Endo wants to reduce my T3 dose but I think I need an increase. Don't know what to do now????

[DeniseR]

I won't go into my whole history as it's too long. I haven't been on here much for a while, due to feeling much better and finally being able to live a full and busy life for a bit.

I've been on 50mcg of T4 for a few years, anyway this wasn't working, diagnosed with CFS/Fibro etc. After lots of pushing and perseverance managed to get the endo to see I had an issue and he suggested I might have a reverse T3 problem, so prescribed T3 for me at 5mcg(1/2 a tablet each morning) along with my T4. I take my T4 at night and T3 in the morning.

There was an amazing difference and I couldn't believe how well I felt. However, I think I made a mistake but doing too much too soon, especially as I started running 5k everyday again. I started to feel the familiar ache and some tiredness return, so in a panic, I stopped all exercise again. After a few weeks I was concerned my symptoms weren't going(although still nowhere as bad as before), so I contacted the endo asking if I could increase my dose. He asked me to try taking my T3 at 10am rather than 1st thing, as this often works for some. I did this for 2 weeks(as he suggested) but it didn't make much difference if any, so I increased my own dose, taking 10mcg in the morning and 10mcg in the afternoon. This did improve my symptoms and I felt much better although still not as well as I did when first taking T3, I felt it was good enough for now. I continued the higher dose for about a month, then told my endo as I was worried the gp would question my more frequent prescription request.

My endo has now said to stop the higher dose immediately as due to my TSH, I risk Osteoporosis and irregular heart beat (which I already have, I believe form being unmedicated for so long). He wants me to go back to 10mcg for 2 weeks, then have a blood test. I managed to convince my GP to let me have a blood test whilst on the higher dose, then I have lowered my dose but apparently have to wait 8 weeks before they will test again. I thought at least this way we might be able to see any difference between the dosages. 4 days of being on the lower dose and palpitations have returned along with fatigue and aching.

I think my dose is actually quite low compared to some and I would benefit from an increase, how can I argue this with my endo?(I'm worried he'll take the T3 away all together). Also, is there evidence I can take at my next appointment from a verified source that he will take notice of, regarding the irrelevance of TSH. he has said he cannot treat me by symptoms and has to look at my TSH. He also does not advocate Armour thyroid and last time I visited suggested I may be borderline Hypoglycemic but didn't want to tell me the symptoms in case it made think that I was - you can see what I'm dealing with!!! But I was just so happy to get the T3 at the time I didn't argue.

Sorry this is so long but I'm so close to having my life back I can't give up now, any advice would be much appreciated. Thanks in advance

[shaws]

I am sorry you are in a dilema. Can you post a copy of your latest thyroid gland blood tests and post here so that someone will comment. Dr Lowe has said that before the TSH became the norm people were dosed on clinical symptoms and the usual dose was between 200mcg and 400mcg. Nowadays many of us are kept on 'replacement' doses i.e kept within normal range. Dr Toft ex President of the BTA has also stated that some patients need to have a suppressed TSH but your Endo may not like to read this as it may reflect on his professionalism. Some links within may be unavailable.

50mcg of T4 is a very small dose, in fact for many it is a starting point. This is a link re re reducing to 50mcg dose although I think Endo will not accept it. It is re low dose levo:-

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[DeniseR in reply to shaws]

Hi Shaws

Thanks for the info, I'll take a look.

My T4 dose is okay I think as the the whole reason the Endo offered me T3 was because I increased my own dose to 100mcg and all it did was make my symptoms worse. It was after that the he suggested the RT3 problem. I have also tried to come off it and just take the T3 but this made me feel worse again but I'm assuming if I stop the T4 I'll need a higher dose of T3???

I've just had a blood test with me on the higher dose of T3(20mcg) but don't get the results until Thursday. I have however got my last two test results, as follows:

27/7/12 This was on T4 only at 100mcg

FT4 15.7 (10 -23)

FT3 4.5 (3.5-6.5)

TSH 0.13 (0.35-5.5)

18/9/12 This was on 50mcg of T4 and 10mcg of T3

FT4 12 (10-23)

TSH 0.14 (0.35-5.5)

No FT3 was done, which I thought was stupid seeing as I'm taking T3???

I've also just noticed that since taking the T3 my TSH actually went up slightly, although still low. So how could tell anything without first testing me on the higher dose??? Grrrrr lol

[Clarebear]

Hi Denise - how frustrating for you Maybe you need to find a new endo? My endo does at least seem to know that TSH is useless when taking any medication containing T3 (although I sometimes have to remind him of this when he starts talking about my low TSH). There must be some refernces to this somwhere but not sure where and about to go out to take daughter to Kung Fu Hopefully someone else will come up with something. xx

[DeniseR in reply to Clarebear]

Hi Clarebear

It's so frustrating as I'm almost there and now stupid docs are going to mess it all up! Thing is I thought my endo was going to be ok as he suggested the T3, he's supposed to be one of the better ones lol. I've decided that if I still as bad or worse by Friday and especially if my TSH comes back the same as the last two tests, I'm going back on the 20mcg dose at least. Even if I have to start buying my own extra T3, I know I need to be on at least that dose.

I hope all's well with you X x x

[jkars]

What I used to find frustrating was the lack of correlation between the blood tests and my state of health. Measuring clinical signs and symptoms (temperature, pulse etc) was far more useful for me.

It might help to do plenty of your own research because it doesn't sound as though this endo is particularly knowledgable (although this is pretty standard it seems!). Please become as informed as you can, it might help you find a treatment (or Doctor) that works!

e.g.

Dr. Shames: Thyroid Myth Number 4 - KEEP DOSES OF THYROID MEDICINE LOW, TO REDUCE THE RISK OF OSTEOPOROSIS AND HEART PROBLEMS.

This is an unfortunately persistent myth, based on outdated research. More recent studies clearly show that thyroid medicine, in doses people actually need, is not harmful to the heart or bones.

This myth is particularly problematic, because when this advice is followed, people end up at greater risk of osteoporosis and heart problems. Under-medicated hypothyroidism is a common unrecognized cause of low bone density and heart palpitations, and subclinical hypothyroidism has been linked to various heart problems. Too little thyroid also can result in compensatory high adrenaline levels, which makes the heart very jumpy.

[DeniseR in reply to jkars]

Thanks jkars, I agree! Why can't they judge by how you are feeling. My endo says that the aching I get is nothing to do with my thyroid, so how come when I take the correct dose of T3, it stops???? Don't have to be a genius. Why are they so cagey about everything and deny what's right it front of them, frustrating is putting it politely.

I also agree my risk is higher not being properly medicated but getting my endo or my GP for that matter is another thing. My heart is very jumpy and it's already on my notes that I have an irregular heartbeat, what a surprise he probably hasn't even looked at them

I've done loads of research but it all gets a bit jumbled in my head, so I have to have things printed out or written down. I've also been to see Dr P, who was great but when the endo offered me T3 I couldn't turn it down and I was worried anyway that I wouldn't be able to afford to keep up with the treatment Dr P had suggested. I don't think another endo would be any better unless someone can suggest and NHS endo that actually understands all this???

[jkars in reply to DeniseR]

Due to the poor service I received from the NHS I was forced to self medicate in the end. Long story short, when one Endo wrote to my Doctor saying I should see a psychiatrist (!), he decided to support me and prescribed the meds that I was buying privately.

[DeniseR in reply to jkars]

It's terrible isn't it! Glad you got help in the end though. I'm sure my endo would be inclined to do the same thing if I push him far enough, that's why I need something he can't argue with to back me up on TSH. I just cannot afford to self-medicate long term, otherwise I would have done it ages ago.

[jkars in reply to DeniseR]

The argument for this is usually from Dr Anthony Toft's book - Understanding Thyroid disorders (He was President of the British Thyroid Association ).

This book has helped many of us to persuade their doctors to increase their thyroid meds to a level where they feel well again. In particular see page 84:

"Judging the correct dose of thyroxine

Your GP or thyroid specialist will usually prescribe a dose of thyroxine that raises the fT4 and TT4 to the upper part of the normal range and reduces the TSH level in the blood to the lower part of the normal range. Typical results would be a fT4 of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l.

In some patients, a sense of well-being is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/l, and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

[DeniseR in reply to jkars]

I have this book but didn't know if my endo would take notice of it. Thanks for pointing out the details though as I read it ages ago. I'll take it with me and hope this might convince him. As you can see from my blood tests above, on 10mcg of T3 my FT3 is still well within range, so maybe if these latest tests on 20mcg still show my FT3 within normal he might agree to leave me on it Thanks again!

[Muffy]

Do remember not to take any T3 on the day of your blood test, take it after the blood has been drawn.

[DeniseR in reply to Muffy]

Thanks Muffy, I did remember this, one of the few things I remembered lol

[Muffy]

Well done. That is the trouble with thyroid memories, it's easy to forget things. Well, that's my excuse.

[penny]

Hmm. I'm on 120mcg T3 and still don't feel that I am optimum. My doctor does the usual TSH test and T4 but as I'm not on any T4 and I don't seem to be making any this latter is very, very low. I am feeling better on just T3 than when I was on Armour. On Levo., I was very sick and put on a vast amount of weight in a couple of months.

The GP surgery did make a comment about the cost of the T3 but I ignored it. My GP now wants another blood test done as I have upped my T3 from 60mcg to 120mcg and they won't increase the prescription. I self-check with temperature (still low) and blood pressure - perfect. I am careful and only increase by 12.5mcg each couple of weeks and listen to my body and check as above. I may have to increase some more but until the GP ups my pills I won't risk the shortage.

[DeniseR in reply to penny]

I know how you feel, I worry having to raise your own dose carries the risk of them not letting you have T3 at all. But I have my latest test results and yes my TSH as dropped further to 0.07 from 0.14 but mt T4 and T3 are still not at the top of the range. I think, if I'm not experiencing hyper symptoms than surely I'm not over medicated - but of course, symptoms mean nothing! lol Good luck with finding the right dose for you and convincing the docs