First, thanks to all here for sharing your vast knowledge and all the deep resources about everything thyroid. I had a follow-up with my doctor yesterday and he did increase my dosage of levothyroxine to 100 mcg (I had been on 50 mcg). Thanks to suggestions here, I had what I needed to present my case for increasing my dose and "looking further" - and I was grateful that he heard me. I now also have a referral to an endocrinologist - but that may take awhile to actually see someone. He also ordered tests beyond his typical TSH/FT4 as I let him know I took a private test and the results of the FT4 was decreasing, and my TSH had increased (and I acknowledged they were still "in range" to him) but I argued that this was not the direction I was hoping for and actually reflected the increased fatigue. I also let him know that they tested for FT3 and TPO antibodies - and the FT3 was "in range, but on the low end - (it was about 16% of range), and the antibodies were way high. My doc ordered (his) standard TSH/FT4, and then the FT3, the TPO, plus TSI (not sure what this is).
So that was the win (I got him to - 1) hear me, 2) do more testing than just the TSH/FT4 (although I still need to work on the vitamins testing), and 3) a referral to an endo).
... and here's the question(s) - I just got back most of the results (other than the TSI) - it did confirm that my FT4 had fallen back to about 16.8 % of range, that my FT3 was only 4% of range, and that I did have elevated TPOs (>600). However, my TSH went from 2.09 in May to 1.89 now (range .45-4.5).
So, how is that (both TSH and Ft4 decrease)?
Just for reference here are the numbers:
TSH August 2021: 1.89, May 2021: 2.09 (range .45-4.5)
FT4 August 2021: 0.98, May 2021: 1.18 (range .82-1.77)
FT3 August 2021: 2.1 (range 2-4.4) - from private lab in July 2021: 2.7 (range 2.4-4.2)
TPO August 2021: >600 (range 0-34) - private lab in July 2021: 1899 (range 0-70)
To recap my questions:
How is that (both TSH and Ft4 decrease)?
What is TSI and what does will it tell me (results not in yet)?
What questions should I bring to the endo dr?
Based on advice here I have moved to a gluten free diet and will also pursue vitamin/mineral testing that has been suggested - is there anything else I should do?
Thanks in advance for your support and suggestions. You are all very helpful and I am very appreciative!
Written by
Recon
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TSI = Thyroid Stimulating Immunoglobulin - the antibodies which stimulate the TSH receptor in the thyroid to make excess thyroid hormone and are the cause of hyperthyroidism in Graves.
I am not convinced that your GP understands when a TSI test is appropriate. At least with my first look over, I can see no justification for doing it.
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TSI (thyroid stimulating immunoglobulin) is the name of a test for the antibodies that cause Graves (Autoimmune Hyperthyroidism) The antibodies are Thyroid Stimulating Hormone Receptor antibodies (TRab) and there are 3 types of them ;1) Stimulating.. these mimic the action of TSH and cause the thyroid to produce more T4/3. leading to becoming hyperthyroid. with very low TSH
2) Blocking .. these block the TSH receptors on the thyroid, and stop TSH getting in .. so TSH is unable to get to the thyroid to stimulate T4/3 production .. so you become hypothyroid, often with unusually high TSH.
3) Neutral .... don't do much.
Not sure why your GP will have ordered these .. but it will be interesting to see results .. (wish they'd do mine i've always been curious if i have any)
For technical reasons it's not usually possible to test them separately.. so you find out if you've got any . but not which sort they are. That has to be deduced from your TFT's .
Apparently quite a few Hashimoto's patients do have some 'blocking' TRab .. but no one usually test's TRab unless they are Hyperthyroid so we don't get to find out if we have them.
Their presence can explain cases who swing from Hypo to Hyper (proper hyper, not overmedication) and who have periods of remission where they are OK without Levo for a few years. If they have both Stimulating and Blocking types then as the levels of these wax and wane , ther can be periods where they balance each other out... it's all very fascinating .. but not much research evcer done and not much data available on who has what antibody.
The usual use for TSI/TRab test is for Endo to confirm diagnosis of Graves Disease as the cause for hyperthyroidism.
Thanks, as I was looking into what the TSI was, it wasn't making any sense to me and I wondered if I was looking at something wrong, or had the wrong acronym. I checked the orders and it was for the TSI. I will report in once the results are in - perhaps he is looking for those blocking TRabs. Thanks for the dive into this one!
I hate to say it .. (but i will ) " if any GP in the UK has even heard of a 'blocking' TRab antibody.... i 'll eat my hat.
It's more likely he's just decided to throw the book at it to show you how hard he was trying. It's also possible someone further up the line will tell him they don't need to do it because you clearly don't have Graves.
Still .. you never know ... i'll put some strawberries on my hat just in case you're right about him.
(if he HAS thought about anything as interesting as 'blocking TRab 's ,you should DEFINITELY keep him)
Thanks for the excellent advice on how to make eating a hat much more delicious. May I suggest washing it down with a favourite beverage. But chances are it never comes to that.
Interesting ... i think the following reference says that "TSI" means they are ONLY measuring the 'stimulating' kind of TRab (ie. the ones that mimic the action of TSH and cause over production on T4 /3) ... so, a TSI doesn't measure any blocking ones ?
So if i'm right .. we now know you have some stimulating ones (that can make thyroid produce too much hormone and so lower TSH), but we don't know if you have any blocking ones.
But (tentatively, out of my depth here) it looks like you might have Hashimoto's and Graves at the same time .. which a few people do.. there are some on this forum.
( However i've never been 100% sure of my facts re. which test measures both types of TRab at once, and which test measures just the stimulating alone ,and if there is still a test that can test just the blocking ones alone .. there used to be, but it's hard to find now . I think it was called TBII (Thyrotropin Binding Inhibitory Immunoglubulin) ...
Anti-TSH receptor antibodies comprise several types, responsible for two distinct clinical conditions. Thyroid stimulating autoantibodies (TSAb)—that is, TSI—are the direct cause of Graves’ disease, while thyroid blocking antibodies (TBAb), which inhibit TSH binding to the thyroid receptor, can cause hypothyroidism.9
Currently, there are a variety of assays on the market that measure anti-TSH receptor antibodies.
The majority of TRAb assays detect both TSI and TBAb. They can be either automated or manual (ELISA, RIA). Despite efforts at standardization, some important inter-method differences still remain.
Only a few available assays were designed to detect only TSI, the specific cause of GD. One is a qualitative bioassay, the other a recent quantitative automated immunoassay. The clinical sensitivities and specificities of these assays have improved over the years and are now very good, but can vary from method to method. The results among TRAb and TSI assays can sometimes be discordant. This may be due to variations in clinical sensitivity, the individual patient, and the antibody being detected: TBAb or TSI. "
There has also been discussion about TSH receptor antibodies that are neither stimulating nor blocking. Sometimes called "neutral".
Although willing to accept that such things could exist, they are routinely ignored.
(In days past, the term LATS - long-acting thyroid stimulator - was commonly used as a conceptual term. This was before the TSH receptor antibodies were understood. Perhaps the neutral antibodies simply don't get stuck in the receptor so whatever impact they might have is very transient?)
well spotted ... i'd ignored them too this morning.. I also don' t know if neutral ones get measured in a TSI ?... could perhaps explain why Recon doesn't seem to have Graves clinically... (i would love to now what prompted this GP to test TSI... i note he had just referred to Endo before he had the results of this TSI...so i suppose it might just be protocol as part of referral ..i'm waiting nervously to see if i will have to eat that hat )
I don't think anyone needs to eat a hat (although these particular hats look delicious!) I will ask him next time I see him as to why he thought this was a good test, but his advice on the test result: "The thyroid-stimulating immunoglobulin came back high. Make sure you follow-up with the endocrinologist when you see them." I had that figured out yesterday. Now it's wait for months to see the endo, and hope they have some knowledge.
phew.. a reprieve for now , and i like my hat , i'll be v. sad if i have to eat it. But i may as well be hung for a sheep as a lamb .. so if you can get an intelligent conversation from an Endo about blocking v.s stimulating v.s neutral TRab's , then i'll still eat it .
Very unlikely lab will actually test Ft3….even if GP requests it
With high TPO thyroid antibodies this confirms autoimmune thyroid disease also called Hashimoto’s
With Hashimoto’s it’s extremely common for TSH not to reflect how hypothyroid you are, once on replacement thyroid hormones
A) taking levothyroxine in gut as single dose is totally unnatural and not how your own thyroid works
B). With Hashimoto’s levels hop about so much TSH gives up responding
C) we need optimal vitamin levels
Most important results are always Ft3 followed by Ft4
Very common for TSH to be very low or suppressed when adequately treated…..but GP will almost certainly want to lower Levothyroxine if TSH drops too low
Ah, I get it - because I end up putting all the T4 in my system as a "big" dose (when I take a pill), as opposed to having it seep into me (or however the thyroid emits it) gradually, the pituitary gets confused and the TSH really doesn't correspond to the amount of T4 that is available - it might just look at that big dump and say, "okay, that's enough" (if my pituitary could talk, anyways). Thanks for the explanation.
There's not much difference in those TSH results and TSH changes slightly every half hour or so .... so in fact you could have easily got both those TSH results on the same day.
Same with fT4 ... it's not a stable level .. it has little mini peaks ..if you measure it every 10 minutes it looks like pinking shears, rather than a straight line.
TSH is slower to react to different levels of T4 in the blood .. so perhaps your TSH was on it's way to being higher /lower , but hadn't got there yet .
Thyroid blood tests are like a triple swing set in the garden with 3 kids swinging at different speeds ... and one kid is on a really heavy slow swing ..... then you get to take one picture for one millisecond with a camera... and based on that image you have to work out which kid was in front and who was swinging backwards or forwards .. (analogy needs work..., but hopefully you get my point)
added....
If you took another picture a little later, a different kid might appear to be in front .... so fine differences in blood test results don't tell us much .... but what a set of thyroid blood test's CAN do successfully is to tell us whether one kid has flown off the swing into next doors garden .
(still needs work.. one day it will make sense.. preparing it for a mini series of thyroid playground analogies ... we already have several involving see-saws and swings and roundabouts.)
You should do much better on the new dose but do test privately in 6 weeks then get an increase if you’ve still got symptoms and your T3 and t4 are not high in ranges. I do doubt the doc will get the T3 test as the lab simply rejects the request but anyway you have your results.
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