Fought for and won exactly what it says in Dr Tofts book....

[Jubileeuk]

I have to thank everyone on this site for their information - I have spent many hours just reading, and it all paid off

I am on 175mcg Levothyroxine and I had my first appointment with my endocrinologist this morning. My heart sank when she started telling me how they use TSH testing to determine treatment and only prescribe T4 as it has been proven to be the most effective treatment in the majority of cases. I argued back and forth for a few minutes about it being my body and my health and how i may not be in the majority. The only result from that i got was that they need to rule out all kinds of other things before they can say my symptoms are connected to my Hypothyroidism and THEN they will see if my TSH results are in range. Basically telling me that this is as good as it gets.

At this, i plonked down an excerpt from Dr Tofts book that states the ideal replacement tablet would contain about 100mcg T4 and about 10mcg T3. I could not believe the reaction...she read that and a bit more besides and then back-tracked to say they RARELY prescribed T3 but would let me try for 8 weeks before seeing me again. Meantime she would do blood tests to rule out other conditions. So i now have a prescription for Dr Tofts ideal mix. Pharmacy mixed it up though and gave me 20mcgs to take one daily, but that was easily sorted. So now, I am looking forward to seeing what happens. Even if nothing changes, at least i have been heard and tried something different. And its all thanks to the people on this site that i had the information and the courage to argue with a consultant.

One question though, does anyone have any idea what i can expect in the coming weeks if anything?

[Clarebear]

Hi Jubileeuk - wow great news Well done for going in so well prepared and for fighting your corner

I am on a combo of T3 and T4 (NDT) and am feeling so much better on it. I am taking 2.5 grains which I think is approximately 95mcg of T4 and 22.5mcg of T3. I see you were on 175mcg of thyroxine - how much have they dropped this dosage by with the addition of 10mcg of T3? Very roughly speaking I believe that T3 is approximately 4 times more active than T4, so 10mcg of T3 roughly equates to 40mcg of T4.

I have found it best to split my dosage into 3, but others may split it into more of less doses and some are OK to take all of the T3 in one go.

I think you may need to experiment with the timings of dosages, and you may end up needing more T3 than 10mcg a day - I hope the endo will let you increase this if necessary?

Good luck with it, hope it helps you as much as it has me Please let us know how you get on. xxx

[Jubileeuk in reply to Clarebear]

hi Clarebear, sorry if I wasn't clear. she dropped my T4 to 100mcg so that I will be taking exactly what it said in the book extract. Apparently though, they only make the T3 tablets in 20mcg so they have to be cut in half, but hubby's on his way to buy me a pill cutter as they are so small, without it I,d have been in A & E till my next endo appointment lol. And, thanks everyone for the congrats.....I really do feel like Wonder Woman just because I stood up to a doctor! Think its ingrained that they know best and its really difficult to get out of that mindset.

[Clarebear in reply to Jubileeuk]

I think you may need a bit more T3 or T4, as 100mcg of thyroxine plus 10mcg of T3 equates to about 140mcg of T4 only. An additional 10mcg on top would bring it to approximately 180mcg of T4. See how you go, but I think you may need a bit more, although we are all different

I have read that some people find it easier to completely crush the tablet and then split the powder into the requisite number of doses - worth a try if the pill cutter is struggling

Good luck and look forward to reading about your progress xx

[puncturedbicycle in reply to Clarebear]

Clarebear, I have PMd you about T3. x

[puncturedbicycle]

Wow! Good for you! I'm about to start 10mcg of T3 too, so I look forward to hearing how you get on with it.

[Hidden]

Well done Jubileeuk - all that reading did pay off - good luck with the combo and please keep us informed J

[shaws Administrator]

I am pleased you stuck to your guns. It is really amazing that most Endocrinogists do not know enough about thyroid gland problems thus they are unable to help us get well.

[Hidden]

I found the T3 tablets quite strong and cut 10mcg tablets in half-5 mcg in morning and 5mcg in afternoon. I prefer armour thyroid though.You may need either more T3 or T4 as we are all very different. Well done for holding out!!!

[Stuart]

That is great news and I really hope that the rest of the Drs follow this trend. ..... Its a positive move forward and I hope the medication does the trick.

I wish we had your endo here. I watch my wife come out of her appointments and she is so disheartened by the words or the lack of actions. ..... And i know its the same for most people on here! But as a patient you must convince yourselves that this time it will be different or find yourselves planning a strategy or researching. ...... I know I think to myself and I am not a sufferer or a patient that this time they will listen or it will be different....... But your story is that tiny little ray of hope well done

[Jubileeuk in reply to Stuart]

Thank you Stuart, I,m hoping to see some marked improvement because I got the feeling that if not, then I,m just going to be put back on Levo, but like I say, at least I will have been able to try it.

I,m sorry your wife is not having any luck, but you're right...as hard as it seems, you DO have to keep hoping that you will be heard. It's hard not to feel disappointed and let down though because it really is so unfair to be tested the way that they do without considering symptoms.

All the very best to your wife and I hope things improve.x

[mitchell66]

Can any one tell me the date of the latest edition of Dr Tofts book?

[Hidden in reply to mitchell66]

I don't know if there's a newer version, it's 'Understanding Thyroid Disorders' (2008) BMA Family doctor books, available at most chemists or through TUK here...

thyroiduk.org.uk/tuk/suppor...

(see page 48) J

[Petronella]

I have the 1999 edition of Dr Toft's book. I think GPs and endos take it seriously because it is published by the BMA! But my edition has nothing about combining 100mcg T4 and 10 mcg T3. I am now on 125 mcg T3 daily, but due for another blood test in 3 weeks to see if this is the right dose - perhaps I should suggest to my doctor that I try the combination?

Well done JubileeUK for standing up for your rights! After reading what others have to say in this forum, I realise how lucky I am to have a nice GP who listens to me!

[PoppyRose]

Oh what courage!! Well done you and good luck with your latest medication changes - keep us all informed please.

PR x