Assessment by endo for T3

[TSH86]

Hi

I have been on T3 for eleven years.

I am being assessed by a Specialist Endocrinologist if they will continue to prescribe T3.

Am worried there may not be enough time to put my points across to the endo, if he is anything like the one I have been seeing who goes strictly by blood test results and not syptoms or how I'm feeling.

Would it be a good or bad idea to email some main points to him before attending the appointment.

I'm really worried if he takes me off T3.

Any advice will be much appreciated.

[diogenes Remembering]

You have been on T3 for 11 years. Your body has become accustomed to, has changed permanently to accommodate T3, and has been adequately treated I assume over all this time. To conceive of changing now say to T4 is unthinkable. The trouble with the medical profession in this discipline is that they think you can change medication just like that however drastic a change, and your body will immediately respond. This is totally irresponsible and wrongheaded. Resist at all costs a change to T4 only. Combination, perhaps you could deal with it if the T3 is kept up. The body isn't like a car: you can't change say from petrol to diesel after a long time on one fuel and expect no problems to ensue.

[TSH86 in reply to diogenes]

Thank you Diogenes and Aurealls.

Very good points, which I will convay( if I'm heard). I don't think I can reschedule the appointment as I was unwell for the last one.

Your example of petrol and diesel is great. My endo has desperately been trying to convert me over to T4 for 2 years now. My body simply cannot tolerate more than 25mcg thyroxine and even on that I just don't feel or look well but endo kept ignoring this at appointments so I put it in black and white in a polite email and have continued on T3

Cutting a long story short. My tsh was at 0.03 with all the tweeking the endo was doing so my gp suggested I reduce my T3 from 30mcg to 10mcg and come back for blood test in a month. My tsh was raised to 86 !!! I am now on 30mcg T3 and tsh has reduced to 12.01 in 3 weeks.

I have two questions and would appreciate any advice ( maybe will do a separate post)

- At what tsh level is there a danger of Myxoedena Coma

(I had facial swelling and felt extremely unwell)

- Will the Endo assessing me take it more seriously that I have a clinical need for T3.

Apologies if these last few lines have come up in bold writing. I don't know how to change it back.

Thanks

[diogenes Remembering in reply to TSH86]

Things have got to decline very far indeed to get myxodemic coma. TSH's are usually 50+ and FT4 down below 4 or 5 for this to kick in. The thyroid has to be virtually dead.

[trelemorele in reply to TSH86]

I've read about people with 200 TSH on diagnosis - in bad state but alive.

I've also read a post of a family member of a fairly young woman, I think around 30, whos post mortem diagnosis was "heart failure" who had TSH of 300 at the time of post mortem.

[Aurealis]

It’s a shame the appointment clashes with your holiday. Lots of luck xx

[TSH86]

Thank you for the replies, much appreciated. It was a frightening experience and feel reassured that I was treated immediately and am grateful that we can receive and share information on here.

[cookswife3]

In the U.S, when a patient asks for T3, the doctor IMMEDIATELY assumes that you want it for weight loss. Also, if you want T3, an endocrinologist is the WORST place to go! They almost exclusively use synthroid, even if it doesn't help you, and causes MORE HAIR LOSS and weight gain. Many people have resorted to ordering it online, either from mexico, or Thailand, treating themselves according to how they feel, and NOT telling the doc that you order your meds online. If you email the doc ahead of time, he/she may already decide NOT to prescribe it.

GOOD LUCK!

[serenfach]

You do not do well on T4, but are OK if just on T3 (if left alone on the right dose!). That by itself should be enough for the Endo to keep you on T3.

Ask them if your health comes before policy. It has to. Remind them of "first, do no harm". Good luck!

[TSH86]

Exactly Serenfach. I have attempted to take T4 eleven times in eleven years (possibly more ) as suggested by Endo at various doses/combinations with T3. Each time T4 is introduced I end up with debilitating symptoms and signed of sick from work etc.

I am ok left alone on T3 at the right dose.

The last time the endo tried to do yet another trial on T4, I simply refused.

This is about financial constraints and not a patient's clinical needs.

Appreciate "first do no harm" and health before policy.

Thank you.

[heathermr]

I am in the same sort of position having been on T3 only for over 7 years and its the only thing that I can take as I don't have a TSH at all probably due to pituitary failure after a head injury. My local CCG has decreed "no T3" so I have been sent to an Endo for assesment. Little does he know what is going to hit him in that appt because the answer is going to be a very firm NO T4, T3 ONLY. Been there, Done that, Got the teeshirt and the entire wardrobe and very nearly died because of T4. Never again! I have a bundle of evidence to back up my claim that I can't take T4 which I shall load into his lap as a starting point. I am fighting this all the way, I am not going to be told what does and does not work cos I am me, I know what suits me and what works for me and Nobody is going to tell me otherwise. Please go into this appt with lots of evidence about T3, be calm and confident, take someone close to you with you and don't let them bully you. They don't have to live in your body and live with the consequences of incorrect medication. One of the best pieces to print out is the NHS statement that T3 can be prescribed to those who have been taking it for a while. This is my passport to T3 and I don't see how anyone can deny you T3 if its written down that you can have it. I am still waiting for an appt to see the dreaded Endo, the longer I wait the more T3 I take, the less chance they have of taking me off it because the more evidence I am building that it works for me.

Good luck,

Heather

[TSH86]

Hi Heather,

Powerful stuff. Thank you. You have a fighting spirit.

We should not have to fight for a life sustaining medication that our medical history proves we absolutely need.

You said you have no tsh.

What is your tsh level ?

I have gathered a lot of information on my thyroid history. Blood test results, letters from Endos. My email stating i cannot tolerate thyroxine.The earlier Endos confirm I am unable to tolerate thyroxine but the recent endo doesn't although in one letter she states "This lady has bravely agreed to try thyroxine again" I could not bear to take it for more than 10 days. It's not a desirable existance in thyroxine (to put it mildly )

CCG statement says - in exceptional circumstances have an ongoing need for Liothyronine.

What worries me is that it is at the descretion of the endo to decide if my case is exceptional and that I may not be given enough time to explain my case.

I will do as you suggest and take all the evidence including ccg statement

and fight it all the way... So it's probably not a good idea to email the endo before appointment ?

I read the June 18 debate in the House of Lords on removal of Liothyronine and am writing to my MP.

I hope your appointment is delayed or vanishes !!! So you can continue on T3.

Good luck x x