Confusing Lab Results - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Confusing Lab Results


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#1 MerBearMama

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Posted 10 November 2021 - 04:44 PM

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Hello,

I was diagnosed in Jan 21 with Graves after several months of symptoms. My TSH was undetectable and TSI was 484. Wil using a modified AIP protocol with the help or a nutritionist and 10 mg daily of methimazole (with adjustments per my endocrinologist) my TSH went up and my TSI went down. It was 319 in June. my hair started to fall out and I began gaining more weight than I lost during active Graves. My TSH was 4.5 at that point. We adjusted my meds to 5mg and I have been feeling great for several weeks. But my recent labs are weird: my TSH is 6.18 and my TSI is way back up to 477. I have an appointment next week with my endocrinologist but just wanted to see anyones take on this in the meanwhile. Im so confused!


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#2 mmztcass

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Posted 10 November 2021 - 04:56 PM

Hi MerBearMama and welcome:

 

Do you have the other labs that were done for the thyroid such as the Free T3 and the Free T4?  The Methimazole taken corresponds with the Free T4.  We often feel our best with the FT4 in the upper third range and the FT3 at mid range of the lab reference ranges.

 

The TSH lab is only useful to see what levels this is at for hypO or hypER.  

 

It looks like you may have gone hypO.  If that is the case, the FT4 will have dropped very low and it means that the Methimazole taken is needing to be adjusted to take less of it to allow the FT4 to come up out of the hypO levels.

 

See what the Free Ts are doing and it likely a dosage of 3.75 mg or 2.5 mg is needed to allow the FT4 to come up.  

 

The TSI will take a while to settle down to lower numbers.  Just not when dealing with hypO/hypER symptoms alternately until the lowest possible dose for the Methimazole is figured out to have the FT4 feeling best at the right levels.  

 

{{{hugs}}}}



#3 MerBearMama

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Posted 10 November 2021 - 05:00 PM

Thank you for responding so quickly! Yes he did test my T4, free. It is 1.1. So should I now be so concerned over the swings in the TSI? I was just expecting it to continue to go down but that more likely my misunderstanding of how it all works.

#4 MerBearMama

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Posted 10 November 2021 - 05:01 PM

I meant be * not * so concerned over the TSI.

#5 mmztcass

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Posted 10 November 2021 - 05:29 PM

Hi:

 

The TSI will not settle down as long as there is still swinging or yo yoing going with the Methimazole and FT4.  Once the 'right' dosage is found for the Methimazole to keep the FT4 in the upper third range and stays put, then the TSI will start settling down.

 

Did you ever have the TRAb tested to see how it was doing?

 

{{{hugs}}}



#6 MerBearMama

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Posted 10 November 2021 - 09:49 PM

No we have not ever tested Trab. I will ask him about it next week.

#7 Allies

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Posted 11 November 2021 - 02:50 PM

Hi MerBearMamma :)

Do you know the reference interval or reference point for the TSI? Sometimes TSI results are expressed as percentages, for example 477% where the reference point is around <120%. Sometimes the reference intervals are divided into segments for instance <0.10 is negative, 0.10 to 0.55 is considered a threshold level and > 0.55 represents active graves. A level of 477 in the latter type of TSI test is not quite the same as 477% in the first example - although both would be considered quite elevated.

If your endocrinologist will measure and monitor TRAB that might provide some useful info, especially going forward :). The TSI test measures thyroid stimulating immunoglobulin which is the particular sub-type of TSH receptor antibody (TRAB) that stimulates an excess of thyroid hormone production. There are two other types of TRAB, one that blocks thyroid hormone production and another that is called neutral (but the jury seems to out on whether that is actually the case). A TRAB test measures all types of TSH receptor antibodies together (including the TSI). Some people with graves have a mix of these different types of TRAB and this can result in some stimulation and blocking of thyroid hormone production at the same time - whichever type of TRAB has the upper hand at a particular point in time can result in over or under production of hormone, or an uneasy balance.

What sort of modifications have you and your nutritionist made to the autoimmune paleo diet? I imagine with a nutritionist on board you are paying close attention to getting enough nutrients? It does sound like there is still something that is aggravating your immune system though. It might not be dietary; things like stress, poor sleep, infections and environmental chemicals (including things like personal care products and household cleaning products) can upset our (over-sensitive) immune sytems too :(. Elaine Laird does some really good podcast/interviews based around the AIP, you might find some of those interesting or helpful :)

Cheers
Allies





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