I've been prescribed Erfa - A few questions..

[TEGS]

Hi Everyone..

After a long struggle, a Levo increase and still no change with my symptoms, my Endocrinologist has prescribed me Erfa (I know.. it is literally a miracle.. a sympathetic endo!) so I've come off Levo completely (thank God!) and am now on 90mg Erfa.

I've only been on it for 2 weeks and already starting to see some change. My reactions are sharper, mood is lighter, muscles don't ache as much.

But, has anyone made this change and found themselves absolutely freezing? All the time?

I've always had the 'feeling cold' part of hypo, but this is completely different. I'm literally freezing ALL the time. I'm currently sitting with 4 layers on in front of the fire and the room therm is reading 27 degrees C and my hands are like ice cubes and I'm shivering.

I have to go to bed at night with fleece socks, a jumper, a fleece dressing gown AND a blanket wrapped round me before getting under the duvet.. its quite funny, but weird as I would've thought my body temp would go up on Erfa.

I have no recent bloods to share since my last lot but I will be getting more in Jan before I see the endo again and they'll test Iron an Vit D again too.

Any thoughts or tips folks? Has anyone else had this crazy coldness?

Thanks for reading.

[shaws Administrator]

I think your dose might be too low for you yet. Usually, when starting NDT (the measurement is usually 60 or 65mg is said to be approx 100mcg of levo) some might feel the effect is about 75mcg levo.

When introducing NDT you can add a small increase every two weeks until you are symptom-free. If your pulse goes too fast or too hot you can drop to previous dose.

web.archive.org/web/2010103...

(I am not medically qualified and have hypothyroidism which was undiagnosed/untreated). I am now well on T3 only.

[lisabax]

When I started erfa I had a migraine like headache every day for two months but I stuck with it and haven't regretted it. I have ended up on 127 mg a day but it depends as Shaws says on what dose of thyroxine you were on. You may not have reached the optimum yet. I didn't feel particularly cold but it affects us differently.

[Hidden in reply to lisabax]

Lisabax, I read your comment and it almost sounded like I could have written it myself. I dropped Levo on 30th September, started Erfa on 1st October. I was also prescribed Erfa by an Endo in London.

He suggested taking 2 x 30mg daily in two separate doses = 1grain. I did this but at day 4 I felt very ill and had dreadful headache and a few other symptoms I hadn't had before. I asked questions and looked at STTM and couple of other sites and the conclusion was that the dose was (certainly to begin with) too high. So I reduced it by half, taking 1/4 grain twice a day. Symptoms abated straightaway. Over the next 8 weeks I built up in 1/8th grain (1/4 of 30mg) increments, but as soon as I got to taking a full 1/2 grain one morning. Symptoms returned.

So after taking advice, I sent for another saliva test (did one in early 2016 which suggested adrenals not good) and adrenals definitely stressed. So I'm sticking with the 3/4 grain total dose of Erfa until I've boosted adrenals a bit. I couldn't tolerate the symptoms I got from the increase. I have a full time job and just couldn't function at work, so had to do something.

Previously I'd been on 75mcg Levo for several years, tried an increase to 100mcg on two occasions (one earlier this year) but on both occasions undesirable symptoms crept in within a week or so.

My GP knows about the medication switch as I got referral to Endo from him (though saw a different Endo than the one they suggested) and said they would support with blood tests. So I had a blood test on Thursday and I asked the nurse would she enclose a note (which I'd already written) with the blood test. She said she would but no idea whether they would take notice of it. The lab where they usually send will only usually do TSH no matter what is requested. So I wrote a note explaining the medication switch and that it would be a good indicator of how the medication is working.

Much to my surprise, it looks as though they may have read my note and done the tests as I've been asked to go and see the GP because of results. I can access my online results and as suspected (because I'm currently underdosed) my TSH has risen just out of range, T4 has gone down (just out of range) and T3 isn't quoted but says 'borderline see GP'

I've had private tests done twice also over last year and all have revealed low T3 so not sure whether its the low T3 or high TSH they want to discuss.

I have a feeling that I maybe one of those people who just don't tolerate T4 very well and I may need to try adding T3. I ordered some a while back to try, but didn't use them in the end as I wanted to try and get a doctors support first.

Interesting to see Lisabax that those symptoms eventually went for you, well done on pushing through with them. I couldn't manage it.

[lisabax in reply to Hidden]

I was on T4 and T3 combo before going on to erfa so I made the switch overnight. My dose when on T4 alone was 175mg and my erfa dose is just about right for me. It's just a case of waiting to get that optimum dose and check blood levels regularly. I found my TSH went down to 0.01 when on T4/T3 and has remained at that level in erfa. If your has gone down like that it may be what the doctor wants to talk about. They often get spooked but it's quite common when on NDT. Good luck