Aa
Life with Hashimoto's
Just found out that I have Hashi's and have read a lot on this. Would any of you mind sharing your experience with having this? What is your life like with hashi's?? What are your symptoms and daily struggles? Does it let up??
It definately finally explains why after 2 1/2 yrs the docs haven't been able to get me regulated. :( Life does make a little more sense now. Look forward to hearing your experiences and advice! :) :)
It definately finally explains why after 2 1/2 yrs the docs haven't been able to get me regulated. :( Life does make a little more sense now. Look forward to hearing your experiences and advice! :) :)
Huh, I didn't know any of that. I guess i will just stick with the homeo for awhile she is doing a pretty good job but I will ask for a referral to an endo if she thinks it is necessary at some point. I sure hope we do not go down that road but follow your aunts path.
Since you have had RAI treatment do you think that is regulating you? Are you feeling better and not having tiredness, and weight gain and all the other elements that go with this disease?
There are so many people that have thyroid problems makes you wonder what is causing it that is in our environment. I heard once that fluoride in the water could do it and I grew up with that on the East Coast.
Well hang in there and keep me posted on your treatments I sure hope this avenue works and thanks again for the education of things to be aware of.
I still may try my other suggestion with changing my lifestyle..... LOL!
Since you have had RAI treatment do you think that is regulating you? Are you feeling better and not having tiredness, and weight gain and all the other elements that go with this disease?
There are so many people that have thyroid problems makes you wonder what is causing it that is in our environment. I heard once that fluoride in the water could do it and I grew up with that on the East Coast.
Well hang in there and keep me posted on your treatments I sure hope this avenue works and thanks again for the education of things to be aware of.
I still may try my other suggestion with changing my lifestyle..... LOL!
The last part sounds like a PLAN! LOL!!!
Lots of people develop small nodules on their thyroid. It is sort of like liver spots. Most people get them sooner or later but it's not really a big deal.
Sometimes the nodules grow bigger. Many thyroid patients will eventually grow one or a few nodules that are big enough that they need monitoring. Some are round and flat, some are tubular. A doctor can feel them when he/she palpates your throat to physically examine your thyroid.
A hot nodule is a nodule that is capable of producing thyroid hormones, but it's not really wired into the command center of the thyroid.(There is no command center, but whatever) It just produces hormones and excretes them as it pleases, while your thyroid excretes what your body is calling for. Then you end up with too much hormones.
It does this sporadically, and it messes up your med dosage when it happens. It usually becomes such a problem that surgery is performed to remove the nodule.
Most nodules are cold nodules, and have no hormone producing capabilities. Certain cold nodules have the potential to become cancerous, but most do not. An Ultrasound can evaluate the texture and physical make-up of your gland and any nodules you may have. It can also detect anomolies within the gland. It can differentiate between harmless cold nodules and suspicious cold nodules. It cannot differentiate between a cold nodule and a hot nodule, though.
Most doctors can order an ultrasound. The test results are evaluated by a professional and a report is submitted to the doctor. My GP ordered mine and it came back with a report that my doctor could understand and explain to me.
If a hot nodule is suspected of messing with your hormone levels, an uptake scan is performed. Radioactive iodine is used as a marker and the amount of absorbtion to the gland can be measured and imaged. If a nodule is hot, it will absorb iodine and glow on the screen.
That's not the kind of test a holistic doctor can run, or a GP either.
A hot nodule is one way your treatment can spiral out of control. The doctor can't regulate your meds if the hormone levels keep changing.
Chronic Thyroiditis is another way things can get out of control. As the thyroid becomes more and more impaired, infections are more frequent and the gland is always either underproducing or releasing too many hormones at once. Once again, your medication needs are changing monthly or weekly. Eventually your thyroid starts to look like swiss cheese.
If it gets to that point, RAI is usually recommended, because at least then the doctor can get you on a dose of meds that will work for a couple years at a time.
RAI requires an Endo. Surgeons will almost always refuse to operate unless you are under the care of an Endo. Fine Needle Aspiration of a suspicious cold nodule is performed by an Endo or an ENT. These are extreme examples, but you see what I mean.
Antibody levels play a large part in how the disease progresses.
My aunt has had Hashimoto's for over forty years. She has never seen an Endo in her life. I called her one day to ask her for a referral, because I was looking for a doctor in her area. I had to explain what an Endocrinologist was, because she has never heard of such a thing. She's mid-seventies and a GP has always treated her. She has reasonably good health. Some people get lucky.
Lots of people develop small nodules on their thyroid. It is sort of like liver spots. Most people get them sooner or later but it's not really a big deal.
Sometimes the nodules grow bigger. Many thyroid patients will eventually grow one or a few nodules that are big enough that they need monitoring. Some are round and flat, some are tubular. A doctor can feel them when he/she palpates your throat to physically examine your thyroid.
A hot nodule is a nodule that is capable of producing thyroid hormones, but it's not really wired into the command center of the thyroid.(There is no command center, but whatever) It just produces hormones and excretes them as it pleases, while your thyroid excretes what your body is calling for. Then you end up with too much hormones.
It does this sporadically, and it messes up your med dosage when it happens. It usually becomes such a problem that surgery is performed to remove the nodule.
Most nodules are cold nodules, and have no hormone producing capabilities. Certain cold nodules have the potential to become cancerous, but most do not. An Ultrasound can evaluate the texture and physical make-up of your gland and any nodules you may have. It can also detect anomolies within the gland. It can differentiate between harmless cold nodules and suspicious cold nodules. It cannot differentiate between a cold nodule and a hot nodule, though.
Most doctors can order an ultrasound. The test results are evaluated by a professional and a report is submitted to the doctor. My GP ordered mine and it came back with a report that my doctor could understand and explain to me.
If a hot nodule is suspected of messing with your hormone levels, an uptake scan is performed. Radioactive iodine is used as a marker and the amount of absorbtion to the gland can be measured and imaged. If a nodule is hot, it will absorb iodine and glow on the screen.
That's not the kind of test a holistic doctor can run, or a GP either.
A hot nodule is one way your treatment can spiral out of control. The doctor can't regulate your meds if the hormone levels keep changing.
Chronic Thyroiditis is another way things can get out of control. As the thyroid becomes more and more impaired, infections are more frequent and the gland is always either underproducing or releasing too many hormones at once. Once again, your medication needs are changing monthly or weekly. Eventually your thyroid starts to look like swiss cheese.
If it gets to that point, RAI is usually recommended, because at least then the doctor can get you on a dose of meds that will work for a couple years at a time.
RAI requires an Endo. Surgeons will almost always refuse to operate unless you are under the care of an Endo. Fine Needle Aspiration of a suspicious cold nodule is performed by an Endo or an ENT. These are extreme examples, but you see what I mean.
Antibody levels play a large part in how the disease progresses.
My aunt has had Hashimoto's for over forty years. She has never seen an Endo in her life. I called her one day to ask her for a referral, because I was looking for a doctor in her area. I had to explain what an Endocrinologist was, because she has never heard of such a thing. She's mid-seventies and a GP has always treated her. She has reasonably good health. Some people get lucky.
Sorry to hear that you have been on this thyroid rollercoaster. I can just imagine how frustrated you can be. But it is great having your here on this forum even if it is to help the rest of us go down a road that you have already been to.
Can you tell me what a hot nodule is and what spiralling out of control would be? How do you know when it is time for you to get biopsied and all the other things you mentioned. This could start to cost me a small fortune. Maybe when I see my holistic next time I may ask her for her recommendations on a local endo. My holistic doctor is also treating me for low adrenals as well and now the Celiac thing is taking place. Gosh I am only 43 and feel as if I am falling a part even though no one would know it.
Sorry to be whining but it is worriesome that the older I get the more things I keep having wrong with me when I try to take good care of myself in all the ways i have contol over. Maybe I should just take up smoking, drinking and have lots of extra curricular sex it could be healthier, LOL! What do you think?
Can you tell me what a hot nodule is and what spiralling out of control would be? How do you know when it is time for you to get biopsied and all the other things you mentioned. This could start to cost me a small fortune. Maybe when I see my holistic next time I may ask her for her recommendations on a local endo. My holistic doctor is also treating me for low adrenals as well and now the Celiac thing is taking place. Gosh I am only 43 and feel as if I am falling a part even though no one would know it.
Sorry to be whining but it is worriesome that the older I get the more things I keep having wrong with me when I try to take good care of myself in all the ways i have contol over. Maybe I should just take up smoking, drinking and have lots of extra curricular sex it could be healthier, LOL! What do you think?
I am NOT an expert. I'm just some hick living in the middle of the corn belt who has been sick for a couple of years and read a lot. I learned a lot from other members here.
My thyroid situation is this; the evil little bugger in my throat is supposed to be dying from RAI therapy, because it was so out of control the doctors had to kill it. I stayed on the roller coaster (up, down, up, down) too long and now I can't work for several months, at least. It's already been since last October, and it may be another year. But I keep expecting to be better by next week. LOL!!
I'm not familiar with holistic doctors, although I have read a teeny bit about it. I have put all my betting chips on conventional medicine, and it has failed me rather badly because of my choice of doctors. From what I have read, holistic approaches work, but you cannot remove the human element from treatment. It requires a GOOD DOCTOR.
Doctors are people, and just like mechanics, there are good ones, mediocre ones, and some that should find a different occupation.
There will probably come a time that you will need an Endocrinologist. Some are open to treating with Armour. Some are willing to throw the rule book out the window and try treatments that most Endos would ignore. Many lean toward erring on the side of conservativism and have been doing things the same way for fifteen years even though medical advances have been made. It's a very individual thing.
If you develop hot nodules or your thyroid spirals out of control, the holistic doctor may not be able to treat you. Same as if you were seeing a General Physician. They can order ultrasound tests and monitor blood levels and control your hormones up to a point, but if things get complicated then a good Endo is required for certain tests like uptake scans to check for hot nodules or Fine Needle Aspiration biopsies to check for cancers, or to give your thyroid the chemical axe, or refer you to a surgeon.
There are a few people on the board being treated by holistic doctors. If you hang around, you will find them. Post a question asking who is and what their experience has been.
Best of luck to you, and welcome to the board, if you haven't already heard it a few times. :-)
My thyroid situation is this; the evil little bugger in my throat is supposed to be dying from RAI therapy, because it was so out of control the doctors had to kill it. I stayed on the roller coaster (up, down, up, down) too long and now I can't work for several months, at least. It's already been since last October, and it may be another year. But I keep expecting to be better by next week. LOL!!
I'm not familiar with holistic doctors, although I have read a teeny bit about it. I have put all my betting chips on conventional medicine, and it has failed me rather badly because of my choice of doctors. From what I have read, holistic approaches work, but you cannot remove the human element from treatment. It requires a GOOD DOCTOR.
Doctors are people, and just like mechanics, there are good ones, mediocre ones, and some that should find a different occupation.
There will probably come a time that you will need an Endocrinologist. Some are open to treating with Armour. Some are willing to throw the rule book out the window and try treatments that most Endos would ignore. Many lean toward erring on the side of conservativism and have been doing things the same way for fifteen years even though medical advances have been made. It's a very individual thing.
If you develop hot nodules or your thyroid spirals out of control, the holistic doctor may not be able to treat you. Same as if you were seeing a General Physician. They can order ultrasound tests and monitor blood levels and control your hormones up to a point, but if things get complicated then a good Endo is required for certain tests like uptake scans to check for hot nodules or Fine Needle Aspiration biopsies to check for cancers, or to give your thyroid the chemical axe, or refer you to a surgeon.
There are a few people on the board being treated by holistic doctors. If you hang around, you will find them. Post a question asking who is and what their experience has been.
Best of luck to you, and welcome to the board, if you haven't already heard it a few times. :-)
Wow, how did you get to be such an expert on this, are you in the medical field. What is going on with your thyroid situation? What would you recommend that I do for the best care possible for my situation. I had been going to my general md but after years of just upping meds went then to holistic and that has been where I have stayed, she discovered all this. But should I start seeing an endocronologist sometime in the future and do they prescribe Armour?
Thyroglobulin Auto Antibody is TGab. It is also called Thyroglobulin antibody or antithyroglobulin antibody. LOL!!
They like to make it confusing.
TGab are antibodies that attack one of the building blocks of T4 and T3. They make the thyroid less capable of producing hormones by robbing it of raw material.
Your lab limit probably says <20 or <30, which means a test result of 10 or 15 would be normal and considered negative. 76.7 is high, a positive result for autoimmune thyroid disease. It is fairly low and if it stays low it is almost harmless.
Your Thyroid Peroxidase auto antibody test also goes by three other names and the abreviation is TPOab. Yours is above 1,000, which is quite high, quite typical, and very annoying that they could not measure it more acurately.
Hashimoto's patients that end up on thyroid boards often have a TPOab above 800, and above 1,000 is not uncommon. Mine is 1,650 last time they checked. Some of these poor souls have numbers up to 5,000.
Above 1,000 is not good as far as the rate of damage to your thyroid. It's annoying that you don't have a more precise figure, but some labs top out at 1,000 and some go up as high as 8,000.
TPOab is indicative of an autoimmune condition, not specifically a thyroid condition, odd as that sounds. But with a result of greater than 1,000, it means autoimmune thyroid disease.
Your TSH is 4.84. That's too high, and it will give you symptoms of hypothyroidism. Anything over 2.5 is too high for almost everybody, even though the upper limit is probably 5.0 on your test. Once a patient is diagnosed, the doctor should aim for a TSH of 1.0 or 1.5 for most people.
Your T3 and T4 are hard to comment on without the lab ranges included, because on these tests different labs use different ranges.
If your T4 is a Free T4 test, then 0.9 is either a little low or very low. Within lab limits, but low.
Hopefully they ran a Free T4 and a Free T3, as those are good modern tests. Your lab result should be a little above midrange for optimal hormone levels.
It's unfortunate that your TPOab is so high. You could try taking 200mcg of Selenium to drop that number. Studies have shown that 200mcg of Selenium may drop your TPOab by as much as 50%, or it may not affect it noticably. But it's worth a try. Just make sure you take mcg, and not mg, or you may kill yourself.
Your TPOab indicates activity of a destructive nature, and the fact that it is so high is why the doctors cannot keep you stable over the years. You have had Hashimoto's for a while, and it is slowly eating your gland and killing it. Only not so slowly.
You go through periods of it getting infected and you have thyroiditis. The hormones drop low for a while, and when the infection clears, you get a hormone dump, excess hormones for a few days, and then your gland returns to normal, only a little less able to function. Eventually another med increase. Maybe periods of having to lower or stop medication because it is driving you hyper.
It looks like right now you may need a med increase if you haven't had one for a while. But your starting a new therapy now, if I remember. Best of luck to you.
They like to make it confusing.
TGab are antibodies that attack one of the building blocks of T4 and T3. They make the thyroid less capable of producing hormones by robbing it of raw material.
Your lab limit probably says <20 or <30, which means a test result of 10 or 15 would be normal and considered negative. 76.7 is high, a positive result for autoimmune thyroid disease. It is fairly low and if it stays low it is almost harmless.
Your Thyroid Peroxidase auto antibody test also goes by three other names and the abreviation is TPOab. Yours is above 1,000, which is quite high, quite typical, and very annoying that they could not measure it more acurately.
Hashimoto's patients that end up on thyroid boards often have a TPOab above 800, and above 1,000 is not uncommon. Mine is 1,650 last time they checked. Some of these poor souls have numbers up to 5,000.
Above 1,000 is not good as far as the rate of damage to your thyroid. It's annoying that you don't have a more precise figure, but some labs top out at 1,000 and some go up as high as 8,000.
TPOab is indicative of an autoimmune condition, not specifically a thyroid condition, odd as that sounds. But with a result of greater than 1,000, it means autoimmune thyroid disease.
Your TSH is 4.84. That's too high, and it will give you symptoms of hypothyroidism. Anything over 2.5 is too high for almost everybody, even though the upper limit is probably 5.0 on your test. Once a patient is diagnosed, the doctor should aim for a TSH of 1.0 or 1.5 for most people.
Your T3 and T4 are hard to comment on without the lab ranges included, because on these tests different labs use different ranges.
If your T4 is a Free T4 test, then 0.9 is either a little low or very low. Within lab limits, but low.
Hopefully they ran a Free T4 and a Free T3, as those are good modern tests. Your lab result should be a little above midrange for optimal hormone levels.
It's unfortunate that your TPOab is so high. You could try taking 200mcg of Selenium to drop that number. Studies have shown that 200mcg of Selenium may drop your TPOab by as much as 50%, or it may not affect it noticably. But it's worth a try. Just make sure you take mcg, and not mg, or you may kill yourself.
Your TPOab indicates activity of a destructive nature, and the fact that it is so high is why the doctors cannot keep you stable over the years. You have had Hashimoto's for a while, and it is slowly eating your gland and killing it. Only not so slowly.
You go through periods of it getting infected and you have thyroiditis. The hormones drop low for a while, and when the infection clears, you get a hormone dump, excess hormones for a few days, and then your gland returns to normal, only a little less able to function. Eventually another med increase. Maybe periods of having to lower or stop medication because it is driving you hyper.
It looks like right now you may need a med increase if you haven't had one for a while. But your starting a new therapy now, if I remember. Best of luck to you.
Looking at my last test results here is what it says, can you dicipher? Thyroglobulin Auto Antibody 76.7 High, Thyroid Peroxidase Auto AB >1000.0 High, TSH 4.84, T3 3.0, T4 .9?
Yes I aggree with the others thank you for all that valuable information. I will have to find out about the numbers that you were speaking about. I have my test results I will just look into it.
It is frustrating some people treat their thyroid just fine for life and others like us have it affect our other hormones and then have other issues. I have been trying to resolve this for years along with the weight gain, hair falling out and tiredness. Sorry to whine but I am just sick of being sick but then again I guess it could be much worse and I should count my blessings. Thanks again for setting me straight and educating me. Heaven knows the doctors sure don't tell you any of this stuff. f
It is frustrating some people treat their thyroid just fine for life and others like us have it affect our other hormones and then have other issues. I have been trying to resolve this for years along with the weight gain, hair falling out and tiredness. Sorry to whine but I am just sick of being sick but then again I guess it could be much worse and I should count my blessings. Thanks again for setting me straight and educating me. Heaven knows the doctors sure don't tell you any of this stuff. f
Thank you for the best thyroid summary I've read yet. As always, you have the abillity to make confusing stuff easier to understand. I like to research stuff and learn new info; you set the bar pretty high :)
Sandy
Sandy
Thanks for the input and the advice. I did not know that the blood test for Celiac was of questionable value. I shouldn't be surprised, I guess.
I have been reading about all this for two years and posting here for a year. Learning a lot here, as well. The conclusion I have come to is that there are lots of facts and rules and truths about thyroid disease and autoimmune disorders that apply most of the time, but just about any "fact" you point to can be proven wrong by someone who has had the opposite experience at some point.
Antibodies cannot be controlled.
Antibodies CAN be controlled, under certain conditions.
TSH is a good indicator of hormone levels.
TSH is a poor indicator of hormone levels, under certain circumstances.
People post every day wondering why they are hypothyroid, but feel hyperthyroid. How can that be? It's against the rules!
The only fact I have seen presented that is bulletproof is that you are better off asking for your test results rather than listening to the doctor tell you everything is normal.
Thyroid antibodies go up and down, seemingly upon a whim.
About ten minutes after I posted that you will always have these antibodies, someone posted to Dr. Lupo that their TPOab had fallen below the positive level.
That's not supposed to happen. There's a rule.
Will this person test positive for TPOab again in the future? My guess is yes, but who can say for sure.
It is recognized that completely removing the thyroid reduces the antibody count to some degree, sometimes a little, and sometimes a lot. Most people will still test positive to some degree for the rest of their life.
5thave, if you had a "slow thyroid" (a very popular diagnosis), then I would say you have a very good chance of your thyroid returning to normal function once your vitamin and mineral deficiencies were addressed.
If you have Hashimoto's, then the progression of the disease depends on how many different antibodies you have and how high the numbers are. TPOab damages the tissue of the gland. TGab affects hormone production, but does not damage the gland itself. TRab disrupts the function of the gland, but does not damage the gland directly.
If your TPOab is measured at a fairly low number and there is not too much damage to the gland already, you may be able to control the disease for many years without medication, simply by optimizing the function of the gland.
A person can get along with a thyroid that is functioning at 50%, or with half a gland that functions normally. The problem is keeping your hormone levels correct. If you develop a hot nodule or thyroiditis, then your hormones go out of balance for a period of time and you experience the yo-yo effect that you read about.
Hashimoto's is the most common form of hypothyroidism. For many people it is a very slowly progressing disease that is easily controlled with medication.
They don't seek out forums to ask questions or complain. They take a pill in the morning and live their lives. Maybe get a dosage change every few years. But their lives are not impacted dramatically.
Then there are the rest of us. The problem patients. The ones who can't keep their hormones from jumping around, or develop cancer, or goiters that practically strangle you.
How your Hashimoto's will treat you is unpredictable, although antibody levels can give you a pretty good idea of what may be coming. If your TPOab is 200, who knows what may happen. If your TPOab is 5,000, you are in trouble.
At least that's the rule. :-/
I have been reading about all this for two years and posting here for a year. Learning a lot here, as well. The conclusion I have come to is that there are lots of facts and rules and truths about thyroid disease and autoimmune disorders that apply most of the time, but just about any "fact" you point to can be proven wrong by someone who has had the opposite experience at some point.
Antibodies cannot be controlled.
Antibodies CAN be controlled, under certain conditions.
TSH is a good indicator of hormone levels.
TSH is a poor indicator of hormone levels, under certain circumstances.
People post every day wondering why they are hypothyroid, but feel hyperthyroid. How can that be? It's against the rules!
The only fact I have seen presented that is bulletproof is that you are better off asking for your test results rather than listening to the doctor tell you everything is normal.
Thyroid antibodies go up and down, seemingly upon a whim.
About ten minutes after I posted that you will always have these antibodies, someone posted to Dr. Lupo that their TPOab had fallen below the positive level.
That's not supposed to happen. There's a rule.
Will this person test positive for TPOab again in the future? My guess is yes, but who can say for sure.
It is recognized that completely removing the thyroid reduces the antibody count to some degree, sometimes a little, and sometimes a lot. Most people will still test positive to some degree for the rest of their life.
5thave, if you had a "slow thyroid" (a very popular diagnosis), then I would say you have a very good chance of your thyroid returning to normal function once your vitamin and mineral deficiencies were addressed.
If you have Hashimoto's, then the progression of the disease depends on how many different antibodies you have and how high the numbers are. TPOab damages the tissue of the gland. TGab affects hormone production, but does not damage the gland itself. TRab disrupts the function of the gland, but does not damage the gland directly.
If your TPOab is measured at a fairly low number and there is not too much damage to the gland already, you may be able to control the disease for many years without medication, simply by optimizing the function of the gland.
A person can get along with a thyroid that is functioning at 50%, or with half a gland that functions normally. The problem is keeping your hormone levels correct. If you develop a hot nodule or thyroiditis, then your hormones go out of balance for a period of time and you experience the yo-yo effect that you read about.
Hashimoto's is the most common form of hypothyroidism. For many people it is a very slowly progressing disease that is easily controlled with medication.
They don't seek out forums to ask questions or complain. They take a pill in the morning and live their lives. Maybe get a dosage change every few years. But their lives are not impacted dramatically.
Then there are the rest of us. The problem patients. The ones who can't keep their hormones from jumping around, or develop cancer, or goiters that practically strangle you.
How your Hashimoto's will treat you is unpredictable, although antibody levels can give you a pretty good idea of what may be coming. If your TPOab is 200, who knows what may happen. If your TPOab is 5,000, you are in trouble.
At least that's the rule. :-/
Have you guys tried Florastor?
http://www.florastor.com/
The first 2 weeks I took it I had the WORST gas-GROSS I know. I had been taking a probiotic that obviously was not working for me. Anyway, having candida and dairy issues, I nearly went to my nutritionist and killed her when I read the ingredients. Yeast and lactose. Weellll! I did tons of research, spoke to her and a couple doctor friends in Europe (they are WAY ahead of us) and found out the yeast in Florastor is actually the good kind and the gas was all the candida and bad stuff being killed.
I have been on it over a month and my gas in general is WAY better. No more at night (I take it before bed) and I am even drinking Whey shakes without any intestinal discomfort.
Who knows how or why it is working for me. My cravings for sweets is almost non existent while when the candida was going crazy I literally dreamed of cakes and cookies.
It is worth a try. Also, I am doing the coconut oil too and have added lots of fats (EFA) into my diet.
(P.S. My holistic doc did not think I had any issues with gluten when he tested my blood, but in the end it may just be smarter to avoid it as it is really not good for you anyway in large amounts. However, it is very life changing and I still want to enjoy a cookie or a sandwich once in awhile, you know?)
http://www.florastor.com/
The first 2 weeks I took it I had the WORST gas-GROSS I know. I had been taking a probiotic that obviously was not working for me. Anyway, having candida and dairy issues, I nearly went to my nutritionist and killed her when I read the ingredients. Yeast and lactose. Weellll! I did tons of research, spoke to her and a couple doctor friends in Europe (they are WAY ahead of us) and found out the yeast in Florastor is actually the good kind and the gas was all the candida and bad stuff being killed.
I have been on it over a month and my gas in general is WAY better. No more at night (I take it before bed) and I am even drinking Whey shakes without any intestinal discomfort.
Who knows how or why it is working for me. My cravings for sweets is almost non existent while when the candida was going crazy I literally dreamed of cakes and cookies.
It is worth a try. Also, I am doing the coconut oil too and have added lots of fats (EFA) into my diet.
(P.S. My holistic doc did not think I had any issues with gluten when he tested my blood, but in the end it may just be smarter to avoid it as it is really not good for you anyway in large amounts. However, it is very life changing and I still want to enjoy a cookie or a sandwich once in awhile, you know?)
Thank you for the clarification, maybe I am wrong. I am still trying to figure this out mostly by doing my own reading and there is alot of information out there. I am newly diagnosed with both so maybe not as well informed as i should be.
I know they are both autoimmune diseases however I did read somewhere, unfortunately have not been able to find it quickly again, that when treated for celiac some patients thyroids began to function normally again. Maybe I read it wrong I will try to look into this some more. I sure was hoping it was going to help.
What happens as Hoshimotos progresses as you mentioned? What is the outlook for the future for someone who has these rogue antibodies?
One of the gals from the Celiac Disease foundation here in our area did mention that having the local tests doctors give such as the blood anitbodies test and biopsy have a 30-70% error rate. That is a large number, you may want to try the genetic test it is 98% accurate. If they do a biopsy they have to get it from the damaged part of the intestine not easy to do when it is extensive. Celiac is also inherited and if your sister has it you very easily could have it too. When the villi is damaged the tip of the villi is the lactose part. Apparently if Celiac bad enough you are lactose intolerant as well until things start to heal.
Thanks for your info, I will keep reading I certainly don't want anything more to come my way these two things are enough to deal with at a young age.
I know they are both autoimmune diseases however I did read somewhere, unfortunately have not been able to find it quickly again, that when treated for celiac some patients thyroids began to function normally again. Maybe I read it wrong I will try to look into this some more. I sure was hoping it was going to help.
What happens as Hoshimotos progresses as you mentioned? What is the outlook for the future for someone who has these rogue antibodies?
One of the gals from the Celiac Disease foundation here in our area did mention that having the local tests doctors give such as the blood anitbodies test and biopsy have a 30-70% error rate. That is a large number, you may want to try the genetic test it is 98% accurate. If they do a biopsy they have to get it from the damaged part of the intestine not easy to do when it is extensive. Celiac is also inherited and if your sister has it you very easily could have it too. When the villi is damaged the tip of the villi is the lactose part. Apparently if Celiac bad enough you are lactose intolerant as well until things start to heal.
Thanks for your info, I will keep reading I certainly don't want anything more to come my way these two things are enough to deal with at a young age.
I agree with your comments on auto immune diseases. I come to the same conclusions with my studies. Disease is what causes the absorption problems in our digestive systems....along with parasites...candida...viruses...bacteria.... Malabsorption is not a disorder, it is the result of illness. I also agree that once you have auto immune diseases, the antibodies always remain...if you are VERY lucky, some will go into remission. I have hashi's but I also have epstein-barr virus that is in remission now. I am exploring diff ways to possibly calm down hashi's and maybe put into remission. I got some advice from a holistic chiro who has put me on an immune builder and a thymus builder product. Keep my fingers crossed that it will help. I do know that all the medical info says that hashi's doesn't quit until it has conquered and destroyed all your thyroid gland. Now, maybe if the thyroid has been removed, it might be easier to shove these buggers into remission IF we can find the right naturals to take??? Maybe worth a shot for you to try AR......hate to see you suffer so much. Anyway....there's my 2 sense...lol
I want to thank you for the info you have provided. I have a question, and a couple of observations.
First, I have been tested for Celiac Sprue and the test was negative. I was tested because I have had digestive problems for two years, and my Endo ran the test because she knew it was worth checking. So I know I don't have Celiac, which is a blessing because my sister does and I have seen the difficulties she has had with it.
I'm lactose intolerant, and eating whole cooked eggs or scrambled eggs is not a good idea. Been like that for years. But now I am starting to look at bread with dread. LOL!
Seriously, I know that my digestive tract is all messed up because of my thyroid (ex-thyroid) disease. But I keep getting this gnawing feeling (excuse the pun) that wheat is no longer my friend. Do you think glutton could be an issue for someone who does not have Celiac?
You made a few remarks about antibodies and causes of diseases. I don't mean to sound critical, but I think you are a little confused, or I am mis-informed.
Hashimoto's is an autoimmune disease. You do not get it by malnutrition or poor absorbtion. It is caused by antibodies.
Celiac Sprue is an autoimmune disease. It also is caused by antibodies.
Having one does not give you the other, specifically. They are linked by the fact that they are both autoimmune conditions, of which there are dozens. The thing is, once your immune system starts doing naughty things, a person is apt to develop several autoimmune conditions. Like Rheumatoid Arthritis, or Lupus, or...well, the list is long.
If you have Hashimoto's, you will always have Hashimoto's. If your thyroid is removed, you still have Hashimoto's. There is no cure at this time for rogue antibodies. There are ways to reduce the numbers of certain antibodies, but there is no way to make the immune system stop producing them.
Controlling your Celiac disease and doing things to reduce antibodies will help, and your thyroid function may improve.
But your Hashimoto's will continue to progress at some rate.
It won't go away.
I wish I were wrong.
First, I have been tested for Celiac Sprue and the test was negative. I was tested because I have had digestive problems for two years, and my Endo ran the test because she knew it was worth checking. So I know I don't have Celiac, which is a blessing because my sister does and I have seen the difficulties she has had with it.
I'm lactose intolerant, and eating whole cooked eggs or scrambled eggs is not a good idea. Been like that for years. But now I am starting to look at bread with dread. LOL!
Seriously, I know that my digestive tract is all messed up because of my thyroid (ex-thyroid) disease. But I keep getting this gnawing feeling (excuse the pun) that wheat is no longer my friend. Do you think glutton could be an issue for someone who does not have Celiac?
You made a few remarks about antibodies and causes of diseases. I don't mean to sound critical, but I think you are a little confused, or I am mis-informed.
Hashimoto's is an autoimmune disease. You do not get it by malnutrition or poor absorbtion. It is caused by antibodies.
Celiac Sprue is an autoimmune disease. It also is caused by antibodies.
Having one does not give you the other, specifically. They are linked by the fact that they are both autoimmune conditions, of which there are dozens. The thing is, once your immune system starts doing naughty things, a person is apt to develop several autoimmune conditions. Like Rheumatoid Arthritis, or Lupus, or...well, the list is long.
If you have Hashimoto's, you will always have Hashimoto's. If your thyroid is removed, you still have Hashimoto's. There is no cure at this time for rogue antibodies. There are ways to reduce the numbers of certain antibodies, but there is no way to make the immune system stop producing them.
Controlling your Celiac disease and doing things to reduce antibodies will help, and your thyroid function may improve.
But your Hashimoto's will continue to progress at some rate.
It won't go away.
I wish I were wrong.
There are so many things with wheat gluten. No bread, pastas, soy sauce, certain condiments, all cereals just about, no oatmeal or oats. You basically are down to meat, rice, fish, veggies, dairy. However if you have celiac disease the villi are flattened and the top of the villi are the lactose part, so most people are intolerant to dairy as well until things start healing then you can add dairy back in.
I haven't noticed any water weight but have a girl friend who is puffy all the time and for her it is corn related products and corn is in everything, fructose corn syrup. It is almost in everything packaged like wheat.
The weight was an issue for the last 2 years but i am finally there. It has been a long struggle and just had to work that much harder than the person whose body works properly.
100% better yes for me, it is like a switch on how much better i feel, totally amazing. I had no energy, no drive, muscle weakness and no interest really in anything i felt really frustrated because that is not usually how I am. So sure am glad to be out of that rut. Let me know if there is anything else I can help with and hope you get to the bottom of things.
I haven't noticed any water weight but have a girl friend who is puffy all the time and for her it is corn related products and corn is in everything, fructose corn syrup. It is almost in everything packaged like wheat.
The weight was an issue for the last 2 years but i am finally there. It has been a long struggle and just had to work that much harder than the person whose body works properly.
100% better yes for me, it is like a switch on how much better i feel, totally amazing. I had no energy, no drive, muscle weakness and no interest really in anything i felt really frustrated because that is not usually how I am. So sure am glad to be out of that rut. Let me know if there is anything else I can help with and hope you get to the bottom of things.
I was recently dx with Hashis and this is all new to me as well. For me it started out by getting sick and then the sickness would go away and I would run a fever for months at a time. Finally they realized that something was wrong other than a cold or an infection. Just recently started Synthroid 100mcg (this is my second month on it). I have days where I can take on the world and then days where I can't get outta bed. My worst time is if I get sick, seems that I can't get over simple things like colds and stuff like I used to. Still waiting on the docs to call me with my appt for an FNA. Hopefully soon, take care and Feel Better!!!!!
Wow, 100% better? I will try and cut it out completely for a few weeks. It is mostly just breads and stuff, right? Wheat products? I will do some more research and see what I can turn up. I think I am mostly off of it, but did eat some home made chocolate chip cookies this weekend (my first in months), which certainly is NOT a good thing for my intestines.
Have you noticed you are loosing water weight by chance? I am still so damn puffy! I thought the switch to Armour would help, but I still feel tired, fat and frazzled. Perhaps 3 weeks is just not long enough to see any changes? I started getting bad in January so maybe as long as I was sick it will take me to reverse out of hypo?
I'd love your feedback and will cut the gluten and see if there is a change. I do have a multitude of allergies (soy, egg, lactose intolerance) so perhaps I have had gluten issues for awhile too without knowing it.
Thanks again! I need all the support I can get at the moment.
Have you noticed you are loosing water weight by chance? I am still so damn puffy! I thought the switch to Armour would help, but I still feel tired, fat and frazzled. Perhaps 3 weeks is just not long enough to see any changes? I started getting bad in January so maybe as long as I was sick it will take me to reverse out of hypo?
I'd love your feedback and will cut the gluten and see if there is a change. I do have a multitude of allergies (soy, egg, lactose intolerance) so perhaps I have had gluten issues for awhile too without knowing it.
Thanks again! I need all the support I can get at the moment.
If you are cutting gluten it could take weeks to notice a difference and you have to be absolutely free of it and no cross contamination. It takes at least 3-6 months for your intestines to heal and up to a year or more if it is severe.
I had a blood test ordered from Prometheus lab on the internet. They mailed it to me and I took it to my doc and asked him to run it. It was the genetic testing and turned out i have the gene. If you have the gene you have it but may not be symptimatic until something triggers it in your life however I was symptimatic.
It has been 3 weeks for me now completely gluten free and I cannot tell you how different I feel. Like my old happy, chipper energetic self. It is so amazing to me and it has only been 3 weeks. I will keep you posted as more time goes by but so far I am 100% better than before.
If i can be of help with the thyroid thing let me know. This is how we find out we have to be our own advocate remember docs are just practicing medicine.
I had a blood test ordered from Prometheus lab on the internet. They mailed it to me and I took it to my doc and asked him to run it. It was the genetic testing and turned out i have the gene. If you have the gene you have it but may not be symptimatic until something triggers it in your life however I was symptimatic.
It has been 3 weeks for me now completely gluten free and I cannot tell you how different I feel. Like my old happy, chipper energetic self. It is so amazing to me and it has only been 3 weeks. I will keep you posted as more time goes by but so far I am 100% better than before.
If i can be of help with the thyroid thing let me know. This is how we find out we have to be our own advocate remember docs are just practicing medicine.
Hi 5thave,
Thank you for this information. I have cut most gluten out of my diet, but that does not seem to be helping. My nutritionist also has me on coconut oil. I am taking the Armour sublingually too, which I have heard helps absorption but just started taking it like that about 1 1/2 weeks ago.
How did your doctor test for the Celiac disease? Was it simply blood work? I did a food rotation diet a couple years ago and gluten did not make a difference for me, nor did it pop up on some allergy blood work I had done then as well.
Thanks for the information. Keep me updated on your progress. In the meantime, I will continue to keep gluten out of my diet.
Thanks!
Gina
Hi all, Just thought I would share my experience with you all and maybe you can do some investigation on your part. I have been battling hypo thyroid for years not staying stable. Doc kept upping meds year after year. Made me mad, what is going on? So i went to a homeopath. She put me on Armour and it has helped tremendously until this past year, once again unstable and she upped that but did the antibodies test to discover Hashimotos. Now I am taking iodine drops and something called Rehmania complex to lower the antibodies. While doing research on all this discovered Celiac disease, sounded like me, talked with local head of foundation, got tested and bammmm! sure enough have it and that is what is causing the hashi's. Apparently with Celiac your body has the high antibodies with that too and you do not absorb nutrients from your food, vitamins, or meds. Celiac's can also cause other diseases ie Hashi's if left undiagnosed/untreated for years such as myself. So hopefully with taking care of the Celiac's, not eating Gluten, which I am feeling like my old self again, my thyroid should start working more efficiently. This is all new to me so I will let you know how things are going in the future when i have my next lab tests. Thought you all should know..... for informational purposes.
Geeze, Red!
1) you made me bust out laughing at that last bit! LOL!!
2) I had no idea you have been doing the Hashi's gig for so many years. Sorry it took you so long to get the thyroid out. That seems like the only answer when Hashimoto's is full blown.
3) You're depressing the he// out of me. I thought when I nuked my thyroid I was going to get my life back in a year or two. Not just half of it. I hope things get straightened out for both of us.
4) Not to make light of your experience at all, and I'm sorry it has been so long, miserable, and frustrating, but there are people out there with Hashimoto's grilling in their back yard and cussing the mosquitos and living what they think is a very good life. How healthy they are, I'm not sure. Many of them have high cholesterol or heart problems or arthritis they don't realize is Rheumatic, but they think they are doing ok.
I think of them as the blissfully ignorant. Some of them feel fine, some of them have settled for less than fine. I'll bet if they knew more about Hashimoto's, they would be pressing harder to feel better.
My own experience with Hashimoto's has been going on for four years, and it has not been pleasant. I want pleasant.
I think (and desperately want to believe) that Hashimoto's can have a wide range of impact depending on antibodies and nodules or goiters and other factors. I know it can be dibilitating. I know there are millions walking around with it every day who are functioning adequitely, if not fine. I know under the right circumstances it can kill you.
That's a fairly broad range of possible outcomes.
The only way to know how it will affect me, or, laura, or my sister, is time. What I am saying is it affects people differently and this is a very hard question to answer, other than personal experience.
Which each of you have shared. I thank you all, especially those like Red who have been doing the shuffle for years.
It's not the cheery thread I was hoping to read, though.
Thanks for the honesty, though.
1) you made me bust out laughing at that last bit! LOL!!
2) I had no idea you have been doing the Hashi's gig for so many years. Sorry it took you so long to get the thyroid out. That seems like the only answer when Hashimoto's is full blown.
3) You're depressing the he// out of me. I thought when I nuked my thyroid I was going to get my life back in a year or two. Not just half of it. I hope things get straightened out for both of us.
4) Not to make light of your experience at all, and I'm sorry it has been so long, miserable, and frustrating, but there are people out there with Hashimoto's grilling in their back yard and cussing the mosquitos and living what they think is a very good life. How healthy they are, I'm not sure. Many of them have high cholesterol or heart problems or arthritis they don't realize is Rheumatic, but they think they are doing ok.
I think of them as the blissfully ignorant. Some of them feel fine, some of them have settled for less than fine. I'll bet if they knew more about Hashimoto's, they would be pressing harder to feel better.
My own experience with Hashimoto's has been going on for four years, and it has not been pleasant. I want pleasant.
I think (and desperately want to believe) that Hashimoto's can have a wide range of impact depending on antibodies and nodules or goiters and other factors. I know it can be dibilitating. I know there are millions walking around with it every day who are functioning adequitely, if not fine. I know under the right circumstances it can kill you.
That's a fairly broad range of possible outcomes.
The only way to know how it will affect me, or, laura, or my sister, is time. What I am saying is it affects people differently and this is a very hard question to answer, other than personal experience.
Which each of you have shared. I thank you all, especially those like Red who have been doing the shuffle for years.
It's not the cheery thread I was hoping to read, though.
Thanks for the honesty, though.
I hear you all, I have hashi's and my health turned (again, every 2-3 years it fails) this past December. I've put on 15 pounds since then (the endo says it is all just water) and I eat very little and was over exercising, which apparently messed up my adrenals. My life is currently turned upside down and I also blame myself. I look at my swollen mid section/thighs and then decide not to eat because I think it is my fault. I am working on it as I guess I have an eating disorder and something called "exercise bulima". After reading a few books, I was scared straight regarding my over exercising but still cannot get past 1000 calories a day.
I am going up to Mayo in July because I am sick of being sick and going through this cycle. Last summer, I was slim, active, energetic and happy. This summer I am ill. It is not fair. This is a brutal disease. I don't know what to tell you except buy every book ever written on this disease, become your own advocate and never stop until you see a doctor that "gets" you and is willing to work with you. Look into Armour before Synthroid and get a GOOD nutritionist and therapist. You literally need a team of people to help you get through this, or at least I do.
Good luck, my thoughts are with you.
I am going up to Mayo in July because I am sick of being sick and going through this cycle. Last summer, I was slim, active, energetic and happy. This summer I am ill. It is not fair. This is a brutal disease. I don't know what to tell you except buy every book ever written on this disease, become your own advocate and never stop until you see a doctor that "gets" you and is willing to work with you. Look into Armour before Synthroid and get a GOOD nutritionist and therapist. You literally need a team of people to help you get through this, or at least I do.
Good luck, my thoughts are with you.
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