Seeking those with Hashimoto's

I have had Hashimotos and Secondary Hypothyroidism for over 10 years. It has been terrible to control, my Synthroid is up and down all the time, but I haven't gained weight.I had gained weight prior to my diagnosis when My TSH was at 218 and my FT4 was at 0! I was recently diagnosed with Adrenal Insufficiency too so lucky me, I'm on Hydrocortisone for life! I too have seen many more people diagnosed with Hashi's and actually autoimmune disorders in general. Also, noticed tons of allergies. I have a Soy and Wheat allergy and with all the crap they put in and on our food, it is a challenge. Anyways, I don't know what to do about my Thyroid, the Endo says it is dead and we will continue to just check every couple of months. But even when my levels are "controlled", I still feel like garbage.

Originally posted by MountainEnigma
It would be nice if someone would find an answer. As it stands, I have gained @ 150 lbs since 1999 and I have not been able to lose it.

Sorry, END RANT. Ugh! Sigh.

edit on 19-6-2013 by MountainEnigma because: End Rant.

MountainEnigma, you are correct.

To address my Hashimoto's induced Hypothyroidism, For the last 9 years I have followed a strict regimen. I exercise 5 times a week by running 3 - 4.5 miles, and coupling that with 25 - 35 minutes doing martial arts with an 18 lb bar. I eat a lean (non-wheat, non-whey, non-dairy, non-corn, non-soy, non-peanut) protein early in the day, and a dinner of a lean meat (no beef or chicken) and vegetables:

No cokes, no alcohol, no candy, no breads, no corns, no GMO's of any kind. My stat averages daily, from my years of tracking:

My daily profile 2047 calories consumed
Daily exercise burn 741 calories exercise
Net Calories Daily 1306 calories

My resting pulse is 46 - 50 bpm, and my body temperature is 97.6

This BARELY, just barely....keeps me below statistically obese. It is the only malady I have, yet I cannot get healtcare coverage because of whatever reason they keep in their sinister data vaults. In the old days when my doctors would say "Cut out sweets, a couple deserts or cokes a week, or pizza or chips, and the weight will come off"...

I would laugh and pull out my spreadsheet (now my iPad) and reply "Doc, you could not make it 1 month living my life. I dare you to try."

It took me 15 years of steady research and pushing 7 doctors hard, to finally get one to quit listening to the textbook pseudo-science from 1935 - and to start considering what experienced observers have to say, as credible. (you know there are a LOT of subjects where this appears to be a problem too....)

You MUST have T3 as a primary hormone along with your T4. T3 is not simply a precursor hormone - that is a secondary function. If you are going to have a healthy life, tell them to shove Synthroid and Levoxly where the sun don't shine, and get a T3/T4 combination.

They do not know what they are talking about, and are just regurgitating what the healthcare quacks and the pharma quacks say will derive the best net sales.

YOU are the expert. Do your diligence, and believe it or not you CAN understand this subject better than a doctor and you can begin to see patterns and potential solutions.

Good luck my friend.

Originally posted by SilverStar33
Why do most docs refuse to give T3.Mine refuses to even test for it!I have no other options for an endocrinologist,so I am stuck.So I see that indeed I am not alone on ATS and I figure there are many more that have yet to drop into the thread.

This man is a quack.

I would encourage you to get another doctor if you can.

Originally posted by seentoomuch
As to why so many cases showing up now I would imagine that there are several factors. For example in the 70s scientists quadrupled the amount of gluten in the wheat we grow, it is now standard. At that point I'm sure many people started having various problems that were misdiagnosed. Now we have better testing capabilities and we are zeroing in on Hashimoto and other auto immune illnesses. Also, the chemicals used on our food supply, also our water supply, also our use of herbicides on our lawns, etc, etc.... Modern living is the cause overall imho. The effect of all the tampering is inflammation that attacks various parts of the body. Just my 2 cents.

STM

seentoomuch - Certainly an Ockham's Razor approach to the issue of Peroxidase Antibody counts in blood serum. Currently mine is at a 6.0 IU/milileter level and that is as low as I have had it for around 11 years. That is still 50% above Chi Squared bounded distributions for most patients.

I have tracked the Peroxidase Antigen blood sera versus dietary intake for a while. Net reductions for me occurred by eliminating Wheat, then Dairy, then all GMO foods one at a time - especially corn and canola oil - my gawd did that make me feel better and my skin cleared up - , I have eliminated each GMO over time except for beets. Each elimination came commensurate with varying downward impacts on my Hashimoto profile. It is hard to say which one had the plurality of impact reduction. Yet, even now with a gluten and GMO free diet (no wheat, soy, corn, oats, barley or rice) - I still have a slightly elevated profile.

I am working with the doctor to address this elevation, and reduce the net damage to the pancreas and the pituitary which can also be incumbent with Hashimoto's peroxidase autoimmune disorder.

reply to post by TheEthicalSkeptic
Wow! You are intensely focused on what works for you and what doesn't! That is wonderful! With an understanding that we're all built a little differently it looks as though you are working the elimination method perfectly. You've made progress, no doubt, but it looks as if you still have to contend with secondaries. Have you considered environmental influences or other foods?

P.S. You have reactions to rice? Are you sure? 'Cause I would think rice would be okay and that maybe you are reacting to the nightshade family, potatoes, tomatoes, eggplant?

Originally posted by seentoomuch
reply to post by TheEthicalSkeptic

 

Wow! You are intensely focused on what works for you and what doesn't! That is wonderful! With an understanding that we're all built a little differently it looks as though you are working the elimination method perfectly. You've made progress, no doubt, but it looks as if you still have to contend with secondaries. Have you considered environmental influences or other foods?

P.S. You have reactions to rice? Are you sure? 'Cause I would think rice would be okay and that maybe you are reacting to the nightshade family, potatoes, tomatoes, eggplant?

edit on 6/21/2013 by seentoomuch because: (no reason given)

All excellent points seentoomuch. I keep a diary of food intake on my spreadsheet - really because yes, we are all different. To be fair, my reaction to rice is much much less, given rice is probably only 5 - 10% prolaminate and glutien in content, compared to 40+% for corn and wheat. But it is not just wheat that contains "gluten" by any means. I don't eat potato, tomato or eggplant, so they could not have contributed to my profile.

Secondaries, yeah - trying to develop a way to start examining my environment for contributors. That is a very complex process. I did cycle out all cosmetics and soaps to no avail. I have also tested to cycle out dry cleaning exposure. Not sure of that impact.

I was very pleased that this toxic food elimination process did the trick. To me it begs the question as to what we have done to our food supply - and why we refuse to pursue any science of safety around these issues.

Our current public food policy is akin to "As long as science has not seen anyone dying from jumping off the roof of their house, then it is safe to do so. There is no more reason to look into it. Broken ankles are simply a case of increase in numbers of diagnosis." Not good food policy, and I see otherwise smart people defending this idiotic policy every single day. It is like intellectual zombie-dom.

Given the success I have had personally there, I find it hard to believe that I am one of the strange few in which this is occurring.

Well, I asked the Gods if it was ok to post links to legal but unusual resources, and no reply pro or con.

So, for those of you who want to know your numbers and the doc won't run the lab for you, walk in lab is your solution.

It's the same tests your doc orders, and from the same lab most of the time, only he's doing the draw.

These guys have store fronts in most towns and they'll do it for you, cut rate, about half what your doc charges. The only challenge is: no insurance payments. But the doc can't hold your numbers hostage just because s/he doesn't feel like listening to you.

Next, if you need or want something once you've gotten those labs, or you want some doxy for the bug out bag or whatever, In House Pharmacy has reasonable prices and stocks Armour whole thyroid. A caution: if you've got irregular heart beats or you're prone to SVT, synthroid is safer - T3 tends to provoke issues in those people.

These two guys have the Tom Bedlam Seal o' Approval, they are legit, IHP is actually the back door of a well-known and very legit UK pharmacy chain.

reply to post by TheEthicalSkeptic
Personal question: What is your ancestry? What climate are you living in versus your genetic make-up. For example I'm primarily Swede but am living in Central Texas. It is hitting 97 degrees here today. Luckily I am leaving for a break from the heat to San Fran for a few days. Otherwise, I'm stuck inside for the day except for laps in the pool to cool off (with showers before and after and wearing sun clothing instead of sunblock). I'm asking this for a reason, when I lived in France and Switzerland years back in the nineties most of my problems went away.

Most of it was due to the organic countryside and food at that time I'm sure, but the heat, wow, autoimmune does not like intense sun or heat and it was nice and cool in Normandy. I did have one flare up there when we moved from the countryside in Normandy to Paris with no a/c in our apartment and it was in the 90s. Just a thought . . . .

As to our food supply, well yeah, its criminal. I'll never forget coming home from Europe and eating a Twinkie for the first time in 4 1/2 years. I had the first and only migraine of my life. Also my eyes turned the brightest green living in Europe and then changed to kinda dull green about a year after we came back. Now, on the GF diet they are turning greener everyday.

Sorry this post is so rushed, gotta pack my suitcase, see y'all later.

Originally posted by OneisOne

Originally posted by CAPT PROTON
For people with thyroid disorders, what is your iodine intake like?
Do you take any, or are you told not to take any?
Just curious.

My doctor has never mentioned iodine concerns. One year I did switch to a sea salt w/o iodine and after a few months my TSH numbers shot up. The salt change was the only thing I did change during that time. I've stuck with iodized salt since then.

How did this not get more attention?

Doctors are looking at your numbers after the damage has been done. Same for the supposed genetic reason for having gluten intolerance. Don't you think it's weird that you can handle it as a child (most people), but as you age you no longer can?

What has changed? I'm thinking a nutritional deficiency is at work. I sprinkle morton's lite salt on all my food. It contains iodine, potassium, and a reduced amount of sodium per teaspoon. The only other thing necessary to keep me thin and well is occasional epsom salts to up the magnesium. A balanced diet takes care of the rest.

Iodine, people. Take some freaking iodine.

I found this link

Maybe pop a couple of brazil nuts a day for a few weeks, while switching over to morton's lite salt.

Originally posted by seentoomuch
reply to post by TheEthicalSkeptic

 

Personal question: What is your ancestry? What climate are you living in versus your genetic make-up. For example I'm primarily Swede but am living in Central Texas. It is hitting 97 degrees here today. Luckily I am leaving for a break from the heat to San Fran for a few days.

Yes, I have initiated a significant amount of research on my genetic ancestry. Under the model constructed by Bryan Sykes and published in his excellent work "The Seven Daughters of Eve" I am of the Ursula tribe of mitochondrial DNA (mouth swab kit). This DNA is about 35,000 years old.

My blood type is O negative, and I am 1/4 Scot, 1/4 Welsh, 1/4 Swede, and 1/4 German. This places me into a very cereal grain sensitive position, as my DNA lineage does not carry the Toll Like Receptor 4 G2 variant which originated in the Levant inside a separate mitochondrial strain more recently and just happens to be compatible with the consumption of high prolaminate and glutien content plants, which were also first cultivated in that same region about 12,000 years ago.

In other words, I cannot eat grass and hope to live a healthy life.

When we increased the prolaminate and glutien content of American wheat through cross species hybridization, in order to save a little money on farming and shipping, we induced an enormous cost and negative impact to our standard of health. Penny wise and Pound idiocy. We have the same BS artists out seeking to promote the circumvention of science on the introduction of GMO technology, posing as "skeptics" - rather really constituting an institutional astroturfing campaign. It is not skepticism in any way shape or form. It is pseudoscience.

I have (or have had) offices in Switzerland, Germany, Abu Dhabi, Riyadh, Spain, India, Thailand and Africa and have spent a significant amount of time in each. Really, what tipped me off to this was that my edemic reaction to wheat did not occur in countries which refused import of US Wheat. That is what started me on this long trek many years ago.

Climate? I have yet to study that. But I can get sunburned just between the door of Ralph's and by the time I get to the car in the parking lot. LOL!!!

(OK the last point was hyperbole)

cappy85
I have had Hashimotos and Secondary Hypothyroidism for over 10 years. It has been terrible to control, my Synthroid is up and down all the time, but I haven't gained weight.I had gained weight prior to my diagnosis when My TSH was at 218 and my FT4 was at 0! I was recently diagnosed with Adrenal Insufficiency too so lucky me, I'm on Hydrocortisone for life! I too have seen many more people diagnosed with Hashi's and actually autoimmune disorders in general. Also, noticed tons of allergies. I have a Soy and Wheat allergy and with all the crap they put in and on our food, it is a challenge. Anyways, I don't know what to do about my Thyroid, the Endo says it is dead and we will continue to just check every couple of months. But even when my levels are "controlled", I still feel like garbage.

edit on 20-6-2013 by cappy85 because: Spelling

edit on 20-6-2013 by cappy85 because: (no reason given)

I have had both Hashimotos and Addisons since 2003 and Celiac since 2013. Are you only on hydrocortisone or do you also take florinef? You need be on both and that could be why you feel like garbage.