I've been pondering some results I had between Jan 31st 2023 and may 2nd 2023.
This is concerning my TSH results which like many members on here know our gps/endocrinologist only use the TSH as there golden rule missing out T4 and the gold T3 the actual hormone we need.
RESULTS:
Jan 31st... TSH.. 6.25..RANGE..( 0.30..4.50) this was on (20mg) of T3 (Roma brand)
T4.. 2.90..on T3 only
T3... 3.7..RANGE.. (3.10..6.80)
May 2nd...TSH...4.42...RANGE.. (0.30..4.50) this was on (10mg) of T3 (Roma brand)
T4.. 2.70..on T3
T3.. 3..RANGE.. (3.10..6.80)
Why would my TSH be in range on a lower dose (4.42).. (10mg Roma)? ??
And be out of range (6.25) on a higher dose.. (20mg Roma)? ??
My T3 shows the change.. On 20mg T3 Roma it was 3.70..
On 10mg my T3 was 3..
The results on may second were through a mistake I'd made in my meds, I thought I'd been taking 25mg (i trilateral up from 20mg) but in the last wk I'd not realised I had no 20s left and we're in fact taking 5mg in the morning and 5mg in the evening making the 10mg so hence the blood results in may🤦♀️.
I'm now back on 25mg and have labled my meds so I don't make that mistake again 🤦♀️but why was my TSH results like they were? if taking more T3 (20mg) should my TSH not have been lower?
And taking less (10mg) should it not have been higher?
Just another mystery in the thyroid journey 🤷♀️
Written by
birkie
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It's no use thinking that TSH and treatment are closely linked on treatment. The whole axis is disturbed permanently. It's ironic that the least effective test is used to monitor treatment, regardless of what the medical world thinks.
With Graves Disease the TSH is a most unreliable reading as we have both blocking and stimulating antibodies circulating in our blood since this is an auto immune disease.
Graves antibodies are known to get ' stuck ' on TSH receptor sites and drive down the TSH which then, in turn, would increase thyroid hormone production and this is when we get the diagnosis of Graves hyperthyroidism.
Now this fact does not matter as your thyroid isn't there :
Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH reading is based - is now broken - as by having had a thyroidectomy this circuit is now open ended as your thyroid is not there to respond in the normal way.
Just another additional reason unique to Graves why the TSH is so unreliable.
Once a Graves patient - always a Graves patient as these antibodies may detach from the TSH receptor sites at some point in time - and there again, they not not - as no one knows -
Barbara S Lougheed's book - Tired Thyroid - From Hyper to Hypo to Healing - Breaking the TSH rule :
Every gp or endo I've seen always refers to me as an hypo patient, when I had my full thyroidectomy (thyrotoxicosis) i asked my surgeon about graves, first what will happen once I have no thyroid?
His response "you will be put on T4 levothyroxin and you won't look back"
(wish that was true) 😢
Second I asked about my high antibodies
His response "your antibodies can remain in the body for up to 6 months, then you will not have them" 🤷♀️
Not fully believing that, but I could be wrong!
Also he told me the auto immune part would also go as I have no thyroid to be attacked, again not sure if this info is true🤷♀️
But ever since my thyroidectomy and taking the thyroid hormone replacement I still feel awful🤦♀️
Graves is a poorly understood and badly treated auto immune disease which doesn't stop just because you had a thyroidectomy:
But by having had a thyroidectomy you are now on daily manual controls and not with any automatic thyroid function as you have had a thyroidectomy and the TSH is least important reading and which must not be used to dose adjust or monitor on.
I can't help what has been told you- I heard the same rubbish when very unwell some 8 years post RAI thyroid ablation as when I turned 65 told I couldn't run with a TSH at 0.01 and for 2 years became increasingly unwell with dose reductions of T4 - in order to get my TSH in the range despite my worsening symptoms.
Having been refused any treatment options I removed myself from the system and Did and Do It for Myself :
The doctors treat symptoms - the root cause is auto immune for which mainstream medical have no answers :
I think it's very likely that the dose confusion is related to this unexpected result .
Bear in mind that your TSH can be much slower to catch up/ react to any changes in dose than fT4 /fT3 levels are.
So eg. if you only took 10mcg for one week before the test, but were taking 20mcg for the week s before , then the fT4 / fT3 results will be showing "10mcg" , but the TSH may still be showing it's reaction to "20mcg" ... if so then that would indicate that your TSH had continued to lower a bit while you were on 20mcg .
i wouldn't worry about finding an answer to this quandry , there are too many unknowns to draw any firm conclusions ,,, just wait until you are next tested on a stable dose for 6 weeks , and see what next results are .
Thanks tattybogle❤️ my only concern is my gp only goes by TSH.. 🙄🙄 I tried explaining my may results of T3 being low.. (3) because of the mix up.. Honestly I really don't think he grasped it🙄 because right away he said T3 is not a good thyroid medication 🤦♀️.But yes I've re set and are now bk on 25mg...only thing is this gp seems to think a TSH of 4.42 is OK... 😂😂😂 I don't, so trying to get an increase if I need one is going to be hard 🤦♀️🤦♀️
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