Iodine Experiment Update - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Iodine Experiment Update

Iodine Dietary practice

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#1 Allies

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Posted 06 July 2020 - 05:49 PM

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These iodine experiment updates tend to be rather long winded, partly because I think it's important to preface the whole thing by explaining why I started out on this course of action - ie deficient iodine levels when tested, and low (but in range) thyroid hormones. I think it's also important to point out that this approach may not work for everyone. We all have unique situations; thyroid hormones that behave differently, unique combinations of antibodies, different medication, supplements or replacement hormones, and differing nutritional status and dietary practices. So this is by no means added here to say that anyone else should try this approach, it's a personal experiment born out of unique circumstances and pretty much flies against a lot of advice I have read over the past five or so years - so much so that I feel like a bit of a renegade (and it's thus a little stressful writing about this on a thyroid forum :( ) - but I kind of took it upon myself to report back on this experiment, and if someone else had started this I'd want to know what happened next...

So with those disclaimers out of the way, this is my ever-so-personalised iodine experiment update:


Basically, my reasons for adding in dietary iodine were:
How crappy I felt with low thyroid hormones
The observation that if my thyroid hormones got much lower my antibodies were likely to go up (based on past experience)
The fact that thyroid hormone replacement was unlikely to be offered
...and importantly, I live in an area where the soils are low in iodine AND follow I a dietary practice that does not include grains (so I'm not eating any of the bakery products that in Australia are mandatorily fortified with iodine)

Also this experiment was undertaken in the context of still having a thyroid gland and started around three months after stopping antithyroid medication


I'm now 21 months into this personal (n=1) experiment, and I've been slowly increasing my iodine consumption over that time. I started by boosting selenium levels, as per doctor's advice, then added in iodine (aiming to reach the RDI for these). Originally I used supplements, but switched to dietary sources later in the hope that my body might prefer a natural approach. Of course this means I've really no concrete idea how much I'm consuming on a day to day basis, and it's probably an inconsistent amount. A rough calculation, based on the label of the particular kelp product I've been using of late, indicated that I was taking 600 to 700mcg iodine per day on average throughout May and June this year, having gradually worked up to this amount over time. Each time my hormones dipped a bit lower, I increased the amount of iodine, but left the selenium intake pretty steady (in so far as it's possible to assess this using dietary sources). I'm aiming to increase iodine again, to around 800 to 900mcg, in response to my latest test results (I'll add these below for anyone curious enough to see how this has played out so far) and this time eating just a little more of the foods reportedly rich in selenium

This increasing iodine has not upset my antibodies, on the contrary they have gone down slightly. Whether the iodine and selenium has helped with this is unclear, but the important point, for myself, is that including and increasing consumption of these foods has not triggered higher overall Grave's antibodies :D (thus far at any rate :) )

Starting with September 2018 - as this was the point where I decided 'enough is enough, I can't function at these levels'

Free T4: 15.2 (10.0 - 21.0)
Free T3: 3.7 (3.0-6.7)
TSH: 0.59 (0.5 - 4.0)
NB: in July 2018 TRAB was 11.7 (ref <1.8)

Urinary spot iodine test returned a result of 70 - a bit deficient
Reference intervals
<20 µg/L: Severe IDD
20-49 µg/L: Moderate IDD
50-99 µg/L: Mild IDD
>100 µg/L: No deficiency

So I started the iodine experiment to see if correcting the iodine deficiency might improve my labs, with the following sequence of results. As stated above, initially used supplements to ensure I was at least meeting the RDI

November 2018
Free T4: 17.6 (10.0 - 21.0)
Free T3: 4.0 (3.0-6.7)
TSH: 0.13 (0.5 - 4.0)
TRAB was 10.2 (ref <1.8)

Increased iodine just a tad, because it seemed to be helping, but I thought more might be better :)

February 2019
Free T4: 19.5 (10.0 - 21.0)
Free T3: 4.1 (3.0-6.7)
TSH:. 0.046 (0.5 - 4.0)

May 2019
Free T4: 19.8 (10.0 - 20.0)
Free T3: 4.4 (2.8 - 6.8)
TSH. 0.064 (0.5 - 4.0)
TRAB: 7.0 (ref <1.8)

October 2019
Free T4: 17.4 (10.0 - 21.0)
Free T3: 3.9 (3.0-6.7)
TSH. 0.27 (0.5 - 4.0)

Increased iodine again, because, well basically I didn't like those results or how I was feeling

January 2020
Free T4: 19.1 (10.0 - 21.0)
Free T3: 4.3 (3.0-6.7)
TSH.: 0.18 (0.5 - 4.0)
TRAB: 6.3 (ref <1.8)

June 2020 (different laboratory, so slightly different ranges)
Free T4: 17.0 (10.0 - 20.0)
Free T3: 4.5 (2.8 - 6.8)
TSH. 0.31 (0.5 - 4.0)

TSI: 0.27
Reference intervals:
Negative: <0.10
Threshold: 0.10 - 0.55
Active Graves: >0.55

So you can see there's some fluctuation here - but for the most part I seem to have managed to keep my FT4 above 17 - too much lower than that seems to be associated with increased antibody production. It looks like I still have a bit of a problem with FT4 to FT3 conversion, although that might actually be slightly improved on these last results (what do you think Mmztcass? I'm trying to take into account the different reference intervals, so looking at it from where it sits within those different intervals)

It does occur to me that maybe I've already reached saturation point with the iodine, and that going above a certain level might actually decrease thyroid hormone production by some weird mechanism - I guess the next round of tests might signal if that is happening. My energy levels are still much better than they were a year ago, and hayfever still absent (hooray! Although I think this is more connected to going dairy free in September 2017) but I still take too long to recover if I overdo things. Brain fog is still intermittent, roaming aches and pains still present, ditto with anxiety. It feels like at the moment the iodine/selenium is maintaining the status quo - and because I'm not quite happy with that status quo, I'm pushing the envelope just that little bit further to see what happens next.

Cheers
Allies
:)


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#2 Allies

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Posted 06 July 2020 - 05:58 PM

An addendum to the iodine experiment

I adopted a paleo-style diet sometime during 2017, based mostly on the Wahls protocol. But what I didn't do was follow her advice on adding iodine to my diet - I felt at that point that advice around iodine from thyroid communities and experts far outweighed the rather oblique ( i thought) references to iodine in her protocol. You might well say I've had to rethink this a little, especially in the context of living in a country with iodine and selenium deficient soils. I could have abandoned the whole paleo thing, but I had seen some promising results in some areas (but not others) and opted to tweak it rather than try something completely different

I think it's noteworthy that Paleo-style diets usually remove grains and legumes, and some - particularly those aimed at autoimmunity, like the wahls protocol and autoimmune paleo - also remove dairy. In retrospect it should have been obvious that without some form of remedial action certain vitamins and mineral levels could potentially be negatively impacted. That was certainly my experience.

In a way, at least at the start of the iodine experiment, I was not adding in extra iodine, I was merely replacing the iodine I had so blithely removed. This doesn't actually go against advice on forums and from the experts. :) The fact that I may have gotten a little carried away with the whole thing, on the other hand probably does :(

There could be various reasons this hasn't backfired on me yet. Blocking TRAB may be preventing a proportion of all that iodine from forming thyroid hormone, or maybe I'm eating sufficient goitrogens to block thyroid hormone production. There may be an imbalance in my gut microbiome preventing full absorbtion of the iodine. Or a combination of these things, or something else completely. Ah! Nothing is ever simple is it? Hopefully this kind of illustrates what I said in the prior post about all of our situations being unique

#3 mmztcass

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Posted 07 July 2020 - 03:34 PM

Allies:

 

I feel you are doing just fine with trying to keep things balanced.    

 

I feel your FT4 dropped because of Australia being in winter right now.  The FT3 looks to be seeing an improvement with the increased Iodine.   

 

{{{hugs}}}       



#4 Allies

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Posted 07 July 2020 - 09:58 PM

It does sometimes worry me a little that I have pushed the iodine up quite a bit to achieve similar results over time. Yes I'm pretty chuffed that thus far it hasn't upset the TRAB applecart, and maybe any excess is just getting excreted (another spot urine test might show if that was happening) but I don't really know what else all that iodine might be doing. I've requested both a TRAB and TPOAB test via my doctor because it strikes me that TPOAB might be impacted by the extra iodine and this hasn't been checked since 2015 - so it's not something that I've been factoring in. Did you recently get your own TPOABS checked Mmztcass?

I guess, because I seem to like to worry about stuff, that I'm concerned about a switch over to Hashimoto's occurring at some point down the track. It would be annoying to fight so hard to keep my thyroid only to have it decide to self destruct anyway! I know this is thought to be a pretty rare occurence, but then so are complex patterns of TRAB - and I think my results and symptoms do suggest there is something complex happening there (but maybe everyone feels that way! :) ).

I don't know fellow grave-sters, does anyone else find the idea of Hashimoto's slightly terrifying?

#5 Mich!

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Posted 08 July 2020 - 06:32 AM

Hi Allies

 

I put my hand up for the idea of switching over to Hashimoto's terrifying!!

I have been quite stressed since my last results and am also feeling anxious about Covid 19. 

 

I would be pretty pleased with those results if they were mine.



#6 Allies

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Posted 08 July 2020 - 03:29 PM

Hi Mitch :)

I know my results haven't been 'dire' for quite some time, and I guess they are reasonably stable in that some movement up and down is probably normal. For the most part I don't feel very good when they are at the lower ebb and feel better when they are higher - hence the trying to nudge the hormones up a bit :) ha ha perhaps I am just a bit of a whinger! (Trying to be a pro-active one though! :) )

I do wonder if the experience of being hyperthyroid somehow makes hypo feel worse. Early on, it was an awful shock for my body to go quite quickly from quite high hormones (FT4 in the mid 70s and FT3 in the high 30s) to under range FT4 and very low in range FT3. I think that contrast and the physical shock may have felt worse than developing hypothyroidism over time - just a theory :) The problem is it's made me rather scared of going hypo again (and there could be some 'head' stuff going on making me feel worse at the lower levels because of that experience)

Yes, Covid is getting stressful again here in Australia :( just when it looked like we may have some sort of a handle on it and the fear was easing. This time around I'm 'slightly' less fearful, because looking on places like facebook some people with Grave's have now reported having had covid and getting better - like the rest of the population their experiences seem to have been a mixed bag, some have an awful experience, others a milder case. I don't suppose anyone is actively looking to see if thyroid hormones or thyroid autoantibodies play a part in how well or badly a person reacts to this particular coronavirus. And of course quite ill people tend to have low FT3 anyway so that particular blood parameter is perhaps not useful in this regard. The sensible approach is probably to continue to try and stay safe, and where possible not to stress too much (so much easier said than done!) ...and hope that Victoria manages to contain and reverse this outbreak, for their own sake - but also for the rest of us.

Stay safe! :)

#7 mmztcass

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Posted 08 July 2020 - 06:01 PM

Hi Allies:

 

I haven't done my labs yet.  Because of the way how things are with COVID-19 and the cases are rising, I am hem and hawing with having to go into my NP/Chiropractor doctor to get order labs.  

 

I do see my ND for doing energy work, however.  Even just stepping out of my home to visit with the ND and seeing how things are set up for the arrival of the appointment.  We now have to check in with our masks on and have our temperature taken.  Then we have to go to the restroom and wash our hands before being seen.   

 

If you can guess, I have not made very many trips outside of my home at all in the last few months.  :(  :rolleyes:  :blink:

 

{{{hugs}}}     

 

P.S.  I should add that like you I am wondering about having Hashi's myself now since I have been med free mid February.  I am going to do a self order of labs online of just the Free T3, Free T4, and TSH and see how I am doing.  



#8 Allies

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Posted 08 July 2020 - 11:26 PM

Hi Allies:
 
I haven't done my labs yet.  Because of the way how things are with COVID-19 and the cases are rising, I am hem and hawing with having to go into my NP/Chiropractor doctor to get order labs.  
 
I do see my ND for doing energy work, however.  Even just stepping out of my home to visit with the ND and seeing how things are set up for the arrival of the appointment.  We now have to check in with our masks on and have our temperature taken.  Then we have to go to the restroom and wash our hands before being seen.   
 
If you can guess, I have not made very many trips outside of my home at all in the last few months.  :(  :rolleyes:  :blink:
 
{{{hugs}}}     
 
P.S.  I should add that like you I am wondering about having Hashi's myself now since I have been med free mid February.  I am going to do a self order of labs online of just the Free T3, Free T4, and TSH and see how I am doing.

Can you get TRAB, TBII or TBAB tested where you are? Any of those might give you an idea about levels of blocking antibodies if your thyroid hormones come back as a little low. I'm guessing that with Grave's the blocking type of TRAB are much more likely to be what makes us a little (or a lot) hypo than Hashimoto's (wishful thinking?) I only really thought of checking the TPOABs because of the iodine; and because I thought of TPOABs then I started worrying a little about Hashis . I haven't researched it myself, but some commentators suggest that iodine may increase TPOABs, I thought it was about time it was checked to see what, if anything is happening there...

I was sorry to see that coronavirus is also on the rise where you are :(
Keep safe, and
{{hugs}}

#9 mmztcass

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Posted 09 July 2020 - 11:29 AM

Allies:

 

I can order a TPOab with the FT3, FT4, and TSH.  

 

I might as well just buckle down and make an appt with the NP/Chiro to order all the labs I want.  I would just only need to pay $10 USD for the labs vs. $120 USD out-of-pocket costs.  (sigh)  :blink:  :(  :o

 

{{{hugs}}}  



#10 Allies

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Posted 09 July 2020 - 01:24 PM

Allies:
 
I can order a TPOab with the FT3, FT4, and TSH.  
 
I might as well just buckle down and make an appt with the NP/Chiro to order all the labs I want.  I would just only need to pay $10 USD for the labs vs. $120 USD out-of-pocket costs.  (sigh)  :blink:  :(  :o
 
{{{hugs}}}


I guess it depends how safe it is (and how safe you feel) venturing out at the moment where you are (and where the doctor is). The difference in cost is huge! I think it's possible to have an educated guess at what the TRAB is doing by looking at the hormones in relation to the TSH :)
{{hugs}}

#11 Mich!

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Posted 10 July 2020 - 06:23 AM

Hi mmztcass

 

I agree with what Allies said although the cost difference is large it depends how safe you feel venturing out, how far it is ect.

Way up the costs in all areas. 

I feel for you not going out but it is the best way to stay safe.

Covid 19 is so nerve wracking. The area i live in was free of infections for a couple of months and we had no community transmissions.

My region has just had a massive amount of holiday makers from a city recently declared a hot spot. Most peeps in my small community are staying at home now. Waiting to see what these tourists have brought with them. Buckling up. Home is a good place to be.



#12 mmztcass

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Posted 10 July 2020 - 02:32 PM

Hi Allies and Mich!:

 

Thanks for the feedback. 

 

I have just found out that my medicare insurance will cover for tele-health calls on the computer or cell phone.  I will schedule one ASAP as the tele-health calls are ending July 24th unless the insurance chose to continue with these for the time being.  Given that the state I live in USA has the highest COVID-19 cases, the tele-health calls has a chance of being continued.  I will have my RN son sit in with me on the call and help to interpret for me anything I miss what the doctor says.  (I have a profound hearing loss).  

 

Now I just have to only deal with one appointment to the labs.

 

{{{hugs}}}



#13 Allies

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Posted 11 July 2020 - 05:32 PM

That's a great solution! :D

When you go for the blood draw, perhaps you could call them and ask about their least busy times?

#14 Allies

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Posted 29 July 2020 - 03:43 PM

Hi all :D

I just received the results for the TRAB and TPOab tests.

TRAB has gone down from 6.3 to 4.9 IU/L (ref <1.8 ) :)

TPOabs are 55 kU/L (ref <5.6)
In April 2015 they were 220 kU/L (ref <35)

Huge change in the TPOab reference range for some reason, I wonder why that is, and if it means anything? Perhaps the test is more sensitive? It's still the same unit of measurement, but I'm a little confused as to whether I can really compare the new result to the old one. Although the number returned is much lower it seems proportionately higher when compared against the new reference range. Any thoughts? Have just given myself a wee headache trying to convince Dr google to explain it to me...

But I'm pretty happy with that TRAB result; that's the lowest result I've ever had for that, and it's reassuring that it's continuing the downward trend :D

Allies

#15 mmztcass

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Posted 29 July 2020 - 04:28 PM

Hi Allies: 

 

I was just now reading through several hypOthyroid sites on the TPOab reference ranges.  One site mentioned that anything below the range was fine but going above the range was something to keep an eye on.    

 

I think for the TPOab anything below 5.6 is good.  I don't understand why the differences for the reference range numbers especially when these are both in the kU/L?  

 

{{{hugs}}}

I think for the TPOab anything below 5.6 is good. 







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