This may sound strange.....

[Tony63]

If you have low level T4 and T3 (11 and 4.4) is it possible that you could be over-medicating on 1 grain of Erfa?

[Jackie]

Hi One grain is not much. You need a repeat test, TSH, T4 and Free T3 + ranges a month after being on the med.You can pay cheaply for them ,if want details get back to me.I am treated by a good endo on low T4 and very low FT3, TSH cannot be measured. This has been the case for many years. Sometimes, low tSH may be Pituitary gland, so that always needs ruling out, I am assuming that is why you are asking? i have to have my FT3 right at the top of range to feel OK.If you want to get back to me cck on "reply to this" under my post or I will not know.

Jackie

[helvella Administrator Thyroid UK in reply to Jackie]

Jackie,

I assume that you mean the Thyroid UK list of private tests here:

thyroiduk.org.uk/tuk/testin...

Rod

[Jackie in reply to helvella]

Actually, I was hoping in this case the GP would do the required tests, which is why I did not feel at this stage to give loads of alternatives.Otherwise I would have given them. The main thing is to try and get a GP to do them, simpler!

Jackie

[shaws Administrator]

This is an extract

Hopefully the endocrinologist won’t keep your Armour dose too low. He most likely will, however, if he adjusts your dose according to your TSH and thyroid hormone levels while ignoring your clinical response to a particular dose. To get well, some patients must use Armour doses that are high enough to produce TSH and thyroid hormone levels that upset endocrinologists. But the lab values are meaningless in themselves, as long as a patient isn’t overstimulated and has gotten well from her hypothyroid symptoms. What's truly harmful is for a doctor to keep a hypothyroid patient’s dose too low strictly for the sake of predetermined lab values.

web.archive.org/web/2010122...

[Hidden in reply to shaws]

Thank you shaws. I wouldn't like to keep my dose low ( Tony's question was in regards to me), however I find it difficult to increase the dose.

Thank you for links. They are always a good read.

E xx

[Clarebear]

Hi Tony - I am assuming you are refering to Edysia's dose? I think she is under-medicated, but her adrenals are possibly weak, so she is getting unpleasant symptoms when she tries to increase. This was the case with me too. I think it would be worth doing the adrenal saliva test for adrenals to check and then if this is the case she could try the CT3M. xx

[Hidden in reply to Clarebear]

Hi Clare. Thank you for your reply. Tony is referring to me. I am having days ( lots of them) when I can't write, so Tony is helping me.

I woke myself up 4 hours before my usual waking time( I set an alarm but I woke up any way) . I took erfa at 10am and as on previous attempts I can't go back to sleep.

I am not able to do saliva test at the moment( from obvious reasons ) however I assume that my adrenals are tired. I don't really know if CT3M works if you can go back to sleep after taking morning dose?

E xx

[Clarebear in reply to Hidden]

Hi Edysia - I did have trouble going back to sleep after my early morning dose. Paul told me that this didn't matter, so long as I am resting in bed, the cortisol can still be made. He told me that in time my sleep would improve, and this has been the case. It's not perfect by any means, but much better and I do usually dose off again after my early dose now. He recommended that I start 1.5 hours before my usual get up time, with 1 grain. I found this to be too much and felt hyper - think I was on 1.25 grains in total at that point. He then suggested 1/2 a grain, which did not have enough of an effect. I settled on 3/4 of a grain being the right dose for that time. The improvement in my symptoms was very quick, and I was soon able to increase my dose without the usual horrible symptoms that I got.

I have since increased my CT3M dose to 1 grain and am on 2.5 grains in total. This feels about right, but I think I might still need to do a bit of tweaking.

It might be worth you joining the T3 only facebook group, which is the one that specialises in CT3M for people on T3 and NDT. I had alot of help from Paul R himself and other very knowledgeable people on there. Here is a link. It is a closed group though and you have to wait to be approved:

facebook.com/#!/groups/T3on...

The other thing to think is that your adrenals will gradually improve as you up your dose. So long as you take it really, really slowly they will most likely catch up. The CT3M seems to be a way of speeding this process up a bit.

Good luck and you will get there in the end I'm sure xx

[zizi in reply to Hidden]

Hi Edysia

When I started taking an early dose I took quarter grain. I just couldn't get back to sleep. Paul suggested I increase so have taken half grain since and I do actually go back to sleep. As I said to Tony yesterday I have had to mess around with the timing.

How much do you take for the early dose?

Xx.

[Hidden in reply to zizi]

I just wrote long reply to you and Clare and it all disappeared. I am typing on my phone. I am so sick.

E xx

[Clarebear in reply to Hidden]

Oh Edysia - that is so frustrating for you - I hate that when it happens to me Hopefully you can write it again?

Clare xxx

[Hidden in reply to Clarebear]

Hi Calre. Thank you. Trying to type again, using my phone.

I doubt that I will ever recover. I haven't been so ill as I am now in my entire life. I will carry on with CT3M. I don't know what else I can do.

I wish I have my family, but they are gone. I won't get better. I rely do not know where to turn for help.

E xx

[Clarebear in reply to Hidden]

Hi Edysia - I know it is hard but please try and stay positive. I really felt dreadful when I started NDT last year and got worse before I got better. Your dosage is still too low and you will feel better when you get your levels up, although you may have to fight the adrenals on the way up. Has your supply of Erfa arrived yet? Xxxx

[Hidden in reply to Clarebear]

Hi Clare. Erfa didn't arrive on time. Tony needed to meet the guy from Springfield pharmacy on Saturday( far away from where I live) They gave me 14 tablets, yet yesterday or today my original package with my medication is still not here. Spriengfield is going to send another one. We paid for next day delivery last Wendesday. Must be Easter or permanently bad luck..I have some tablets with me however I feel much worse than I felt last week. Still on 1grain. It's been 2 months since I started to take erfa and there was no improvement at all( only one, single day when I felt better). I began to think that NDT is not for me. My blood tests are slightly worse then at the time when I was on no medication. I don't know what's going on. I hardly go out, yet I catch throat and sinuses infections all the time...

Exx

[Clarebear in reply to Hidden]

Well maybe NDT isn't for you, but I don't think you know yet, as you haven't raised your dose high enough to feel the benefits yet. I know it is hard but I think you need to stick with it and gradually increase - the CT3M may help with this. If when you get to decent levels, you still don't feel well, then I think it would be worth considering other options eg t4 or t3. Xxxx

[zizi in reply to Hidden]

Hi Edysia Don't worry . It's still good to hear from you if only a few words.

x

[Hidden in reply to zizi]

Hi zizi. I took 1/2 gr, 3.5 h before waking. Started Ct3m yesterday. Have another throat and sinuses infection. I never was so ill in my life. I wish my parents were here to help me but they passed away.

I can't see dr in my surgery. I hate them all, they did more harm than good. I can't see light at the end of this tunnel.

E xx

[zizi in reply to Hidden]

Hi Edysia Thanks for getting back. I do understand how you feel, really. I've had a bit of a setback yesterday and today so even now it can be so frustrating, but after a few tears I make myself think back to how ill I used to be and how far I have come and I hold onto that thought. You will be able to do that aswell once things start to work for you.

It is sad that you no longer have your parents. I too have lost my parents and my brother died at 42. My sister will not see anyone because she is ill, with what I am certain is hypothyroid. Her husband died three years ago, whom I also miss very much as he was like a brother to me. I haven't been able to see her for nearly 3 years and miss her. This all makes me very sad. I do have a loving husband and my immediate family including grandchildren, but I still feel so sad. Especially for my sister who refuses any help and whom I know could feel so much better with the right help.

Just keep on turning to the people here for help because we all care and you will eventually get better. Keep on believing that. It will take time and there will be setbacks, but things will improve. One day we will all win this fight. Gradually we are winning the little battles and our day will come. Hold on to that.

x