Re: T3 - what dose are people on with combination T4?

[Guest guest]

Hi Gehanne

Can you let us know how much L-thyroxine and how much Lyothyronine you have been prescribed? When was your last increase and how soon after that increase you started to feel the effects of being hyperthyroid. What were the symptoms you were suffering at that time? If you are still suffering these symptoms, have you now decreased your dose of T3. If not, if this was me, I would definitely reduce the dose with immediate effect and let your GP know you have done this and the reason why.

It doesn't really help you to know what dose of thyroid hormone replacement other people are taking, because we are all very different, some take as little T4 as 50 mcgs or as much as 300 mcgs. Some take as little T3 as 5mcgs and others as much as 60 mcgs (or more). It is a question of titrating your doses until you find the one that suits your particular individual need.

Luv - Sheila

I take T3/T4 combination. Due to having been given too much T3 (liothyronine), I would like to know what doses other people are on with their T4. The doctor I saw would not listen when I said I felt overreplaced, even though I had a TSH of 0.05. Thank you!No virus found in this incoming message.

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[Guest guest]

Dear Sheila,

I was initially on 100mcgs T4. Three years ago, the doctor reduced

it to 50 mcgs and added 40mcgs T3. My results were abnormal (TSH

0.01, high T4 and T3), so the doctor prescribed 75mcgs T4 and 20 mcgs

T3, which I remained on for over two years.

I initially felt really good - very active and amazing powers of

concentration, but then I began to feel it wasn't normal - I had more

migrianes, thirst, couldn't sleep, loose bowels, itching at night and

I couldn't sit still, yet I was exhausted. Last year in July, I told

the doctor I thought I was having too much and he said the results

were fine. (TSH 0.05) I told him I could no longer exercise and

that I had had trouble climbing the stairs. He dismissed this.

Then at Christmas, I had the trouble that I posted on this site

before - had a cup of mulled wine, went ice-skating, had a severe

migraine and had to sleep, drank two cans coke on waking due to

severe thirst and then went back to bed. The next day, by the

evening I couldn't lift either leg. Then two days later, my right

leg had become paritally paralysed.

I have had a load of MRIs (all OK) since then and the neurologist and

two other endocrinologists I have seen think that excess thyroid

hormone triggered off possible low potassium levels (sort of periodic

paralysis)and a neurological mechanism causing pyramidal nerve damage

in my leg. BUT they won't commit themselves in writing because they

say they can't be certain and because it is so rare. I saw a top

thyroid doctor in London who did not deny that the excess T3 had

probably caused the leg weakness; he also mentioned rare myopathy. I

still cannot move my foot or toes, or walk properly, after 8 months.

Back in Jan, My GP denied my physio on the NHS, but the top thyroid

doc I have just seen, said I should have had intensive physio from

the start and proper rehabilitation. More annoyingly, I have not

been given a real diagnosis, just told I have spastic paraparesis of

the leg, mechanism causing it: " uncertain " , although I have been

advise to come off the T3.

Meanwhile the doctor I saw who didn't listen, now wants me to email

or phone him, or have a private meeting about what has happened, to

review the T4/T3 literature. I got copies of my medical notes and in

nearly all the letters to my GP, he states how unhappy he is about

prescribing T3 and how he find it hard to interpet the results!

Any advice would be welcome,

Gehanne

>

> Hi Gehanne

>

> Can you let us know how much L-thyroxine and how much Lyothyronine

you have been prescribed? When was your last increase and how soon

after that increase you started to feel the effects of being

hyperthyroid. What were the symptoms you were suffering at that time?

If you are still suffering these symptoms, have you now decreased

your dose of T3. If not, if this was me, I would definitely reduce

the dose with immediate effect and let your GP know you have done

this and the reason why.

>

> It doesn't really help you to know what dose of thyroid hormone

replacement other people are taking, because we are all very

different, some take as little T4 as 50 mcgs or as much as 300 mcgs.

Some take as little T3 as 5mcgs and others as much as 60 mcgs (or

more). It is a question of titrating your doses until you find the

one that suits your particular individual need.

>

> Luv - Sheila

>

>

>

> I take T3/T4 combination. Due to having been given too much T3

> (liothyronine), I would like to know what doses other people are

on

> with their T4. The doctor I saw would not listen

> when I said I felt overreplaced, even though I had a TSH of 0.05.

> Thank you!

>

>

>

>

> No virus found in this incoming message.

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> Version: 8.0.138 / Virus Database: 270.6.4/1617 - Release Date:

17/08/2008 12:58

>

[Guest guest]

Wow Gehanne - for a doctor to add 40 mcgs T3 at one go is unbelievable. I have never heard of anybody starting at such a high dose. Did he not warn you of possible consequences of palpitations and feeling 'spaced out' and all the other awful symptoms of overdosing with T3. No wonder you showed such results and he recognised you needed a reduction.

I think your story smacks of a possible 'cover-up' between the medical practitioners, as they do look out for each other. If your problems have been caused through being prescribed too much T3, then you need to get some legal advice from a medical lawyer, as they will know how to go about getting at the truth of what has happened. It is good that you have all your medical notes, and interesting that nobody will put anything down in writing. I would first consult with somebody at Patients Advisory Liaison Service (PALS) who should be helpful and refer you to Independent Advisory Complaints Service (ICAS) who will handle the full complaint, from writing the letter to going to meetings with you. If your questions are not taken care of then it should be referred to the Overview and Scrutiny Committee (OSC) that should be meeting locally and in public in some instances. You can find out more from the local library or ring directory enquiries. The OSC are a powerful body. They may refer your case to a legal team who would take this further, but you need to go through these people first. You should also get in contact with the local Patient and Public Involvement Forums (PPI) —there should be one in your area that meets in public. They are the lay people running investigations into the Health Service and have been appointed by parliament. PPI members can refer problems to the OSC.

It is very interesting that they have completely stopped your T3 now - did they tell you why they had done this? Whatever you do, look after your medical notes.

I am so sorry that you have had to go through this, and thanks for letting us know, and please let us know how you get on. Others on here may have a different slant on this and if so, please come and let us know.

Meanwhile, if you DO decide to meet with your GP - PLEASE TAKE SOMEBODY WITH YOU TO ACT AS A WITNESS TO WHAT IS BEING SAID. Do NOT send him an email or correspond by email. Emails cannot be used in a court and can be changed. In the same way, please do not speak with this particular GP on the phone - that too is only between you two. I would first get a free half hour with a solicitor to ask his advice about whether you should have any correspondence with this doctor in any way whatsoever.

Luv - Sheila

Dear Sheila,I was initially on 100mcgs T4. Three years ago, the doctor reduced it to 50 mcgs and added 40mcgs T3. My results were abnormal (TSH 0.01, high T4 and T3), so the doctor prescribed 75mcgs T4 and 20 mcgs T3, which I remained on for over two years. I initially felt really good - very active and amazing powers of concentration, but then I began to feel it wasn't normal - I had more migrianes, thirst, couldn't sleep, loose bowels, itching at night and I couldn't sit still, yet I was exhausted. Last year in July, I told the doctor I thought I was having too much and he said the results were fine. (TSH 0.05) I told him I could no longer exercise and that I had had trouble climbing the stairs. He dismissed this.Then at Christmas, I had the trouble that I posted on this site before - had a cup of mulled wine, went ice-skating, had a severe migraine and had to sleep, drank two cans coke on waking due to severe thirst and then went back to bed. The next day, by the evening I couldn't lift either leg. Then two days later, my right leg had become paritally paralysed. I have had a load of MRIs (all OK) since then and the neurologist and two other endocrinologists I have seen think that excess thyroid hormone triggered off possible low potassium levels (sort of periodic paralysis)and a neurological mechanism causing pyramidal nerve damage in my leg. BUT they won't commit themselves in writing because they say they can't be certain and because it is so rare. I saw a top thyroid doctor in London who did not deny that the excess T3 had probably caused the leg weakness; he also mentioned rare myopathy. I still cannot move my foot or toes, or walk properly, after 8 months. Back in Jan, My GP denied my physio on the NHS, but the top thyroid doc I have just seen, said I should have had intensive physio from the start and proper rehabilitation. More annoyingly, I have not been given a real diagnosis, just told I have spastic paraparesis of the leg, mechanism causing it: "uncertain", although I have been advise to come off the T3.Meanwhile the doctor I saw who didn't listen, now wants me to email or phone him, or have a private meeting about what has happened, to review the T4/T3 literature. I got copies of my medical notes and in nearly all the letters to my GP, he states how unhappy he is about prescribing T3 and how he find it hard to interpet the results!Any advice would be welcome,Gehanne

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[Guest guest]

Dear Sheila,

Thank you for your advice. I don't think I explained properly - it

is the private endocrinologist who originally prescribed the high

dose of T3, that wants to meet me to " review the literature " . Thank

you for the advice - I had thought of emailing him, but now I won't.

When he initially prescribed the T3, he said he was unsure about it,

but that he had two or three patients who had had life changing

experiences on it and was willing to give it a go. He said that one

of his patients is a pilot and because the results always look

abnormal with the T3, he takes the pilot off it, so that his results

can look normal for his health check. I trusted him at the time, but

now I think he didn't know what he was doing.

The GP is keeping well out of it.

The neurologist has stated in his letter that " the patient has

suggested thyroid imbalance is the cause and this is certainly a

possibility, but I feel the exact

mechanism must remain uncertain. "

The new endocrinologist I saw (a friend of my father's, who is also a

doctor and knows how the profession works), has said to me that as a

professional, he cannot state outright what he thinks, because they

can't be sure. Then in the next breath, he said he would like me to

take only 5mcgs T3 because my leg " needs the optimal conditions to

recover " , so he must know there is a connection. He tells me he is

not covering up for the other doctor. He wanted me to have an

independent opinion, which is why he orgnaised for me to see this top

thryoid doctor in London, who said I should come off the T3 altogther

and could not understand why the GP hadn't organised proper physio

and rehabilitation.

Basically, all involved have been trying to wash their hands of me,

because I am seen as trouble.

At the moment I am taking 100mcgs T4 and 5mcgs T3.

I saw a solicitor, but he said in order to take on the case, they

would need to employ a medico-legal expert to investigate my claims

and this could cost over £2000. I wrote to the director of the

hospital where the private doctor works and they are going to do an

investigation, but it probably won't amount to much. The private

doctor has already written to me twice and has not told the entire

truth in

his letters.

The complaints procedure that you suggest - is this just for the

NHS,or for private patients as well?

All I want is a proper diagnosis and cause, which I feel they know

and are denying me for medico-legal reasons and to protect

themselves. If they had just told me in the beginning that it was a

mistake; I was overdosed with T3, I could get on, but all this

secrecy has made me so angry! I suppose I could just try and forget

it, as I know myself what happened now, but that isn't really the

point. It might happen to someone else. My dad reckons I will never

get an apology becuase doctors never say sorry, as it an admission of

guilt, so maybe I am wasting my time writing to them.

Thank you,

Gehanne

>

> Meanwhile, if you DO decide to meet with your GP - PLEASE TAKE

SOMEBODY WITH YOU TO ACT AS A WITNESS TO WHAT IS BEING SAID. Do NOT

send him an email or correspond by email. Emails cannot be used in a

court and can be changed. In the same way, please do not speak with

this particular GP on the phone - that too is only between you two. I

would first get a free half hour with a solicitor to ask his advice

about whether you should have any correspondence with this doctor in

any way whatsoever.

>

> Luv - Sheila

>

>

>

[Guest guest]

Hi Gehanne

Could you write to me privately to let me know who this endocrinologist is so that if any of our members think of seeing him, I can advise them accordingly. I think he probably realises his mistake and it would be interesting to see what he had to say, or what action he is trying to take to wriggle out of this. You could always report him to the GMC and they would no doubt get at the truth there. When I think of doctors who have done nothing but good for their patients, yet have been reported to the GMC for stepping outside the bounds of mainstream medicine, this just isn't fair. This endocrinologist sounds far too dangerous to be let out. Starting anybody off on 40 mcgs of T3 is appalling.

I would be tempted to seriously think about this route. No doctor should be allowed to get away with what he has done.

Luv - Sheila

Dear Sheila, Thank you for your advice. I don't think I explained properly - it is the private endocrinologist who originally prescribed the high dose of T3, that wants to meet me to "review the literature". Thank you for the advice - I had thought of emailing him, but now I won't. When he initially prescribed the T3, he said he was unsure about it, but that he had two or three patients who had had life changing experiences on it and was willing to give it a go. He said that one of his patients is a pilot and because the results always look abnormal with the T3, he takes the pilot off it, so that his results can look normal for his health check. I trusted him at the time, but now I think he didn't know what he was doing. The GP is keeping well out of it. The neurologist has stated in his letter that "the patient has suggested thyroid imbalance is the cause and this is certainly a possibility, but I feel the exact mechanism must remain uncertain."The new endocrinologist I saw (a friend of my father's, who is also a doctor and knows how the profession works), has said to me that as a professional, he cannot state outright what he thinks, because they can't be sure. Then in the next breath, he said he would like me to take only 5mcgs T3 because my leg "needs the optimal conditions to recover", so he must know there is a connection. He tells me he is not covering up for the other doctor. He wanted me to have an independent opinion, which is why he orgnaised for me to see this top thryoid doctor in London, who said I should come off the T3 altogther and could not understand why the GP hadn't organised proper physio and rehabilitation. Basically, all involved have been trying to wash their hands of me, because I am seen as trouble. At the moment I am taking 100mcgs T4 and 5mcgs T3.

.. No virus found in this incoming message.

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