on the bottle states: "Not licensed"

helvella profile image
helvellaAdministratorThyroid UK in reply to PillJunkie

There are some companies (one, two, maybe a few) who seem to produce oddities such as you are getting. They are supplied as if they a "specials" made for individual patients. But the company appears to make a batch and then supply them.

I can really understand that they can't make a batch of tablets for an individual. But I think they way they operate is at the borderline of acceptable in terms of the rules that exist.

You should get a Patient Information Leaflet of some sort with ANY medicine. I mean, let us say it contains an ingredient which seriously affects you. But you have no official statement of what the ingredients are. That will really help them to treat you in Accident & Emergency! That is, indeed, the extreme.

PillJunkie profile image
PillJunkie in reply to helvella

Yes, I will do what you say. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

Pharmacies should never supply a prescription without named brand and PIL (patient information leaflet)

List of specialist pharmacies here

thyroiduk.org/get-support/t...

Many members use Roseway or Smartway

cost of Thybon 20mcg is currently approx £60-£80 per 100 tablets

PillJunkie profile image
PillJunkie in reply to SlowDragon

Thanks again, SlowDragon, for a very helpful reply. I will ask the pharmacist for what you say.

PillJunkie profile image
PillJunkie in reply to SlowDragon

Thanks again, SlowDragon, for a very helpful reply. I will ask the pharmacist for what you say.

PillJunkie profile image
PillJunkie in reply to SlowDragon

I haven't been able to get hold of the pharmacy, but the pills have 1B printed on them. The prescription was for Thybon Henning, but the invoice just said Lyothyronine. As mentioned before, the bottle they came in says "Lyothyronine" and "unlicensed". Do I smell a rat?

helvella profile image
helvellaAdministratorThyroid UK in reply to PillJunkie

Henning Berlin has been part of the Sanofi Group since 1996.

Dosage Licence/Authorisation/PIP

20 microgram ZN 6085344.00.00

Side 1 Side 2 Diameter Thickness Weight Shape Colour

1 | B 1B 8 2.5 Round White

 (German) mein.sanofi.de/produkte/Thy...

 (English translation – out of date)

dropbox.com/s/ccfr0tnmr7nom...

Dosage Licence/Authorisation/PIP

100 microgram ZN 6085344.01.00

Side 1 Side 2 Diameter Thickness Weight Shape Colour

2 | B 2B 8.1 2.6 Round White

 (German) mein.sanofi.de/produkte/Thy...

 (German) mein.sanofi.de/produkte/Thy...

Screenshot of helvella's thyroid hormone document
PillJunkie profile image
PillJunkie in reply to helvella

Thank you for your hard work, helvella. My pills are 20mcg. So, despite having no PIL, and despite the bottle referring to them as "unlicensed" can I rest assured that I have the genuine article?

helvella profile image
helvellaAdministratorThyroid UK in reply to PillJunkie

Your description says that!

(I really doubt that any legitimate supplier would knowingly supply a fake!)

They are, indeed, unlicensed in the UK. But they are fully licensed in Germany and, broadly, the standards are very similar between Germany and the UK.

PillJunkie profile image
PillJunkie in reply to helvella

Thank you for clarifying.

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

So these are 20mcg tablets

Presumably you are cutting in half and only taking half per day

Many people find it best to split T3 as 2 or 3 doses per day

So 1/4 tablet - 5mcg waking and another 1/4 tablet - 5mcg approx 10-12 hours later

Is this what you have been doing?

Best way to cut into 1/2 or 1/4 …..

Use sharp craft scalpel

Mop up any crumbs with damp finger

Other people prefer a pill cutter……but much more difficult to gather up the crumbs

PillJunkie profile image
PillJunkie in reply to SlowDragon

I'm taking half a pill first thing and half at lunchtime: 20mcg per day. It has bothered me about the crumbs. so you suggest taking them at the time I do the cutting. Thank you for your help.

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

you said at opening post on this thread

My endo put me on 100mcg of Levothyroxine and 10mcg of Synthetic

Did you mean

My endo put me on 100mcg of Levothyroxine and 10mcg of T3 twice a day

PillJunkie profile image
PillJunkie in reply to SlowDragon

Yes, sorry.

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

I have edited your opening post to correct

SlowDragon profile image
SlowDragonAdministrator in reply to PillJunkie

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

NDT comes in grains. Generally, 1 grain is 60mg and contains 38mcg of T4 and 9mcg of T3. Some brands have 65mcg. Equivalence charts show that 1 grain of NDT has the approximate equivalence of taking 100mcg of levothyroxine. Ensure that you discuss dosages with your clinician.

So if you were on 3.5 grains - that’s roughly equivalent to 133mcg Levo and 31.5mcg T3

So your body is likely noticing a sudden drop in T3 and Levo

What were your Ft4 and Ft3 results on 3.5 grains of NDT

PillJunkie profile image
PillJunkie in reply to SlowDragon

Thank you for that. Yes, I will discuss my dosages with him. April 18 FT4 12.1; FT3 5.1

PillJunkie profile image
PillJunkie in reply to SlowDragon

It's the leg pain that's bothering me at the moment.

humanbean profile image
humanbean in reply to PillJunkie

Two other possible suggestions :

Another thing which could cause pain in the legs (and elsewhere) is peripheral neuropathy, which can have many causes.

en.wikipedia.org/wiki/Perip...

Another common problem is peripheral arterial disease (PAD) :

nhs.uk/conditions/periphera...

en.wikipedia.org/wiki/Perip...

PillJunkie profile image
PillJunkie in reply to humanbean

Thank you humanbean, I will read those with interest.

greygoose profile image
greygoose

10mcg of Synthetic Thyroid

Do you mean liothyronine (T3)?

I think there may be something either you or your endo has misunderstood. Taking thyroid hormone replacement - T4 and T3 - doesn't 'cure' hypothyroidism. It just replaces the hormone your thyroid can no-longer make enough of to keep you well.

Three weeks is not long enough for the increases in dose to take effect, so not surprising you still have your symptoms of anxiety and depression. But, given time, I'm sure they will. :)

PillJunkie profile image
PillJunkie in reply to greygoose

Yes, Liothyronine.

I realise that the drugs I'm on will take time to ease my various symptoms, but what's bothering me now is this sudden leg pain at night.

RedApple profile image
RedAppleAdministrator

'100mcg of Levothyroxine and 10mcg of Synthetic Thyroid three weeks ago '

I can't tell from your previous posts whether you were on any thyroid hormone replacement before this. Can you clarify please?

PillJunkie profile image
PillJunkie in reply to RedApple

Yes, I was on NDT, 3.5 grains per day. I was also on Levo before I started NDT at the start of the year.

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