NDT should I increase or not?

[zizi]

Hi I'm currently on two and three quarter grains of Erfa NDT having very slowly increased since last July after seeing Dr S. Tried Levothyroxine, but needed T3 aswell. Have been feeling pretty good. Had my blood tests at GP practice (only thing they will allow on NHS) and stupidly forgot to leave off my 5a.m. dose of half grain which I am sure affected the result of my Free T3 which was 12.0 (3.9 - 6.8 scale).

Free T4 was 19.3 (12.0 - 22.0 scale)

TSH 0.2 (0.3 - 5.5 scale)

When the results were sent to me by email the GP was concerned enough to point out that I was outside range, but was not concerned enough to allow another blood test even when I let him know that I had made a mistake. To be honest even if I went to see him he would almost certainly give me a lecture and wouldn't know what to do anyway. Dr S said it was very likely that the early morning dose gave the high reading although my Free T3 reading in December was high at 7.5 and I wasn't taking an early morning dose then.) Dr S checked me out and took my blood pressure and temperature and said absolutely fine. He said to continue and have my blood checked again in a few weeks.

Prior to seeing Dr S a couple of weeks ago I did try reducing the dose to two and half grains a day, but I felt awful so I have stuck with two and three quarter. Trouble is I am feeling like I need to increase as I am aching again in my shoulders, arms and legs and I'm feeling tired. Suddenly the last few days I have been getting out of breath when going upstairs or uphill which I haven't had at all for months now. Over the last couple of weeks I have had a few slight trembly feelings and very, very minor shakes which have dwindled to just occasionally and these sort of feelings I have always associated with overdosing.

I just don't know what to do. If I hadn't had the blood test result I would have just increased, but now I'm worrying.

x

[PinkNinja]

I'm sorry I can't really help but I wondered if you were able to call Dr S and ask what he advises. It is such a tricky thing as some of the symptoms can be the same for both hypo- and hyperthyroidism. I am currently wondering if I should decrease my dose due to symptoms I haven't previously experienced but I am not sure if this is what "normal" feels like as it has been so long! I still feel slightly hypo though so part of me is wondering whether to increase again. It is so difficult for some of us to find the right treatment, isn't it!

I really do think Dr S is the best person to ask about this, although there are many people on here taking NDT who may be able to share their experiences and perhaps make suggestions.

I hope you find the answer soon!

Carolyn x

[shaws Administrator]

Before the TSH blood test came in patients were dosed according to symptoms and Dr Lowe has said the usual dose was 200mcg-400mcg, Holistic doctors dose until you have improved and are not overstimulated (you would certainly know very soon and reduce/miss next days dose).

If you cursor to July 15, 2006 and it may be helpful. and also August 13, 2002

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

.

[zizi in reply to shaws]

Thanks Shaws. I've read both of these and found them reassuring.

[zizi]

Hi Carolyn

Thanks for getting back. Gosh one minute I'm feeling great and then seem to go back a few steps. Overall though I'm so much better than when I first saw Dr S. Trouble is I forget just how ill I was and I have to make myself think back every now and again just to see how far I have come. I have sent an email to Dr S, but even though his staff are great I know it will be some time before I get a reply. I actually feel fairly good and the anxiety and negative thoughts have really eased. I'm so grateful for that I feel I shouldn't even be moaning, but you know what its like when a few annoying symptoms start creeping back in. You find yourself thinking should I increase, should I decrease aaaargh!

I know Dr S will get back to me, but I also know how busy he is and it is a case of waiting for answers. With no support from my GP at all it can get a bit lonely and if it wasn't for this site and the people I have met at the Bristol Support group I don't know what I'd do. I have learn't so much about taking NDT and the right doses etc from people on this site and TPA UK, simply because it's been the only way. Trouble is I have found that things change so regularly on NDT whilst trying to get the right dose that if I only had Dr S to rely on I would be contacting him every few days!

Good to have someone to talk to though so thanks and I agree with you that I have felt ill for so long it is difficult to know exactly what normal is. I'm always saying to my husband "do you feel this way. Is this normal or not?" Poor guy. I always expect him to have all the right answers!

If anyone else has any suggestions please feel free to let me know.

[PinkNinja in reply to zizi]

I can definitely relate! I am having a similar issue, although different symptoms, at the moment. Is this just what normal feels like?