Please help I had a call from my endocrinologist telling me my cortisol test is normal. While he was on he asked have I stopped my thyroxine yet? I have a suppressed TSH but low t4 and t3. I had previously agreed to reduce to 100mcg. When I was on 200mcg my t4 was mid range and t3 low in range. My doctor referred me to the endo as I had asked to try t3 as I might not be converting very well. Endo insists I'm hyper and stop medication. I told him I felt awful could hardly move and my t4 went to bottom of rang and t3 under range. He was very rude to me and said t3 and t4 are irrelevant and I am damaging my heart and bones by taking thyroxine. Why did I feel so ill on reduced dose "that would have had nothing to do with thyroid" why do I have hashimotos antibodies "that is irrelevant" He told me he wants my TSH around 2. I tried to tell him what I've researched mentioned nhs choices but he shot me down saying I think I'm an expert because I can use the internet.
I am so fed up. Could he be right? I asked why my TSH is still suppressed when I reduced dose he said I didn't do it long enough. He said my thyroid would work if I stop suppressing it. Is he right??
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Hele1
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I would be rather surprised if he were right! Didn't you ask why you were put on thyroid hormone replacement in the first place, if your thyroid would work without it? He sounds like a right opinionated ignoramous! I'd give him his marching orders, if I were you! He has no idea what he's talking about!
You cannot possibly be hyper if your Frees are mid-range, or under-range. If you are hyper - or over-medicated, to call it by its given name - your Frees are well over-range. It's the TSH that is irrelevant when you are on thyroid hormone replacement, not the antibodies and the Frees!
Antibodies mean that you have Hashi's. If your TSH was high, you are already hypo, no matter what. And the antibodies mean that it's just going to get worse.
Most doctors know very little about thyroid, but this man is worse than the average endo, Yogi! He's a right Boo-boo! (Don't worry if you don't recognise those references, I'm just showing my age!) You don't want anything to do with him! He will make you very ill, and keep you that way.
greygoose ....better call the Ranger...He probably knows more than that the endocrineologist that is two sandwiches short of a picnic! !Haha!....on a serious note this man is an absolute...." .... "(swears!)....and because he read a couple of outdated text books why does he think he's an expert? !pppfft! He OBVIOUSLY isn't with his upside down back to front way of thinking!!
Yes, but he doesn't know that. He has no idea he's wrong. He probably vaguely remembers something about thyroid from med school days, but these days, he's a diabetes specialist, who thinks he can wing it with thyroid - after all, they taught him in med school that hypo was 'easy to diagnose, easy to treat', piece of cake, really - whinging patients are always liars and malingerers, anyway, not to mention too stupid to know how they feel! It's his education that's to blame, plus his conviction of his own superiority, which was accentuated by his education in med school. He's completely brainwashed, and sees no reason to question his own reasoning - after all, he's been to med school, hasn't he! You can't get any better than that!
No idea he's wrong no....but they don't even grace you with respect or compassion when they are telling you that they are right (they're not!)and your right (you are!)...I've been made to feel like the lowest form of life sat before them ...never again!
No they don't do they! You tell them how bad you're feeling and they seem to delight in making you feel worse. How long have you been self medicating? Are you feeling better?
I ve been doing it for several months after a few years on levothyroxine. .I had managed to get up to 3grain all the time monitoring my symptoms and temperatures. ....I couldn't get them right they were screaming adrenal problems(aparantly ndt can highlight this) so recently have dropped back on the ndt and added an adrenal glandular till I'm in a position to raise again and get it right this time...I still feel better than when on levothyroxine though even though I'm not optimal.
Greygoose you are smarter than the average bear! You made me smile thanks. I'm just exasperated as I've just started a trial of ndt and starting to feel better. My average heart rate as gone from around 60bbm to 80bbm. He now has me doubting myself as I'm worried when heartbeat occasionally goes into 90's that I am doing myself some harm!?
He said the fact I collapsed with exhaustion is probably due to a heart problem ...
I was gaining confidence from reading all the valuable information on here but now I feel I've been shot down in flames 😐
You'll fly again, yogi! It's just a temporary, setback. They are evil little b******s, most of these endos. Power mad! I just wish he could have his TSH around 2, see how he likes it!
hele1, i am sorry you got shot down by someone who "is" a professional! and i can feel with you. i get very easy uncouraged (sorry about my gramma, but it is just too early in the morning to think (((australia))). )
what i do when attacked by a foreman/boss at work or when my doctor didn't make sense: i ask for it in writing! i never got it, but it made them aware of my opposite opinion.
if you have to go back to this endo...tell him :
**"I feel terrible and don't know why. please could you write it down for me, why my thyroid medication i was prescriped made me so sick??" in case i end up in emergency, at least i can show the doctors in there what is going on.!**
really, you should make him to put his order or whatever....sorry still muddled, no coffee yet, .... in writing, doing that, he will refuse! of course. but what is written down can not been taken away or denigt. sorry can' t write the right word for deneing, even if my life depends on it!!! hahah, stupit brain fog..
He's not right about my heart being damaged is he? It's really made me question it? He said he follows the most up to date guidelines which are followed all over the world "so there's no point quoting research from other countries" He really made me seethe.
i don't think so, my hard is rolling sometimes and i have the feeling it stops for a beat, it worries me a bit, but even the 3 day monitor i was wearing at one srage could not find anything wrong with my heart rythem. it id the thyroid and the wrong dosis, that is what my doc explained. nothing to worry, so he said. coffee time now. xx
Tsh should be suppressed on ndt ...mine is ..very much so but still T3 and T4 at bottom of ranges....I'm self medicating. ..gona keep raising till they are in a good place ..I'm not concerned about tsh. ..its irrelevant to me.
Next time you speak to him, ask him very politely in a meek way that could he provide you with said up to date guidelines and also where it is stated that low T4 and T3 is okay and that thyroid antibodies are of no consequence as you are getting oh so very confused with all the different info and this would help you amazingly in following his instruction to a tee. He should have it to hand if he is in deed keeping up to date
Well, if you have been underdosed and so have low free T3, your heart could be damaged by that. So ask for a referral to a cardiologist (who will probably have more clue about T3 also).
I had read that is more likely than his theory but I did say if you think my heart is damaged then please arrange tests to find out. He said no. I'd have to speak to my doctor. I also asked about a bone scan because he kept trying to scare me and he said no only if I've had a fracture ...
Your endo is so ignorant he does not deserve a medical licence, as for heart and fracture risk see the below link, you say your TSH is suppressed, below range is not necessarily suppressed and does not appear to incurr aditional risk til under 0.04 according to this UK (or does he consider the Scots unreliable foreigners too? ) research. I admit I dont understand all the ratios but I think the Main outcomes, results and Conclusion are clear enough - this study was done using a reference pool of something like 17,000 patients not the usual paltry 50 or so.
Thanks phoenix605 that's very interesting. Unfortunately as my TSH is 0.01 or more recently 0.03 I can't really show to the endo as it proves what he's saying is correct 😐
I suspect that is where the ratios come in but that bit is beyond me I am afraid. It is definately being hyper that causes heart and bone issues. This study is based on levo treated patients and I think it assumes that suppression is caused by over medication, ie over range FT3 and 4. As grey goose stated being hyper requires over range Ft3 so you have not been hyper at any point. So suppressed TSH is not relevant to heart or bone risk in your case. Try this excerpt instead, its from a British Medical Association endorsed book. Thyroid UK leaflet on treatment options is also worth reading and also quotes Dr Toft.
EXCERPT FROM BMA BOOK UNDERSTANDING THYROID DISORDERS BY DR ANTHONY TOFT
I feel better taking a higher dose of thyroxine than recommended by my doctor. Is this safe?
There is considerable debate about the correct dose of thyroxine. The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.
Hi, my tsh is also at 0.01 and has been there for more than a year and I am fine. I seem to be lucky at the moment as the docs don't seem to be too bothered at the moment but they do want me in for thyroid bloods but I am ignoring them.
I have a suppressed TSH but low t4 and t3. I had previously agreed to reduce to 100mcg. When I was on 200mcg my t4 was mid range and t3 low in range.
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Endo insists I'm hyper and stop medication. I told him I felt awful could hardly move and my t4 went to bottom of rang and t3 under range.
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He told me he wants my TSH around 2.
It obviously hasn't occurred to the endo that your body may be incapable of producing the amount of TSH he wants it to produce. Under those circumstances he could take you off all your thyroid meds for the next ten years and your body may still be unable to produce enough TSH to keep him happy.
Based on the things you wrote in your post I suspect you may have central hypothyroidism (a blanket term which covers secondary hypothyroidism and tertiary hypothyroidism - do some googling for all these terms for more info). This is caused by a fault in either the pituitary and/or the hypothalamus, and the result is that your pituitary doesn't react as it should and doesn't produce enough TSH for your needs.
Since the endo you've been seeing is such a boorish, rude, nasty, uneducated, sadistic ignoramus, you need to find another endocrinologist who actually knows something about the thyroid.
Write an email (not a PM) to Louise Roberts :
louise.roberts@thyroiduk.org.uk
and ask for the list of good thyroid doctors and endocrinologists. If there are any good ones in your vicinity write a post on here asking if anyone has seen the doctor(s) concerned, and if they have can they send you a PM to tell you what they thought of them.
Any patient with central hypothyroidism has to have their dose of thyroid meds determined by their level of Free T4 and Free T3. Using the TSH doesn't work.
You could treat yourself of course, but it is cheaper and makes life so much easier if you can get the NHS to treat you properly.
Thanks human bean I mentioned pituitary problems and secondary hypo and that's when he said "just because you looked on the internet you think you're an expert". I was flabbergasted. My TSH has gone from 0.01 to 0.03 and that has been over the course of a year on 200,175,150 then 100mcg. I said surely it would've increased by now and he said I haven't given it long enough!!
I was diagnosed 25 years ago but don't know what the TSH was. 15 years ago I had a few miscarriages and battled with them then to increase my Levo as my TSH was over 5. So it has been up in the past but suppressed for about 10 years but t4 has never gone above mid range.
Ah so a long time ago. So sorry in regards to miscarriages, must have been dreadful. Yep I would say something not right there with little change in tsh regardless of dose and continued low levels as suggested by humanbean.
Maybe you'll have better luck with another endo. Take copies of your blood tests to show these to new one if you get the opportunity - fingers crossed
Hele1 ,KODOS for you . First of all for trusting yourself and questioning your Dr's way of treating you . I learned the hard way when I first started my journey with thyroid and thyroid meds I made the mistake of trusting my Dr's . BIG MISTAKE . I had more to loose and nothing to gain . I felt awful . When I started to trust myself and started to question is when my well being started to improve . You coming to this GREAT FORUM and asking questions and everyone chiming in with their own experiences will educate and empower you . TRUSTING YOURSELF is the first step in the right direction . If it doesn't feel right then IT'S NOT . Empower yourself till you feel strong enough to FIRE your Dr and Hire new one . You might just need to do it a few times till you find the right Dr that doses by SYMPTOMES FIRST LABS LAST . Labs only tell half the story the serum part . Symptoms tell the better part and that's cellular . That is why when Dr treat us by labs only and we still DON'T FEEL RIGHT .I would very highly recommend that you start journaling your symptoms . They are very telling . For example energy , pulse , blood pressure , weight , hair falling out , cold hands and feet , insomnia , constipation , skin changes etc. Ask your Dr each time you run labs for a copy and right on it the dose you are on . Hold on to them so that you have what to compare to .
Im central hypothyroid. It's not an easy ride I can assure. You will need a very , very good endocrinologist. I am still struggling after goodness knows how many years. My TSH is 0.03 and my FT's are mid range.
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