I've had a fun but challenging afternoon today. Had an article from the Thyroid Patients' Canada (well worth subscribing) about a FREE app for helping diagnose exactly what thyroid problems we may have.
Only thing is that you need a TSH, T3 and T4 test taken at the same time. I only have four since January (none before that), and two of them are Medichecks.
Nearly did my head in trying to download and find out how to work it, but worthwhile and fascinating when finally succeeded.
diogenes , You and other researchers should love this, though you probably already have it. Maybe you can help the rest of us understand the results I found it a real stretch to get the hang of it (by the way you need to use a desktop), especially with all the abbreviations. For anyone who is struggling, I made a list of what they stand for, but it's still quite complicated!
Apparently it's no use if you are taking NDT in anything but tiny amounts, or T3. Either taking thyroxine or not medicated is OK, as long as you tick the little box if you are on Levo.
GT: Functional thyroid capacity (doesn't work if you take thyroxine)
Let me know how you get on. It did take some time to get the hang of it, but worthwhile. I now have it confirmed that my T4/T3 conversion is OK but TSH and T4 levels do not correlate properly. And that this means a degree of central hypothyroidism because TSH production doesn't rise in a normal way when low thyroid hormones need it to.
I know! Even with a Biology background it was a stretch. And of course the hypo brain doesn't work at its max either. I keep reading things and forgetting what they were almost as soon as reading them!
If anyone is really stuck, you could post your TSH, T3 and T4 results (no need for reference ranges for this one, at least if I understood it right). After finally cracking it I found it real fun and would love to help. It beats Sudoku etc, and is also useful!
I downloaded, ran it, and had no problems filling in the values, especially since the software uses the same units of measure as the lab that tests my blood. So those I did not need to change. When I saw the results, I noticed that the range the software is using differs from my lab's range. I still don't understand what I am supposed to learn from this exercise. I left this comment on the software web site:
How about explaining exactly what this software is supposed to be telling us? "Structure parameter inference approach" don't know what this means. What is a "Structure Parameter"? When you say "for endocrine feedback control" are you talking about some information being conveyed to a medical professional by the software, or the software describing or explaining something that is happening inside the body?
And if you have the answers here are my numbers: TSH 0.02 (0.300 - 4.200 uIU/mL), FT4 1.5 (0.60 - 1.70 ng/mL), FT3 2.6 (2.0 - 4.4 pg/mL)
So my FT4 is ~82%, and FT3 is ~25% through range. I think I am unbalanced.
I'm not all that computer literate and also have difficulty remembering numbers for any length of time. Mental arithmetic and learning my times tables was a nightmare in school!) Hence the slowness to learn how to operate it.
I'm sure it says somewhere in the explanation on the Canadian thyroid site that the reference ranges don't matter and not to try changing them. Doesn't make sense to me but... The main thing is to remember to tick the box if you are on thyroxine.
'What is a "Structure Parameter"?'
No idea, sorry. I think the app is just a tool for patients, and hopefully doctors, to help get some idea what exactly is wrong with us.
I did find it confusing, but rather enjoyed the challenge! It also confirmed what I suspected, that my T4/T3 conversion is OK but my pituitary doesn't respond properly to the need for extra thyroid hormone. So TSH levels don't correspond to thyroid hormone levels
Just looking at my results I would suspect a conversion problem. TSH 0.073 (0.27-4.2)
FT4 67.7 % through range, FT3 19.9% through range.
BUT also TSH is suppressed (continuously) despite good FT4 levels. So the possibility that my pituitary is not responding prpoerly is one I hadn't considered.
I think I will do the download, despite my laptop's protest and see.
Do you think a GP would understand/respect these results?
"Do you think a GP would understand/respect these results? "
Depends a lot on the GP! If there are several GPs in your practice you could try asking the receptionist. Not to diss the doctor of course, but explain you really need to talk to one who is likely to understand your problem and give the help you need.
Suggest a clinical trial of an increase in medication. It is obvious that your T3 and T4 are no way high enough to explain the very low TSH
If you post your T3 and T4 results I'll have a go at that app if you like. But it seems obvious anyway that TSH in no way correlates with the thyroid hormone levels.
Hey it doesn't mean there's no solution, just your results don't fit what is expected. You know you have thyroid problems. This may help identify exactly what they are and therefore what needs doing
Hi, I have read and re-read the info several times and think I have got my head around it. Could you let me know the numbers and I'll see if I can make some sense of it? Ta. I appreciate the time you took to number crunch for me
Sorry, have been so busy these last few days. Was going to read it myself again a few times but just didn't have the spare mental energy ("When it's gone it's gone"!)
Here's the results. Seems to confirm that - like so many of us on here - you are not typical:
TSHI is very low (4 SD means I fall in less than 0.37% of reference population).
None of reasons given for this in the article seem to match my results - normal T4 (pills +any gland secretion left) and suppressed TSH, as T4 and T3 not high enough to suppress TSH this far.
Unless supplemented T4 were masking secondary hypothyroidism, ie T4 would be low alongside a low TSH if I wasn't taking pills.
But when I was dx 20 years ago results were classic hypo; high TSH with low T4 so it would seem unlikely.
In the early days with T4 my levels 'normalised', so pituitary responded appropriately. ALL tests over last few years have had consistently suppressed TSH (<0.05) through wide changes in FT4 - followed by changes in prescription. Made no difference to TSH as if pituitary is 'disconnected' from thyroid hormones.
Only possibility I can think of would be failing pituitary AFTER hypothyroidism diagnosed.
However, my reading on-line suggests this would be caused by tumour or autoimmune pituitary disease. Latter causes a mass (no articles referred to atrophy, only masses) to form so both would show up on MRI. I had an MRI last year for something else but they weren't alerted to any mass.
So that part has me stumped. My GP doesn't like the TSH and I can't offer her any suggestions from this, unless you have any ideas?
Clearly I need T3, which would need referral to endo, can't see them 'adding' T3 in with TSH already so suppressed - unless they would investigate and find a reason. Unlikely.
Hmmm
Thanks for the figures though. I have just sent off for a fresh FT4,FT3, TSH test to see if anything has changed.
"But when I was dx 20 years ago results were classic hypo; high TSH with low T4 so it would seem unlikely."
20 years ago we were all 20 years younger! My thyroid was fine 20 years ago and presumably TSH was also responding normally. Neither are OK now, though my T4/T3 conversion is still OK.
Everything deteriorates slowly, or some things more quickly, so (if nothing showed on the scan it seems likely that your pituitary and/or hypothalamus has deteriorated a bit too.
SeasideSusie , can you help here? Or someone else if you know who is best with this sort of thing?
I cannot for the life of me work out what this is all about. If you have all the results necessary, with the ranges, I cannot see why you would need an app to do what this one says it does. You just look at the results:
Primary hypo: high TSH, low Frees
Central hypo: low to middling TSH, low Frees - you can tell by looking at the results that the TSH does not correspond to the level of the Frees
Hashi's: high antibodies, other levels can jump around a bit - sometimes a lot
Conversion problem: TSH could be anywhere, low FT3, high-ish FT4
Absorption problem in the gut: TSH/Free levels do not correspond to dose
Absorption problem at a cellular level: TSH/Free levels do not correspond to symptoms.
And, how this thing is supposed to work without the correct range, I don't know - I suspect it doesn't. I'm really asking myself: what is the point? And, that's what I asked myself when you first posted it. Which is why I didn't react. I thought someone might explain. Obviously, no-one else knows either.
Once you are on thyroid hormone replacement, it's very difficult to diagnose Central Hypo because the TSH is no-longer a valid indicator of thyroid status. It might be suspected if other hormone levels start to drop, but that will happen with age, anyway, and won't indicate a pituitary problem unless the change is drastic - and how many of us actually ever get other hormone levels checked, anyway? But, just putting your TSH, FT4 and FT3 into an app isn't going to tell you, because the TSH is no-longer a valid… etc. So, I'm utterly bewildered as to what, exactly, this app has to offer. Good job it's free! lol
" how this thing is supposed to work without the correct range, I don't know"
You have a choice of ranges and enter the right one when you calculate.
I suppose it seemed a way of confirming what we already suspected/knew. Perhaps of value when trying to persuade the doctor of the need for appropriate action? The Canada Thyroid Patients seem to think it's useful. I found it a fun challenge at first, but too much like hard work sometimes to enter the results sometimes. The Canada group explanation suggests that those sort of results are a sign of central hypothyroidism, even if it's mild
But, did the choice actually contain the range that went with your results? The range of the laboratory that analysed your blood? Because I understood you to say, above, that it didn't.
I very much doubt it would have any sway with any doctor outside Canada - does it even in Canada? I doubt they'd understand what it was all about. Especially if you think it's telling you you have Central hypo when you've been on levo for a few years. I really don't think that would cut any ice. And, rightly, too. I think it's open to misinterpretation.
"But, did the choice actually contain the range that went with your results? The range of the laboratory that analysed your blood? Because I understood you to say, above, that it didn't."
I think it did for my results and DIYqueen's. but not for someone else's. Maybe they made a mistake when posting the units
you are probably right that it would likely not help if shown to the doctor.
But I did find it reassuring to have confirmation that my TSH production REALLY doesn't correlate with the T3 and T4 levels. something perhaps to point out to the doctor if necessary
That's something that doctors should already know. But, they don't. They cling to the idea implanted in their brains in med school, that the TSH tells them all they need to know. So, they're probably not going to listen to some patient with an app.
" it's very difficult to diagnose Central Hypo because the TSH is no-longer a valid indicator of thyroid status. It might be suspected if other hormone levels start to drop, but that will happen with age, anyway, and won't indicate a pituitary problem unless the change is drastic"
I thought that the TSH no longer being a valid indicator was a help to diagnosis in itself. So it isn't?
What I actually said was: Once you are on thyroid hormone replacement, it's very difficult to diagnose Central Hypo because the TSH is no-longer a valid indicator of thyroid status.
I thought that the TSH no longer being a valid indicator was a help to diagnosis in itself. So it isn't?
No, not at all. It's very difficult to get a doctor to accept that the TSH isn't all he needs to diagnose and treat. He sees and TSH in range and tells you there's nothing wrong with you. Probably doesn't even look at the Frees, and even less likely he would understand them if he did. So, I correct myself: it's always difficult to get diagnosed with Central hypo - mainly because GPs have never even heard of it. I think you're getting confused with the fact that with Central hypo you cannot ever dose by the TSH.
It's only those in the know that realise that a low-ish TSH with low Frees indicates a pituitary/hypothalamus problem. Anyone that knows that will spot it immediately, but those doctors are few and far between. But, there, we're talking about untreated patients, not patients who are already on levo. When you're on levo, your TSH is almost bound to come down, but that doesn't always mean your Frees are going to rise that much. We often see people on here, on levo, the pituitary recognises that there is hormone in the blood and decreases the TSH, but the frees stay comparatively low. Doesn't mean they have Central hypo. Maybe your app recognises that fact, but I don't know, I haven't seen it, I'm just talking about the impression I formed from all that you've said in this thread.
"I think you're getting confused with the fact that with Central hypo you cannot ever dose by the TSH. "
Doesn't take much to confuse me, that's true! But why should that fact be confusing? Except of course to TSH-obsessed medics.
But I did think that a TSH level that doesn't respond normally to the need for higher thyroid hormone levels suggests deterioration or a fault in either or both hypothalamus and pituitary control of TSH production. Isn't that true whether or not you are being treated?
Isn't that what central hypothyroidism is???
Sorry, just realised what you said here:
"When you're on levo, your TSH is almost bound to come down, but that doesn't always mean your Frees are going to rise that much. We often see people on here, on levo, the pituitary recognises that there is hormone in the blood and decreases the TSH, but the frees stay comparatively low. Doesn't mean they have Central hypo."
Think I get it now. So I probably (being on Levo) don't have central hypo because though TSH has gone low my Frees are well in range (even if I'm still rather symptomatic)
Well, it is true whether or not you're being treated. But, if you're being treated, how would you know? The TSH is probably going to be low, anyway. If you suspect you've developed Central hypo, since going on levo, or whatever, you'd have to find a doctor willing to test the other pituitary hormones to prove it - and if it's the hypothalamus at fault, you can't prove it, I don't think - but where would you find a doctor to do that?
My point is that you can only really diagnose Central hypo before you start thyroid hormone replacement - if it develops after, the normal criteria don't apply. That's all I was saying, there.
Most doctors are not taught properly about thyroid. Your results are atypical, and not agreeing with how you feel either. You may have a genetic variant that makes it difficult to convert, and may end up needing T3. It is the T3 level that's important, but they are trained to go by the TSH instead
To be 'generous' spirited, the doctors practising now will be disadvantaged during training in that so much has moved forward in thyroid disease understanding since they qualified. They should keep up to date, but with so many advances in so many disciplines it would be unlikely that thyroid was top of the list.
Mind you, that of itself, should make them more amenable to the properly researched info by patients hmmm
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I found it a real stretch to get the hang of it (by the way you need to use a desktop), especially with all the abbreviations. For anyone who is struggling, I made a list of what they stand for, but it's still quite complicated!
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