Hoping For Remission, Not Quite There Yet! - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Hoping For Remission, Not Quite There Yet!


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#1 felix

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Posted 03 April 2020 - 03:56 PM

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So, I was hoping that these last blood tests would show that I am in remission since I have been feeling remarkably well and have been taking very low doses of methimazole; however, the antibodies are stubborn and based on their levels - I am not in remission!  :angry:  I'll post below my recent labs and see if anybody has any thoughts / comments.

 

April 29, 2019

      

TSI           1.32      <.55

TGAB       3           <4

TPO         193        <9

TG            31.7      <50

 

October 15, 2019    Methimazole 1.25 mg every other day  (for previous 3 months)

 

TSH           0.01    0.40 - 4.50

T4 Free      1.4      0.8   - 1.8

T3 Free      3.4      2.3   - 4.2

 

Nov 15, 2019         Methimazole 1.25 mg an average of 3 times a week   (for the previous month)

 

TSH           0.02     0.40 - 4.50

T4 Free      1.3       0.8   - 1.8

T3 Free      3.2       2.3   - 4.2

TSI              221     <140%

TRAB         15        <or - 16%

TPO           163     <9

Thyroglobulin Antibodies  2   <or = 1 iu/ml

 

 

Jan 22, 2020         Methimazole  1.25 mg every third day    (for previous 2 months)

 

TSH          0.04      0.40 - 4.50

T4 Free     1.1        0.8   - 1.8

T3 Free     2.8        2.3   - 4.2 

 

March 24, 2020     Methimazole  .65 mg every third day (Feb 4 -March 10)  Methimazole .65 mg every 5 days (week of March 10 to present)

 

TSH           0.027       0.45   -  4.5

T4 Free     1.36         0.82   -  1.77

T3 Free      3.0          2.0     -  4.4

TSI            1.23         0 0     -  0.55

TPO           233           0 - 34       

 

As you can see, my medication dosage is fairly minimal and at this point I even wonder if it has any clinical significance...  At least my hormones haven't gone up too much on this dose.  I find it a bit difficult to interpret the antibody levels, especially given the ranges used by the various labs!  And kind of baffling to me, the TPO level is the highest it's ever been; at diagnosis it was 208 followed by a downward trend ( in November it was 163) - I'm not sure what that means and what changed??

 

Any ideas or comments welcomed!  :)




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#2 mmztcass

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Posted 04 April 2020 - 02:55 PM

Hi felix:

 

Like you with your TPOab is going up, I suspect mine is going up too.  However I don't want to get labs until after the COVID-19 situation have improved.  I had been taking the MMI in wee doses of 0.625 mg once or twice a week and still have been feeling hypO.

 

{{{hugs}}}



#3 Allies

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Posted 04 April 2020 - 07:05 PM

Hi Felix :D

 

Well I certainly have some thoughts and since you want to read them will comment :D The usual - I'm not a doctor thingo applies :D

 

TSI              221     <140%
TRAB         15        <or - 16%
TPO           163     <9

 

A little bit of guesswork here as it's not possible with the antibody tests currently used outside of research circles to directly compare TSI and TRAB (one is a competitive assay and the other is an immuno assay they measure antibodies in very different ways ) TSI (the TSH receptor antibody that stimulates thyroid hormone production and causes Grave's hyperthyroidism) being elevated and the overall TRAB (which measures stimulating, inhibitory and 'neutral' TSH receptor antibodies all together) being somewhat lower suggests that on balance your TSH receptor antibodies were slightly more stimulating than inhibitory at that point.

 

The 1.25 mg of methimazole at various spacings looks like it was enough to override this and your thyroid hormones moved down accordingly. Since reducing the dose to 0.65mg your hormone levels have risen a little bit, which is probably not a bad thing given how low they were before :)

 

TSH           0.027       0.45   -  4.5
T4 Free     1.36         0.82   -  1.77
T3 Free      3.0          2.0     -  4.4
TSI            1.23         0 0     -  0.55
TPO           233           0 - 34       

 

The still high TSI means that you still have too many stimulating TRAB in circulation, whether or not your current methimazole regime is enough to hold thyroid hormone production down at to a safe level will probably become apparent next time your hormone levels are checked :)

 

The inconsistent way TSI is measured is very frustrating isn't it? How the heck does "TSI:  221   <140%" compare to "TSI : 1.23   0 0     -  0.55"? I think all we can really conclude is that your stimulating TRAB are still elevated, without antithyroid meds, and unless your inhibitory TRABs have increased, hyperthyroidism might reoccur so best keep a sharp eye on your hormone levels for a bit longer and probably don't ditch the methimazole just yet - well that's my ten cents worth any way :)

 

Elaine Moore states that TPO antibodies are mostly reflective of inflammation; reading around on hypothyroid forums I get the impression that unlike TRABs the TPOabs can move up and down quite quickly (probably something to do with half-lives of different types of antibodies/immunoglobulin) so personally I wouldn't stress too much about those unless they rocketed up a lot more.

 

On the bright side you feel well! That's a huge accomplshment so give yourself a pat on the back and don't beat youself up :) you're on the mend, hold onto that thought, but a bit of patience might be needed as far as medication and testing goes (aaargh!)



#4 felix

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Posted 06 April 2020 - 10:43 AM

Thank you both for your input! It helps to clarify my own thoughts and way forward - speaking of, I will continue to take my wee dose methimazole and will test in about a month! If I have to take this dose indefinitely, it's not a big deal, right Linda? By the way, how are your antibody levels, how have they been trending over the years for you?

 

Thanks Allies for your encouraging words!  :) I can't take any credit for feeling well but I'm glad and thankful for it! And, indeed, patience in Grave's, is a virtue I must cultivate!  :(

 

Be well!  :)



#5 mmztcass

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Posted 07 April 2020 - 05:02 PM

Hi felix:

 

I have only had my antibodies (the TSI) checked three times.  The first time was high over 100+% within a year of being on the MMI (2004).  The second time it was down in the mid 20s.  The third time, which I believe was back up at 89 in 2016 (?). 

 

However at the last time it was checked, my Free Ts were very low and I was taking something like 1.25 mg of MMI per day.  I was also going through the period of illness with the hypO.  

 

As of right now, I am not sure where I am at.  

 

{{{hugs}}}



#6 felix

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Posted 08 April 2020 - 12:01 PM

Maybe it's better not to know!  :D  

 

Be well!



#7 mmztcass

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Posted 09 April 2020 - 01:37 PM

Hello Felix:

 

I would bet with my feeling mostly hypO that my TSI levels are up higher.  Well as soon as I can, I will get labs done.  I will wait until the world has normalize.    

 

Be well too. 

 

{{{hugs}}}  



#8 felix

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Posted 03 June 2020 - 11:52 AM

Hello again,

 

so I went to see the endo last week of May and had lab tests; I've been taking 0.65 mg methimazole every 5 days since the week of March 10 (almost 3 months!) My levels have remained stable on this dose so I think I will change to taking 0.65 mg methimazole once a week and retest in a couple of months, and, at that point, I may consider stopping taking it altogether, depending on the results. I will also have the antibodies tested next time (I already have the lab order!  :))  

 

March 24, 2020

 

TSH           0.027       0.45   -  4.5

T4 Free     1.36         0.82   -  1.77

T3 Free      3.0          2.0     -  4.4

 

May 20, 2020

 

TSH           0.02         0.30   -  4.5

T4 Free     1.36         0.90   -  1.80

T3 Free      2.9          2.2     -  4.2

 

Anyone, any thoughts, comments, questions, advice? Everything is welcome!  :)



#9 Allies

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Posted 03 June 2020 - 01:01 PM

Hi Felix

 

Your thyroid hormones look like they have remained pretty stable on that really low dose :D

 

Your dose is so low it might not be doing much at all, if anything (of course that also means it's higly unlikely that it is doing any harm either :D ). I think I understand the idea of reducing the frequency of the dose before trialling dropping the meds altogether. That was the approach I took before coming off the meds too, although I only went from once a day to once every two days (I was on 1.25mg of carbimazole at the time) i had the choice after that point to either keep taking that negligible amount or stopping altogether - I chose the latter - my thyroid hormones, TSH and antibodies didn't change as a result (and perhaps they would also have stayed the same if I'd continued meds or reduced the dose further).

 

Hormone levels have been pretty stable for the last (close to) two years without meds. I have managed (by hook or by crook, but without thyroid hormone replacement) to nudge my FT4 up slightly, FT3 has been a little trickier to move. My antibody levels are ever-so-slowly moving down - perhaps they may have moved down quicker if I'd stayed on a very low dose of meds; I guess I'll never know :)

 

So staying on a negligible dose or stopping altogether? Either might work, so it's a personal decision :)



#10 felix

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Posted 03 June 2020 - 02:06 PM

Hello Allies!

 

I hope all is well ! Thanks for responding so promptly. I think you're right - my current dose is not doing much of anything, one way or another! I've been on a very low dose since late 2019 so if my levels haven't  moved up, it may be because, like you said once, although I still have Grave's, it's probably not active Grave's!  I'm feeling quite well so, all in all, things are good! :D  We'll see what the rest of the summer brings....

 

What are your current levels?

 

I've been reading an interesting article on the importance of adequate levels of Vit D3 in autoimmune disease. https://www.ncbi.nlm...les/PMC3166406/ Most of us probably know this already, but just as a reminder! :D



#11 Allies

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Posted 03 June 2020 - 04:39 PM

Hello Allies!
 
I hope all is well ! Thanks for responding so promptly. I think you're right - my current dose is not doing much of anything, one way or another! I've been on a very low dose since late 2019 so if my levels haven't  moved up, it may be because, like you said once, although I still have Grave's, it's probably not active Grave's!  I'm feeling quite well so, all in all, things are good! :D  We'll see what the rest of the summer brings....
 
What are your current levels?
 
I've been reading an interesting article on the importance of adequate levels of Vit D3 in autoimmune disease. https://www.ncbi.nlm...les/PMC3166406/ Most of us probably know this already, but just as a reminder! :D


My main 'problem' since coming off meds is a lack of frequent testing! ...so my last few test results:

 

10 May 2019

 

TSH: 0.064 (0.5 - 4.5)
FT3: 4.4 (3.0 - 6.7)
FT4: 19.8 (10.0 - 21.0)
TRAB: 7.0 (<1.8)

 

29 October 2019

 

TSH: 0.27 (0.5 - 4.5)
FT3: 3.9 (3.0 - 6.7)
FT4: 17.4 (10.0 - 21.0)

 

3 January 2020

 

TSH: 0.18 (0.5 - 4.5)
FT3: 4.3 (3.0 - 6.7)
FT4: 19.1 (10.0 - 21.0)
TRAB: 6.3 (<1.8)

 

It's a grand experiment trying to see if I can influence these through diet and lifestyle choices, because not many doctors are likely to prescribe replacement hormones just because I tell them the (euthyroid) results from October 2019 are a little too low for me. ... although my doc did say my TSH at that point was starting to look a little hypOthyroid for me, (but that the thyroid hormones themselves were not TOO bad.) Looking back, I'm not at all sure thyroid hormone replacement would have been the right option for me personally since by January my hormones were back in a much 'happier' place anyway.

 

From memory when I came off the meds my FT4 had been, and stayed, around 15 for seemingly ages, but I eventually managed to coax it up :D (or it did that all by itself!) My TRAB 5 months after stopping meds was:

 

2 November 2018: 10.2 (<1.8)

 

It's probably about time I got all these tested again, because who knows what sort of effect all this world-wide stress and uncertainty may have on our immune systems!

 

I think we do need to consider vitamin D and get levels tested from time to time. It seems even more important at the moment! From that paper you linked:

 

"One recent well-designed prospective, double blind placebo study using an objective outcome, nasopharyngeal swab culture (and not self report), and a therapeutic dose of vitamin D showed that vitamin D administration resulted in a statistically significant (42%) decrease in the incidence of influenza infection[15]." (p.6)

 

I restarted vitamin d supplementation a couple of months ago due to the virus situation and because here we were heading towards winter.



#12 mmztcass

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Posted 04 June 2020 - 12:03 PM

Hi Felix:

 

You are probably more than ready to get off of the MMI.  Let's see how those antibodies are doing at your next test.  

 

{{{hugs}}}



#13 felix

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Posted 04 June 2020 - 01:34 PM

Hi Linda,

 

Thanks for your input! I'm not holding my breath on the antibodies since they've disappointed me before! :rolleyes: (But I'm still eager to see their status...)

 

Years ago, around 2009, I was diagnosed with Vit D deficiency on a routine physical (same way my Graves was discovered because of a suppressed TSH during an annual physical.) At the time I was living in Florida, aka the Sunshine State, so lack of sunlight was not an issue as well as what I consider an adequate dietary intake of Vit D. Ever since, I'v been supplementing with D3; anytime I slack off, my levels dip again to borderline low. To me, that begs the question why and whether a synthesis/conversion body process is faulty requiring me to supplement irrespective of sun exposure or dietary intake.

 

From reading different articles, it seems that many autoimmune disorders are characterized by Vit D low levels or deficiency - I guess it may be a question of what came before, the chicken or the egg!  :D So, although, supplementing is only treating the symptom and not really addressing the cause, I will happily supplement if it will be positive for my health, including benefiting  the immune system and Grave's!



#14 Mich!

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Posted 04 June 2020 - 07:07 PM

Hi Felix

 

Last year in July when having odd symptoms i had bloods done and my Vit D levels were red flagged. They were extremely low. As was my iron. 

As further investigation wasn't done at the time ie Thyroid Hormone levels and because i hadn't been having my Vit D and Thyroid hormone levels tested regularly i will never know did one come before the other.

 

The GP at the time was talking about how low Vit D was linked to being the precursor to various diseases and talked about studies on Vit d deficiency and links to disease ect. At the time i was focused on there must be more than Vit d deficiency going on here so wasn't that attentive!

 

I was taking 5000iu of D3 for a few months after this test but got out of the habit when i went OS later in 2019.

 

I have been taking 5000 iu of D3 daily again since mid February when i got diagnosed with Graves. I live in Australia and we are just going into winter. I didn't get tested for Vit D in Feb i just starting supplementing. I had my Vit D tested in early May and it is still just outside of the ideal for an auto immune disease. I will keep supplementing at this dose as we are going into winter (winter is the time i generally don't avoid the sun though), also with "The Virus" hanging around figure it is a good time to be taking a high dose.

 

After my GD diagnosis I did wonder for a time if loosing the momentum with supplementing D3 was what caused Graves D. 



#15 felix

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Posted 05 June 2020 - 01:21 PM

Hi Mich!

 

I was supplementing Vit D3 for years before my Grave's diagnosis in fall of 2017 so I'm not sure sure that a low D level caused / allowed Grave's to develop. I think a low or deficient D may be a symptom of an active underlying process that facilitates the development of an autoimmune disorder. When we supplement we only raise the serum level of Vitamin D so when we test for it, it will show adequate levels; apparently there are many Vit D receptors throughout the body and it's not clear that the Vit D found in the serum will necessarily bind to those receptors, potentially depriving those organs of necessary Vit D. In my view and understanding, supplementing may help but does not have absolute certainty associated with it! So, I continue to supplement (about 4 times a week, 5000 iu D3) also taking at the same time magnesium, and just started this week with Vit K2 (MK-7)   https://www.ncbi.nlm...les/PMC4566462/

 

So, to give an answer to your question, I think that low Vitamin D is only one piece of the puzzle in the context of Grave's disease and not what definitively caused it!



#16 felix

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Posted Yesterday, 05:00 PM

Hello everyone,

 

I hope you're all doing well - Covid and everything else notwithstanding!

 

I have new lab results to share; labs done on August 5th; last methimazole dose of .65 mg taken on June 29th,2020.

 

TSH   0.01    0.4 - 4.5

T4 F   1.3      0.8 - 1.8

T3 F   3.3      2.3 - 4.2

TSI    155      <140

TRAB 2.12    <or = 2.0

TPO   349     <9 

 

 

March 24, 2020    

 

TSH           0.027       0.45   -  4.5

T4 Free     1.36         0.82   -  1.77

T3 Free      3.0          2.0     -  4.4

TSI            1.23         0 0     -  0.55

TPO           233           0 - 34       

 

It seems that the hormone levels are keeping steady without any medication. I wonder if the TSH will ever show up again or if the communication loop has been forever  altered??  Not quite sure what to make of the antibodies levels, especially given the different testing / measuring methods. I am a bit puzzled /concerned by the TPO creeping up...

 

I think, at this point, I will simply focus on the free thyroid hormone levels since I seem to be rather powerless to influence my immune system in ways I think it should behave - I think I've met my match  :mad:

 

I look forward to any observations!  :)



#17 mmztcass

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Posted Yesterday, 05:43 PM

Hello felix:

 

It sounds like you are still feeling fine?  If so I wouldn't worry at this point as long as your Free Ts are where you would feel your best there at.

 

{{{hugs}}}



#18 felix

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Posted Yesterday, 07:17 PM

Hello Linda, 

 

I'm feeling well, slightly more tired than usual but nothing I can't live with at this point! It's in the triple digits here now and I'm kind of over it (40s celsius)!!!  I honestly don't know what my ideal hormone levels are since I've always felt well even when they were too low -    I guess I'll just have to wait and see....

 

I hope you're feeling well and doing well! 



#19 mmztcass

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Posted Yesterday, 07:24 PM

felix:

 

I am doing good and have been MMI free for six months now.  Where I live (Arizona) has been triple digits too.   :rolleyes:  :blink:

 

{{{hugs}}}







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