Just by way of update .... Had second appt today with Endo at Great Western ... A lady this time who was most pleasant and reasonable. Believe it or not my Thyroid Panel requested from my initial appointment .... Had not been done ! She had obviously read up though and recognised why I had been referred. (Very briefly over the last twelve months ... TSH 0.02 .... Reduction in T4 from 150 to 125 ..... Within three months TSH 17.5 .... Dose upped again .... TSH "undetectable" .... GP referred. That sounds so simple but I have had the most awful year ... My brain got lost, anxiety, panic attacks and overwhelming sadness... And all the other hypo stuff ! It has taken me 12 months to get to be me again .... I lost a year !
Anyways .... She kinda asked me how we could sort it .. What would I be comfortable with ? She recognised I might... Just might ... Get a bit shirty if a reduction was mentioned ..... We talked about AF and osteoporosis ... I mentioned T3 ... And was told that only prescribed to get a very high TSH down quickly !
So ... She prescribed me some 25mcg T4 and suggested very gently a slight reduction ... One day a week 125 mcg and six 150 mcg for three months then test again. Sha said my body is "used to" a slightly higher dose. Will see her again in six months.
I feel ok with that .... Feel able to monitor any changes and know can up dose again if necessary .... She gave me confidence to take control ... It was a good informative appointment ! Lucky girl eh !
Lindy
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Lindy
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you can test in 4-6 weeks. Is she doing reverse t3, free t3 and free t4 testing, to see if you are converting t4 to t3? I fear this doctor is more interested in TSH over anything else and will leave you ill.
I agree. And I have my doubts about what she said regarding T3 - never heard that before, and it doesn't make any sense - but, then, I don't know where you are.
Anyway, these endos are a law unto themselves, and make it up as they go along. They don't really have any idea what they're doing or talking about. Do you not have any labs at all apart from TSH? Can you share what you got? I mean the figures, not just 'undectable' or whatever.
T3 is the major player when it comes to treatment..heck, you can actually ditch the t4 all together. If you don't convert well, t4 turns into rt3 and slows things down even more. I think Lindy is uninformed, if shes happy with what this doctor said.
Faith, that's not entirely true. I am on T3 only, self-treating, but recognise that there are some things not quite right without the T4 - although I'm better now than I have been in years.
There was a discussion on it here the other day - didn't participate so can't find the thread - between PR4NOW and... someone else, about how the brain needs T4 (it would appear that T4 needs to be converted in the brain because T3 cannot cross the blood/brain barrier). It was said that people on T3 only tend to have very short tempers as a symptom - and I really do recognise myself there! I am very calm and reasonable one minute, the next, I go for the jugular! Most disconcerting for other people (even though some of them deserve it!)
I know that T4 is a storage hormone - or prehormone - that has to be converted into T3. But I've always been uneasy about saying that it is just that. (Even though I have said it on occassions.) Nature isn't that wasteful, everthing has more than one purpose, so making a thyroid hormone that is JUST a storage hormone doesn't seem logical to me. However, there is still a lot of research needed on that.
Having said that, I would be very, very reluctant to reintroduce T4 into my regime. I was very ill on T4 only, only a tiny bit better on T4/T3, and not at all good on NDT (tried all the brands and got up to 6 grains to no avail). I got my adrenals and iron sorted, but still couldn't convert the T4 to T3. Things could be better now, I don't know, but I don't have the courage to try T4 again. Not yet. lol Maybe sometime in the New Year, when things are calmer, I might - just might - introduce, say, 1/2 a grain NDT in with my T3. But then again, I might not! It would be nice to be of a calmer disposition, but is it Worth it for the weight gain, the hair loss, the anxiety and all the rest. I'll keep you posted!
I am concerned about the lack of t4 too. My ft4 is barely existent and at 50mcgs t4, and my ft4 levels well under range, my rt3 was at about 30% and not allowing me to raise the t3 meds and keeping me from getting any benefits from it at all. I know something is wrong with me, that keeps me from converting. Having inflammation from being hypo, having Hashi's, cortisol, blood sugar, sex hormone imbalances..so many reasons that can stop you from converting and for me, no chance of knowing what is the true reason or combination of reasons. I have all of the above, that showed up when my Thyroid went crazy. If i add back any t4, my levels will have to be kept very low, which may not make a difference at all and at any time can turn into rt3! Like you, i am very hesitant to add t4. If we do, we will have to start blood tests again for rt3, paying for them ourselves, i guess. I may never go back on it, but very uneasy about all of it!!! Maybe rt3 is a self protective mechanism, and i am damaging myself with the t3?!!! I really don't know what to do. I don't have an issue with my temper, my brain fog is gone, swelling better, but not all resolved..i am not well by any means, but improved and look more normal. But, my temps still drop and i am very tired.
Also, what is huge is that since 2009, i have had Gastroparesis and Acid reflux..it is all gone now. My food digests for the first time in nearly 5 years! I was living on liquids and when i would eat a bit too much solids or any solid food, i would have to make myself throw it back up. The bloating was terrible and i would have trouble breathing! I would still not lose even a single pound. I can eat normally now. I cut out milk after i found i was sensitive to it from testing. So, i am so much better off than i was. Sometimes i feel like i have pressure on my throat, but my thyroid scan shows a small, perfect Thyroid, even when i have this pressure..drives me nuts.
Ha ha! Testing for rT3? I live in France. Doctors don't even know what rT3 is! There is only one lab in the whole of France that tests for it, and I can't afford it - not when I'm also having to pay for my own T3. Some of us just have to wing it and play it by ear - or whatever.
I suspected I had rT3 so just started taking a high dose of T3 to flood the receptors until the rT3 cleared (no T4). Things got complicated after that, but, by trial and error, I found that a lot of my problems were nutritional deficiencies which I am now dealing with, and am on a stable dose of 75 mcg T3, which seems to suite me. However, there is bound to be some irreversable damage done due to being untreated/undiagnosed for about 50 years.
Doctors have been of no help whatsoever. In fact, I think I can safely say that in my whole life, none of the very numerous doctors I have seen have ever done anything to make me any better - in fact, they've all done something to make me worse! Which is why I now avoid them like the plague. It is just incredible how clueless they all are - not just abot thyroid but all sorts of other things, too. I despair for the human race, I really do.
I would rather screw up on my meds and die by my own hand, than have the doctors do it, with their ignorance and refusal and disinterest in listening to me or learning anything new. I was not ill til they pulled me off psyc. meds, cold turkey. I was doped up for may years, rather than them addressing my hormonal imbalances. I too avoid them and maybe someday that may not be such a good thing. I have high blood sugar, i know, it is from the inflammation. France sounds lovely tho.!
Ummm... yes and no. France has it's advantages, but then, so does every country.
Unfortunately, I live in the industrial north. If I lived in the South, or the centre, it would be far more agreeable, but here it's drab and grey. Nothing to shout about. But one tends to live where the work is - unless one's rich - which I most definately am not! lol
I lived in Paris for a while, and that was great, but too expensive and difficult to find work that pays. So, I had to leave. C'est la vie!
Oh, I didn't mean the weather. lol I meant the architecture and the people. It's industrial and that's never pretty. No, it gets very hot sometimes in the summer and so far the winter is very mild. But I don't like the heat, either. Sunshine makes me feel bad. I ought to live further north, but I don't like the snow, either! lol Just can't win!
Oh..sorry..yes, that sounds not so great. We have lots of green and nice people actually, so i guess i am lucky with that. But, being homebound, i guess it doesn't matter all that much. I don't like sun either, but i used too. This illness has really changed me for the worse! We have very hot, moist Summers and Winters can get quite cold. We don't get as much snow where i am in the southern part of the state.
Yesterday, my stomach got distended and my eyes got very swollen..haven't had that this bad in quite awhile. My bp got high too. Do you have that happen ever?
No, l can't say l ever have. Could it have been something you ate? Do you have any food allergies? Or maybe a goitrogen. I'm told by GPs that my BP is always high, but l think that might be white coat syndrome. They say things like don't you get headaches when your BP is high? Well, no, l never get headaches and never have any reason to believe my blood pressure is high. But they just think I'm , stupid. Lol
Yes, thyroid disease changes everything, the way you look, theway you think and, of course, the way you feel. Nobody understands just exactly how much it changes you except another hypo. Or hyper.
Thanks..i have so much inflamation in my body that my thyroid meds don't work right, so sometimes i am worse than others. I am sensitive to milk, so cut that all out. I miss my cheese!! Doctors probably upset us on purpose, so our bp goes up, then we become more ill, then they make more $!
Merry Xmas, Happy Hanukkah and Happy New Year..Happy Kwanzaa and Happy Festivus, for the rest of us..from Seinfeld!
Right! You've understood that, at least. You can no-longer trust your doctor to give you unbiased advice or treatment, nor to have your best interests at heart - not even to know what he's talking about, most of the time! The whole system is corrupt and is just a branch of Big Business, these days. Money is all that counts, not saving peoples lives. So sad...
This is all very interesting. I remember reading about it a while ago too. I am considering just adding a very small amount of T4 to my T3 in the new year.
I do find that my brain works so much better since being on T3 only though. Very strange. Maybe adding a tiny bit of T4 might be the missing link though.
Let us know how you get on with adding NDT. It would be very interesting to know
Yes, it's true, my brain is still working, so some T3 must be getting in there. My thyroid is no longer working, destroyed by Hashi's, so it must come from the T3 I'm taking. I don't know...
There again, it is said that sublingual T3 cannot possibly work because the molécules are too large to get into the blood that way, but I've always taken it sublingually and I'm still alive, so it must be getting through. There are so many things we just don't know.
That's nonsense that T3 is only prescribed to get very high TSH down quickly. Really where do these people make it up from ?? Her lack of knowledge is very worrying for an Endo.
She has said that about the T3 to put you off continuing down that path. So she is making stuff up about the treatment available . That seems quite extraordinary. But far from unusual. Medical 'professionals' make up all kind of stories to avoid having to address that T3 can be beneficial, long term, on its own. Be wary with this woman. If what she suggests makes you feel better: good. If it doesn't, make your own decisions.
I think this doc sounds pretty typical of most endo's that i have seen. Most seem to think TSH is the most important test there is. Mine runs ft4, ft3, rt3, TSH and will still leaves me undermedicated based on TSH suppression. I get my t3 from Mexico now.
I am with everyone on this one. She is not an endo that I would want to see. She is trying to put you off T3, instead of giving you a choice in managing your own health. She is not prepared to explore options to find out what works for you and is prepared to manage based on TSH which is not good for a thyroid patient. I am prescribed T3 and also have a supply that I ordered from Mexico
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Bloods in October,endo wants to reduce meds. but to what? Help please.
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"Perfect TSH" according to consultant endo but.....
