Autoimmune Thyroid Disease

[ame]

Before you jump into this Iodine stuff, make sure you're not allergic. A LOT of thyroid patients are. I am, I have been my entire life. It cannot come within a mile of me.

I thought I posted earlier in here, but I was born without one, and I am the first KNOWN case of a white female born totally without one that survived. They found it early in my mom's pregnancy, she already had a broken one. They had to supplement me through her so I would continue to grow. I am the reason that babies get tested at birth in this and several other states, due to my pediatrician lobbying for it. Many endocrinologists pull out their medical books and there my stupid Quasimodo face is, birth through 18.

I have had no luck with anything other than Synthroid, personally. We tried Armour and some natural options, and it's as if my body just doesn't absorb them at all.

Also--please note that you need to stay the F away from soy heavy products if you're on thyroid meds. They prevent your body from properly utilizing the meds.

 

[Ellen]

Hi ame

How interesting to hear you were born without a Thyroid, and are in medical books. Though, I'm sure interesting is probably not what you would call it.

Here's a good article on iodine "allergies". Remember, it's in many foods naturally.
https://www.globalhealingcenter.com/natural-health/whats-an-iodine-allergy/

And good point on soy, Dr. Brownstien points that out in his book.

Good to "see" you!

 

[missy]

Before you jump into this Iodine stuff, make sure you're not allergic. A LOT of thyroid patients are. I am, I have been my entire life. It cannot come within a mile of me.

I thought I posted earlier in here, but I was born without one, and I am the first KNOWN case of a white female born totally without one that survived. They found it early in my mom's pregnancy, she already had a broken one. They had to supplement me through her so I would continue to grow. I am the reason that babies get tested at birth in this and several other states, due to my pediatrician lobbying for it. Many endocrinologists pull out their medical books and there my stupid Quasimodo face is, birth through 18.

I have had no luck with anything other than Synthroid, personally. We tried Armour and some natural options, and it's as if my body just doesn't absorb them at all.

Also--please note that you need to stay the F away from soy heavy products if you're on thyroid meds. They prevent your body from properly utilizing the meds.

Thank you @ame for weighing in. I appreciate it. Had no idea what you went through and wow. I am definitely concerned about being allergic to Iodine and haven't started taking it yet and when I try it I will go really slowly. And I am staying as far away from soy products as possible. I know they are poison for those of us on thyroid meds and thanks for the reminder. Hope you are doing well and thank you again for your insight.

 

[missy]

Hey, @missy !

I do not have suggestions about which B vitamins to take other than the methylafolate and methylated B-12 (those are the ones I take). I just recall that the doctor I spoke with about the MTHFR stuff who seemed to know the most about it cautioned me re: multivitamins unless all the Bs in them were methylated.

As far as other ways to get your iron levels up, I was told to cook in a cast iron skillet. And to est lots of dark leafy greens.

I know all of this is frustrating and taking longer than you would like, but I feel sure you will get your levels optimized eventually. Just focus on trying to be as healthy as you can in all things in the meantime. You are doing all the right things and you are SO much more educated than many of us were when we started our thyroid journeys! Thinking back on it, I knew nothing. Anyway, it sounds like you found a good endo who is relying on how you feel. That is HUGE.

Hugs. You will get there.

Thanks so much @Tonks. Sometimes I feel like I am in a huge fog and have no clue what I just read or what I am doing. But taking it one day at a time and when necessary one hour at a time and hoping it all works out. Sometimes you just have to plow ahead and just do the best you can. Appreciate your encouragement and glad you are doing well.

And I just ordered the B6 and B2 versions that are more friendly for those of us with MTHFR so hopefully now I have it covered re the B vitamins. But as with everything pertaining to this I know there is much I just don't know. You know that saying...we don't know what we don't know.

 

[Matthews1127]

I have not read through all of these posts, yet.
I wish that I had seen this thread, sooner.
I have worked in the field of endocrinology for the past 20 years. I started as a student in college, and I am now at the 20th year of my employment with some of the most experienced and well respected physicians in my area. All of the knowledge that I have acquired in this field was acquired through apprentice ship through these physicians; their knowledge and experience is far more valuable than anything you’ll find online or in a textbook.
Hashimoto’s thyroiditis is a simple form of hypothyroidism. Holistic medicine is not always the key, as most people do not clearly understand how to interpret thyroid levels, in general. Even thyroid levels that appear to be in normal range can be on one end or the other of positive or negative ends of normal, Which explains why someone may feel fatigued or anxious. There are other thyroid levels that must be considered, in conjunction with the thyroid stimulating hormone, as I have seen discussed.
Outside of holistic therapy, there are natural compounded versions of thyroid medications that are just as natural, non-synthetic, and that could be adjusted accordingly in order to keep that thyroid level and check. Armour Thyroid, Nature-Thyroid, and Uni-Throid are popular alternatives to Synthroid, Levothyroxine, and Levoxyl.
Tapazole is a very tricky medication, and you must be monitored, closely, if you’re on it. There is even Tirasint.
It is true that if you have an allergic reaction to most contrast dyes, during any kind of scan, most likely you will have a reaction to iodine. If you can tolerate contrast during a CT or MRI, then you should be able to tolerate iodine.
I don’t know what your thyroid ultrasound showed or why iodine is even in the discussion (have to go back and read everything), but if you’ve been ordered to have radio active iodine or any kind of ablation, then there’s a really good reason for it. Some people opt to have their thyroid ablated, rather than having it removed. Some patients are not even given the choice; it all depends on their diagnosis and their circumstance.
Most people think that after you kill the thyroid gland or you have it removed that that is the end of it and you no longer have to go through treatment, and that could not be further from the truth. You still need to continue being monitored through lab tests, medication dose adjustment, and most likely, yearly body scans to make sure that you don’t have any recurrence, and that nothing new is discovered. Cancer can still appear, anywhere... even if your initial results were benign.
Thyroid disease is lifelong, and so is taking the meds; it’s life sustaining medication.
The physicians that I work for have over 30 years experience each, and none of them prescribe holistic or homeopathic alternatives to the medications I’ve listed because the success rate in patients is much higher when prescribing those medications as it is with the other homeopathic alternatives. That is based on THEIR experience.
Again, I have not read this thread in its entirety, and I plan to do so, at some point today, but I wanted to post this information as it may be helpful, at some point. I just hope it’s not hind sight information right now.

 

[Matthews1127]

Thank you @ame for weighing in. I appreciate it. Had no idea what you went through and wow. I am definitely concerned about being allergic to Iodine and haven't started taking it yet and when I try it I will go really slowly. And I am staying as far away from soy products as possible. I know they are poison for those of us on thyroid meds and thanks for the reminder. Hope you are doing well and thank you again for your insight.

On a sidenote: if you take a multivitamin that contains calcium any antacids or a calcium supplement of any kind be sure that you separate taking those vitamins and that supplement and your thyroid medication by 3 to 4 hours apart. Calcium can contra indicate certain thyroid medications and prevent the thyroid medication from absorbing correctly in the body. Always take them 3 to 4 hours apart.

 

[ame]

Hi ame

How interesting to hear you were born without a Thyroid, and are in medical books. Though, I'm sure interesting is probably not what you would call it.

Here's a good article on iodine "allergies". Remember, it's in many foods naturally.
https://www.globalhealingcenter.com/natural-health/whats-an-iodine-allergy/

And good point on soy, Dr. Brownstien points that out in his book.

Good to "see" you!

Great to see you too! Hope you're doing well and lucky us sweating ourselves to death.

Soy was something I learned the hard way, actually. But now that I know better...

Thank you @ame for weighing in. I appreciate it. Had no idea what you went through and wow. I am definitely concerned about being allergic to Iodine and haven't started taking it yet and when I try it I will go really slowly. And I am staying as far away from soy products as possible. I know they are poison for those of us on thyroid meds and thanks for the reminder. Hope you are doing well and thank you again for your insight.

Absolutely. My mom is frankly "the expert" on this, because she had issues before me, and then with me it was an adventure! I am glad being my freak self in a book has actually been beneficial to people but man I am mortified when someone realizes it. I have friends who are nurses or went to med school and were like "WHY ARE YOU IN MY BOOK. BTW YOU LOOKED LIKE A FREAK AS A BABY."

only as a baby? Pssh.

Anyway, I hope you get the treatment you need that works best for you. Make sure they're not just testing TSH.

I have not read through all of these posts, yet.
I wish that I had seen this thread, sooner.
I have worked in the field of endocrinology for the past 20 years. I started as a student in college, and I am now at the 20th year of my employment with some of the most experienced and well respected physicians in my area. All of the knowledge that I have acquired in this field was acquired through apprentice ship through these physicians; their knowledge and experience is far more valuable than anything you’ll find online or in a textbook.

Oh do I wanna pick your brain sometime! Thank you for weighing in!

 

[Matthews1127]

Great to see you too! Hope you're doing well and lucky us sweating ourselves to death.

Soy was something I learned the hard way, actually. But now that I know better...



Absolutely. My mom is frankly "the expert" on this, because she had issues before me, and then with me it was an adventure! I am glad being my freak self in a book has actually been beneficial to people but man I am mortified when someone realizes it. I have friends who are nurses or went to med school and were like "WHY ARE YOU IN MY BOOK. BTW YOU LOOKED LIKE A FREAK AS A BABY."

only as a baby? Pssh.

Anyway, I hope you get the treatment you need that works best for you. Make sure they're not just testing TSH.



Oh do I wanna pick your brain sometime! Thank you for weighing in!

I have no objection to providing helpful info to anyone in need. I’m not a licensed medical professional, so I’m not really the one to come to for medical advice, per se, but...I can give basic knowledge & help people better understand. Knowledge is power, and more than half the battle of coping & dealing with any disease is knowing what it is, and how to fight it.
I do agree with others who have stated that there’s no point in seeing someone who just wants to look at numbers and treats you based upon the piece of paper and whatever the lab results show. There are physicians out there like that. However, mine are not! These women treat the patient, and understand that every person who walks through the door has their own medical history, their own experiences, and should be handled differently based upon those differences, and that age is a factor and many other things play a part in evaluating a patient’s care. The numbers are only a portion of that care, but they are vital in knowing exactly what the gland is or is not producing in order to keep things balanced.

 

[Matthews1127]

Ah, Missy, I'm sorry you're dealing with this. As I mentioned previously, I was diagnosed with Hashimoto's a very long time ago, and then with hypothyroidism shortly after the birth of my first child.

I'm really sorry I'm, as usual, short on time right now, but a few quick thoughts.

1. Endocrinologists as a group are not the most cutting edge practitioners. They seem to be adhere to some fairly archaic dogma when it comes to treatment. My own belief is that the majority of them know a lot about diabetes and not much about thyroid function other than the textbook stuff they learned in medical school. I have actually had responses from endos over the years that floored me - one (a 70-something man) who told me I couldn't possibly have a thyroid issue because I was thin, and one (a sixtyish woman) who told me that sometimes with thyroid issues you have to work on acceptance that you'll never really feel right again. I walked out of both their offices and never went back.

2. If there is one thing you MUST do it's to find an endo who treats the patient rather than the numbers. IMO, the numbers only tell a very limited portion of the story.

3. If I had this to do over, I would most definitely have gotten someone to put me on a small dose of thyroid hormone as soon as the antibodies were found. I know some doctors even now don't like to treat subclinical hypothyroidism, but I think they're wrong. It's only common sense that the more your thyroid is in overdrive trying to keep everything ticking along, the more antibodies it's going to make.

4. There's a vast array of anecdotal stuff out there (sadly, probably more of that than of good, evidence-based studies), which is not to say it's necessarily wrong, but which is to say, it takes a lot of wading through and trying to sort out. I haven't come across anything too convincing on LDN and a lot of people report very disturbed sleep, which I suspect is the last thing most thyroid patients need.

5. Diet and supplementation are very fraught subjects, and, I suspect, very individual. I've been gluten-free, dairy-free and/or nightshade-free for long periods and it made no difference either to how I felt, to my thyroid function or to my antibody levels. I believe there is some decent evidence that soy might not be beneficial to thyroid antibodies, so I avoid it, and that very low carbohydrate diets aren't particularly helpful. I tend to be a somewhat careful eater by nature, I think, and eat fresh and organic as much as possible, but I do eat everything. I take a probiotic, have some fermented vegetables every day, most days have either some kefir or kombucha. As supplements, I take vitamin D, (and because they're anti-inflammatories), turmeric with piperine, magnesium and fish oil). It's also important to make sure your iron levels and ferritin stores are good. I have a couple of Brazil nuts every day (for selenium and for the square of dark chocolate I have with them ) and I take a very small dose (.5 mg) of melatonin every night as there is a small but high quality study that MS patients have fewer symptoms with high levels of melatonin- I'm slightly suspicious of the content of a lot of it, so get it by prescription.

5. If you have thyroid issues and are having other hard to pinpoint, vague or otherwise confusing symptoms, doctors will tend to forget that old saying about 'when you hear hoofbeats, don't look for zebras' and will spend a lot of time sending you for tests and explaining why your symptom can't possibly by thyroid-related. They. Are. Wrong. If I were to list the symptoms I have had over the years that were absolutely, positively, definitely, totally not thyroid-related that all disappeared the minute I got my thyroid levels right, it would be a very long list indeed (see point 1 about the fact that most endocrinologists don't really know all that much about thyroid function).

6. Run, don't walk, away from any endo who doesn't test your T3 levels.

7. Synthetic thyroid hormone is not the answer for everyone. Many people (me included) do much, much, much better on naturally desiccated thyroid products. They're prescription only, but GPs and endos don't like to prescribe them much- if that's what you want or think you need, keep looking for a doctor who is sympathetic to that.

8. Have you had your hormone levels checked? Times of drastically changing hormones - pregnancy, postpartum, peri-menopause, menopause seem to be times where thyroid issues are triggered.

9. Have you been tested for Lyme Disease? I've always been convinced that's what triggered mine.

10. It's completely possible to live a totally full and normal life with this.

It’s quite unfortunate that you had two terribly bad experiences with medical specialist who, quite frankly, needed to return to medical school.
I hear horror stories very much like yours, on a daily basis. We constantly have new patients who are wishing to transfer from their Endocrinologist to one of our more knowledgeable and more experienced physicians. Some of the stories are absolutely remarkable (not in a good way), and abhorently disappointing.
As you mentioned there are so many other thyroid contributing factors that need to be tested along with the thyroid stimulating hormone. These laboratory tests include free T3, free T4, and thyroglobulin antibodies, as well as thyroid peroxidase antibodies.
Recently, at least in the past 10 years, our physicians have, inadvertently, discovered that a lot of thyroid patients experience IBS or G.I. irregularities or issues that eventually develop into celiac disease. While celiac disease is usually a genetic disease, or hereditary, many of our thyroid patients have been tested for celiac disease, after complaining for quite some time about unresolved Gastro intestinal problems. Nine times out of 10 they test positive for celiac disease. The most common way of testing for this is tissue transglutaminase antibody. Just something that I would throw out there just in case any of you have, at some point, experienced unresolved Gastro intestinal problems that you would like to have further examined. This diagnosis requires someone’s lifestyle to be changed in a way that most are not very happy with, nor are very familiar with, and that means going on a gluten-free diet. However, it is very necessary to take the steps and make the lifestyle change, in order to preserve a healthy lifestyle, and make sure that you do not do further harm to your body. Untreated, this disease leads to many health complications, and, in some cases, death.
Getting back to the subject of testing blood work levels: anyone whose physician is testing a “reverse T3” needs to go back to medical school and fast forward to the year 2018; this test is so Neanderthal, it’s no longer considered to be valid by the majority in the medical profession in First World Countries. It’s extremely inaccurate, and means nothing in reference to any of the other lab results.
If your primary care physician has been following your thyroid levels and refuses to make any changes to your medication because your levels are “normal“, it’s likely due to the fact that they are not interpreting your labs correctly or have not ordered the appropriate labs in conjunction with one another in order to be able to make a concise decision on what medication dose you should actually be on. Interpreting TSH levels is tricky: what’s high is low, and what’s low is high. Correctly interpreting these values is vital in order to treat the patient. From my experience, most family doctors do not interpret these values correctly, and once the patient walks through my door, it’s evident that a simple change in medication or the dose, itself, is necessary.
This puts the patient through a grueling experience because it’s like starting all over again from the beginning. It takes the human body 6 to 8 weeks to make a real adjustment to any kind of dose change in medication, and due to the fact that we’re dealing with the thyroid function, it makes the patient irritable, tired, fatigue beyond measure, or extremely anxious, gittery, and restless.
It’s very frustrating to both patient & specialist. I’m very fortunate to work with a group of women who actually know what they’re doing, as far as the field of endocrinology, and the rhealm of thyroid disease. It’s truly mind-boggling at the number of those in practice who truly ARE clueless!

 

[Matthews1127]

Hi Jaaron, thank you for the added info. I am glad you found the perfect combination for you and that you are doing well. It is a process I know.

I left the new endocrinologist this afternoon feeling a bit underwhelmed with her. I chose her thinking ok young endocrinologist and hopefully will cutting edge not old and set in her ways. Well nope. She was conventional and by the mainstream medical textbook. This endocrinologist diagnosed me with Hashimotos from the blood work (just from my TPO results) and felt my thyroid (which felt normal size) but didn't think it necessary to get other blood work nor do any other tests.

She wants me to go on thyroid meds but she refused to put me on the Armour as she said it is too potent for me. Something about receptors in the heart being sensitive to T4 (I guess the Armour is T4 and the Levothyroxine/Synthroid is T3). So she put me on 25 mg of Levothyroxine to start and is seeing me back in 3 months and will repeat blood work then. She told me take it first thing in AM on an empty stomach so I have to rearrange my Oracea med schedule. I am debating what to do. I think I will try it and see how my body feels on it. She did say I could stop at any time if I am getting any side effects but that would be rare.

I asked her about supplementation and diet etc and she nixed it all saying diet has nothing to do with hashimotos. And that there was no way to reverse it. I do not agree completely with her way of thinking as diet/food is medicine in a very real way and to pooh pooh it is just not right IMO.

I did just pick up Brazil nuts on my way home. They are HUGE haha. But very tasty and I am going to start with one a day.

Hope you are having a wonderful dinner party and thank you for taking the time to share info and help me.



Hi Lyra, thanks for your post. I have been tested by my derm in Dec and Jan for Lupus, RA etc but not the HLA b27. I will ask him about this when I see him on Thursday. Thanks. I wish I had more proactive thinking out of the box doctors like you do. I like my derm very much but he is too conventional. I found an integrative endocrinologist located in NYC while I was searching online this AM but she accepts no insurance and the initial consult is $800 with each additional followup up $500 not including blood work and other tests so it will be pricey. Not ruling it out but I don't feel like I am there just yet if you kwim. I am going to see how it goes on the Levothyroxine.



Aww ILikeShiny I am sorry you are dealing with many of the symptoms still. Hoping you find your perfect combination soon. Thanks for the additional info. She refused to prescribe the NDT for me (see my above explanation to Jaaron) but I am taking it one day at a time and if I am having problems with the Levothyroxine I will contact her and see what I can do. Synthroid isn't covered by my medical insurance but again if I am having issues with the Levothyroxine maybe I can contest it. I am just tired of fighting. Fighting for doctors who think outside the box, fighting the medical insurance to cover procedures and meds and treatments and fighting to be able to be in good health.

Thank you so much for your help. I appreciate it.




Thank you sweet Yenny and (((hugs))) to you too. Hope all is going well with you and your family!

If your insurance refuses to pay for brand-name Synthroid, but levothyroxine is just not doing the trick, your Pharmacy can submit the rejection from the insurance company to your doctor’s office and request what is called a prior authorization for Brand necessary medication, based upon medical necessity.
There is no guarantee that the insurance company will approve the prior authorization given by your physician, but it is possible that with a physicians request for medical necessity, your insurance company will approve brand Synthroid in order for you to try to improve your thyroid function. Levothyroxine is the generic form of Synthroid, and is chemically close to the namebrand Synthroid, but it is not exact. Some patients just do better on Synthroid than they do on the generic form.
I just thought you should know that there is a possibility that you may be able to get around that loophole.

 

[Ellen]

I want to reiterate something I said early on. When I say Iodine in the sense of how Dr. Brownstien (and Dr. Abraham) use it (and I take it), I am actually talking about a combination of iodine and iodide. Just wanted to make that clear.

I also want to address fears of having an allergic reaction. Per Dr. Brownstien, who has treated thousands of patients, I quote from his book.

"In my experience, an allergy to inorganic iodine/iodide is a rare occurrence. An allergy to radioactive iodine dye, commonly used in many medical imaging procedures, does not guarantee that there is an allergy to inorganic iodine/iodide-such as in Lugol's or tableted Lugol's. In fact, my experience has shown that it is a rare occurrence to have an allergy to inorganic iodine/iodide. During twenty years of practice, I have seen 3 patients with an allergy to inorganic, non-radioactive iodine."


Amy, yes, we are sweltering indeed! And I never would have known you were anything but a normal baby.

 

[Phoenix]

Missy ,
I've been following this thread silently. I too am a sufferer of Hashimoto's and have been for several years. I've been fighting whatever it is that's been afflicting me these past 8 months. I'm wondering if it's related/ an AI problem. Anyway, I just wanted to come out of hibernation to tell you I've been thinking of you and I can relate to what you're going though. Hang in there. {{HUGS }}

 

[missy]

I have not read through all of these posts, yet.
I wish that I had seen this thread, sooner.
I have worked in the field of endocrinology for the past 20 years. I started as a student in college, and I am now at the 20th year of my employment with some of the most experienced and well respected physicians in my area. All of the knowledge that I have acquired in this field was acquired through apprentice ship through these physicians; their knowledge and experience is far more valuable than anything you’ll find online or in a textbook.
Hashimoto’s thyroiditis is a simple form of hypothyroidism. Holistic medicine is not always the key, as most people do not clearly understand how to interpret thyroid levels, in general. Even thyroid levels that appear to be in normal range can be on one end or the other of positive or negative ends of normal, Which explains why someone may feel fatigued or anxious. There are other thyroid levels that must be considered, in conjunction with the thyroid stimulating hormone, as I have seen discussed.
Outside of holistic therapy, there are natural compounded versions of thyroid medications that are just as natural, non-synthetic, and that could be adjusted accordingly in order to keep that thyroid level and check. Armour Thyroid, Nature-Thyroid, and Uni-Throid are popular alternatives to Synthroid, Levothyroxine, and Levoxyl.
Tapazole is a very tricky medication, and you must be monitored, closely, if you’re on it. There is even Tirasint.
It is true that if you have an allergic reaction to most contrast dyes, during any kind of scan, most likely you will have a reaction to iodine. If you can tolerate contrast during a CT or MRI, then you should be able to tolerate iodine.
I don’t know what your thyroid ultrasound showed or why iodine is even in the discussion (have to go back and read everything), but if you’ve been ordered to have radio active iodine or any kind of ablation, then there’s a really good reason for it. Some people opt to have their thyroid ablated, rather than having it removed. Some patients are not even given the choice; it all depends on their diagnosis and their circumstance.
Most people think that after you kill the thyroid gland or you have it removed that that is the end of it and you no longer have to go through treatment, and that could not be further from the truth. You still need to continue being monitored through lab tests, medication dose adjustment, and most likely, yearly body scans to make sure that you don’t have any recurrence, and that nothing new is discovered. Cancer can still appear, anywhere... even if your initial results were benign.
Thyroid disease is lifelong, and so is taking the meds; it’s life sustaining medication.
The physicians that I work for have over 30 years experience each, and none of them prescribe holistic or homeopathic alternatives to the medications I’ve listed because the success rate in patients is much higher when prescribing those medications as it is with the other homeopathic alternatives. That is based on THEIR experience.
Again, I have not read this thread in its entirety, and I plan to do so, at some point today, but I wanted to post this information as it may be helpful, at some point. I just hope it’s not hind sight information right now.

Matthews, thank you so much for reading and replying to this thread and sharing your wealth of knowledge. I so appreciate it. I have to read and process everything you wrote as my brain is not functioning at full capacity right now. I am very grateful and will carefully read and reread what you wrote.

A few quick points. As @Ellen points out when I am speaking about Iodine I mean a combo of Iodine and Iodide. I have bought 2% Lugols solution and will trial that with a tiny amount each day.

I just got my latest blood tests back and they are worse than before. My T3 dropped too much. My endocrinologist wants me to increase my Thyroid Med (Armour) again but this time instead of 2 grains (120 mg) we are going more slowly due to my palpitations from the 2 grains. So I am taking 60 mg late night/early morning and 15 mg in the afternoon and after a week or so increasing that extra 15 t0 30 mg in the afternoon so going from 60 mg once a day to 60 mg once a day and 30 mg once a day. When I tried 60 mg twice a day after about a month my heart and bp went crazy. So hopefully there won't be a repeat of that.

I have cut out all gluten (though I rarely ate anything with gluten anyway) and all corn, and most added sugar, no soy, no dairy (I miss ice cream), many nuts (my favorite and hardest to cut out so am cheating a bit with nuts), plus other foods I cannot think of right now. I always thought I ate healthfully but now I am trying to stick to more of an Auto Immune Paleo diet which is challenging for me.

My medical history is complicated in that I am dealing with mercury toxicity as well plus a few other health issues and while I am still eating fish I am only eating lower mercury fish now. Not sure that will be sufficient and if my levels don't drop I will have to start my vegan diet again which is not a good diet for AI diseases due to beans and other vegan staples having anti nutrients in them like Lectins etc. So I feel anxious about that as I have no good options for me diet wise if I cannot eat fish and beans and nuts are verboten. I am not getting enough protein as it is and I also realize that if I have underlying GI issues everything is more complicated. One day at a time is how I am dealing with all of this and I am thankful for PSers who are so generous with sharing their knowledge.

 

[missy]

Missy ,
I've been following this thread silently. I too am a sufferer of Hashimoto's and have been for several years. I've been fighting whatever it is that's been afflicting me these past 8 months. I'm wondering if it's related/ an AI problem. Anyway, I just wanted to come out of hibernation to tell you I've been thinking of you and I can relate to what you're going though. Hang in there. {{HUGS }}

Thank you Phoenix. I have been thinking of you also and hoping all is well. Sending you hugs and good wishes and hope you stay around. I have missed you.

 

[missy]

Absolutely. My mom is frankly "the expert" on this, because she had issues before me, and then with me it was an adventure! I am glad being my freak self in a book has actually been beneficial to people but man I am mortified when someone realizes it. I have friends who are nurses or went to med school and were like "WHY ARE YOU IN MY BOOK. BTW YOU LOOKED LIKE A FREAK AS A BABY."

only as a baby? Pssh.

Anyway, I hope you get the treatment you need that works best for you. Make sure they're not just testing TSH.

Thanks @ame. Your post made me laugh. You are so not a freak but I totally get how you are feeling. Honestly I feel like a freak sometimes because of all my medical issues. I feel like what the heck is wrong with me and why oh why can't I be just "normal". Right now I would give so much just to be "normal" with health issues. I don't talk about this IRL because I know so many people would be rolling their eyes thinking oh yeah she's allergic/sensitive to gluten etc. Sometimes I just want to hide away from everyone because I don't want to deal with people thinking I am making stuff up or being a prima donna etc. And while I realize it's none of my business what others think of me () and I truly believe that it is hard to live it if you kwim. But yeah I am shrugging negative people off and embracing those who accept me for me and don't think I am being "difficult". And also not talking about this IRL except with my very closest friends who get it and love me for who I am and not who they want me to be. If that makes sense.

Anyway all this to say I appreciate your input and sorry you went through all this and how lucky your mom is there for you and helped you navigate the way though I am also sorry she went through all this. Hoping everyone is doing well now and thank you again.

 

[missy]

@Ellen Just wanted to thank you again for all your support and kind sharing of knowledge. I really appreciate your time and help. Hope you are doing well and feeling stronger each day. (((Hugs))).

 

[Phoenix]

Missy,

Re your not being able to sleep well, I have that too and i take 5mg of melatonin every night which seems to help. I think someone may have mentioned it somewhere in this thread. Not sure if you've mentioned taking it yourself. Just thought I'd throw it out there.

 

[missy]

Missy,

Re your not being able to sleep well, I have that too and i take 5mg of melatonin every night which seems to help. I think someone may have mentioned it somewhere in this thread. Not sure if you've mentioned taking it yourself. Just thought I'd throw it out there.

Thanks Phoenix, I am not taking melatonin but have been thinking about if for a long time now. I have been procrastinating with this as with so many other supplements. Thanks for letting me know it is helping you. Is there a specific brand/dosage you recommend? I literally just read a few minutes ago that one should consider taking 5-HTP to boost melatonin for sleep. As well as some other supplements that may be helpful. Here's the link for those who might be interested.

https://articles.mercola.com/sites/...180610Z1_UCM&et_cid=DM213737&et_rid=331790779

5-HTP Boosts Melatonin and Helps Optimize Sleep
Another gem I learned from Cowden during a visit to my home was the use of 5-hydroxytryptophan (5-HTP). My deep sleep measured at zero minutes, despite spending time at the beach daily to expose myself to bright sunshine and using blackout drapes to sleep in the dark. I also turned off the electricity to my bedroom. I thought that's all you needed to optimize melatonin. It turns out that's not the case when you get older. Cowden explains:

"Tryptophan, which you find in turkey and pumpkin seeds, gets converted to 5-HTP. 5-HTP is converted to 5-hydroxytryptamine, also called serotonin. 5-hydroxytryptamine finally gets converted into melatonin. However, as we age, toxins pile up in the enzymes [responsible for these conversions] and prevent those enzymes from performing the work they need to do.

You have, over time, lower and lower levels of 5-HTP, serotonin and melatonin, even though you're doing everything else right. So, yes, we have to continually detoxify, and also, sometimes, support those enzyme systems by what we call excessive precursor supply. You boost the building blocks to make the final product.

Melatonin is not very well absorbed out the gut. Some people take melatonin, but some people have kind of a paradoxical response from that. But if they take 5-HTP, they can actually make as much 5-hydroxytryptamine as they need to fairly easily, and then they have the serotonin and melatonin."

 

[Phoenix]

Missy,

I take Natrol brand. You can get it from iHerb.

Thanks for mentioning the 5-HTP. I've read about it and have actually bought it , but haven't started taking it yet. You can also get melatonin mixed with 5-HTP.

 

[missy]

Missy,

I take Natrolbrand.

Thanks for mentioning the 5-HTP. I've read about it and have actually bought it , but haven't started taking it yet. You can also get melatonin mixed with 5-HTP.

Thanks Phoenix.

Do you follow an AIP (auto immune paleo) type of diet? I am having a very challenging time cutting out beans and nuts specifically. Have you made any specific dietary changes to help or is there anything specific you feel has made a difference to how you are feeling?

 

[Phoenix]

Thanks Phoenix.

Do you follow an AIP (auto immune paleo) type of diet? I am having a very challenging time cutting out beans and nuts specifically. Have you made any specific dietary changes to help or is there anything specific you feel has made a difference to how you are feeling?

Not yet, Missy. I eat everything really, except processed sugar, milk (I'm lactose intolerant) and less salt (family history of high blood pressure). Have recently cut out nuts cuz they may cause inflammation. I suspect whatever it is I have is related to my Hashimoto's somehow/ may be AI related but am not 100% certain yet. I'm trying to get better with homeopathic treatments (steam inhaling 2-3 times a day, eating 3-4 cloves of garlic a day), physio to improve my balance and doing my weight training. That's about it, really.

Oh, this is prob unrelated to your issues. But I found after I stopped taking the evil meds (except the thyroid med), I started to improve . Go figure!!

 

[missy]

Not yet, Missy. I eat everything really, except processed sugar, milk (I'm lactose intolerant) and less salt (family history of high blood pressure). Have recently cut out nuts cuz they may cause inflammation. I suspect whatever it is I have is related to my Hashimoto's somehow/ may be AI related but am not 100% certain yet. I'm trying to get better with homeopathic treatments (steam inhaling 2-3 times a day, eating 3-4 cloves of garlic a day), physio to improve my balance and doing my weight training. That's about it, really.

Oh, this is prob unrelated to your issues. But I found after I stopped taking the evil meds (except the thyroid med), I started to improve . Go figure!!

Thanks again Phoenix. I hope the path you are on continues helping you improve and allows you to feel well again.

On top of it all I am losing so much hair and have an official diagnosis of alopecia though the dermatologist specialist cannot say with 100% confidence which type of alopecia without a biopsy. My alopecia dermatologist specialist wants a plastic surgeon to do the biopsy so for now we are holding off on the biopsy. The hair loss is hitting me close today as I was looking through photos from my family visit yesterday and it is shocking how much hair I have lost. I’m remaining upbeat however as there’s no other alternative for me and I just have to put it all in perspective. I just wish we had more definitive diagnoses and treatments instead of the guesswork it seems to be much of the time and the lumping it all in the autoimmune category. Definitely as much of an art as a science diagnosis and treatment.

Sending you healing vibes and gentle hugs.

 

[Phoenix]

OMG!! Missy!! I meant to also post about this in this thread and i forgot!! My bad!

I posted somewhere else, maybe my own threat (?), about my hair loss . I was losing soooo much , like 200-300 hairs a day. I finally figured it out on my own!! I was simply not taking enough levothyroxine. And maybe what I was taking was not being absorbed properly, so now I take it in the morning with just water and waited half an hour- an hour before I eat or drink anything. My hair is completely back to normal now.

I know you're trying to figure out your dosage and timing . I hope you will soon.

I firmly believe you have to be your own champion and figure out for yourself what works and what doesn't. A lot of the time, the doctors just guess and kinda work in the dark . To this end, I applaud you for doing the research you're doing . Hope you find relief soon . x

 

[junebug17]

Missy, just want to mention I take 3 mg melatonin to help with my sleep - might be worth a try, you can just stop taking it if it doesn't agree with you, there are no problems with that. You could start at 1 mg and build up. My issue with it is I take it too late at night, which is making me groggy in the morning, so I'm working on taking it earlier and going to bed earlier.

A friend recommended magnesium glycinate for sleep but I haven't tried it yet. My brother has severe insomnia and he has just started taking it, and he says it seems to be helping.

I'm sorry you are feeling down about your hair, I totally understand. You already know that I've been very distraught about my appearance in pics recently - so believe me, I get it. FWIW I didn't notice a thing in the pics and you look beautiful! But I know you see a difference and it's a big worry for you, and I hope you're feeling better about it soon - sending hugs and love.

 

[missy]

Missy, just want to mention I take 3 mg melatonin to help with my sleep - might be worth a try, you can just stop taking it if it doesn't agree with you, there are no problems with that. You could start at 1 mg and build up. My issue with it is I take it too late at night, which is making me groggy in the morning, so I'm working on taking it earlier and going to bed earlier.

A friend recommended magnesium glycinate for sleep but I haven't tried it yet. My brother has severe insomnia and he has just started taking it, and he says it seems to be helping.

I'm sorry you are feeling down about your hair, I totally understand. You already know that I've been very distraught about my appearance in pics recently - so believe me, I get it. FWIW I didn't notice a thing in the pics and you look beautiful! But I know you see a difference and it's a big worry for you, and I hope you're feeling better about it soon - sending hugs and love.

Thank you Junie. I hope you experience much success with this and good sleep! I have been considering adding melatonin just hesitant because I am taking so many supplements and meds and not sure if they might interfere with each other. I have to take a second dose of thyroid med at night now so not sure how that interacts with the melatonin. And my alopecia specialist *might* be adding LDN to my regimen in 2 weeks so that also needs to be taken at bedtime so lots of things potentially interfering. It's complicated like almost everything is these days.

I have been taking 800 mg Magnesium (Doctor's Best Magnesium) for years now in the evening. I cannot say if it helps with sleep but I have heard that and I know I need it so I take it. I am very glad it is helping your brother with his insomnia. That is a wonderful update.

Thank you so much for being here Junie and comforting and supporting me along this difficult journey. (((Hugs))).

 

[ksinger]

my alopecia specialist *might* be adding LDN to my regimen in 2 weeks so that also needs to be taken at bedtime so lots of things potentially interfering. It's complicated like almost everything is these days.

I'm curious, why does your doctor think LDN would help with hair loss?

 

[jaaron]

Hi Missy,

I'm sorry I never seem to have time to get properly caught up and that you're dealing with so many different things.

Do you by any chance have the results of your latest set of thyroid tests with the reference ranges? I'm glad you've found an endo you feel ok about, but there are a couple of things I'd suggest taking a look at:

1. How long were you on the initial dose of Armour before he raised it? Mine never makes a dosage change sooner than 6-8 weeks, which is how long it takes your body to stabilise. I think 2 grains of Armour is a crazy high dose for your circumstances-- after many, many years of Hashimoto's that went untreated for far too long, I have essentially no working thyroid left and I'm on 1.5 grains plus 25 mcg of levothyroxine. I can't imagine you're not hyper or verging on hyper on such a big dose so soon.

2. Why are you taking half of it at night? Unlike levothyroxine, which is inactive T4, the active T3 in Armour will almost certainly interfere with your sleep. I take 1 grain first thing in the morning, 1/2 grain around 4 pm and the levo at bedtime.

3. DHEA essentially converts to something like testosterone in your body - I think it's fine to take if carefully monitored, but if you're sensitive to hormones, keep an eye out for that.

I also take both magnesium and Melatonin before bed. The Melatonin is prescription here, so usually that, but I like the Natrol time release too. I find 1 mg makes a difference in the quality of my sleep.

I think I asked previously, but can't remember- have you been tested for Lyme Disease?

 

[ame]

If your insurance refuses to pay for brand-name Synthroid, but levothyroxine is just not doing the trick, your Pharmacy can submit the rejection from the insurance company to your doctor’s office and request what is called a prior authorization for Brand necessary medication, based upon medical necessity.
There is no guarantee that the insurance company will approve the prior authorization given by your physician, but it is possible that with a physicians request for medical necessity, your insurance company will approve brand Synthroid in order for you to try to improve your thyroid function. Levothyroxine is the generic form of Synthroid, and is chemically close to the namebrand Synthroid, but it is not exact. Some patients just do better on Synthroid than they do on the generic form.
I just thought you should know that there is a possibility that you may be able to get around that loophole.

IME the price isn't much different anyway, but I've always been told by the pharmacy and my doctor that the body will process them differently in some people. Just because there's a rule about how much of the "active" has to be in the generic to qualify, doesn't mean every batch is the same. The brand name is pretty strictly monitored though.

I want to reiterate something I said early on. When I say Iodine in the sense of how Dr. Brownstien (and Dr. Abraham) use it (and I take it), I am actually talking about a combination of iodine and iodide. Just wanted to make that clear.

I also want to address fears of having an allergic reaction. Per Dr. Brownstien, who has treated thousands of patients, I quote from his book.

"In my experience, an allergy to inorganic iodine/iodide is a rare occurrence. An allergy to radioactive iodine dye, commonly used in many medical imaging procedures, does not guarantee that there is an allergy to inorganic iodine/iodide-such as in Lugol's or tableted Lugol's. In fact, my experience has shown that it is a rare occurrence to have an allergy to inorganic iodine/iodide. During twenty years of practice, I have seen 3 patients with an allergy to inorganic, non-radioactive iodine."


Amy, yes, we are sweltering indeed! And I never would have known you were anything but a normal baby.

Let me introduce him to patient 4, then.

Thanks @ame. Your post made me laugh. You are so not a freak but I totally get how you are feeling. Honestly I feel like a freak sometimes because of all my medical issues. I feel like what the heck is wrong with me and why oh why can't I be just "normal". Right now I would give so much just to be "normal" with health issues. I don't talk about this IRL because I know so many people would be rolling their eyes thinking oh yeah she's allergic/sensitive to gluten etc. Sometimes I just want to hide away from everyone because I don't want to deal with people thinking I am making stuff up or being a prima donna etc. And while I realize it's none of my business what others think of me () and I truly believe that it is hard to live it if you kwim. But yeah I am shrugging negative people off and embracing those who accept me for me and don't think I am being "difficult". And also not talking about this IRL except with my very closest friends who get it and love me for who I am and not who they want me to be. If that makes sense.

Anyway all this to say I appreciate your input and sorry you went through all this and how lucky your mom is there for you and helped you navigate the way though I am also sorry she went through all this. Hoping everyone is doing well now and thank you again.

For us, this is "normal." Every day of my existence she's been dealing with it but had a background from dealing with it for herself. We just have to stay on top of it and make sure we're seeing doctors that pay attention

 

[jaaron]

Recently, at least in the past 10 years, our physicians have, inadvertently, discovered that a lot of thyroid patients experience IBS or G.I. irregularities or issues that eventually develop into celiac disease. While celiac disease is usually a genetic disease, or hereditary, many of our thyroid patients have been tested for celiac disease, after complaining for quite some time about unresolved Gastro intestinal problems. Nine times out of 10 they test positive for celiac disease. The most common way of testing for this is tissue transglutaminase antibody. Just something that I would throw out there just in case any of you have, at some point, experienced unresolved Gastro intestinal problems that you would like to have further examined.

Getting back to the subject of testing blood work levels: anyone whose physician is testing a “reverse T3” needs to go back to medical school and fast forward to the year 2018; this test is so Neanderthal, it’s no longer considered to be valid by the majority in the medical profession in First World Countries. It’s extremely inaccurate, and means nothing in reference to any of the other lab results.

Thank you for weighing in Matthews1127. Yes, Celiac is one of many autoimmune diseases that autoimmune thyroid patients are more likely to develop than the average person on the street. I do just want to add that my understanding is that because tTg-IgA test has a very high rate of false positives, a tissue biopsy is necessary for conclusive diagnosis of Celiac. Some people find that eating gluten free does help symptoms, but some (like me) find it makes no difference at all, and I tested positive on the antibodies, negative on biopsy, which explains it.

I'm also interested in what you're saying about RT3 - My understanding is that its an important test, as part of a full panel as too high a level has the potential to interfere with absorption of the necessary amount of active T3 by having too high an uptake with the receptor cells, and too low a level can cause an overabundance of active T3 by giving it unfiltered access to receptor cells. I'd love to know it if you have different information. Thanks.

 

[Matthews1127]

Thank you for weighing in Matthews1127. Yes, Celiac is one of many autoimmune diseases that autoimmune thyroid patients are more likely to develop than the average person on the street. I do just want to add that my understanding is that because tTg-IgA test has a very high rate of false positives, a tissue biopsy is necessary for conclusive diagnosis of Celiac. Some people find that eating gluten free does help symptoms, but some (like me) find it makes no difference at all, and I tested positive on the antibodies, negative on biopsy, which explains it.

I'm also interested in what you're saying about RT3 - My understanding is that its an important test, as part of a full panel as too high a level has the potential to interfere with absorption of the necessary amount of active T3 by having too high an uptake with the receptor cells, and too low a level can cause an overabundance of active T3 by giving it unfiltered access to receptor cells. I'd love to know it if you have different information. Thanks.

Free T3, and Free T4 values are far more accurate than RT3. If anyone insists upon using RT3 values to evaluate thyroid function, the Free T3 & Free T4 values must also be included, in conjunction with the TSH.