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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PillJunkie
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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?
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.
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.
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 :
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 :
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.
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?
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.
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?).
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.
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.
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.
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?
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?
(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.
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.
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
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.
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