Oh, why oh why do they want to make and keep us sick?? My endo did my yearly test - and she only ordered a TSH (I had done them privately, so I knew it would be low, and my FT4 was, too) - I expected her to at least test for FT4s, but she didn't - and here was her response:
TSH is low, showing your thyroid dosing is too high. I will send in for a decrease of the levothyroxine; ok to continue the liothyronine. We can recheck the level before your upcoming appointment. (my note: TSH was 0.09 (0.450 - 4.500 uIU/mL)
Here was my response:
I am responding to your comments from the TSH test. Before I lower the T4 dose, can we PLEASE check the FT4? I am concerned that by using the TSH only (and the reliance on TSH seems to be the standard), it is an indirect measure of the amount of thyroid hormone is actually available. In addition, by adding the liothyronine, there is a greater chance of lowering the TSH. I understand there is concern over bone and cardiac issues with a suppressed TSH - and as a FYI, I just had a bone scan, and am at 1.230 g/cm2 BMD, with a T-score of 1.5 and a Z-score of 1.7. I am not experiencing any heart palps, but am willing to get a ECG scan if that is necessary and am willing to take responsibility for my health. I have attached a journal article concerning a lowed, but not suppressed TSH (.04-.4 mU/liter), and while the study group is was on T4 only, it has some interesting points. I don't mean to be a pain in the butt - however, I need to be an advocate for myself and after a number of years in the dumps prior to dx and then trying to get the dosage "right" - I finally feel well and can actually engage again in life and I really, really, really, don't want to go backwards. I need to say I am a person, not a number inside a statistical population. I appreciate your time and thoughts. Thanks.
I uploaded the journal article - but if anyone has any other journal articles or such that I can wag under her nose, I would appreciate it. I'm glad I'm smart and willing to stand up for myself. I am just so very sad that there is a complete lack of professional understanding on how to treat people with thyroid issues.
Here were my results from testing privately (I always follow the guidelines - testing at 8am, no levo 24 hours, lio was split the day before and last dose 12 hours previous to test):
TSH 0.04
FT4 1.0 (0.8-1.8 ng/dL)
FT3 2.8 (2.3-4.2 pg/mL)
I do not consider this over-dosed... in fact, I am finally feeling good - as I have been gluten and dairy free for over 6 months and I walk every day...
Sheez. Sorry for the long rant - I just needed to put this in a place where there is understanding...
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thanks, @tattybogle. I sent over this one - and was wondering if there is one that talks about how adding T3 will lower TSH, but that it isn't such a horrible thing....
i will have a look tomorrow morning...brain is past it now , i think the stuff about T3 lowering tsh more than T4 does is somewhere in diogenes research , but i forget which of his papers are which .... have a look through his previous posts you may find something before i do
then look up 'papers by diogenes et all' in the list on the right hand side.
that is a list of diogenes published papers
Some of the papers there, and some of his posts on his profile page diogenes will have what you need . sorry i haven't had time to find which paper is best .. but hey , if if you read them all~ you'll be able to wipe the floor with any endo anywhere.
"The present findings have several practical implications. (1) Conversion efficiency and the resulting FT3 play an important regulatory role in shaping the TSH–FT4 relationship in LT4-treated athyreotic patients. The data suggest a dual role of both thyroid hormones, FT4 and FT3, on hypothalamic–pituitary TSH control. This type of controlling of the controller is technically known under the term of cascade control. If the need arises, this provides mechanisms for the efficient adjustment of controlling elements. Clinically, the relatively strong additional direct and indirect influences of FT3 on TSH control demonstrate an important element in determining a suitable set point for adequate treatment......"
Q.from tuppence"... what puzzles me is how he intends to deal with TSH, whilst using T3. Perhaps my understanding is incorrect, but I understood any use of T3 will lower TSH? "
Diogenes replied... " It will do so, because molecule for molecule, T3 is about 3.5 times as potent as T4 in suppressing TSH"
reply by diogenes: The action of T3 and T4 on the pituitary and hypothalamus is roughly 50/50 for a healthy person. But since there's only about 1/3 the amount of FT3 compared with FT4, this means that one molecule of FT3 is 3 x more active than one molecule of FT4. Thus, if FT4 diminishes owing to thyroid loss, the more active FT3 takes over, and being more active suppresses the pituitary more than usual. This will happen with patients on combination or T3 therapy.
not quite what you're after , but still useful when discussing lower TSH than endo is happy with ~ the following papers show TSH level doesn't mean quite the same once on Levo ~ the TSH is relatively lower / fT4 is relatively higher/ fT3 is relatively lower:
reply from diogenes: "Your GP should realise that in T4 therapy a below-reference TSH doesn't often matter. Indeed this downloadable paper shows that in therapy TSH as low as yours (0.06) can still express the body as euthyroid. You could download it and show its basic conclusions"
Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment
Rudolf Hoermann, John E.M. Midgley, Adrienne Giacobino, Walter A. Eckl, Hans Günther Wahl, Johannes W. Dietrich, Rolf Larisch
This study proves that once on Levo, the TSH level is shifted lower , and the fT4 is shifted higher ~ relative to the same amount of fT3.
Therefore explaining why patients often need a lower than 'normal range' TSH to feel well on just levo. ( they need a higher fT4 to get the same amount of fT3 ~ and in order to get the same amount of fT3 they have a lower TSH)
fig. 2 ~ a graph showing the lower TSH / higher fT4 / same fT3 after levo ~ is accessible via the 'Supporting Information' dropdown at the end of the summary.
Re. T3 lowering TSH 'more' than T4 it's worth checking out this from Tania.S.Smith : thyroidpatients.ca/2019/01/... the-pituitary-response-is-abnormal-stop-tsh-worship/
( i haven't looked into her references for this comment ,but they are given below .. she's usually pretty reliable with facts but you'll have to read the papers yourself to see if they really do contain the evidence for it ).
"HELLO, HYPOTHALAMUS?
Now consider how fickle the hypothalamus can be to T3 hormone dosing.
Look into the historic studies of T3 therapy and you will understand the unique effect oral dosing of T3 has on TSH. Oral T3 therapy is well known to be a TSH suppressant, much more so than T4 therapy.
Science has now given reason to believe that the early TSH suppression seen in T3-T4 combination therapy is very likely to be a side-effect and a localized hypothalamic bias (11, 12, 13).
The TSH is artificially suppressed post-dose long before FT3 levels rise to their post-dose peak, and the long-term TSH suppression remains in effect long after FT3 levels return to moderate or even low levels.
To put it plainly, the hypothalamus is hypersensitive to the quick rise in fT3 that will occur in T3 dosing, long before it has reached excess.
Why is the body doing this?
The hypothalamus is incorrectly assuming the T3 is coming in a steady stream from a hyperstimulated thyroid gland, rather than from a pulsed thyroid hormone dose. In response to the speed of the upward shift in FT3 level, it radically undercuts the pituitary’s ability to secrete TSH.
Meanwhile, TSH suppression in T3 therapy is not necessarily a sign of T3 oversupply from the entire human body’s perspective. D3, the enzyme that inactivates both T4 and T3 in peripheral tissues, is far more powerfully wired to inactivate excess T3. (2)
Therefore, our tissues are protected from bloodstream Free T3 fluctuations. Even mild T3 excess can be inactivated upon entry into cells by local D3 inactivation of T3 into T2.
Despite exaggerated fears that Free T3 fluctuations are dangerous, there is absolutely no proof that this is indeed the case.
Nobody has had the courage to study patients on long-term 100% T3 therapy who have no thyroid glands, no TSH, and no T4 hormone, to discover how much of their “excess” serum T3 is inactivated to T2 in tissues. Until you study these people who have such an unusual thyroid hormone profile, you can’t assume they are in danger."
(11) T3 rapidly modulates TSH beta mRNA stability and translational rate in the pituitary of hypothyroid rats. Goulart-Silva, F., De Souza, P., & Nunes, M. (2011).Molecular and Cellular Endocrinology, 332(1–2), 277–282. doi.org/10.1016/j.mce.2010....sciencedirect.com/science/a...
(12) Negative Regulation of TSH alpha Target Gene by Thyroid Hormone Involves Histone Acetylation and Corepressor Complex Dissociation.Wang, D., Xia, X., Liu, Y., Oetting, A., Walker, R., Zhu, Y., … Yen, P. Molecular Endocrinology(2009). 23(5), 600–609. doi.org/10.1210/me.2008-0389academic.oup.com/mend/artic...
(13) Single Dose T3 Administration: Kinetics and Effects on Biochemical and Physiologic Parameters. Jonklaas, J., Burman, K. D., Wang, H., & Latham, K. R. Therapeutic Drug Monitoring (2015). 37(1), 110–118. doi.org/10.1097/FTD.0000000...journals.lww.com/drug-monit...
Recon TaraJR just found another one to add to the list of references for T3 lowering TSH more than T4 does thyroidpatients.ca/2019/09/... a-dialogue-with-utiger-t3-over-suppresses-tsh/
"feeling good" is what you are aiming for. Keep it up.
The Thyroid UK website is useful - I hope you've found it. I particularly like the section on Further Reading and the Myths of Hypothyroidism. Here's a link.
There are several myths, particularly "The myth that a suppressed TSH leads to Osteoporosis". There may be some useful references that you can look at.
Well said. I had to plead my case to my nhs endo, even after my private endo referred me back to my gp, requesting him to prescribe me t3, which he said he couldnt, so gp referred me to nhs endo. Nhs endo took into consideration private endo notes of t3 improving my well being. I addded that after being diagnosed with low thyroid, I researched my condition, found i was not only lactose and gluten sensitive but also im a bad converter. She requested i pay for deiodinase enzyme 2 test, which i said i would, and ended my appointment with, ' T3 is enabling me to hold my job, keep my home and family and have the ability to live a normal life' 2 weeks later I recieved a phone call stating nhs will write me a prescription for t3, which I now have, but trying to source a pharmacy that will oblige is my next step. I really hope you get better and are able to try t3
Thanks to all for your replies, suggestions and links. I think I have found the paper that I will print and bring with me to the appointment - (not sure if this will come through as a link, I don't know how to do these fancy internet things). I think it states a positive affirmation of my position fairly well and uses extensive citations inside the article. bmcendocrdisord.biomedcentr...
Alas, I must be a pre-schooler - or at least it seems that I must be treated like one... here is the reply I received...(an yes, I have lost weight - with an incredible amount of effort, getting my vitamins in place, dedication to water, walking, macro nutrients, no gluten, dairy or other inflammatory foods) - however, based on private testing, as noted below, my FT4 was way low in the range, as well as my T3 (which the endo considers "rubbish" anyways...)
I appreciate your concern and that you are feeling well. However, the TSH is the best test for determining thyroid dosing as a low TSH means the brain is sending a low signal to your thyroid - in this case, it's sending a low signal to me - the person giving you medication - that the brain wants less thyroid hormone. Typically if TSH is only mildly suppressed it would be ok to continue current dosing. However, your TSH returned very low. Often when people lose weight they need a reduction in your thyroid medication.
I just don't know what to say... other than what a sad demonstration of the current "protocol" medicine, rather than the pragmatic way of actually listening to a patient.
You need to be more precise in your answers and show your workings in future.
Writing "your TSH returned very low" is not a very intelligent comment when we are discussing the difference between 'low but not supressed' and 'supressed'
Use actual numbers in future.
did you read the paper given to you showing no increased risks when TSH is 0.04 -0.4 ? giving an opinion on this in relation to my TSH of 0.09 would have got you a better mark, and would show me you have used your own brain".
First prove that TSH varies directly in step and in amplitude with thyroid hormone levels. Not in general - but in the individual patient in front of you!
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