Sorry.. I’ve posted this several times but remain in a state of confusion and have no real answers to my poor health.
To recap:
I have had conflicting thyroid results with some tests showing overrange t3 and t4 with high tsh, yet other tests showed high tsh and room to manoeuvre with t3/t4 dosage within the ranges.
The conflicted tests were very frustrating and diogenes helped me hugely by suggesting that perhaps o have an antibody that interferes with the testing method. This made sense when we looked through it with me getting differing results depending on it being a one or two step blood test method. Roche machine showed up the more bizarre results (high tsh overrange frees) so I thought we had cracked the case and have stuck with Abbott’s testing since. Note - still chronic fatigue and homebound aged 32. Even on Abbott’s testing the last test showed tsh around 1 and both frees right at the top (but within range).
However... I’ve just had my thyroid results back from the gps office (on Abbott’s machine which o thought was most reliable for me!) and my results are:
T3 7.1 (2.9-4.9) !!!!
T4 16 (9-19)
Tsh 2.9 (0.4-5.0)
My dose hasn’t Changed (50mcg levo; 20mcg t3)
I simply don’t understand why my t3 is so high and tsh still high???
My vitamins are all ok except working on folate. I’ve had an mri to rule out a pituitary issue/ tumour. I pushed for a request for addembrookes but then got rejected because tests there showed tsh 2.5 and frees at top of their ranges (but not overrange):
I am so so ill. I am dealing with a functional medicine doctor to help
Me recover from systemic infections but thyroid is a key part of healing and my case is not straight forward.
Does anyone have any suggestion as to what I should do please? I’ve seen several endos (severalFrom tuk list who haven’t been able to help :()
I found this post which is the closest comparison to me (though I don’t know how I feel if I raise t3 higher!) pulse is 68, bp is low normal. I’m slim, not overweight at all, thick hair, but fatigue That leaves me bedbound and terrible weakness.
Hi I am so sorry you are still not feeling well. You mentioned got an antibodies test, what was the name of the test? What do you mean by differing results?
Have you also ruled out the other antibodies (TPO, TG, TSI TRAB)? Have they ruled out thyroid Cancer as well?
It sounds like it would make more sense (the antibodies messing with your results as mentioned by the person above) .
I’m sure you have heard this before, about finding interesting that you are having a higher tsh (to the right) and high t3 (also to the right). Are these Ft3 and Ft4 tests by any chance? Not sure if you know this but Ft3 & Ft4 are what is unbound and usable by your system. T3 & t4 measures what is usable and un usable.
Edit: I see now that you said you are fasting and know the basics so I am assuming you wait to take your medications till afterwards.
How are your iron levels and your b12? You mentioned Folate so I’m curious about your b12 as well. Usually doctors measure serum B12 which is the total (usable and un-usable) in your blood. If you have had problems with this in the past (high mcv/ mchc I believe it is, low hemaglobin can also be due to b12/ folate) it would be good to test for Active B12. I have been learning about this myself as I have Autoimmune Gastritis as well as low b12 and Iron Anemia.
I don’t have as much experience as others here, but am post Graves and know what its like to be on both spectrums and not feel well. I’m sorry you’re not getting answers, it sounds like you’re doctors don’t have alot experience with what you are going through so it seems they are unsure of what is going on.
I will look through your past posts and see if I can be some help to you as well.
I wanted to ask if you have ruled out issues with the Thyroid Binding Globulin?
I just googled normal tsh, High t3 and t4 and this is one of the things that popped up. If anything it's something that can looked into and be ruled out, potentially bringing you a little closer.
This is the website that first piqued my interest:
Most of the thyroid hormones in the blood are attached to a protein called thyroid binding globulin (TBG). If there is an excess or deficiency of this protein it alters the T4 or T3 measurement but does not affect the action of the hormone. If a patient appears to have normal thyroid function, but an unexplained high or low T4, or T3, it may be due to an increase or decrease of TBG. Direct measurement of TBG can be done and will explain the abnormal value. Excess TBG or low levels of TBG are found in some families as an hereditary trait. It causes no problem except falsely elevating or lowering the T4 level. These people are frequently misdiagnosed as being hyperthyroid or hypothyroid, but they have no thyroid problem and need no treatment.
This website also has further details about pituitary and thyroid as well; very interesting!
This is another interesting website and you can create a free account if you're interested.
Thyroid-binding globulin (TBG) is produced in the liver and is a circulating protein that reversibly binds thyroid hormones 3,5,3’-triiodothyronine (T3) and thyroxine (T4) and carries them in the bloodstream.
An increase in TBG may result in an increase in total T4 and T3 without an increase in hormone activity in the body. If additional thyroid hormone testing is indicative of hypo- or hyperthyroidism without any symptoms, TBG levels become more relevant. TBG levels can artificially suggest states of hypothyroidism or hyperthyroidism. Various nonthyroidal illnesses, medications, high estrogen states, and even prematurity can mimic hypothyroidism as a result of misleading laboratory findings. Increased TBG levels may be due to hypothyroidism, liver disease, and pregnancy. Decreased TBG levels may be due to hyperthyroidism, renal disease, liver disease, severe systemic illness, Cushing syndrome, medications, and malnutrition. Thus, the entire laboratory data collection evaluating thyroid function should be considered along with the current state of health. [1, 2]
Don’t think I’ve vern checked for thyroid binding globulin. It’s not been suggested by anyone else before. Is that what the link conveys could be the issue? Sorry will read later as I’m so tired right now. Thanks so much
Okay sounds good. Yes, that is what the link conveys. I’ve included the parts about the Thyroid Binding Globulin.
In regards to your other message. It sounds like what has been described is what’s happening (the interference). Even if you are negative, you can’t rule it out as you get different results; infact I would say that that would prove more in your favor, wouldn’t? It seems like alot of other things have been ruled the out and testing for TBG. Wouldn’t give you exact results either depending on your current situation. Have you researched to see if there is someone who specializes in the interference of testing, as this person you mentioned, has said? Sometimes you can have a free consultation with doctors overseas. I think if you have exhausted the list in your area it would be worth looking for a doctor elsewhere who you can call and talk to who has experience in this area.
I also think that as this is going on, I agree with the below comment about going off of symptoms, the problem is that Symptoms like Fatigue and muscle weakness can be generalized for a few things such as hypothyroidism and Iron Anemia, even B12.
TBG measurement is only useful when total T3 has been measured. This is because low TBG will have an accompanying misleading low T3 reservoir, and vice versa for high TBG. An FT3 test automatically corrects for TBG variations, so then it is unnecessary to measure. The same goes for total T4 and FT4.
Hey, thanks for replying. I had full mri done. Heterophile antibody tests (negative) and alpha sunnits which all looked fine. My antibodies vary depending on which method of testing is used...! I am negative for hashi on gp abbot testing yet positive for antibodies when tested on a Roche machine (Medichecks) it similar!
That’s what lead us to believe that there was interference from my blood, like a certain antibody that upset readings however the latest Abbott’s test which I thought was reliable is now showing the funny pattern too. ☹️
One option for you is to just ignore blood tests and dose based on symptoms. This is what most of us should be doing anyway, with blood tests just as a guide.
Is your functional doctor able to do the more traditional physical tests for thyroid, such as the Achilles reflex tests (being hypothyroid we have a slow muscle relax, while a healthy person will relax quickly after being tapped with a hammer), pinching the skin, feeling your temperature, etc.
If they are not too knowledgeable but are willing to learn you could figure out the ankle reflex together.
I think the ideal for you with thyoid hormone would be to start on a dose you know is too low for you, maybe your current dose, then increase slowly every 6 weeks. Keeping a big eye on symptoms, take pulse and temperature k measures for several days on each dose, make extensive notes on symptoms.
The easiest thing to dose would be NDT because then you don't have to think about the ratio of T4 to T3.
Unfortunately you may be stuck with GPs to help you. Do they understand that your body may be messing up assays? Do they have any strategy to dose you?
If not you may have to self medicate. I have also been housebound, I'm able to get out a little now. Self medicating had helped me a lot, I'm tons better than I was 3.5 years ago when I started. I originally had a thyroidectomy for cancer, but if you have an unusual situation they are often rubbish.
Thank you. I may change to ndt. I think the reliability of getting hold of it is an issue for me and I didn’t want to change too much til I had an explanation as to what might be going in with me
Sometimes it takes more than one doctor. It’s truly unfortunate, but if they can’t help you, it would he best to have a team of doctors behind you who can help you figure out what is going on.
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