Starting My Atd And Change Of Lifestyle - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Starting My Atd And Change Of Lifestyle


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#1 Tiffanyt

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Posted 27 March 2020 - 04:20 PM

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Hi there new friends! 

 

Here is a little about my story and having graves disease

 

I just turned 30 years old and i was diagnosed with graves disease back in November of 2019.

Before being diagnosed, Ive experienced hot flashes, being irritable with a lot of things and lost of a lot of hair. Then I noticed my left eye to slightly buldge more than my right eye. But it would come and go every other day. 

I went to my doctor, got a blood test and here were my results in

Nov 2019::

 

TSH:   <0.1 uIU,ml

 

FT4:    2.9 ng/dl

 

FT3:    248 ng/dl

 

Thyroid stimulating immunogloblin: 443% 

 

Then diagnosed with Hyperthyroidism Graves disease. 

I was then sent over to a Endo doctor and was prescribed Methimazole 10mg tablets. 

I was told by the doctor this illness is non reversible and that changing up my diet wouldn't help at all. 

 

Me being stubborn and strong willed. I chose NOT to take the medication and I changed up my diet by eating more veggies and fruits. I then took another blood test to see if it got any better. just a little better but still high.

Here are my January 2020 results::

TSH:   <0.1 uIU,ml

 

FT4:    2.8 ng/dl

 

FT3:   187 ng/dl

 

Than mid February 2020 i chose to go on a clean gut diet. Which included a bunch of supplements and a super clean diet. (no sugar, no gluten and preservatives). I tried to go towards a "organic/holistic" route of fixing my hyperthyroidism, instead of the western approach of medicine.    I did it for 2 1/2 weeks. It was difficult at first but i got use to it and then saw some improvements. My skin was glowing and my left eye was less swollen looking. Unfortunately, i somehow developed a uti, went on antibiotics and i didn't complete the 4 week clean gut program. 

 

I've gone back to eating bad and everything is flaring up again. 

My left eye is bulging larger that ever and the pulsing behind my eye came back. i felt hopeless and I wasn't sure where to go for help. 

 

I then chose to go online and find some help on what to do. 

i found this forum and now I"m excited to take a hold of this illness and defeat it. 

 

Today i chose to take the medication of 10mg MMI and dated my calendar of when i should take my next blood test. 

I do not regret not taking the ATD right away because the clean gut diet taught me a lot on the bad foods we eat and the superfoods that are helpful with this new lifestyle of graves disease.

 

I do want to add necessary supplements and also take the ATD at the same time. I am also changing my diet and eating healthier. 

 

 

I've done research on the disease and supplements. 

I found that adding zinc and selenium will help with inflammation. What is a good dosage of each vitamin? 

 

Are there any brand recommendations for these supplements? 

And is it possible to take too much supplements included with the ATD medication? 

Does anyone have additional tips with graves ophthalmology? I just want the swelling to go down asap. It caused a lot of insecurities and i just want my face to go back to normal.  

 

Thank you in advance! 

 I hope to get some more input with people dealing with hyperthyroidism and maybe help others who just started the journey as I am. 

 

Tiff:)




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#2 mmztcass

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Posted 27 March 2020 - 04:31 PM

Hi Tiffanyt and welcome:

 

Before I go any further in reading.  Could you please add the lab reference ranges for the tests that were done above?  Every lab company can have their own lab reference ranges that they use.

 

I will now go ahead and finish reading.   :)

 

Thanks and {{{hugs}}}



#3 Tiffanyt

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Posted 27 March 2020 - 04:46 PM

Hi mmztcass!

 

Im excited you responded because other posts i noticed your reply to each and you give great feedback! 

 

Here are my results and the standard range::

November 2019::

 

[color=rgb(40,40,40);font-family:helvetica, arial, sans-serif;]            [/color]My results:[color=rgb(40,40,40);font-family:helvetica, arial, sans-serif;]         [/color]Standard range:

TSH:   <0.1 uIU,ml           0.4-4.2 uIU  

 

FT4:    2.9 ng/dl               0.8-1.7 ng     

 

FT3:    248 ng/dl              50-170 ng.dL

 

 

 

Here are my January 2020 results:: (still without any antithyroid medication)

            My results:         Standard range:

 

TSH:   <0.1 uIU,ml            0.4-4.2 uIU  

 

FT4:    2.8 ng/dl                0.8-1.7 ng     

 

FT3:   187 ng/dl                50-170 ng.dL



#4 mmztcass

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Posted 27 March 2020 - 09:10 PM

Hi Tiffanyt:

 

I am back.   :)

 

Are there any labs for the month of March, 2020 to determine where at now for the amount of Methimazole to take?  The January labs are too old now to base off of on with taking the MMI (Methimazole).  

 

Zinc can be safely taken for up to 40 mg.  The Selenium, no more than 200 mcg per day.  I take the vitacost.com brand (Synergy) or the NOW supplements.  I also use the Pure Synergy company for additional 'safe' supplements and food powders.  Look for the L-OptiZinc to take which I feel is the best kind.  For the Selenium I am not sure which would be the best type to take.

 

Find a good multi without Iodine in it.

 

In addition to having change the diet, look into changing any personal and household products for the least amount of chemicals or the safer chemicals to use.  This was part of my recovery with making those changes to do well and living away from a landfill.  

 

More later...

 

{{{hugs}}}



#5 Tiffanyt

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Posted 27 March 2020 - 10:02 PM

Hi linda.

thank you for your reply and great information on the supplements.

 

I haven't taken a recent blood test because the fear of coronavirus right now. 

I'm going to contact my dr to see if its safe. 

 

Do you suggest any other supplements? for both hyperthyroidism and thyroid eye disease? 

 

Also through your experience of helping people. Does the swelling of the eyes go down? or is this a lifelong thing too?

 

Thank you  :)



#6 mmztcass

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Posted 28 March 2020 - 11:12 AM

Hi Tiffanyt:

 

I have never developed any bulging thyroid eye disease although I did have blurriness and double vision at the early stages when my GD wasn't balanced.

 

For those who do suffer physical symptoms outer looking appearances, it can certainly be challenging.  We follow Elaine Moore's website along with here.  I would suggest consuming some organic/non-GMO flax seed oil.  Also look for healthy cage-free organic eggs.  

 

Here is one of Elaine's articles on TED and it offers additional suggestions for the TED issues:

 

https://elaine-moore...63/Default.aspx

 

As for vitamins, I have found in my own experiences that synthetic vitamins/supplements does not work well.  Fillers are used in them that can cause more problems. 

 

I have had been using organic/non-GMO vitamins for awhile.  The brand I used is called Phytovitamins.  It can be found at amazon.com and at the:

 

https://www.naturesb...e-food-vitamins

 

But lately I have been using the wholefood powders from the Synergy Company as I feel these works better:

 

https://www.thesynergycompany.com/

 

I also use the B vitamins and minerals as well as the liquid magnesium from this company:

 

https://www.rnareset.com/

 

I find these combinations from the Synergy Company and the rnareset Company to work better for me.  

 

I would suggest you do the research and see what works the best for you.  A good vitamin and/or supplement means that it wouldn't cause any hypER reactions within us to make the antibodies go up even higher.  Believe me, there have been vitamins/supplements out there that have aggravated my GD even more.  

 

Hope this gives you some idea of what to do.  

 

{{{hugs}}}



#7 Allies

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Posted 28 March 2020 - 06:37 PM

Hi Tiffanyt! :)

 

Dietary changes can be hard to maintain at first! I'm sure that diet and lifestyle interventions can help (alongside medication when it is necessary), but it seems we all have to find what works for us as individuals, not all of us will repond well to any particular dietary protocol because we are all different. It can be a rather laborious process of trial and error.

 

In my own process of trial and error I have found that removing grains and dairy caused a measured iodine deficiency and an assumed reduction in calcium intake, so I've readjusted my diet to include more foods that will hopefully cover these shortfalls. Also my initial dietary interventions went along the lines of 'if such and such a superfood is good for me then more must be better' the result seemed to be consuming way too many high oxalate foods (spinach, chard, sweet potato, almonds, chia and beetroot :( ) Subsequently (and cautiously) lowering my oxalate intake appears to have significantly reduced aches and pains that had been bothering me since adopting a healthy diet - it could just be a coincidence, but it's a relief to only get achey when I overdo things as opposed to aching for no good reason at all! :) especially in the context of eating what I was convinced was a healthy diet!

 

I'm bringing up the oxalate thing here because it's possible there may be a connection between excessive oxalate consumption and UTIs - if you approached your healthy eating the same way I did initially with mountains of spinach and sweet potato and oodles of almonds, slowly reducing your intake of these might be helpful?

 

Food for thought (if you'll forgive the pun :) )

 

Cheers
Allies
:D



#8 mmztcass

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Posted 28 March 2020 - 07:26 PM

I still have my sweet potato every now and then.  I just try not to go overboard with those Oxalates.   :o

 

{{{hugs}}}



#9 Tiffanyt

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Posted 28 March 2020 - 10:15 PM

HI Allies!

 

Thank you so much for your reply! 

Today i thought about my smoothies and I really do believe I've been eating too much spinach. It's been in my smoothies everyday. Along with chia seeds. 

And yes, this food diet is laborious but in the end its our body that we need to care for. And I've learned that balance is key.  Even though i want to eat every thing i look at   ^_^

 

Question::

          Do you suggest in a paleo diet to help with hyperthyroidism and TED? 

I'm trying to find a diet with guidelines and lists of foods to eat and to avoid.

 

 

 

@mmztcass  Hi!

 

Thank you for that list of sites and knowledge!

of course i have questions. and thank you so much for the help. 

 

So i did more research and a lot on Elaine Moores site. (which is super helpful, along with this forum)

in the forum over there, she mentions that selenium,  coq10 and vitamin D are really good supplements to be taking with TED and hyperthyroidism. 

 

Do you think a multivitamin with all those vitamins and more is good? Or do you think i should take each vitamin separately? 

I looked up synergy's website and theres a Vitaminherb for women 

https://www.thesyner...y.com/vmh-women

 

Any of those included vitamins harmful to TED or hyperthyroidism??

 

Ive also started these supplements::

B complex plus, magnesium and probiotics. 

 

I really want to take supplements to help with the inflammation in my eye right now and it sounds like Selenium will help. 

 

 

thank you again :)

 

Tiffanyt



#10 mmztcass

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Posted 29 March 2020 - 01:17 PM

Tiffanyt:

 

Unfortunately the women's vitaminherb is a no no.  :(   There is Iodine in it that many of us with Graves' Disease need to avoid as Iodine is a trigger.  If it were me I'd find a plain multi without all these herbs in it and a no Iodine too.  Please research each herb individually with the words Graves' Disease to find out if safe to use or not.  Ashwagandha is a no no herb.

 

I just went with the Carrots, Wheatgrass, and berries powders as it is grown organically in a good quality soil that has minerals in it.  So many crops out there nowadays are poorly grown along with being sprayed with Round Up which makes them GMO and no minerals in the soil.  The USA population are lacking minerals to do well with their health.  Many of other countries are in the same boat as the USA.    

 

Is the B Complex Plus made by Pure Encapsulations or by Seeking Health?  I used to take PE until I found out that they made their Bs from the Corn.  I have an issue with their Corn they use and it is also synthetic. 

 

What may work for one person with GD will not work for the next GD person.  I have had to research intensively the past almost 20 years now to find what I could take safely and what I couldn't.  I do what I can in finding what works for me in terms of wholefoods based vitamins and minerals for the GD I have.   :)

 

{{{hugs}}}



#11 Allies

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Posted 29 March 2020 - 03:13 PM

Hi again :D

 

The diet thing is a bit of a minefield! So many options to choose from all of which promise good health results. In amongst the conflicting dietary advice out there, some common ground does seem to emerge: Lowering sugar consumption and lowering or avoiding manufactured foods (read the labels and avoid foods with excessive ingredients, lots of sugar and/or lots of numbers). Figuring out food intolerances can also be important - and this is where self-experimentation and keeping a food and symptoms journal comes in handy :)

 

I personally follow a very veggie dense paleo-type diet and avoid most processed and pre-packaged foods. It's very similar to the Wahls protocol, but I tend to experiment with it a bit (not always successfully). Just when I feel I may have ironed out a few of the kinks, along comes covid-19 and throws a bit of a spanner into the works - mostly because I tend to visit several different places to get my weekly supplies and this is proving trickier and rather stressful at the moment :(

 

While I like to rotate my foods a bit to try and avoid any more surprises (like oxalates) there are certain things that I eat fairly regularly to try and get specific nutrients: kelp and seafood for iodine*, Brazil nuts and sunflower seeds for selenium, pepitas for zinc, tinned sardines (bones and all!) for calcium, organ meats for CoQ10, B12, iron and vitamin A, nutritional yeast for extra B vitamins. My panic shop probably looks rather different to a lot of people's :)

 

*iodine: whilst this can be a trigger for some people with autoimmune thyroid disorders, the body does need some in order to make thyroid hormones, I think Elaine Moore recommends trying to keep consumption at around 150mcg per day which is the recommended daily allowance. I found that when I removed grains from my diet, and later dairy products, that my urinary iodine levels dropped to below this level (my doctor tested for that) - my thyroid hormones also became too low (which is awful in a different way to being hypEr) So for myself, living in an area where soils are deficient in both iodine and selenium I purposefully try to add these back via diet. This may not be necessary in other parts of the world, or even advisable for some people. An example of individuals being different and perhaps needing tailored approaches to diet.

 

I think spinach and almonds were a bit of a downfall. Almonds because I don't have an almond "off switch" and spinach because it was so cheap to buy organic. Easy to grow too, perhaps I should have wondered why the slugs and snails left it alone and instead ate all my pak choi! I was managing to cram at least a cup full of spinach into my daily smoothy, apparently that's an horendous amount of oxalates :( I still have regular smoothies, but use different leafy greens (and try to rotate them just in case :) )

 

:D



#12 Mich!

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Posted 30 March 2020 - 07:11 PM

Hi Tiffanyt

 

You mentioned you were unsure of having a blood test to see where your Hormone levels were at before you started ATD's due to Corona V.

 

I recently had a blood test and was informed by the health care worker taking my blood that due to the ramping of of Corona V testing in my state the results would likely take longer to come back. This was the case. So depending on where you live take into account that tests may not come back within their normal time frame.

 

If you are uncertain or fearful to have bloods taken because of Corona v. I agree while having bloods taken social distancing cannot be practised. I think it is important to remember when in this situation that,

 

The health care worker taking your bloods is more fearful of you.

 

You maybe the 50th person He or She has had to stand close to and draw bloods from as well as touch you to get a vein. This health care worker if they have children, would also most likely have their child or children in child care or school in order to come to work making their risk more heightened. 

 

Bloods cannot be taken over the phone or in a skype consult. We need to be mindful of our fear and respect those doing this job. Try to lighten up their days and remind them of how grateful we are for their service. 



#13 Tiffanyt

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Posted 30 March 2020 - 10:40 PM

@Mich

Thank you for the reminder. 

You are totally right about the fear that the health care workers would have of me more than me of them. 

Thanks for giving me the guts to go.  :) 

Ill post up my results once i get them back! 

And i know that'll help me more with figuring out this journey with TED. 

 

:D  :D

tiffanyt



#14 Tiffanyt

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Posted 31 March 2020 - 08:13 PM

@mmztcass

 

Yes i got the b complex from pure encapsulation. such a bummer that its synthetic. Ill search for another. 

 

Ill definitely research each ingredients put into the supplements. 

 

Ive also got some brazil nuts for selenium. Taking 4 nuts a day.  Hopefully it helps with my TED. 

 

Thank you again! 

Hope youre staying healthy. 



#15 Tiffanyt

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Posted 31 March 2020 - 09:09 PM

[color=rgb(40,40,40);font-family:helvetica, arial, sans-serif;]Hi allies![/color]

[color=rgb(40,40,40);font-family:helvetica, arial, sans-serif;]Thank you for your detailed list of foods you eat for vitamins! I love it! I am going to keep note of those foods you mentioned and get them at the store. [/color]

I kind of take it you eat a lot of things to get the vitamins and not take much supplements? 

 

I just got brazil nuts and planning on eating 4-5 a day.  I also purchased online some vitamin D and coq10. read off Elaine moore that those are very good supplements to take for TED and Graves. 

 

For your organ meat. Do you prefer an organ meat you eat often?

To be honest, it gets me a little nervous eating some organ meat but if they are good for me, I will do it!  

 

As for the spinach and almonds. Yes they are so easy to use and there is so much of it. I totally feel you on overeating them and not being able to stop  :lol:[color=rgb(40,40,40);font-family:helvetica, arial, sans-serif;]  [/color]

So yes im so glad you told me about having too much oxalates and that could've caused me to get a uti.  I have recently changed up my daily smoothies to different items and not spinach and almonds and chia seeds everyday. 

 

Hear from you soon! Thank you! 

 

Tiffanyt



#16 Allies

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Posted 01 April 2020 - 03:39 PM

Hi Tiffany :)

 

You're right, I try to get nutrients from foods :) My initial thinking was that it's got to be easier to balance nutrient intake that way rather than figuring out that if I take, say zinc, do I then have to take a certain amount of copper? Honestly this stuff fries my mind sometimes! Turns out the food thing is almost as complicated! I'm kind of trusting that nature knows best and that whole foods seem likely to have a variety of vitamins, minerals and co-factors that may help balance the whole thing out.

 

Organ meats were tricky to eat at first. Heart meat is probably the easiest to eat, although I gather that whole tinned sardines (and other small fish) can be classed as sources of organ meat because only the head is removed, so most of the organs should still be there (not that you can tell though). Oysters, muscles and some other shellfish likewise seem to have the organ meats intact. Liver pate is easy-ish to eat too :) I think we probably need to be careful not to overdo organ meats because they are very high in vitamin A which can be toxic if it builds up too much in the body. You can also get organ meat supplements (liver powder capsules and so forth) which might be a viable alternative for the really squeamish :)

 

Brazil nuts might also fall into the moderation category because they are reasonably high in selenium (assuming there is selenium in the soils they are grown in! ) and selenium can be toxic at high levels too. Brazil nuts are expensive here so that's another advantage to eating less of them :) So sunflowers are my other main go to for selenium (they have less selenium than Brazil nuts - again somewhat dependent on where they are grown), but they are cheap and although I didn't really like the taste at first I found they were nicer if soaked and/or sprouted :)

 

I'm never quite sure how seriously to take the oxalate thing, but have seen some improvements that may, possibly, be due to reducing my intake, so I'll stick with it for the time being. Groups that are focused on low oxalates advise reducing consumption slowly and steadily, because apparently abruptly stopping oxalate consumption can cause the body to dump a lot of stored oxalate at once which can be unpleasant or downright dangerous. If you are cooped up at home at the moment there's a facebook group called 'trying low oxalates' that has quite a bit of technical information, personal experiences and a large list of foods that have had their oxalate levels tested.

 

I think on the whole overdoing any single food (or perhaps food type) at the expense of decreasing food diversity may cause problems for some of us :( A paleo type diet does remove a whole bunch of potentially problem foods which can equate to less of some nutrients that we then need to source from elsewhere. ...and, of course, following a paleo-type approach can also sometimes lead to focusing too heavily on some foods which might be fine for some people but cause issues for others

 

... you get an idea of how this nutrient balancing is complicated even with foods!

 

I'm not a doctor or nutritionist though - I'm trying to work all this out as I go along :)

 

Cheers
Allies
:D



#17 Tiffanyt

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Posted 09 April 2020 - 04:12 PM

Thanks for your insight Allies!
Im planning on doing both. Some supplements with eating Whole Foods that provide vitamins.

 

As for organ meat, thevtonned sardones you mentioned sounds possible and yummy 😆 so Ill start with that.

 


Also I recently did a blood work. Here are my results!

 

TSH. <0.1. (0.4-4.2ulu/ml)
T4 1.8. (0.8-1.7ng/dl)

 

Excited to see my t4levels go drastically down.(was at Tsh still out of range.
I got a new ENDO because my old one retired. This ENDO for some reason didnt get my t3 levels.
Should I always request all three?
Ive also requested a vitamin d level test as well with this blood work. So that result should be coming back soon.

 

My dr just Emailed me that I should increase my dosage to 20mg. Im a little confused because my t4 went down after 2 1/2 weeks of being on my ATD.
I was thinking maybe increase to 15mg?

 

Thanks in advance for your comments.
Tiffanyt



#18 Tiffanyt

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Posted 10 April 2020 - 12:15 AM

Also
Since I have a new ENDO dr and Im 4 months into this journey of Graves disease.
What are the definite tests should I be requesting when I do my monthly blood works? I want to make every blood work to count and measure all the key factors for this illness. Antibodies? Vitamins?

 

Be well! 🥰



#19 mmztcass

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Posted 10 April 2020 - 10:53 AM

Hello Tiffanyt:

 

Yikes, run away from this doctor!  This doctor is trying to get the TSH levels to come up which is why the ATD is being increased.  This doctor is not realizing that when there is an autoimmune thyroid disease involved, the TSH numbers, will, unfortunately stay at low levels for a long time until the thyroid antibodies numbers (the TSI) come down. 

 

I can guarantee you that not only will the TSH come up artificially, your levels will drop hypO and worsen the symptoms even more.  It is not fun to be hypO as well as to be hypER.    

 

Find another doctor to stay on the current dose for the moment.  How long have you been on the 10 mg of MMI?

 

Labs should be rechecked in 4 to 6 weeks.

 

Yes, the Free T3 test is very important.

 

Labs every time of:

 

Free T3

Free T4

TSH

 

Every several months throw in the TSI to see if coming down and the TSH numbers will go up normally and not be artificially showing up. 

 

Whole foods multi without the Iodine, vitamin D3, Selenium, Zinc (only if Copper is not low).  Most people with GD can have low Copper to the high Zinc levels.  My case was unusual, I had high Copper levels to the Zinc levels. 

 

Find whole foods multi with lower Iodine if possible if not find any without.  Much lower than the recommended 150 mcg per day as we can get Iodine from our foods.  Find an Iodine PDF list.  But right now if the TSI is still high, it is best to keep diet on lower Iodine for the moment.   

 

{{{hugs}}}



#20 mmztcass

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Posted 10 April 2020 - 01:03 PM

Tiffanyt:

 

P.S.  The point I am trying to make is that we want to take the lowest amount of ATD (as in your case the MMI) to keep our Free T3 at mid range and the Free T4 at the upper third range.

 

If you take more MMI as your doctor is prescribing just to the get the TSH number to come up, the Free T4 will drop down very low into hypO.  

 

Not good, that is for sure.  Then one can see why so many thyroid forums have popped up all over the Internet and places like facebook because their doctors erroneously prescribe too much meds for Graves' Disease in trying to get the TSH to come up and these poor thyroid patients come here (and elsewhere) very ill with too much meds (hypO) in their systems.  :(  :o  

 

{{{hugs}}}







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