How Do Other Autoimmune Diseases Affect Recovery Time?

[nvsmom]

I was diagnosed with celiac about 2 months ago and have been gluten-free the entire time except for 2 accidents. I've noticed improvements in some areas of my health like less bloating and evening bloat pain, fewer migraines, lost 10+lbs, less stomach aches, and my skin has cleared a bit BUT I didn't feel remarkably better. Granted I didn't feel sick before, it was just a feeling that I should feel better than I did ... and that all those stoamch aches was just me; I chalked it up to aging, three kids, and lack of exercise.

When I was first diagnosed as celiac, my doc ran tests to check my vits and such, and also checked my thyroid. It turns out my thyroid isn't working well so my thyrois stimulating hormones was high, my free T4's (main thyroid hormone) was in the low normal range, and I have high thyroid antibodies.... which I'm interpreting to mean Hashimoto's disease even if my doctor won't put a label on this yet.

So... hypothyroidism would explain why I don't feel much better yet, and it will take months to get the thyroid meds right. Chances are I have adrenal fatigue too after living with (possibly) a couple of untreated autoimmune diseases for a few years or decades...

Basically, I'm worried about how long it will take to actually feel good with all this going on. That seems a bit ironic considering that a few months ago I didn't know I was sick, I just wasn't quite right, but now that I know I could feel better? Oh I want it! And I want to feel well soon!

Anybody have similar circumstances that can give me an idea of how long it take to straighten out an unknowing life-long celiac who happens to have a thyroid that is shutting down? If I could know that in 6 months or a year that things will be looking up, I'll be happy.

Any advice or wisdom is welcome.

[pricklypear1971]

I'm at 13 months gluten-free. I felt a dramatic change at 10 months. I've been working out hard-core for 4 weeks.

My tsh was always clinically (blood work) well controlled with t4/t3 cbo therapy until going gluten-free - then around 8 months it all went nuts - blood work that is. I'm due for another round of bloods this week - we'll see. My ND's theory was that I had an AI flare from the flu (I was weird in every way after that flu - took forever to get over and a spot of eczema developed on my finger - which is AI)...and that was part of what made the blood work crazy.

Anyway, I can tell you the first year is a roller coaster. At the end of year 1 I can say that my thyroid symptoms (Celiac and thyroid overlap quite a bit symptomatically) dominate day to day - unless I get glutened - and that sucks for a while.

I guess for me thyroid is just tougher to overcome, or maybe my fatigue is still from vitamin malabsorption - who knows... Exercise helps a lot as long as I don't push too hard.

I probably haven't helped much, but I can say that we each walk our own paths re: AI. The best advice I have is to read a lot...and write down how you feel and eventually it will fall in place,

[nvsmom]

Thanks PricklyPear. I think writing it all down is a good idea. I think I'll start a journal this week so I can keep it all straight. As you said, the symptoms overlap quite a bit so when (what I thought was celiac) symptoms disn't start clearing up after a month, I was a bit disappointed. Actually I was rather surprised when all of my vitamin levels came back good, if not on the great end of things. I was almost disappointed when my B12 and iron levels were so good because I thought low levels would explain my sluggishness... I prefer to think of it as inertia. lol

I'm guessing that the hypothyroidism will dominate my symptoms too. At least celiac can be controlled with diet. It almost seems like an easy fix after looking into thyroid problems; I just need to remove some foods and my body will stop attcking my gut. With Hashi's... I haven't found any way to stop my body from killing my thyroid unless it was celiac induced, and then it could stop or slow after I've been gluten-free for a while... maybe.

I'll try to take it day by day. I could be much worse off, so I'm trying to count my blessings.

As my favorite fortune cookie stated:

Acceptance is the key to happiness.

[pricklypear1971]

Thanks PricklyPear. I think writing it all down is a good idea. I think I'll start a journal this week so I can keep it all straight. As you said, the symptoms overlap quite a bit so when (what I thought was celiac) symptoms disn't start clearing up after a month, I was a bit disappointed. Actually I was rather surprised when all of my vitamin levels came back good, if not on the great end of things. I was almost disappointed when my B12 and iron levels were so good because I thought low levels would explain my sluggishness... I prefer to think of it as inertia. lol

I'm guessing that the hypothyroidism will dominate my symptoms too. At least celiac can be controlled with diet. It almost seems like an easy fix after looking into thyroid problems; I just need to remove some foods and my body will stop attcking my gut. With Hashi's... I haven't found any way to stop my body from killing my thyroid unless it was celiac induced, and then it could stop or slow after I've been gluten-free for a while... maybe.

I'll try to take it day by day. I could be much worse off, so I'm trying to count my blessings.

As my favorite fortune cookie stated:

Acceptance is the key to happiness.

Did they run all iron levels - circulating, ferritin, etc.? Did they run d3?

It takes a while for both Hashis and Celiac - healing. You'll know when you hit tipping points.

I'd suggest checking out some of the more popular thyroid self-help books from the library. Peruse Amazon for ideas. Reading will help you figure out if your doctor is treating your thyroid symptoms and listening to you, and may help you find solutions your doc would never suggest.

[beebs]

I don't feel remarkably better either. I have at least 3 autoimmune disease and going while gluten free has stopped some scary symptoms. But I still get flares with one of the other AIs - so still go through periods of feeling ugh!

[nvsmom]

Did they run all iron levels - circulating, ferritin, etc.? Did they run d3?

It takes a while for both Hashis and Celiac - healing. You'll know when you hit tipping points.

I'd suggest checking out some of the more popular thyroid self-help books from the library. Peruse Amazon for ideas. Reading will help you figure out if your doctor is treating your thyroid symptoms and listening to you, and may help you find solutions your doc would never suggest.

My doctor was reluctant to run too many tests; I had to pester him for what he did run. He said the hematology would show deficiencies. He did run Serum Folate (41.7 with a reference range greater than 12.1) and Vitamin D 25-Hydroxy (106.0 with reference range of 80.0-200.0). All my tests were in normal range except B12 which was high (898 with ref range 155-700), and my low triglycerides (0.47 with ref range 0.60-2.30)... I take a LOT of suppliments and eat fairly well. According to those tests, I should be a picture of health.

My abnormal TSH tests were 13.42 and 14.27 mIU/L with ref range 0.20-6.00. I mentioned to the doc that the reference range was considered outdated in the US (I'm in western Canada) where 0.30-2.50 was now considered normal, and he said they use different standards of measurement and how all labs have different reference ranges. This was after I said I wanted to get my TSH closer to 1 and he said I don't want to get too low because I'd be hyper thyroid so I pointed out that the low range is 0.20... I think he said "we'll see". I didn't have my notes with me (oops) so I wasn't confident enough to argue... wish I had.

My free T4 was 11.6 pmol/L with a ref range of 10.0-25.0. Low but not out of range.

Thyroid Peroxidase Antibodies were 33.8 kIU/L with ref range 0.0-34.0. On the upper limit of normal.

He started me on 25 (mcg?) per day of synthroid, which was the lowest dose. I asked about adding T3 and he hummed and ha'ed and said wait 6 weeks to see how I feel. BUT I did notice that he added T3 to my next round of blood work. LOL

I asked if he was putting me on synthetic or natural and he said synthetic because the natural "is made from animals" (in a shocked voice). Yeah, pigs... I eat them pretty regularly. I think getting natural or T3 from him (if I need it) will be a battle. And it's not easy to find new doctors up here so I'll probably stay with him. We don't have to pay out of pocket to see a doc or have a test but there aren't enough docs or labs to go around so wait times are awful. I'd say about 1/3 of people I know don't have a family doctor. Getting in to see an endo will be almost impossible, or have a 1 year wait.

I am doing lots of reading and research so I can have a say in my treatment.... If you have any good book suggestions, I'd love to read them.

And thanks again.

[nvsmom]

I don't feel remarkably better either. I have at least 3 autoimmune disease and going while gluten free has stopped some scary symptoms. But I still get flares with one of the other AIs - so still go through periods of feeling ugh!

Let's hope that "three times the charm" and no more AI diseases will pop up.

[beachbirdie]

My doctor was reluctant to run too many tests; I had to pester him for what he did run. He said the hematology would show deficiencies. He did run Serum Folate (41.7 with a reference range greater than 12.1) and Vitamin D 25-Hydroxy (106.0 with reference range of 80.0-200.0). All my tests were in normal range except B12 which was high (898 with ref range 155-700), and my low triglycerides (0.47 with ref range 0.60-2.30)... I take a LOT of suppliments and eat fairly well. According to those tests, I should be a picture of health.

My abnormal TSH tests were 13.42 and 14.27 mIU/L with ref range 0.20-6.00. I mentioned to the doc that the reference range was considered outdated in the US (I'm in western Canada) where 0.30-2.50 was now considered normal, and he said they use different standards of measurement and how all labs have different reference ranges. This was after I said I wanted to get my TSH closer to 1 and he said I don't want to get too low because I'd be hyper thyroid so I pointed out that the low range is 0.20... I think he said "we'll see". I didn't have my notes with me (oops) so I wasn't confident enough to argue... wish I had.

My free T4 was 11.6 pmol/L with a ref range of 10.0-25.0. Low but not out of range.

Thyroid Peroxidase Antibodies were 33.8 kIU/L with ref range 0.0-34.0. On the upper limit of normal.

He started me on 25 (mcg?) per day of synthroid, which was the lowest dose. I asked about adding T3 and he hummed and ha'ed and said wait 6 weeks to see how I feel. BUT I did notice that he added T3 to my next round of blood work. LOL

I asked if he was putting me on synthetic or natural and he said synthetic because the natural "is made from animals" (in a shocked voice). Yeah, pigs... I eat them pretty regularly. I think getting natural or T3 from him (if I need it) will be a battle. And it's not easy to find new doctors up here so I'll probably stay with him. We don't have to pay out of pocket to see a doc or have a test but there aren't enough docs or labs to go around so wait times are awful. I'd say about 1/3 of people I know don't have a family doctor. Getting in to see an endo will be almost impossible, or have a 1 year wait.

I am doing lots of reading and research so I can have a say in my treatment.... If you have any good book suggestions, I'd love to read them.

And thanks again.

Many doctors confuse the natural thyroid meds like Erfa/Armour/Naturethroid with the glandulars available as nutritional supplements. For some reason they think that you don't get even dosages of hormone from the naturals. That is incorrect. The naturals are as well-controlled as the synthetics.

That said, many people can get their thyroid levels to a good place using synthetic T4 meds like Synthroid, as well as combining synthetic T4 with synthetic T3. Takes some work. That doesn't work for everyone!

Docs are also scared of low TSH because they are taught that a low TSH automatically means you are hyperthyroid. That is only true in the case of people seeking an initial diagnosis. Once meds are introduced into the system, TSH becomes undependable as a measure of thyroid function. I feel best when my TSH is suppressed, I take a combo of natural and synthetic (Armour and Unithroid). My Free T4 and Free T3 are always around the mid-range, which is absolutely fine for me. I would be unable to function at life with a TSH over 5, in fact I feel it if I get up over 3!

Make sure that if your doc is checking your T4 and T3, he is doing FREE levels, not TOTAL levels. Totals don't tell you anything useful.

[nvsmom]

Many doctors confuse the natural thyroid meds like Erfa/Armour/Naturethroid with the glandulars available as nutritional supplements. For some reason they think that you don't get even dosages of hormone from the naturals. That is incorrect. The naturals are as well-controlled as the synthetics.

That said, many people can get their thyroid levels to a good place using synthetic T4 meds like Synthroid, as well as combining synthetic T4 with synthetic T3. Takes some work. That doesn't work for everyone!

Docs are also scared of low TSH because they are taught that a low TSH automatically means you are hyperthyroid. That is only true in the case of people seeking an initial diagnosis. Once meds are introduced into the system, TSH becomes undependable as a measure of thyroid function. I feel best when my TSH is suppressed, I take a combo of natural and synthetic (Armour and Unithroid). My Free T4 and Free T3 are always around the mid-range, which is absolutely fine for me. I would be unable to function at life with a TSH over 5, in fact I feel it if I get up over 3!

Make sure that if your doc is checking your T4 and T3, he is doing FREE levels, not TOTAL levels. Totals don't tell you anything useful.

Thanks Beachbirdie.

We're starting with a low T4 and I guess we wait and see how the labs adjust... and how I feel after 6 weeks. The pharmacy and doctor told me I might start feeling better in a week. That surprised me since I thought it took longer. I actually feel worse today but I think it's a flu coming on because I am shivery, cold and achey... and worn out feeling. I wonder if I'll feel it in spite of getting sick? hmmm.

I'll remember that about the totals and TSH relevance now that I'm on meds... Do doctors realize that TSH isn't that useful? Mine talked about getting my TSH back into normal range; I got the impression that if he gets it to 5.5 he'll be satisfied.

[pricklypear1971]

I've been on thyroid therapy a while now...

And since I've been gluten-free for one year now, I see distinct improvements (getting rid of that rash was a huge bonus, ya think?) but am still left with some oddball symptoms...which I don't think are gluten I think are thyroid.

I am at the point now of pursuing other ideas - like low tissue thyroid levels, and reverse t3 resistance. I need to go grab my upcoming lab sheet (sure its in the mailbox) and see what she put on the order and add what else I need.

Above said.... I noticed a decrease in brain fog going gluten-free. And an increase in stamina. But as it goes with Hashis - it can come and go... and obviously I've had an AI (thyroid?) type flare within the year (my TSH skyrocketed to 8 and it's NEVER been 8)...and at this point I'm diving deeper and willing to do some oddball stuff to conquer the remaining problems.

****And just an encouraging note - my "word recall" skyrocketed the first week being on thyroid supplements. I really hated that... and guess what I've been noticing the last few months...decreased "word recall". Something isn't right, and it isn't gluten...

As far as reading material goes - try the About.com forums. Seriously. I have a Mary Shomon book and she moderates the forums. They publish articles and hi-light new research. I'm rather behind on my thyroid research and news, I admit, having spent recent years working on The Stupid Rash from Hell and gluten. But I digress... read through the forums and you'll see books and authors mentioned. I've given up knowing what is a "good book" til I get my hands on it. I can read an interview of a doctor and s/he sounds great, then the book is terrible. That's why I recommend the library. Just go and grab everything and see what resonates.

[beachbirdie]

Thanks Beachbirdie.

We're starting with a low T4 and I guess we wait and see how the labs adjust... and how I feel after 6 weeks. The pharmacy and doctor told me I might start feeling better in a week. That surprised me since I thought it took longer. I actually feel worse today but I think it's a flu coming on because I am shivery, cold and achey... and worn out feeling. I wonder if I'll feel it in spite of getting sick? hmmm.

I'll remember that about the totals and TSH relevance now that I'm on meds... Do doctors realize that TSH isn't that useful? Mine talked about getting my TSH back into normal range; I got the impression that if he gets it to 5.5 he'll be satisfied.

Nope, docs are taught that TSH is everything when it comes to thyroid treatment. Far too few are able to think "outside the box", far too few treat symptoms, instead they treat to lab numbers. TSH isn't a thyroid hormone. It's a pituitary hormone. It is "Thyroid Stimulating Hormone" produced by your pituitary when there is insufficient thyroid hormone in your blood. Unfortunately, when you start adding in extra hormone, and especially you shake up the feedback loop a little. It is especially challenging when folks are on natural thyroid medicine because the T3 component suppresses the TSH very quickly. You can end up with low T4, but low TSH, and the docs will freak out and cut your dose leaving you essentially hypothyroid.

You very well could have a quick response to the addition of thyroid meds, but with such a low dose starting in I don't know how dramatic it would be. It really does take a few weeks after each dose change to get the levels stable, that is why thyroid requires a lot of patience to treat! It's why they have to start out a little lower, and gradually ramp up, seeing how you feel between each change.

PricklyPear suggested the thyroid forum at About.com, that is one of the very best! Lots of good people there, like there are here, with lots of education and experience. You can also find a lot of good information at Open Original Shared Link. There is lots of great stuff on the usual thyroid problems, but also lots about thyroid hormone resistance/reverse T3 issues. Docs don't understand that at all...you want to see your doc REALLY roll his eyes, start talking about thyroid hormone resistance, LOL!

[nvsmom]

I've been on thyroid therapy a while now...

And since I've been gluten-free for one year now, I see distinct improvements (getting rid of that rash was a huge bonus, ya think?) but am still left with some oddball symptoms...which I don't think are gluten I think are thyroid.

I am at the point now of pursuing other ideas - like low tissue thyroid levels, and reverse t3 resistance. I need to go grab my upcoming lab sheet (sure its in the mailbox) and see what she put on the order and add what else I need.

Above said.... I noticed a decrease in brain fog going gluten-free. And an increase in stamina. But as it goes with Hashis - it can come and go... and obviously I've had an AI (thyroid?) type flare within the year (my TSH skyrocketed to 8 and it's NEVER been 8)...and at this point I'm diving deeper and willing to do some oddball stuff to conquer the remaining problems.

****And just an encouraging note - my "word recall" skyrocketed the first week being on thyroid supplements. I really hated that... and guess what I've been noticing the last few months...decreased "word recall". Something isn't right, and it isn't gluten...

As far as reading material goes - try the About.com forums. Seriously. I have a Mary Shomon book and she moderates the forums. They publish articles and hi-light new research. I'm rather behind on my thyroid research and news, I admit, having spent recent years working on The Stupid Rash from Hell and gluten. But I digress... read through the forums and you'll see books and authors mentioned. I've given up knowing what is a "good book" til I get my hands on it. I can read an interview of a doctor and s/he sounds great, then the book is terrible. That's why I recommend the library. Just go and grab everything and see what resonates.

Pricklypear - I feel lucky that I never had to deal with DH. I think I've had small flares a couple of times but it disappeared within a couple of months... I was lucky.

I never thought I had brain fog but after reading how you, and others describe it, I'm beginning to think I do have it to a degree. I lose words all the time, and really basic vocabulary too. And I used to have great recall for facts and stats, as well as a good memory... I never lost my keys! LOL the last ten years have been a different story, but I chalked it up to have 3 kids and getting older. I REALLY hope that improves. It would be a treat to get that mental sharpness back.

I have started looking through Shomon's forum on About.com. Thanks. I'm still lurking and reading like crazy there and haven't gotten around to posting yet. It does look helpful.

[nvsmom]

Nope, docs are taught that TSH is everything when it comes to thyroid treatment. Far too few are able to think "outside the box", far too few treat symptoms, instead they treat to lab numbers. TSH isn't a thyroid hormone. It's a pituitary hormone. It is "Thyroid Stimulating Hormone" produced by your pituitary when there is insufficient thyroid hormone in your blood. Unfortunately, when you start adding in extra hormone, and especially you shake up the feedback loop a little. It is especially challenging when folks are on natural thyroid medicine because the T3 component suppresses the TSH very quickly. You can end up with low T4, but low TSH, and the docs will freak out and cut your dose leaving you essentially hypothyroid.

You very well could have a quick response to the addition of thyroid meds, but with such a low dose starting in I don't know how dramatic it would be. It really does take a few weeks after each dose change to get the levels stable, that is why thyroid requires a lot of patience to treat! It's why they have to start out a little lower, and gradually ramp up, seeing how you feel between each change.

PricklyPear suggested the thyroid forum at About.com, that is one of the very best! Lots of good people there, like there are here, with lots of education and experience. You can also find a lot of good information at Open Original Shared Link. There is lots of great stuff on the usual thyroid problems, but also lots about thyroid hormone resistance/reverse T3 issues. Docs don't understand that at all...you want to see your doc REALLY roll his eyes, start talking about thyroid hormone resistance, LOL!

Beachbirdie - I find it odd that docs put so much in TSH too! What if it's high because of my pituitary? Or my TRH isn't working? Odd.

I didn't realize that the natural thyroid could affect TSH like that. I'll remember that if I switch onto that in the future.

I thought it was funny that they said I'd start to feel better after one week on the lowest dose. The only thing I've noticed so far is that it's easier to go to the bathroom. And, I'm hoping this is coincidence, my energy levels actually feel worse; I wouldn't drive far or in the evenings with the way I'm feeling.

I was thinking of buying that book, Stop the Madness. It looked interesting... But I hope I'm one of those freakishly easy to treat patients. LOL I'm guessing I won't be that lucky.

[Ruby's Mom]

I've been reading this board since my diagnosis (2 months ago, just like the OP). This thread pushed me to register! I do not have another autoimmune disease with the celiac disease, but seem to suffer from sequential autoimmune diseases!!! 17 years ago, I was diagnosed with Graves Disease, and inexplicably, a year ago, it went into remission. It doesn't usually do that. For 16 years I was under the care of a wonderful endocrinologist who not only treated my symptoms, but worked with me whenever my dosages needed a change. For me, my symptoms were always connected to my Free T3. Now that I have been symptom free for a year, I only have to have a TSH done unless anything changes. When I told my endocrinologist that I had been diagnosed with celiac disease, she told me that she has quite a few patients that have it, and D3 absorbtion is a problem for them. Mine was low, in spite of my taking a large dose with my calcium, as the Graves caused osteoporosis. I have doubled the dose. My B12 was high, as Pernicious Anemia runs in my family, so I had been taking a good dose of Methyl B12. I have cut that one in half. I always joked that I got Graves instead of Pernicious Anemia! All my other nutritional tests were good/normal. I have been completely gluten free since my diagnosis and am still having issues with fatigue, which is discouraging. But now I see that this could go on for a long time yet. The books I read said it could take up to 2 years to heal! I am glad to hear of some people who felt better after 10-12 months. My sister was diagnosed almost 4 years ago with DH. She has never had GI symptoms, which is all I have. I take it that some people have both. We are absolutely sure our Mom had celiac disease, but in those days they didn't diagnose it, so she was told she had a "spastic colon" and then later they called it IBS. I am a bit discouraged that I am still having to curtail some of my activities.

My avocation is dog training, and I teach at my training club and volunteer at a shelter. (Ruby is one of my Border Collies). I have cut my hours at the shelter, and are between sessions at the club. That is a help. But the brain fog people refer to is hampering my ability to indulge in my personal hobby/passion - sewing and tailoring. When I have the time to work on it, my brain might not be out of the fog far enough.

I sure wish someone could tell me how long this will go on, but I understand that everyone is different, and it not only depends on how much damage has been done (lots), but on how fast an individual may repair herself! (Unknown!)

I am glad to have this forum. I have been through something similar in the past (ovarian cancer 19 years ago) and a similar forum was a great help. Actually, the chemo I had wreaks havoc on the immune system, so I guess I shouldn't be surprised at anything. Heck, celiac disease isn't terminal, so I try to keep it in perspective.

[nvsmom]

Ruby's mom - That's great that your grave's is in remission! I've never heard of that either. I've read there is a chance of that if hypo if it was celiac induced... but I'm not holding my breath. LOL

You've got a great attitude about the celiac! I hope it goes smoothly for you.

[beachbirdie]

My avocation is dog training, and I teach at my training club and volunteer at a shelter. (Ruby is one of my Border Collies).

Hi Ruby's mom! Welcome! This is totally off-topic (apologies to the OP) but your mention of Ruby caught my eye...I have two Border Collies, and have had several others over the years. I love them!

Glad to hear your Grave's is in remission!