I just got labs back today hoping they would shed some light on my overmedicated/dysregulated cortisol symptoms.
Labs at very start of being diagnosed 03/23. Endo thought that FT3 was not in optimal range despite TSH being OK which was his reason for starting with low dose NDT 1/4 grain morning and afternoon. TSH: 1.36 FT4: 12.23 FT3: 3.67
Despite 2 years of treatment my FT3 has never gone above 4.38.
I've been on NDT for 2 years and the TSH had become very suppressed last November. What does this change to a higher TSH mean? I reduced my meds by about a 1/3 in the 3 days leading up to the test. They are usually 1 gr morning and 1/2 grain afternoon. I took 1/2 grain morning only.
Other labs (25/02/25):
FT4: 9.91 ( range 9.01 - 19.04) previous 12.61
FT3: 3.73 (range 2.43 - 6.01) previous 4.38
Iron is also low 55 ng/ml (range 10 - 204)
Blood sugar 5,22 nmol/L (range 3.89-5.83) this is similar to previous blood sugar readings
Main symptoms are weak legs, OK to fall asleep but waking up and then unable to sleep for hours, diarrhoea esp on waking, brain fog,lack of concentration, waking up mentally in the evening from around 6pm able to be functional but hopeless rest of the day. Needing to eat a lot even during the night. Hypoglycemia sensation not backed up by lab result. Feeling wired but tired. Nausea.
my theory is that perhaps the thyroid never needed treating after all, the labs weren't that bad. At the root of this is perhaps an adrenal or digestive issue? I'm haven't been able to eradicate h.pylori /sibo yet. I did 4-point saliva cortisol test in 2022 which was slightly dysregulated off the HPA axis, going up in the evening instead of down.
Could the overtreated thyroid be setting off cortisol problems ? I noted on the packaging for the Thyreogland NDT I use that it should never be used by people with adrenal insufficiency.
So whats the solution? Tapering off NDT and coming off completely eventually? Am going to do urine test and saliva test for cortisol next week. Depending on the results looking after my adrenals and digestive system and hoping everything gets sorted by doing that?
Thanks very much for your help so far, you lovely people xx
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Crankyoldbag
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unfortunately ,reducing dose for 3 day prior makes the TSH / fT4 / fT3 results not much use as we can't now tell what T4/ or T3 were on the dose you were taking ,and 3 days might have been enough to cause your TSH to rise , or it might not , impossible to say which .
sorry not much help , i know ,, but given that we can't tell much from the thyroid results , i stick by my earlier reply ,,, ie , when symptoms suggest overmedication as yours do , try slightly lower dose for a couple of months and observe.
I noted on the packaging for the Thyreogland NDT I use that it should never be used by people with adrenal insufficiency.
But you don't have adrenal insufficiency. You just said so yourself: I did 4-point saliva cortisol test in 2022 which was slightly dysregulated off the HPA axis, going up in the evening instead of down.
That is not adrenal insufficiency. If you had AI, they'd be treating you for it.
Did you see my last reply to you on your last thread? I wrote:
So, your cortisol is high in the evening? What's it like early morning? If it's low then the thing to do is concentrate on raising it in the morning, not reducing it at night - that would just make things worse. The adrenals have a daily quota and the just keep on trying to meet it through the day. If they don't succeed until the evening then that's just tough luck. But, if you manage to raise it early morning, then the evening level will sort itself out.
I have no idea what my early morning cortisol is currently. I haven't done the tests yet. I'm generally very slow to get going in the morning so I would say it was low. I don't know what I can do to raise my cortisol in the morning. Perhaps go out and do a brisk walk ? or drink a coffee? on the cortisol test I did in 2022 it was slightly low but nothing too irregular. Out of the 4 points in the 2022 test the evening one was the only irregular one.
OK, so if I were you, I wouldn't do anything about your adrenals/cortisol until you've don' the tests. You need to know where you are now, rather than where you were in 2022. A lot could have changed in that time.
Taking any replacement thyroid hormone will lower your own thyroid output
Taking any replacement thyroid hormone that contains T3, as NDT does will rapidly suppress TSH shutting down your own thyroid output completely
It’s then absolutely ESSENTIAL to be on high enough dose of replacement thyroid hormones
I reduced my meds by about a 1/3 in the 3 days leading up to the test. They are usually 1 gr morning and 1/2 grain afternoon. I took 1/2 grain morning only.
This means that the test results are meaningless
You also need to test vitamin D, folate, ferritin and B12
Is your hypothyroidism autoimmune
Have you ever tested TPO and TG thyroid antibodies
yes the antibodies are fine. I don’t have any problem with autoimmunity as far as i know. I have given my ferritin result which is quite low at 55.
I’m completely in a mess. I’m only sleeping 2-3 hours a night for the last 3 nights. I have a 15-minute distance rdv with my uk endo tomorrow morning. I can’t afford any more than that.
I’m considering trying to see a French endo urgently at A+E but the french endo’s don’t understand suppressed TSH with NDT use because they don’t have NDT here. Completely at a loss. Legs are weak and wobbly, still have diarrhoea. No idea what to do anymore.
Could there be a problem with Reverse T3? I’m scrabbling around here but really know nothing.
My GP and another GP from the out of hours office suggested cutting dose by a third when they saw the suppressed TSH from November and its difficult to argue with them because all the symptoms of being overmedicated are there.
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