Am taking Erfa and getting awful leg pains. - Thyroid UK

Thyroid UK

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Am taking Erfa and getting awful leg pains.

lizzie1
lizzie1

Am now on 2 grains of Erfa and it seems the more meds I take the worse the leg pains. My legs are very, very stiff, painful to touch and feel very weak.When I walk I feel like my legs dont belong to me. Am getting so disillusioned that I am thinking of going back to levo.

Was really hoping Erfa would be my saviour. Have worked slowly up to 2 grains and still feel awful.

My NHS endo said I would only need 25/50 levo and here I am taking 2 grains.

Really dont know what to think anymore.

16 Replies
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shaws
shawsAdministrator

I am sorry you are suffering more on Erfa. I know, too, that sometimes you may have to trial more than one to find one that suits.

I know how disappointed you are but sometime fillers/binders in some products may not agree with you and this is some info from STTM which may be helpful.

This is a link and an extract:-

THINKING NATURAL DESICCATED THYROID DOESN’T WORK BECAUSE YOU FEEL WORSE! In reality, what natural desiccated thyroid does is “reveal” two certain problems: adrenal insufficiency or low iron (both common in patients who’ve remained undiagnosed for years or were poorly treated on T4-only medications). You might find yourself with a high FT3 lab result with continuing hypothyroid symptoms (T3 pools rather than gets to your cells). Or experiencing anxiety, shakiness, fast heart rate, or other problems while on NDT.

stopthethyroidmadness.com/m...

The only NDTs I know of that are hypoallergenic is Nature Throid and Westhroid:-

nature-throid.com/

lizzie1
lizzie1 in reply to shaws

Thanks shaws My iron is ok but have got the kit to do the saliva test only to find out that if you have had steroids you have to have a 3 month wait till they clear your system.Had them for my frozen shoulder so cant test at the moment.

Am really thinking on giving levo another go. I feel worse than ever. Am taking more and more meds and my results hardly move.

shaws
shawsAdministrator in reply to lizzie1

As you are in so much pain just follow your instincts.

At least you can always revert to another NDT if you dont improve on levo.

Hope you feel better soon. You get despondent being unwell all the time with pain etc.

lizzie1
lizzie1 in reply to shaws

Thanks shaws.

Can you just swop straight over or will I have to start at 50 mcg levo and work up again.

shaws
shawsAdministrator in reply to lizzie1

A straight swop over. Let's know how you get on.

PinkNinja
PinkNinja in reply to shaws

I am so sorry! I accidentally clicked on the delete button (I don't know how. I was just typing. It's this mouse pad I think) and it just deleted it with no warning! I'm sure there used to be a warning box. I am so sorry :(

Here is the link you had posted anyway.

thyroid.about.com/library/d...

I have reported this to HU. There should be a warning box when you click delete. I'm staying well away today :(

I remember another member on here with leg pains on NDT, and she is now doing well on T3 only I believe - is this something you could try? xx

lizzie1
lizzie1 in reply to Clarebear

Really, really down about the NDT. Was really hoping it would work out. I am rather tired of doing things outside the NHS. Have paid out a lot of money to my privatre doc and got no where.

My endo had said no to T3 so think it will be back to Levo. Any idea roughly what 2 grains is equivalent to in levo?.

Thanks

Clarebear
Clarebear in reply to lizzie1

Sorry to hear that. / grains is roughly equivalent to between 150 and 200mcg of T4 only. Xx

Clarebear
Clarebear in reply to Clarebear

Oops - that should say 2 not / :D xx

Clarebear
Clarebear in reply to Clarebear

Oops - that should say 2 not / :D xx

lizzie1
lizzie1 in reply to Clarebear

Thank you x

waveylines
waveylines in reply to lizzie1

Hi Lizzie,

Sorry to hear that you are struggling on Erfa and getting lots of pain.

I take Erfa. Different NDT's do suite different people -this is why you will get different recommendations of which one to take....lol Sometimes people are affected by the fillers and these vary with different makes. I could not get on with Armour once it changed it's fillers for this reason and had to swtich. 'Stop the Madness' website has some useful info about all of this..

I agree with the others though that before you give up on Erfa and do another switch make sure that you have the other things known to help with uptake of thyroid hormones checked out. that is Iron, Folate, B12, Adrenals, Vitamin D, copper and zinc. I used to be very skeptical of the need to check these things out ( despite getting extremely good advice from the great people on this site....lol....sorry I didn't listen at first everyone!) but having finally done what I was told and then supplementing what I needed to i have been amazed at the difference it has made to my sense of wellness and uptake of taking my NDT - For me it was extra vit D3, B12 alongside taking a daily dose of the other B's plus folate......took about 2-3 months for it all to kick in and then amazingly enough I had to reduce my dose of NDT!!

I also agree with Shaws - she gives very wise advice - you do need to listen to yourself and if you feel that Erfa is a complete no no for you and is really not suiting you then switch, then check out the rest as above.

Finally Clarebear could well be right -some people only do well on T3 alone. I know two people for whom this is the case. They cannot tolerate T4 no matter what form it is in.

Hugs -I hope you feel better soon. . x

lizzie1
lizzie1 in reply to waveylines

Thank you so much for your reply. Really dont know which way to turn a the moment. Have checked all the usual - iron, vit d, b12 and all are ok. I take lots of supplements as well to try and keep on top of things. Am loathed to go back to levo as it gives me headaches. Just wish I could see some improvement with the Erfa. Maybe I have not given it long enough.My private doc has asked me to add 25 mcg of levo to my erfa. Am already getting the headaches with that small dose.My endo was not keen on giving me T3. Decisions, decisions.

shaws
shawsAdministrator in reply to lizzie1

Maybe your Endo would prescribe a trial of Nature-throid. I know another member who tried everything and in the end had to take purified levothyroxine which works with some nature-throid

waveylines
waveylines in reply to shaws

It's good Lizzie that you have the supplements all sorted -that means you can cross that one off! So changing NDT brands /and or T3/ plus checking out your adrenals.. seems to be the potential next steps. I do remember Shaws talking about someone else who did well on purified levothyroxine. Thinking about you.

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