I am just back from consultant and I got so upset again when I was with her. After my tt I was on 100 mcg levo which was later dropped down to 75 mcg. I briefly dabbled with ndt but think I didnt research it too much and the doctor freaked out when I eventually fessed up. I have been back on levo and my results are:
T3 3.6 Range (3.1-6.8)
T4 14.2 Range (11-21.7)
Tsh 0.01 Range (0.3-4.5)
I tried to ask her why the tsh is so important when I no longer have thyroid but she was having none of it. She is now dropping my levo to 50 mcg and has told me I could be in line for heart problems with a suppressed tsh for 2 and a half years. I have also been referred for a heart scan. Seriously fed up now and it is now time to research my ndt journey further. How do these results look anyone?
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Ariadne43
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I don't think your results look good and I think they'll look terrible if your dose is reduced. Your FT4 and FT3 are low. On Levothyroxine only FT4 needs to be high in range to deliver FT3 near, or in, the top third of range. Suppressed TSH doesn't indication overmedication as long as FT4 and FT3 are within range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article.
I'm shocked that your endo can think a thyroidless patient will thrive on 50mcg Levothyroxine. I'm also thyroidless and on 75/100mcg alternate days plus 30mcg T3 daily. My TSH has been suppressed since 2012 to avoid recurrence of thyCa. Last test TSH was <0.01, FT4 14.0 and FT3 5.0.
There is no association with suppressed TSH and atrial fibrillation. You can get the full text of the Rotterdam Study below by emailing the Endocrine Society for a free patient access copy.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
They look like you are seriously undermedicated and if you carry on being under medicated you run the risk of heart problems as well as feeling utterly crap.
I have had a supressed tsh since 2001 apart from one brief experiment by a sadistic endo, when my tsh rose to 0.2..... (Its isually 0.02). When can i expect the heart and bone problems to start? Is it 10 years? 15 years? Or maybe 25 years? Or in fact, never? Try pinning them down to a time scale and you will soon find out that, actually, there isnT one.
I did have a bit of a heart problem in as much as my heart was a bit thickened, but this seems to have got better since being on ndt. ( 5 years). I now have a bulge in my aorta which measures 3.9 cms..... If it gets to 5 cms its called an aneurism. And will need an op to patch it up.... (Runs in my family) and is bugger all to do with my low tsh.
Time you ditiched this endocriminologist...... Tell you doctor you no longer have faith in her ability to treat you and ask for a referral to a different one..... Only check it out first and find one you can trust. There are lists of ones people have tried. You need to contact admin for a copy of the list.
50 mcg of levothyroxine cannot make you well... Its simply not enough. And you should not be the subject of this inexperienced endoS experimentation..
Your results look terrible. I'm kind of gobsmacked your "endo" (inverted commas because I'm not sure she actually is one!) thinks you'll manage on 50mcg of levo. Your FT3 is already at the bottom of the range. I wouldn't be surprised if your TSH stayed suppressed on 50mcg - would she seriously propose dropping it to 25mcg? Or none??
Did you have Graves before your TT? I'm sure I've read somewhere that TSH never returns to normal after years of being suppressed - but others may be able to confirm (or tell me I'm bonkers ).
Jassw, I left the room thinking I was the bonkers one! I did have graves before tt. She also tried to tell me that the antibodies just go away but I disputed that as I still have slight problem with eyes. I just felt the tears coming and just couldnt believe what I was hearing.
No, you're right - she unfortunately isn't right. If only a TT did completely fix the problem. But in their heads, it does.
I think Galathea's right - you need to ask to see another endocrinologist. This one is going to make you really ill - and you've had quite enough of that already.
I'm so sorry this is such a battle - it really shouldn't be. Big hugs x
Oh goodness, not a good week is it? Is there something that can be done? A good friend of mine had a brain aneurysm a couple of years ago. Luckily he pulled through but it was a very scary time.
Not my finest week! Waiting for referal to see what can be done. Discovered when he was admitted for acute pancreatitis probably caused by statins. I have some reading to do now. I dont give up easily and wont let some uneducated doctor make me ill
If you email Louise at louise.warvill@thyroiduk.org she'll be able to send you the latest list of member-tested endos so that you can ask your doctor to refer you to one of them.
It's not a guarantee that you'll see someone better, but improves the chances. Louise takes them off the list if she receives a bad report about them...
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If your dad has been diagnosed, he can most likely be fixed.... The problems stem mainly from people who are not diagnosed, they are not fixed and then itS all too late for them. My mum was found to have one by accident, it was almost 7 cm..... She had an op to fix it when she was 82 and is doing fine........ Hope all goes well for him.
You know far more than the doctor. They just don't understand and cannot get to grips that everyone of us have different doses and TSHs for us to feel well. That's the aim of thyroid hormones, to replace ones we don't have or gland isn't producing.
No answer, just a question of my own in this context: I have no idea how common 24 h urine analyses are in the UK but, in Belgium, all the so called Hertoghe doctors use them between your first and second visit. Having done two of them (a few years apart), I can say that even though my FTs did not look that great in blood, they looked far worse in 24 h urine...my FT3 levels were mid-range in blood, but barely detectable in 24 h urine. My Ft4 levels in 24 h urine were barely mid-range and, back then, I was taking 200 mcg of T4 daily, and my blood test results showed FT4 levels at the upper normal range.
This is why I wonder: which test is most reliable? My problem with the 24 h urine analysis is that the H doctors only use them to make their initial diagnosis, and only blood tests after that. Logically, if the 24 h urine analysis is the most accurate test to determine if your thyroid levels are optimal, then why does it become unimportant the minute you switch from thyroxine to NDT?!
They're not used commonly in the UK, Anna. Dr P uses them but as you probably know, he's a private doctor here. Perhaps he too regards them as more accurate? In general UK NHS doctors seem to treat the results of urine thyroid tests with deep suspicion (I suspect because they just don't know about them, not because the results aren't accurate).
Thanks for the input, Jazzw! I have to admit that I don't understand the discrepancies between the hormone levels measured in blood and in 24 h urine respectively...it seems that, in continental Europe, 24 h urine analyses are only used in Belgium, and only by so called Hertoghe doctors. I have not heard of any other country (with the possible exception of Germany) where they are commonly used. Please correct me if I'm wrong, anyone.
I've had a couple of private urine tests done- I'm in uk. It was interesting to see they reflected the changes in the blood, although much lower. I'm inclined to go with the urine results as the low T3 reflects more how I'm feeling!
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I'm kind of gobsmacked your "endo" (inverted commas because I'm not sure she actually is one!) thinks you'll manage on 50mcg of levo. Your FT3 is already at the bottom of the range. I wouldn't be surprised if your TSH stayed suppressed on 50mcg - would she seriously propose dropping it to 25mcg? Or none??
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