Hypothyroidism

[123glldd]

I had blood test with negative antibodies for thyroid disorder and yet my levels were off...I COULD have hashimotos still as i've never had a biopsy but...as of now it seems I don't. Has anyone ever been diagnosed hypothyroid and actually had it heal after going gluten free or addressing something like estrogen dominance with progesterone treatment? I'm just curious as I have someone telling me now that they have never ever seen anyone heal. But I've heard some supposedly who have. I know hashimotos is lifelong but so far I don't seem to have that.

[mamaw]

for me your post is confusing... I myself have never heard of doing a biospy for Hashimotos......thyroid disease can be controlled with proper medication, is that what you mean by saying "heal"

Are you getting celiac & thyroid issues confused? Doctors do biospys for celiac disease........

[123glldd]

I found out that you can't know "for sure" that you have autoimmune thyroid issues unless you get a tissue biopsy from the thyroid. Because for some it doesn't show up in blood tests..like celiacs. I am on a gluten free diet now. I wasn't at the time I was diagnosed hypothyroid. By heal i mean if you are not on meds yet...and you are not severely hypo...is it possible your thyroid will go back to normal if you quite gluten or treat any number of the causes that exist aside from autoimmune thyroiditis..like too little iodine or estrogen dominance etc which can both cause hypothyroidism as well. 90% of thyroid cases are autoimmune but not all. So far it seems i don't have it...what I was saying is i MIGHT but i've never had a needle biopsy done of my thyroid. As for gluten testing I am waiting for results of a stool test but I know i feel better off gluten so...

[mamaw]

thanks for explaining...I do not know of anyone personally who has went gluten-free, had thyroid issues &once gluten-free didn't still have thyroid issues as before gluten-free...

We can control autoimmume disease to a point but no cures to my knowledge...

Hope someone elsee will be able to answer your question....

[Gemini]

I found out that you can't know "for sure" that you have autoimmune thyroid issues unless you get a tissue biopsy from the thyroid. Because for some it doesn't show up in blood tests..like celiacs. I am on a gluten free diet now. I wasn't at the time I was diagnosed hypothyroid. By heal i mean if you are not on meds yet...and you are not severely hypo...is it possible your thyroid will go back to normal if you quite gluten or treat any number of the causes that exist aside from autoimmune thyroiditis..like too little iodine or estrogen dominance etc which can both cause hypothyroidism as well. 90% of thyroid cases are autoimmune but not all. So far it seems i don't have it...what I was saying is i MIGHT but i've never had a needle biopsy done of my thyroid. As for gluten testing I am waiting for results of a stool test but I know i feel better off gluten so...

Wendybird......I have had Hashi's for 20 years and am pretty well versed on the subject. Not an expert but I know and have seen a lot.

Yes, you can have Hashi's brewing and I think it will not start showing in blood work for awhile. You can have symptoms and not have it show in your blood work, in the beginning. Once it starts to really attack the thyroid, your numbers will start to go up but it is possible to have Hashi's, in the early stages, and it will not show in blood work. Kind of weird but that's how autoimmune diseases work.

Look at Celiac! You can have a flaming case of it and negative blood work. I have found the one truth of AI diseases is that current testing by the AMA is not all that great. Testing is limited and seems to show the advanced cases and not the people who have just triggered.

I have never heard of estrogen dominance causing hypothyroid. Most women become estrogen dominant as they enter menopause because progesterone is the first hormone to dump when true menopause has started. Then your estrogen levels drop. I am post menopausal

myself by 8 years and have had no problems maintaining thyroid levels post menopause.

As for healing the thyroid, the jury is out on that. My thyroid TPO antibodies were 1200 the year before I was diagnosed with celiac disease. Normal is under 40 so you can see how much damage I had. I have never been able to stop taking thyroid hormone but I have no issue with that. It's not medication you are taking but hormone replacement therapy. I take a natural thyoid hormone with both T3 and T4. I was able to bring my TPO antibody levels down to the normal range but it took 6 years of being gluten-free to do that. That doesn't mean I am cured but my thyroid is no longer under attack by my AI system. The existing damage is permanent.

I think if you have not triggered for Hashi's but your thyroid is a little low, there is the possibility that you can heal. But for true Hashi's, I doubt it. Once you have triggered, I know of no one who can untrigger an AI disease. You can manage them well, but not cure them. I have never had a biopsy either because I refuse to see an endocrinologist. I see a functional medicine MD who has done wonders at getting me back on track. I was super positive in my blood work so never felt the need for a biopsy. Plus, no one is sticking a needle in my neck!

I would also include symptoms in your diagnosis...... that is the old way of doing things and the doctors today will not treat unless your numbers are tanked.....bad idea. Do you have many symptoms of hypothyoid? If you do, you need to treat them. This is what helps to keep your thyroid from getting really bad and why so many women walk around cold, tired and unable to lose weight. You really have to fight for good medical care today and it's only going to get worse if the government gets involved. My thyroid did not get better until I went gluten-free and then it took awhile for me to start to absorb the meds correctly. Be patient and yes, I hate that word too! Improvement can take awhile.

[123glldd]

Alas I do have symptoms like slowed down metabolism and feeling cold and sluggish with foggy brain but it seems it could be my adrenals as well..which are also low..and possibly gluten as i only recently went gluten free. So since my bloodwork for hashi's was negative...i'm still thinking I could have it as 90% of people hypothyroid do..but...i've known many young women who had to go on progesterone cream for estrogen dominance so I feel like for my own peace of mind i want to handle one or two things at a time here to make sure i actually do have autoimmune thyroid problems and that i'm not part of that other 10%. Because I went through a long period of high stress and my hormones are not super low it makes me feel that sluggish adrenals could be effecting how well my thyroid works...as my body doesn't have the energy to support it etc. So we'll see i guess. I was just curious as I've heard, like you, some mixed ideas on it. Some seem to say they got better and some say never because they have autoimmune. I'm pretty sure once you have hashi's that's it..you have it. you can lessen the damage but it's there. The other 10% of people without autoimmune but some other version of hypothyroid...that, i'm curious about.

[user853]

Wendybird - I have had "hypothyroidism" for 13+ years. When originally dx, and I think a few other times along the years, I have had the antibody test it always showed no hashimoto. Last year, when I started having neurological symptoms (2.5 years into permanent surgical menopause with NO hormone replacement) my antibodies were tested again and they were off the charts. I was told a biopsy was not needed to confirm because my thyroid ultrasound showed no nodules.

Turns out my neurological symptoms seem to be from celiac. So, definately no on the extrogen domonance, but perhaps the hashimoto's was kicked up by the celiac.. or something...

[123glldd]

Wendybird - I have had "hypothyroidism" for 13+ years. When originally dx, and I think a few other times along the years, I have had the antibody test it always showed no hashimoto. Last year, when I started having neurological symptoms (2.5 years into permanent surgical menopause with NO hormone replacement) my antibodies were tested again and they were off the charts. I was told a biopsy was not needed to confirm because my thyroid ultrasound showed no nodules.

Turns out my neurological symptoms seem to be from celiac. So, definately no on the extrogen domonance, but perhaps the hashimoto's was kicked up by the celiac.. or something...

Very interesting. I too, had an ultrasound. Mine said "no suspicious nodules". Not sure if that means none or just none that looked cancerous. I kinda wonder if I've been gluten intolerant my whole life due to irritable bowel problems up through my childhood and teens. Past few years I've noticed a kind of tissuey film on the outside of my stool when i use the washroom. not a lot but a little..floating in the water. I wouldn't doubt it if i DID have hashimotos..probably brought on by gluten intolerance. But i really don't know for sure unfortunately.

[pricklypear1971]

Well, you may never know, or only know in time.

If your thyroid is under active, you will supplement - whether it's Hashis or not. If you're going gluten-free anyway - you're gluten-free (in case it's Hashis).

Just keep testing.

If you are opposed to hormone treatment supplament with other things like selenium, etc. (get the thyroid books out and start picking). If you don't respond move on to hormone treatment.

The biggest difference I've seen is that Hashis tend to NOT do well on iodine whereas other hypos may benefit. But you can try it and see (that's what they advise anyway).

Being hypo seems to correspond to adrenal issues - hard to paraphrase it but they are codependent and you have to incrementally improve one and let the other catch up/or improve both at the same time.

Anyway, my advice is to not beat it to death now. Antibody levels and tsh both fluctuate. Keep testing?

Yes, some people (not Hashis) are temporarily hypo. But you'll never know up front....I think you just have to treat it and see what happens (even if you don't use thyroid hormone supplaments and use herbal/mineral/vitamin).

I use progrstetone cream. I tried estrogen/progesterone combo and it didn't go well. But then again, I probably have endometriosis so estrogen shouldn't be used. I also tried a very low dose DHA/progenolone supplament. I mean extremely low - and it seems to help my energy and clarity (my cortisol levels are off).

[123glldd]

Well, you may never know, or only know in time.

If your thyroid is under active, you will supplement - whether it's Hashis or not. If you're going gluten-free anyway - you're gluten-free (in case it's Hashis).

Just keep testing.

If you are opposed to hormone treatment supplament with other things like selenium, etc. (get the thyroid books out and start picking). If you don't respond move on to hormone treatment.

The biggest difference I've seen is that Hashis tend to NOT do well on iodine whereas other hypos may benefit. But you can try it and see (that's what they advise anyway).

Being hypo seems to correspond to adrenal issues - hard to paraphrase it but they are codependent and you have to incrementally improve one and let the other catch up/or improve both at the same time.

Anyway, my advice is to not beat it to death now. Antibody levels and tsh both fluctuate. Keep testing?

Yes, some people (not Hashis) are temporarily hypo. But you'll never know up front....I think you just have to treat it and see what happens (even if you don't use thyroid hormone supplaments and use herbal/mineral/vitamin).

I use progrstetone cream. I tried estrogen/progesterone combo and it didn't go well. But then again, I probably have endometriosis so estrogen shouldn't be used. I also tried a very low dose DHA/progenolone supplament. I mean extremely low - and it seems to help my energy and clarity (my cortisol levels are off).

*nods* that's what I am currently trying..to bring up adrenals...if i have estrogen dominance i'm going on progesterone only..i don't want to deal with estrogen at all that scares me too much. I am also looking into iron etc

[GF Lover]

Hi there. I have had hashimotos for around twenty years. Going gluten free has no confirmed connection to the start of thyroid conditions, although many celiac also have thyroid conditions. When there is enough damage done to the thyroid it will then show in a blood test. Also having a nodule does not mean the levels will go up or down. Once damage is done it is done. There is never the necessity to biopsy for a thyroid condition. I think your confusion comes from having a nodule on the thyroid. This requires an ultrasound and if necessary a needle biopsy to confirm the type. I know this because I have them and get an ultrasound every six months. Also, you do not have to have thyroid disease to have nodules. If you are still concerned about your adrenal glands, there is a autoimmune condition called Addison disease. Like thyroid disease, this one attacks the adrenal glands. My concern for you is that you may be taking second hand advice as the researched truth. If you have these conditions it will come out in blood tests at some point.

[Aurine]

Hi there. I am really new here but really wanted to share with you some links that I found, which I hope you find helpful.

I have Hashimoto's, and am now Gluten and Lactose intolerent. Looking back and really thinking about it, Im not sure now which came first as I have been unwell for some time. Knowledge is so important though, and I don't think we can really ever know enough. Also everyone is so unique so what works for some, may not work for others.

Open Original Shared Link

Open Original Shared Link

The first gives info on the link between Hashimotos and Gluten intolerence, and the second is a very informative site of Adrenal fatigue.

I hope you feel better soon. Cath

[T.H.]

My father was diagnosed with hypothyroidism and later found to have celiac disease.

When I was diagnosed as a celiac, my thyroid numbers had more than tripled in the three years previous, and the docs were looking at diagnosing me with hypothyroidism, too.

After the diagnosis and after becoming very strict on my gluten-free diet, within 6 months my thyroid numbers went down to normal again (I had my thyroid tested at the same time as my celiac blood test, when it was still going up, and twice more after diagnosis. It didn't start to go down until the second testing.)

So I wasn't diagnosed with hypothyroidism, so I never started medication, but the celiac disease seemed to have some kind of affect on my thyroid.

[GFinDC]

I am not a good one about going to the doctor and getting my numbers checked. I do have a couple thyroid nodules and a cyst. Thyroid nodules are not unusual and really are more of the norm than the exception. And most of the time they are benign. I did get an FNA (fine needle aspiration) on one nodule. No problem, didn't really hurt. The doc told me he uses a smaller needle than most docs so it doesn't hurt.

Anyway, I had my thyroid numbers checked several times and they were always ok per the docs. But I started taking glandular thyroid anyway to see if it would help me. And it did. So I take it every week now, not every day but at least every other day. I tried stopping it but my joints would start hurting after a while, and stopped hurting when I started it again.

I take Natural Sources raw thyroid. It's available at several places on line. My sister tried it but she stopped because she said it made her heart race. It doesn't do that to me though.

[1974girl]

This exact question is what caused my daughter to be diagnosed with celiac. Her antibodies are off the chart. Supposed to be below 35 and she was 2800. She has been on meds for 4 years that control the hormones and her blood work for her levels are normal. However, her antibodies are still ragingly attacking her thryoid. I asked the pediatrician if going gluten free would help that. (I had read that) The doctor said, "You don't want to do that unless she has celiac. It is a very hard diet to maintain. But since they go together, I'll test her." And voila....the blood test showed celiac and so did the biopsy. No celiac symptoms whatsoever. They even tested her for celiac 4 years ago but it was negative. So she had hashis first. We just had repeat blood work done after 5 months of gluten free. Her levels went UP! She is now 2900. So going gluten free has not helped her in 5 months. I am hoping that in the long run, they will go down but right now...they won't. I had read that they would go to normal in 6 months but not for us.

[BumbleBee91]

I was diagnosed with ceoliac before hashimotos but when I look back on my bloodwork I really had Hashimotos at the same time. My antibody levels are >13000u/ml (meant to be less than 60). My thyroid levels are now completely within normal levels after being mostly gluten-free but the doctor says at some stage my levels will decline and I'll need meds. He said some people have Hashimotos and will stay stable all their life but due to my antibodies being so high he thinks I'll definitely be one of the ones to go downhill.

[GFinDC]

You could ask your doctor about immune suppressants. They can have bad affects if taken long term but they might help cool things down in the short term. Just a thought, I don't know if they would help the Hashimoto's long term or not.

[1974girl]

How long did it take you to get your antibodies back down to normal after going gluten free? My daughters actually went up after 6 months. Not much but still up. Someone else here said 6 years before theirs were normal. I just hope they go down period. I want to prove to the pediatrician that gluten free helps. She is still skeptical.

[Gemini]

This exact question is what caused my daughter to be diagnosed with celiac. Her antibodies are off the chart. Supposed to be below 35 and she was 2800. She has been on meds for 4 years that control the hormones and her blood work for her levels are normal. However, her antibodies are still ragingly attacking her thryoid. I asked the pediatrician if going gluten free would help that. (I had read that) The doctor said, "You don't want to do that unless she has celiac. It is a very hard diet to maintain. But since they go together, I'll test her." And voila....the blood test showed celiac and so did the biopsy. No celiac symptoms whatsoever. They even tested her for celiac 4 years ago but it was negative. So she had hashis first. We just had repeat blood work done after 5 months of gluten free. Her levels went UP! She is now 2900. So going gluten free has not helped her in 5 months. I am hoping that in the long run, they will go down but right now...they won't. I had read that they would go to normal in 6 months but not for us.

This is the kind of stuff that makes me wonder why anyone listens to doctors......the reason your daughter has high antibodies is because of gluten ingestion. This is why I know she had Celiac first, not Hashi's. My antibodies were off the charts also and never came down until I went strictly gluten free......and that took another 6 years. Antibodies only stay high if the aggravating factor to the thyroid is still present, which is gluten. The fact that her antibodies were that high consistently means your doctor missed her Celiac diagnosis, big time. AMA physicians only believe blood work, they see nothing else as far as symptoms. Most people who believe they are asymptomatic are really not.....they just do not realize how far reaching symptoms can be. Children sometimes present with atypical symptoms also. It is not normal at all for a 7 year old to develop Hashi's with thyroid antibodies that high....there is a root cause. This is the type of treatment that is common today. Her antibodies will come down, eventually, but stop believing what these people are telling you. People are different and you never know how long it will take for them to come down. Gluten ingestion will directly affect her thyroid so be strict with the diet.

As far as any doctor saying the diet should only be considered for Celiac and that it's a hard diet to maintain.....that's a crock, if ever I heard one. There is a learning curve but at no time have I ever considered this diet hard to maintain. You somewhat lose convenience but there is plenty to eat on this diet that would satisfy even a child. Remember that it's your

perception and attitude towards this diet that will have the biggest impact on your daughter.

I have a fabulous recipe for peanut butter cookies if you want it..... There isn't much that I haven't been able to make gluten free and have it taste just as good. This is a much easier time to be gluten free!

[1974girl]

The very first appointment with the endo, she had her tested for celiac. I have never even heard of it. So I know that endo suspected something but dismissed it when the blood work was fine. They never even told me to try gluten free. I am being very strict but it makes me wonder since they are not going down! I dont' want to wait 6 years. I want to snap my fingers and make them go down NOW! I hope they go down so I can show the pediatrician that it works. Thanks for telling your story.

[Gemini]

The very first appointment with the endo, she had her tested for celiac. I have never even heard of it. So I know that endo suspected something but dismissed it when the blood work was fine. They never even told me to try gluten free. I am being very strict but it makes me wonder since they are not going down! I dont' want to wait 6 years. I want to snap my fingers and make them go down NOW! I hope they go down so I can show the pediatrician that it works. Thanks for telling your story.

Yes, I know you want your daughter healed right away but relax.....she will heal fine but it will take time. The AMA have made you fearful and they are very good at that. I was 46 at time of diagnosis and I had Celiac symptoms for most of my entire life and they missed it. That is very common for blood work to come back negative in many people and then the doctors will dismiss it.

They ignore a lot of things that other Celiac's see. I healed well but it did take time. I was not sick the entire time but to get numbers back into the normal range takes time. It may not take 6 years for your daughter to heal as she is young but if it does, don't sweat it. She'll lead a normal life! The important thing is that you are on the right track now.

[123glldd]

Hmm my antibodies were all normal...and...i had an ultrasound..all the doctor told me was "no suspicious nodules found". Dunno if that means no nodules or just none to make them think cancer?