Just got back from Salisbury Hospital, thanks t... - Thyroid UK

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Just got back from Salisbury Hospital, thanks to Cinnamon Girl for recommending this Endo! i could cry lol!!

Waynester profile image
26 Replies

UPDATED MY POSTING: Here is what i had blood taken from me for, any of it make sense?

Just got home from Salisbury Hospital here in the UK, I asked to be referred to this Endocrinologist and he was fantastic, drove a 136 mile round trip, never ever been treated in such an understanding manner by any GP or other Endo, i had lots of blood taken and a urine sample given, he is wanting to try me out on T3, 60mg for 6 months and at 40 years old this year, i want my life back! maybe i will get it finally?

diagnosed in February 2012 with Underactive Thyroid, but obviously have had since an early age as been feeling horrible since age 15

i am on 100mg of Thyroxine and it has done NOTHING to how i feel in the last 12 months, i feel depressed, no energy, suicidal, always tired, brain fog and confusion, and other stuff going on, even had therapy and counselling given to me by GP!

i printed off all my blood test results from previous tests.. he looked through them all, gave me a physical exam.. he actually listened! and he didn't say what has been said to me ALL my life, "well your TSH levels are normal, so nothing we can do" i am hoping i will start enjoying life again, anybody else on here had their life changed because of T3 taken along with Thyroxine? what were the benefits? here are my blood test results from a few weeks ago, i dont really understand them all :-(

there are other test results from previous times if it can help shed light on anything?

s371.photobucket.com/user/B...

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Waynester
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26 Replies
Marz profile image
Marz

Good news - just hope you were given advice as to how you should take the T3. Was your T4 reduced ? You didn't mention these points....am just being cautious. Am sure you were too excited to mention the finer detail !!

Wishing you well soon....

nobodysdriving profile image
nobodysdriving

WAYNESTEEEEEEEEEEEEEER

I'm SO happy for you I could hug you if you were in front of me!!!

well done you for not giving up when it was just so tempting as life as not been much more horrid before or never 'as' horrid before, I remember the bad times you've been through, I am so happy things are looking at a better direction now, here's to a new/fresh chance.

we're 'rooting' for you xxxx

Waynester profile image
Waynester

Yeah, sorry! i was excited ha ha ha

the Endo asked me lots and lots of questions

i told him about my sleep patterns and how i never feel refreshed after sleeping

and that i wake up during the night most nights, how i`m exhausted all the time,

even more so after going to the gym 3 or 4 times a week (90 minute sessions) and then crave sugar after exercise

falling asleep in the daytime etc

also how i have carpel tunnel syndrome symptoms, numbness and tingling in hands and wrist area

even though i have had the tests done by a specialist and he says i don't have it

he didn't say how much T3 he would give me, infact... he wants to see all my blood tests first

hope he don't change his mind! he also said that he MAY reduce my 100mg of Thyroxine, but didn't say to how much

my list of symptoms are as long as my arm!

fingers crossed

nobodysdriving, yes please! i would love a hug!!

just been dumped by my partner after 3 years, my depression and up and down moods ruined everything

but it doesn't help that after counselling and therapy for this, i still don't feel any better

i suffer with this and it is terrifying, ruined every relationship i have been in

my ex wrote this as she was the only person that supported me and understood me, guess she changed her mind

nomorepanic.co.uk/showthrea...

i am not sure Thyroid plays a part in it? who knows? !

but i`m sure i just want to feel better emotionally, mentally, and physically x

healths profile image
healths in reply toWaynester

visit n m p (no. more panic ?) at your own risk. Before you googled and clicked on that website, you probably never met ppl with mental and physical issues as the ones who own and run that site. some of the issues are by choice, some is nature.

Just sharing the name as it was shared with me! Good to meet you briefly today Waynester and what a coincidence that we had appointments on the same day.

Good luck with the T3 and it may be an idea to start a new post re taking thyroxine and T3 together?

Hang in there!

Waynester profile image
Waynester

lovely to meet you today too! how refreshing to chat about symptoms and how we will rule the world and beat this lol

today was worth the drive, i met a nice Endo and i gained a new friend :-)

keep in touch xx

keeponbelieving profile image
keeponbelieving

Hey there,

Totally understand what you describe and glad you are getting some proper help now! If you do get the T3 try and read Paul Robinson's book first if you can. When I started on the T3 I had to get all the useless levothyroxine out of my system first. It took about 6 weeks to do - despite my TSH having been "normal" for 10 years i was not converting the T4 to the active T3 - so was still feeling like you !

Basically my body was trying to get rid of it - and I was getting more and more toxic...I knew I needed something but could not understand why the doctors kept telling me I was okay when clearly I felt AWFUL. Lost my job/friends etc etc.

When you start on the T3 there are still things that need to be optimum in your body - like ferritin levels/vitamin D/ vitamin B12 etc - but the book will explain all this. Also - start low and go slow....60mg is a high dose...I would have bounced off the walls and given up...it took me ages to build up to 20mg!!!!

I know we are all different and your body has been on a journey to break down and it will take a journey to heal - so get all the facts and learn all you can. People on here will help - and the right professional too! Good luck!

Waynester profile image
Waynester in reply tokeeponbelieving

thanks for that, but why has this Endo not told me i need to come off Thyroxine? does that mean i am stuck on it forever?

Marz profile image
Marz in reply toWaynester

.....you mentioned in your post at the beginning that you asked about others taking T3 with Levo. Hence I asked the question - were you told to reduce your T4 when adding in the T3. No response. T3 is four times more powerful than T4. If you are going onto T3 only - then you surely need advice from your Endo. Also the dose you have been given is - in my non-medical opinion - too high as a starter. For most of us it needs to be introduced in small quantities and slowly - unless of course you were given better advice which you are happy with. I agree with the above post re dosage....

Take a look at Paul Robinson's website rwt3.com and have a read. I am T3 only - having started with T4 then T4/T3 - it is a journey and needs careful planning...and possibly lots of adjustments.

No you are not stuck on it forever.....

keeponbelieving profile image
keeponbelieving in reply toWaynester

You need to get hold of your thyroid results to understand what is happening with you. Do you have your latest results..all it said on your form was "satisfactory". The lab puts that on if your TSH is "in range". But you need to understand the whole picture...T4/T3/Antibodies etc.

My TSH was "normal" according to them - but a lovely g.p. was determined to get to the bottom of all my problems and found out my T3 was practically non existent!!!!

It was only then that the NHS Endo agreed to a trial of T3. I have been on T3 only now for 2 years and I am much improved - I have my life back - but it is still a learning experience.

It is easy to go over/under - I have Hashimotos - and have to monitor myself carefully.

Continue to fight for your health!

Waynester profile image
Waynester

oh! forgot, he wants me to have a synacthen test??

shaws profile image
shawsAdministrator

I am happy for you and do hope T3 will be the meds to give you a good quality of life.

Waynester profile image
Waynester

i am happy still - but now worried about side effects and when and how i take T3 and the fact i`m still taking Thyroxine, is that still needed? i am reading that T3 is the best and that Thyroxine isnt really needed..........aaarrghhhhhhhh very complicated getting it right?

PinkNinja profile image
PinkNinja in reply toWaynester

It's different for different people. Some are best with some thyroxine, others are best with t3 only. The only way to know is trial and error. I suspect you will start to feel some improvement once you start the t3 but you may need some fine tuning to find the right combination for you. I'm a t3-only lady but I know others that find they need some thyroxine too :)

I'm very excited for you. Hopefully you will notice a difference very soon. Mental improvement was one of the main things I noticed when introducing t3 (in the form of NDT back then). I now no longer need any psychiatric medication at all for the first time in over 20 years!

Please let us know how you get on, and do ask if you have any questions :)

Carolyn x

Chippysue profile image
Chippysue

This is just fabulous, you will no doubt be keeping us updated as you gradually increase your T3. How refreshing to hear about a nice sensible Endocrinologist! Please would you drop a line to Lyn by private message or email as Lyn and Louise keep a list of Endocrinologists recommended so they can tell others in the area.

Onwards and upwards now!

penny profile image
penny in reply toChippysue

Hi Suze, may I have a list of the endos., who are sympathetic. My GP has just stopped my 140mcg of t3! Thanks.

Chippysue profile image
Chippysue in reply topenny

Penny, please email Louise at the Thyroid UK office louise.warvill@thyroiduk.org :-)

PinkNinja profile image
PinkNinja

That is fantastic news!!!! I am so happy for you!

I take t3 on its own but I am so much better on it than thyroxine. Hopefully you will be soon too :)

Is it a private or NHS endo? I may have to get his details once I've saved up enough :)

Really, really happy for you :)

Carolyn x

Waynester profile image
Waynester in reply toPinkNinja

its an NHS Endocrinologist, not Private

recommened to me by CinnamonGirl, and i feel at ease with him

Paul Robinson has just replied to me on his YouTube channel and now i`m even more scared

i dont have the money to buy his books! i`m skint, so his comment doesnt help

he says

Wayne - Read my book 'Recovering with T3' before you start using T3. T3 is hard to use and it needs to be done carefully. Take a little time to read it first. You could also do with an adrenal saliva test also - see Chapter 3 of the book. If you have low cortisol levels according to the ranges that thyroid patients have found to be important to consider (see Chapter 3) then you may also want to get my second book 'The CT3M Handbook' as this will give you more information. Some prep work will save time.

great, now i`m worried about it being hard to take and use :-(

PinkNinja profile image
PinkNinja in reply toWaynester

Please don't worry about it. I haven't read them and I'm doing fine. If you really can't afford the books, don't worry for now. The trick is to build up slowly. Perhaps start with a small dose first thing in the morning and see how you go. If you're fine with that, the next day you could try a small dose in the morning and another small dose in the afternoon. After a week or two at that dose you can increase again.

I started with 12.5 in the morning and afternoon and gradually increased. I'm now on 25mcg four times a day. The good thing with t3 is that, if you have a reaction, it is usually short lived due to the short half life of t3.

If you have adrenal issues, then is probably the time to look at Paul's book. For now, just take it easy introducing the t3 and you should be fine. Keep an eye on your symptoms and your temperature and pulse and you should have nothing to worry about. You just need to be very mindful of your symptoms and any changes you experience when taking each dose :)

If you have the funds at a later date, you could always invest in the handbook.

He is right about the cortisol and iron making things more tricky but if you have those pretty much sorted out you should be ok. Luckily for me, I had those sorted out so I didn't have any problems.

You can always ask questions here too and we will do our best to help you.

Carolyn x

Marz profile image
Marz in reply toWaynester

...don't be worried - I did suggest in an earlier post that you could look at the website rwt3.com and I am sure by reading all the blogs and articles you will learn masses about Paul Robinson methods. No need to buy the book.....

Stourie profile image
Stourie in reply toWaynester

Hi, I am so pleased for you the way things are starting to go now. If l remember correctly Thyroid UK has a library that might be worth looking into. Take care

Jo xx

dimdims37 profile image
dimdims37

How fantastic! Just read your post and it's so good to hear and also gives so many hope too :)

Anyone know if Endo in Inverness is any good ?????

Clarebear profile image
Clarebear

So pleased to hear this news waynester :) I am taking NDT which contains T3 and T4 and it has given me my life back :) As others have said - take things slowly and hopefully you will see an improvement soon xxx

whackythyroid profile image
whackythyroid

That is fantastic news, so pleased for you. I am now on NDT and feel a big difference, I felt awful on levo. I felt a bit nervous at first too but i thought about it and it couldn't make me any more ill than i was taking the levo. I think everyone gets a bit anxious taking new meds but on the bright side you could be on the way back to getting your life back, woooppeeeeeee :-) xx

penny profile image
penny

Hi Waynester, are you able to pm me the name of the endo., please? I live in Salisbury and my GP has stopped all of my t3.

Thanks - and great news.

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