I recently had a top end and very experienced endocrinologist tell me that the 1.6mcg of levo per KG in weight was an old fashioned and outdated theory. Is this the case? I have just upped to 100mcg and was just wondering if I’m on the right dose. He seems to think that’s ok for me.
He also said that you can’t go on NDT or T3 only if considering pregnancy and that it wasn’t worth me getting genetic testing for poor t4-t3 conversation as it would send me down an unhelpful rabbit hole.
he took one look at my figure and said I stored belly fat and pear shaped which was indicative of insulin issues and asked if I was diabetic or it ran in the family. He didn’t suggest running any tests though. He just said that I’m pre menopausal age and my fat cells were having a party and that I’d always struggle with my weight.
He also said my weight gain since starting levo in January was a coincidence and nothing to do with levothyroxine or my thyroid. He also said upping my dose wouldn’t make me feel any different (I feel very lethargic most of the time..not myself and unable to exercise) most probably and certainly wouldn’t improve weight gain which I do kind of believe anyway. He kind of implied I was blaming my thyroid and levo too much and that the weight gain was just my fault for eating too much, not being active enough and being a bit older. He suggested me going on Ozempic!
I’ve been gluten and dairy free for my hashimotos but he wasn’t onboard with that. He said that antibodies eventually lower after years of being on levo as the levo stops the antibodies having anything to attack. So people think they’ve changed their diet and gone into remission due to that when in fact the antibodies would die down anyway after time. Diet or no diet.
He also said mixing levo brands was fine and that sticking to one type wasn’t necessary and that was just pseudoscience and people going down rabbit holes And the same went for the timing of tests.
It was a negative experience but I’d love to hear anyone’s knowledge/experience on any of this. I’m not one to have things sugar coated - I want the truth and I’ve been desperate to feel better so have been trying anything but his take on everything goes against so much information that’s on here that I’m now totally confused and he made me feel stupid for entertaining any of the theories/practices above.
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Needlehaystax
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Here are a couple of my blogs which address some of the issues:
helvella - Estimation of Levothyroxine Dosing in Adults
A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.
So sorry you wasted your money - I wasted money too - and ended up doing it for myself :
We need to see a full thyroid blood test to include the results and ranges of a TSH+Free T3 + Free T4 + thyroid antibodies-inflammation plus core strength vitamins and minerals - ferritin, folate, B12 and vitamin D - commonly called a Thyroid Full or Advanced or Ultra blood test.
Do you know the forum protocol for how to take T4 and for taking a blood test ?
There are a list of private companies who can run the necessary blood tests for you on the Thyroid UK website - thyroiduk.org - and if this ' specialist ' was on the Thyroid UK recommended list of specialists - please advise admin at Thyroid UK so the name removed.
It's been a good few years since I saw a doctor - let alone a specialist - Graves post RAI thyroid ablation 2005 - so 6 years distance from the medical profession has allowed me the space to improve my health and well being and given myself the options to take the most appropriate thyroid hormone replacement for me and I am much improved.
Well WOW! Was this "top end and very experienced endo" from the ThyroidUk list? Do you know if he is indeed a thyroid specialist or one of the "all too common" diabetes specialists?
I saw 2 different endocrinologists...one even a professor... who had a similar lack of understanding of thyroid symptoms. I later discovered both were in fact diabetes orientated specialists, and obviously lacked experience and knowledge of thyroid issues. Neither of them were from the ThyroidUk list, as when I saw them I didn't know about this forum.
I have now seen a Professor who does know about thyroid. I found him on the ThyroidUk list.
As to the "rabbit hole" of different brands my experience is that for me, a different brand can, and did, make me ill. Back on the original brand that suits me, I am stable.
"I’m not one to have things sugar coated - I want the truth "
OK....
He's an ignorant arrogant condescending arse ... ignore him
What's he at the top end of ... ??
National Bureau of Snake Oil Sellers and Charlotans Incorporated ?
Honestly , ....won't consider a reasonable experiment of trying a slightly higher dose of a safe thyroid hormone , but he's happy to suggest you experiment with ozempic without even doing a test to see if you have the problem it's supposed to help .
Ozempic has a boxed warningTrusted Source, which is a serious warning from the Food and Drug Administration (FDA).
The FDA issued this boxed warning because Ozempic has been shown to cause thyroid tumors and thyroid cancer in animals. It isn’t known if Ozempic can cause thyroid tumors or medullary thyroid cancer in humans. If you have a family or personal history of medullary thyroid cancer or a rare endocrine condition called multiple endocrine neoplasia syndrome type 2, you should not take Ozempic.
Talk with your doctor if you have either of these conditions or a family history of them.
For more information, see the “What are Ozempic’s side effects?” section below."
Totally agree with tattybogle . How do these charlatans get to top positions like that? It boggles the mind.
Obviously he never listens to his patients, or if he does believes they're all liars. Well, we all know that all patients lie to get attention and drugs, don't we! Not.
the 1.6mcg of levo per KG in weight was an old fashioned and outdated theory.
Well, no. Although I don't agree to it being anything but a rough guide, it's only recently that it's been found in the guidelines. It was originally used for people who'd had their thyroids removed to be used as a starter dose and titrated from there. It was never intended as being anyone's ultimate dose.
He seems to think that’s ok for me.
Well, he'd get that information from looking at your blood test results and asking about your symptoms. Did he do either? It's really not about what he thinks, it's about what you know. You're inside your body, he isn't.
He also said that you can’t go on NDT or T3 only if considering pregnancy
Now that is an old fashioned and outdated theory. It used to be believed that T3 couldn't cross the blood/placenta barrier, only T4 could. They now find that T3 can cross it. But why that would rule out NDT, is not quite clear.
it wasn’t worth me getting genetic testing for poor t4-t3 conversation as it would send me down an unhelpful rabbit hole.
Well, I kind of agree with him there, because it doesn't give any definitive answers about conversion, just possibilities. You find out how well you convert by comparing FT4 and FT3 results taken at the same time. There's nothing you can do about it if you do have the variations, anyway, so why bother.
He just said that I’m pre menopausal age and my fat cells were having a party and that I’d always struggle with my weight.
Well, yes, you probably will always struggle with your weight. But it's mostly due to doctors like him not understanding thyroid! lol
He kind of implied I was blaming my thyroid and levo too much and that the weight gain was just my fault for eating too much, not being active enough and being a bit older.
Oh, they all say that! Why look for the truth when you can just blame the patient? So much easier and so much less work. Lazy doctoring!
He said that antibodies eventually lower after years of being on levo as the levo stops the antibodies having anything to attack.
Well, it's true that they do die down as the thyroid slowly dies and there is less to attack. But, it's not the antibodies doing the attacking! The antibodies just come along to clean up the mess left by an attack - i.e. traces of TPO and Tg left in the blood. And, it has absolutely nothing to do with levo!
He hasn't actually understood the point of going gluten-free. It's because a lot of Hashi's people are gluten-intolerant, so cutting out the gluten makes them feel a lot better (and if it doesn't, there's no poing in being gluten-free). But, you should never, ever take nutritional advice from a doctor. They just don't know anything about it.
He also said mixing levo brands was fine and that sticking to one type wasn’t necessary
Once again, this is just pure ignorance. Whilst the active ingredient is always the same - T4 - the excipients and fillers vary from brand to brand. And that's what some people react to.
I’m now totally confused and he made me feel stupid for entertaining any of the theories/practices above.
That was his intention, to cover up his lack of knowledge, make you feel like the idiot instead of seeing that he was. Don't let it get to you! Don't let him win.
Thanks everyone..I think you all read between the lines and saw my true frustration. I will not be going back to him! As I said it was a very negative experience but thanks for your support and info..I now don’t feel like I’m going mad!
Regarding people taking NDT during pregnancy, this was the only treatment available for hypothyroidism for about 60 or 70 years, and there is no evidence that I've ever come across that hypothyroid women on NDT were never having babies.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
TPO tests
What shall I say to my Gp next week? Any guidance would be greatly appreciated 
Very naughty experiment
Awful setback.. advice needed!
