Hormones, Hashi's And Celiac- How Does This All Work Together?

[icelandgirl]

Hi all,

I had the best Dr's appointment yesterday, with my allergist, and he got me really thinking about what's going on with my body. After we talked about my allergies and how allergy shots were going (I'm so allergic 4+ to everything), I told him that I had been diagnosed with celiac disease in January and that I was still having trouble with bloating, D and fatigue. He says have you been tested for Hashimoto's? That it goes hand in hand so often with celiac. It turns out that his wife has both! This is the first Dr. I've encountered who has actual real life experience with this disease. So, I picked his brain for a while. We talked about how there are no good celiac Dr's where we live. He and his wife have been to see Fasano. He told me if I came up with any questions about celiac to feel free to call because he and his wife have been through it all over the past 2 years. Amazing appointment...a Dr who gets it!!

Anyway, I was diagnosed with hypothyroid shortly after my oldest was born 14 years ago. I've never been tested for Hashimoto's. I've only ever had TSH and T4 tested. My allergist said that until the thyroid is working the way it needs to, the gut will have issues. Is that true? Could this be part of my issue? The last time I had my thyroid checked my TSH was 4.65. So, my Dr. upped my dose to 112 mcg. That was 4 weeks ago and I'm supposed to go in 2 weeks from now to have it re-checked. I think it's time that I ask for everything else related to the thyroid to be checked. Anyone know exactly what that is and what levels should be.

Almost forgot...When I had my blood work done, both my ldl cholesterol and triglycerides were high...they've always been low before.

I've been having so many weird issues lately....beyond the digestive, I've got some issues with my period and have realized thanks to my food diary that all of my digestive issues get much worse from ovulation-period. So 2 1/2 - 3 weeks out of the month I feel bad. Ugh.

I guess I'm searching and wondering still, but things made sense yesterday. I guess it could also be female hormones...perimenopause? I will be 43 soon.

I'm wondering if anyone knows how this all works together and how Hashi's and other hormonal issues could affect things like digestion, D, bloating and fatigue.

Thanks in advance for all input and wisdom!

[Gemini]

Hi icelandgirl.......I am not sure about the relationship between thyroid and ongoing GI problems.  That is a new one for me.  I have both Hashi's (for over 20 years) and Celiac (for 9 years).  I was diagnosed with the Hashi's first and still had major gut problems but that was because the Celiac diagnosis came way, way after the Hashi's one.  I have had a few unstable moments with the thyroid after the celiac diagnosis but that was because of healing and the need to cut back on thyroid hormone.  I was on 150 mcg pre-Celiac diagnosis and now am on a rotating dose of 130mcg for 2 days and 113mcg every third day.  Yes, sounds screwy but that is what it took to get my numbers and symptoms steady....for the time being.

 

First off, that TSH number is very high and the fatigue could very well be from that.  If my TSH goes to 2, I have trouble getting out of bed in the morning to go to work and my nails start splitting like crazy.  I normally have nice, strong nails that never split so its my beacon for trouble and makes it very easy to know when things aren't right.  Most folks find that keeping their TSH to around 1 is optimal. Anything over a 2-2.5 with your blood panel is treatable low thyroid. (TSH)  Second, no way should anyone be dosing you based on the TSH alone. If you have Hashi's, which you know is autoimmune in nature, whenever your thyroid is checked, T3 and T4 always need to be run, although the TSH info is useful but dosage should not be based on that alone. As Hashi's can swing from low to hyper, you need to be checking the actual hormone levels. I feel best when they are in the mid to upper range of whatever the normal ranges are for the lab used. I am sure Nicole (nvsmom) will chime in because she knows her stuff with thyroid.

 

Open Original Shared Link  Here is some reading for you explaining some of the needs of Hashi's patients and what not to do.  Make sure they always run, at least in the beginning, a full thyroid panel, including antibodies.  Later on, when you have stabilized things, T3, T4 and TSH are all that is needed.  But you need to see antibody levels for awhile and that is the way they can tell if you have Hashi's...which you probably do as you have Celiac and that TSH is high.

 

Yes, you could be slipping into peri-menopause, my dear!  I slammed into it at 38 years old.  All of these hormones are supposed to play together well as they all interact.  Adrenals, thyroid, brain chemicals, female hormones.....this is why we get so messed up if one component isn't playing well with the others.  Just be wary of docs who try and ply you with supplements for these things as I made that mistake and most of them never worked well.  Getting the thyroid stable was the biggest corrective measure I made....oh, yeah...and going gluten-free.

 

I will admit, I was a total mess by the time the Celiac diagnosis was made.  My hormones were unstable and I had horrible menopausal symptoms, my thyroid was all over the place because I was not absorbing the hormone well at all, my other AI diseases were spinning out of control....sounds like fun, huh?  But, I am a different person today than I was then but it does take time and lots of tweaking, so be prepared for that.  I am not sure if the thyroid issue is causing your GI distress as that usually is other food intolerances/allergies but it could happen that these things are affecting your gut.  BTW....I had horrible allergies also....seasonal.  I did allergy shots for about 10 years and they worked well. I still have allergy problems but only when the the mold count gets really high....or the ragweed gets really high.  It has to be bad before I am affected and the symptoms are not as bad as they used to be so there is hope!

 

The other piece of advice is to dose with both T3/T4 numbers and symptoms in mind.  Before they had all these blood tests, thyroid was dosed slowly until all your symptoms disappeared.  That still is good protocol to follow, backed up by blood work. If you like, when you have the full panel done, post results here and I or Dr. Nicole will help you. 

I would also recommend saliva testing for your adrenals and female hormones.  Yes, saliva testing and I hope this doc does it that way because blood testing for female hormone levels is a joke.  You have to be seriously tanking or almost done with menopause before blood work shows anything.  I had raging hot flashes and night sweats, had the blood work done and the levels came back fine.  My PCP and I butted heads over this so I went through my thyroid doc as she does saliva testing.  Low and behold....my progesterone was low and that is the first hormone to tank when entering the fun hormonal years.  Nothing like having a doc tell you that your hormones are fine when you are so miserable with menopausal symptoms you could choke someone.  I was 38 when all the fun started with that and 45 when I was done.....meaning done, no more monthly cycles. 

 

That is enough for now as I am sure your head is spinning.  If you have any questions, and I am sure you will, don't be afraid to ask or PM me.  Hormones are tricky to balance but it can be done and then you will feel much better.  You are on the early road to recovery so please be patient and don't murder anyone.  There are days when you will be tempted but this too shall pass!     One more thing...there is the chance that your hormones will go back to normal once healing gets along further and all these unpleasant symptoms will stop. Or, like me, you are already on the road to menopause.  Don't worry about it......just concentrate on feeling better and see what happens down the road.

[SMRI]

I have hypothyroid but it's not Hashi's.  A TSH of 4.65 really isn't that high, sorry to disagree with Gemini .  In many labs, that is still in the normal range, which could be .5-5, but more endocrinologists use the the .3-3 scale.  When my TSH was first tested 19 years ago, it was at 95 (yes, ninety-five).  Everyone has a sweetspot for their TSH.  Mine is about .8.  

 

Hormones--the thyroid can really throw them off, too low of a TSH and you will stop menstruating, too high and it can be like Niagra Falls . Change in my cycle (heavy, light) was how I knew my numbers were off for my thyroid. I've been on the same dose for about 15 years though so that is good.   Your thyroid can also mess up your cholesterol levels.  My cholesterol was 220 when they found my thyroid problem, now it hangs out around 130.  That was the one and only time I've had a high cholesterol reading.  The sleep issues, dry skin, pealing nails, etc, etc, etc, are just the side benefits of the thyroid junk .

[cyclinglady]

Cholesterol going up? That could be a sign of healing! All those years of a low cholesterol levels (116 total) and doctors congratulating me for managing it so well and it was Celiac Disease! My check-up last January showed a score of 132. I have been consuming more fats to increase the total and my HDL. The latest research indicates that really low cholesterol levels are not good at all! I am waiting on my current lab results as I write.

My Hashi's has been stable since my diagnosis (finally!) and I have gone through menopause. Swinging from hypo to hyper was driving me crazy! Everyone is different and should adjust their meds according to their symptoms, but I think most folks feel better with a TSH close to 1 and not going hyper. My retired doctor told me that TSH ranges increased over the last 30 years. So, those ranges posted now are based on a population that has been having increasing thyroid issues.

My Hashi's never affected my intestinal tract that I can recall (allergies set me off), but fatigue was a sure sign that I was low on thyroid hormone.

[beth01]

This really has no bearing on anything, just a wonder....

 

If people do so well on thyroid replacements without having to fight their still active thyroid, why don't they use the radioactive iodine for Hashi's like they do for Grave's?  Not sure if anyone knows why or not but I was just wondering.

[icelandgirl]

Cholesterol going up? That could be a sign of healing! All those years of a low cholesterol levels (116 total) and doctors congratulating me for managing it so well and it was Celiac Disease! My check-up last January showed a score of 132. I have been consuming more fats to increase the total and my HDL. The latest research indicates that really low cholesterol levels are not good at all! I am waiting on my current lab results as I write.

My Hashi's has been stable since my diagnosis (finally!) and I have gone through menopause. Swinging from hypo to hyper was driving me crazy! Everyone is different and should adjust their meds according to their symptoms, but I think most folks feel better with a TSH close to 1 and not going hyper. My retired doctor told me that TSH ranges increased over the last 30 years. So, those ranges posted now are based on a population that has been having increasing thyroid issues.

My Hashi's never affected my intestinal tract that I can recall (allergies set me off), but fatigue was a sure sign that I was low on thyroid hormone.

Hi cyclinglady...yeah my cholesterol was so nice and low the last time it was checked that my Dr thought I wouldn't need it checked for another 5 years.  But now my LDL is like 115...and that's not good.  My new Dr.  was concerned and gave me all this info about lowering cholesterol.  The problem is...I only eat meat(primarily chicken, fruits and veggies, rice and potatoes).  I primarily use olive oil as a fat.  I'm not sure how this is happening.  I have been researching today though...and high LDL and triglycerides are tied to hypothyroid.  They've also been linked to female hormonal issues.

 

I'm wondering if my thyroid and possibly perimenopause are now throwing my whole self into a tailspin.  My periods have always been bad...cine the first one, a month before I turned 12...but the last couple have been weird.  

[icelandgirl]

I have hypothyroid but it's not Hashi's.  A TSH of 4.65 really isn't that high, sorry to disagree with Gemini .  In many labs, that is still in the normal range, which could be .5-5, but more endocrinologists use the the .3-3 scale.  When my TSH was first tested 19 years ago, it was at 95 (yes, ninety-five).  Everyone has a sweetspot for their TSH.  Mine is about .8.  

 

Hormones--the thyroid can really throw them off, too low of a TSH and you will stop menstruating, too high and it can be like Niagra Falls . Change in my cycle (heavy, light) was how I knew my numbers were off for my thyroid. I've been on the same dose for about 15 years though so that is good.   Your thyroid can also mess up your cholesterol levels.  My cholesterol was 220 when they found my thyroid problem, now it hangs out around 130.  That was the one and only time I've had a high cholesterol reading.  The sleep issues, dry skin, pealing nails, etc, etc, etc, are just the side benefits of the thyroid junk .

When my thyroid first went wacky I gained 10 pounds in a month, was wearing 2 shirts, pants, 2 pairs of socks and wrapped in a blanket all the time and still freezing.  My TSH was 116.  I've currently got the Niagara Falls type thing going on, and the worst PMS, which involves horrendous mood swings, crying at anything (including the receptionist at the Dr's office) and terrible headaches.  

[icelandgirl]

Hi icelandgirl.......I am not sure about the relationship between thyroid and ongoing GI problems.  That is a new one for me.  I have both Hashi's (for over 20 years) and Celiac (for 9 years).  I was diagnosed with the Hashi's first and still had major gut problems but that was because the Celiac diagnosis came way, way after the Hashi's one.  I have had a few unstable moments with the thyroid after the celiac diagnosis but that was because of healing and the need to cut back on thyroid hormone.  I was on 150 mcg pre-Celiac diagnosis and now am on a rotating dose of 130mcg for 2 days and 113mcg every third day.  Yes, sounds screwy but that is what it took to get my numbers and symptoms steady....for the time being.

 

First off, that TSH number is very high and the fatigue could very well be from that.  If my TSH goes to 2, I have trouble getting out of bed in the morning to go to work and my nails start splitting like crazy.  I normally have nice, strong nails that never split so its my beacon for trouble and makes it very easy to know when things aren't right.  Most folks find that keeping their TSH to around 1 is optimal. Anything over a 2-2.5 with your blood panel is treatable low thyroid. (TSH)  Second, no way should anyone be dosing you based on the TSH alone. If you have Hashi's, which you know is autoimmune in nature, whenever your thyroid is checked, T3 and T4 always need to be run, although the TSH info is useful but dosage should not be based on that alone. As Hashi's can swing from low to hyper, you need to be checking the actual hormone levels. I feel best when they are in the mid to upper range of whatever the normal ranges are for the lab used. I am sure Nicole (nvsmom) will chime in because she knows her stuff with thyroid.

 

Open Original Shared Link  Here is some reading for you explaining some of the needs of Hashi's patients and what not to do.  Make sure they always run, at least in the beginning, a full thyroid panel, including antibodies.  Later on, when you have stabilized things, T3, T4 and TSH are all that is needed.  But you need to see antibody levels for awhile and that is the way they can tell if you have Hashi's...which you probably do as you have Celiac and that TSH is high.

 

Yes, you could be slipping into peri-menopause, my dear!  I slammed into it at 38 years old.  All of these hormones are supposed to play together well as they all interact.  Adrenals, thyroid, brain chemicals, female hormones.....this is why we get so messed up if one component isn't playing well with the others.  Just be wary of docs who try and ply you with supplements for these things as I made that mistake and most of them never worked well.  Getting the thyroid stable was the biggest corrective measure I made....oh, yeah...and going gluten-free.

 

I will admit, I was a total mess by the time the Celiac diagnosis was made.  My hormones were unstable and I had horrible menopausal symptoms, my thyroid was all over the place because I was not absorbing the hormone well at all, my other AI diseases were spinning out of control....sounds like fun, huh?  But, I am a different person today than I was then but it does take time and lots of tweaking, so be prepared for that.  I am not sure if the thyroid issue is causing your GI distress as that usually is other food intolerances/allergies but it could happen that these things are affecting your gut.  BTW....I had horrible allergies also....seasonal.  I did allergy shots for about 10 years and they worked well. I still have allergy problems but only when the the mold count gets really high....or the ragweed gets really high.  It has to be bad before I am affected and the symptoms are not as bad as they used to be so there is hope!

 

The other piece of advice is to dose with both T3/T4 numbers and symptoms in mind.  Before they had all these blood tests, thyroid was dosed slowly until all your symptoms disappeared.  That still is good protocol to follow, backed up by blood work. If you like, when you have the full panel done, post results here and I or Dr. Nicole will help you. 

I would also recommend saliva testing for your adrenals and female hormones.  Yes, saliva testing and I hope this doc does it that way because blood testing for female hormone levels is a joke.  You have to be seriously tanking or almost done with menopause before blood work shows anything.  I had raging hot flashes and night sweats, had the blood work done and the levels came back fine.  My PCP and I butted heads over this so I went through my thyroid doc as she does saliva testing.  Low and behold....my progesterone was low and that is the first hormone to tank when entering the fun hormonal years.  Nothing like having a doc tell you that your hormones are fine when you are so miserable with menopausal symptoms you could choke someone.  I was 38 when all the fun started with that and 45 when I was done.....meaning done, no more monthly cycles. 

 

That is enough for now as I am sure your head is spinning.  If you have any questions, and I am sure you will, don't be afraid to ask or PM me.  Hormones are tricky to balance but it can be done and then you will feel much better.  You are on the early road to recovery so please be patient and don't murder anyone.  There are days when you will be tempted but this too shall pass!     One more thing...there is the chance that your hormones will go back to normal once healing gets along further and all these unpleasant symptoms will stop. Or, like me, you are already on the road to menopause.  Don't worry about it......just concentrate on feeling better and see what happens down the road.

Hi Gemini...(hugs) and thank you.  I'm not sure about it either.  I'm just wondering.  My allergist mentioned that I have such a strong immune response that he thinks I might react to almost anything.  I'm reacting so strongly to the current level of shots that he's dialing them back and having me go in every 2 weeks instead of weekly.

 

I hope that my Dr will listen to me next week about this thyroid stuff and will test for everything.  IS anything done to treat Hashi's differently than other hypo?  Or is it just harder to regulate?

 

I must say that I think none of my hormones are playing well together at all!  I wonder if my gynecologist will do a saliva test.  I like her, but I'm not sure.  If not, I will have to look elsewhere.  I want to get this all figured out.  Gut wise, I'm still having D 7-10 days a month and I feel bloated frequently.  Another part of the problem is that I had my gallbladder out 2 weeks after celiac diagnosis.  So, I never figured out how my body worked just gluten free, but with a gallbladder.  I realize that the digestive stuff could be related to that as well.  I just don't know.  If I could go back, I would have put off the gallbladder.  It wasn't causing trouble.  It just had a lot of polyps.  

 

I hope I'm on the road to menopause...I welcome it after all the issues I've had with that part of my life.  Thanks again...think I'm going to PM you separately more on the period/peri stuff.  

[nvsmom]

Thyroid problems suck.   I had the run around with thyroid problems for years and years and it was because my TSH was a high normal to slightly high.  It was in between a 2.6 to a 6.8.  Our normal  upper range was 6 so my doctors said I was normal, but it wasn't normal for me.  My hair was thin, my temperature was between 96 and 97.5, my skin was scaly, I only had C, and I was slow.... but according to my doctor I was fine . I'm bitter.  LOL  Even when my doctor was (finally) treating me with Synthroid, I had to fight him to keep upping my Synthroid once my TSH hit a 5.6, a 3.8, and a 2.6 - actually once it hit 3.8 or so he refused to up my doses anymore because my continuing hypothyroid symptoms were now suddenly "coincidental", and I had to tell him that I was going to keep upping my dose myself (while I looked for another doctor).  I was altering my lab requisition forms too. He would only test TSH and T4 so I would add the word "free" in front of it and then add free T3 as well.  He never said a word, but it allowed me to see that my actual hormone levels were not budging more than a fraction from where they were when my TSH was higher (the highest it was ever measured was a 14).

 

I found a new doctor who would try my on natural desiccated thyroid hormone and started a bit high (on the bright side, I now know what hyper feels like LOL) and then settled into a dose of 150mcg, which is just below a full replacement dose for my size.  My TSH is now around a 0.01.  Yeah, that's right. 0.01.  LOL  BUT my actual hormone levels (free T's) are at about 70% of the normal range AND I feel pretty good.  When I was hyper my free T's went above normal or in the high end of normal even though my TSH was at 0.22 (which was within my lab's normal range) so I now know that the free Ts reflect my thyroid health much better than the TSH ever did.

 

Thyroid issues really need to be treated according to symptoms.  That TSH test is pretty close to useless for some people - not everyone but for some. For me, it caused many years of missed treatment, and I get annoyed about years I lost to poor health.  I'm sure you know what I mean.

 

I started being treated for hypothyroidism at the same time that I was diagnosed with celiac disease.  I don't know if going gluten-free helped, but I've never decreased my dosage after getting it steady.

 

My cycles have always affected my bowels.  I used to almost enjoy PMS because my body would clear itself out right before my period started (like before labour) and for someone with chronic C, it was a relief! LOL  Ovulation would affect me some too.  Now that I have been gluten-free for a couple of years, and treated my thyroid successfully for one year, my periods have changed again.  They are more regular and have a shorter cycle; menstruation is also a few days shorter and spotting has mostly stopped. PMS is also easier.  I haven't hit menopause yet but I get a preview hot flash every once in a while so I doubt it is many years off.

 

I've mostly ranted. LOL Listen to Gemini, she knows her stuff. Adrenals are good to check out... Yep, ditto everything she said.  Good luck!

[SMRI]

Hi Gemini...(hugs) and thank you.  I'm not sure about it either.  I'm just wondering.  My allergist mentioned that I have such a strong immune response that he thinks I might react to almost anything.  I'm reacting so strongly to the current level of shots that he's dialing them back and having me go in every 2 weeks instead of weekly.

 

I hope that my Dr will listen to me next week about this thyroid stuff and will test for everything.  IS anything done to treat Hashi's differently than other hypo?  Or is it just harder to regulate?

 

I must say that I think none of my hormones are playing well together at all!  I wonder if my gynecologist will do a saliva test.  I like her, but I'm not sure.  If not, I will have to look elsewhere.  I want to get this all figured out.  Gut wise, I'm still having D 7-10 days a month and I feel bloated frequently.  Another part of the problem is that I had my gallbladder out 2 weeks after celiac diagnosis.  So, I never figured out how my body worked just gluten free, but with a gallbladder.  I realize that the digestive stuff could be related to that as well.  I just don't know.  If I could go back, I would have put off the gallbladder.  It wasn't causing trouble.  It just had a lot of polyps.  

 

I hope I'm on the road to menopause...I welcome it after all the issues I've had with that part of my life.  Thanks again...think I'm going to PM you separately more on the period/peri stuff.  

 

I don't know how old you are but I thought I was in menopause, 15 months worth, the bam, after a week of going gluten-free, shows up again....SERIOUSLY 15 MONTHS?????  I was NOT happy!!!  But, then again, being "fully" through menopause by age 48, or so I thought, was part of what prompted me to go to the doctor and resulted in my diagnosis--although I thought I had something else and the celiac testing was an add on just to make sure kind of test.

[icelandgirl]

Thyroid problems suck.   I had the run around with thyroid problems for years and years and it was because my TSH was a high normal to slightly high.  It was in between a 2.6 to a 6.8.  Our normal  upper range was 6 so my doctors said I was normal, but it wasn't normal for me.  My hair was thin, my temperature was between 96 and 97.5, my skin was scaly, I only had C, and I was slow.... but according to my doctor I was fine . I'm bitter.  LOL  Even when my doctor was (finally) treating me with Synthroid, I had to fight him to keep upping my Synthroid once my TSH hit a 5.6, a 3.8, and a 2.6 - actually once it hit 3.8 or so he refused to up my doses anymore because my continuing hypothyroid symptoms were now suddenly "coincidental", and I had to tell him that I was going to keep upping my dose myself (while I looked for another doctor).  I was altering my lab requisition forms too. He would only test TSH and T4 so I would add the word "free" in front of it and then add free T3 as well.  He never said a word, but it allowed me to see that my actual hormone levels were not budging more than a fraction from where they were when my TSH was higher (the highest it was ever measured was a 14).

 

I found a new doctor who would try my on natural desiccated thyroid hormone and started a bit high (on the bright side, I now know what hyper feels like LOL) and then settled into a dose of 150mcg, which is just below a full replacement dose for my size.  My TSH is now around a 0.01.  Yeah, that's right. 0.01.  LOL  BUT my actual hormone levels (free T's) are at about 70% of the normal range AND I feel pretty good.  When I was hyper my free T's went above normal or in the high end of normal even though my TSH was at 0.22 (which was within my lab's normal range) so I now know that the free Ts reflect my thyroid health much better than the TSH ever did.

 

Thyroid issues really need to be treated according to symptoms.  That TSH test is pretty close to useless for some people - not everyone but for some. For me, it caused many years of missed treatment, and I get annoyed about years I lost to poor health.  I'm sure you know what I mean.

 

I started being treated for hypothyroidism at the same time that I was diagnosed with celiac disease.  I don't know if going gluten-free helped, but I've never decreased my dosage after getting it steady.

 

My cycles have always affected my bowels.  I used to almost enjoy PMS because my body would clear itself out right before my period started (like before labour) and for someone with chronic C, it was a relief! LOL  Ovulation would affect me some too.  Now that I have been gluten-free for a couple of years, and treated my thyroid successfully for one year, my periods have changed again.  They are more regular and have a shorter cycle; menstruation is also a few days shorter and spotting has mostly stopped. PMS is also easier.  I haven't hit menopause yet but I get a preview hot flash every once in a while so I doubt it is many years off.

 

I've mostly ranted. LOL Listen to Gemini, she knows her stuff. Adrenals are good to check out... Yep, ditto everything she said.  Good luck!

Hi Nicole...I love the rants because they make me feel less alone. Lol

I know you've posted them before, but can you post the optimal thyroid values again. I want to take them with me to my Dr.

I am wondering is it my thyroid? Is it my other hormones? Is it both? Is there a Dr that will help me? It's really frustrating. I wonder what happened to my body. I feel like I don't know it anymore. 6 months ago I thought all I had to do was eat gluten free and all would be well.

[icelandgirl]

I don't know how old you are but I thought I was in menopause, 15 months worth, the bam, after a week of going gluten-free, shows up again....SERIOUSLY 15 MONTHS?????  I was NOT happy!!!  But, then again, being "fully" through menopause by age 48, or so I thought, was part of what prompted me to go to the doctor and resulted in my diagnosis--although I thought I had something else and the celiac testing was an add on just to make sure kind of test.

I'll be 43 in 2 months.

[cyclinglady]

Hey, that perimenopause thing? It can last up to 10 years! I started with severe night sweats six months after my daughter's birth (at 40). Doc said I was lucky that I had my daughter. I have had every peri menopausal symptom on and off over the course of 12 years. What did help was additional hormones. My cancer risk was low and the HRT (by a compounding pharmacist) provided with enough hormones to get me through my worst symptoms. I would go on and off HRT over the years. I used them when my "quality of life" required them ("honey, maybe you need to go back on HRT!"). Seriously, how can you function when twice a night you wake up so drenched you have to change your nightgown and replace the beach towels you lay on? Then you can not fall back to sleep!

I am back on HRT within a year of being post menopausal. This time to build bone. I have another year to be on them. I hope it is working, along with the extra Bit. D, calcium and improved absorption from being gluten-free. I think it is because I am not getting rib or hip pain sleeping anymore and my fractures have healed.

Just something to consider.

[nvsmom]

Hi Nicole...I love the rants because they make me feel less alone. Lol

I know you've posted them before, but can you post the optimal thyroid values again. I want to take them with me to my Dr.

I am wondering is it my thyroid? Is it my other hormones? Is it both? Is there a Dr that will help me? It's really frustrating. I wonder what happened to my body. I feel like I don't know it anymore. 6 months ago I thought all I had to do was eat gluten free and all would be well.

 

For the TSH, it is generally accepted that 0.3-3 is a normal range.   An upper range of 2.5 or 2.0 is often a better for those who feel  hypothyroid though.  I felt just as hypo at the mid 2's as I did at 14, but that's just me.

 

If you take T3 or natural desiccated thyroid (like Armour) which has T3 in it, your TSH values could end up suppressed like mine. My body feels no need to make T4 and T3 (and the others) because my NDT provides the right amount - my thyroid is not being stimulated to make more.  My TSH is well below normal range BUT my free T's are at a good place.

 

Free T4 and free T3 are the active hormones that you would want to check. Total T4 and total T3 (or just T3 or T4) don't tell you much.  That's a second class lab test in my opinion.  You want your free T3 and free T4 in the 50-75% range of your lab's normal reference range. For example, if you lab's normal range was 1-6, then you would want to get your numbers above 3.5 and probably not above the 5.  If that had been my lab's range when I was diagnosed, my number would have been a 1.5 - normal but not good.  On Synthroid I would have got it up to a 2 with a TSH of about 2.6 or so.  On NDT, my free T's (using this made-up range) would be about a 4.5 even though my TSH is too low for most doctors.  Using this range, when I felt hyper, my free T would have been a 6.

 

TPO Ab should be low.  My range was 0-34, and I scored a 33.8, so technically I don't have Hashi's.  LOL It did come down to 20 something after being gluten-free for about a year... don't know if that means anything or if it is just a fluke.  It didn't change my treatment as far as I could tell.

 

Remember, it still could be celiac disease causing issues.  There are many gluten-free veterans who took years to get to where they are now.  Things could still change for you.  Fingers crossed.  

[icelandgirl]

Hey, that perimenopause thing? It can last up to 10 years! I started with severe night sweats six months after my daughter's birth (at 40). Doc said I was lucky that I had my daughter. I have had every peri menopausal symptom on and off over the course of 12 years. What did help was additional hormones. My cancer risk was low and the HRT (by a compounding pharmacist) provided with enough hormones to get me through my worst symptoms. I would go on and off HRT over the years. I used them when my "quality of life" required them ("honey, maybe you need to go back on HRT!"). Seriously, how can you function when twice a night you wake up so drenched you have to change your nightgown and replace the beach towels you lay on? Then you can not fall back to sleep!

I am back on HRT within a year of being post menopausal. This time to build bone. I have another year to be on them. I hope it is working, along with the extra Bit. D, calcium and improved absorption from being gluten-free. I think it is be

cause I am not getting rib or hip pain sleeping anymore and my fractures have healed.

Just something to consider.

Hey cyclinglady...I had my daughter 2 months before I turned 40 and my body has never been the same since. I think that's what took me into full blown celiac disease. I feel bad for my husband...This is my 2nd marriage...We've been married almost 4 years. We found out I was pregnant 3 days after we got married and the whole pregnancy was so rough and I've just never been the same since. He's got to be wondering What happened to the energetic, fun person he married. I mean I keep looking for her and I can't fin her either. Where is she??

It's really hard to function when you wake up like that...ugh. Then I'm so cold because I was so wet. I'm definitely going to ask to have my hormone levels checked when I see my gyno in 2 weeks. But, I have the feeling she'll only do blood testing and as Gemini pointed out, it's not a great test.

[icelandgirl]

For the TSH, it is generally accepted that 0.3-3 is a normal range.   An upper range of 2.5 or 2.0 is often a better for those who feel  hypothyroid though.  I felt just as hypo at the mid 2's as I did at 14, but that's just me.

 

If you take T3 or natural desiccated thyroid (like Armour) which has T3 in it, your TSH values could end up suppressed like mine. My body feels no need to make T4 and T3 (and the others) because my NDT provides the right amount - my thyroid is not being stimulated to make more.  My TSH is well below normal range BUT my free T's are at a good place.

 

Free T4 and free T3 are the active hormones that you would want to check. Total T4 and total T3 (or just T3 or T4) don't tell you much.  That's a second class lab test in my opinion.  You want your free T3 and free T4 in the 50-75% range of your lab's normal reference range. For example, if you lab's normal range was 1-6, then you would want to get your numbers above 3.5 and probably not above the 5.  If that had been my lab's range when I was diagnosed, my number would have been a 1.5 - normal but not good.  On Synthroid I would have got it up to a 2 with a TSH of about 2.6 or so.  On NDT, my free T's (using this made-up range) would be about a 4.5 even though my TSH is too low for most doctors.  Using this range, when I felt hyper, my free T would have been a 6.

 

TPO Ab should be low.  My range was 0-34, and I scored a 33.8, so technically I don't have Hashi's.  LOL It did come down to 20 something after being gluten-free for about a year... don't know if that means anything or if it is just a fluke.  It didn't change my treatment as far as I could tell.

 

Remember, it still could be celiac disease causing issues.  There are many gluten-free veterans who took years to get to where they are now.  Things could still change for you.  Fingers crossed.  

Thanks for all the info Nicole. I do think it could be celiac, or thyroid, or other hormones, or lack of gallbladder. I'm a mess!

[Gemini]

As usual, Nicole gives stellar advice!  You are just like me, Nicole.....I use NDT and it suppresses my TSH, which really freaks doctors out.  I am actually running my TSH a bit higher these days, around a 1, because my PCP still thinks incorrectly I am getting too much thyroid hormone.  She is OK with going by free T3/T4 only but does not like my TSH that low.  Ummmmmm....I think I would know if I was hyper because that did happen badly when I had a shift after healing occured, but I have zero hyper symptoms and if I go any lower with my dose, symptoms return and I am miserable and tired. What don't these people understand?  Oh yeah...they don't have thyroid disease.

 

Sounds like you have Hashi's but you may have caught it before your antibodies spiked high.  That is a good thing.....

[nvsmom]

... What don't these people understand?  Oh yeah...they don't have thyroid disease.

 

Sounds like you have Hashi's but you may have caught it before your antibodies spiked high.  That is a good thing.....

LOL You hit the nail on the head!

 

To be honest, I think I may have missed the TPO Ab spike.  I started having thyroid problems and slightly abnormal TSH tests (in hindsight) back in my early 20's, but Dr Google wasn't around yet and I still trusted doctors back then... Ignorance is bliss - yeah, not so much.  I think I had a slow thyroid attack. I don't know. I just know that it doesn't do much anymore.  

 

People talk about preparing for worst case disaster scenarios with stored food and water - what scares me is the idea of not being able to get my thyroid meds anymore.  Eek!   I'd be a mess.

[SMRI]

Interesting how these things pop up in pregnancy...my thyroid when when I was pregnant as well, but I was 29.  Looking back, it was probably when my Celiacs started as well..infrequent symptoms but maybe kicked it off.  The last 7-10 years have been daily symptoms, mostly just D but still.

[cyclinglady]

LOL You hit the nail on the head!

 

To be honest, I think I may have missed the TPO Ab spike.  I started having thyroid problems and slightly abnormal TSH tests (in hindsight) back in my early 20's, but Dr Google wasn't around yet and I still trusted doctors back then... Ignorance is bliss - yeah, not so much.  I think I had a slow thyroid attack. I don't know. I just know that it doesn't do much anymore.  

 

People talk about preparing for worst case disaster scenarios with stored food and water - what scares me is the idea of not being able to get my thyroid meds anymore.  Eek!   I'd be a mess.

I guess I better get a pig and keep him in the backyard in case of earthquakes! I suppose I could dry out his thyroid.......ha! Seriously, I get 100 tablets of my Armour Thyroid to have on hand. I pay cash as it is so cheap. My dosage changed over the last two years so much that I have extra on hand...

[cyclinglady]

Hey cyclinglady...I had my daughter 2 months before I turned 40 and my body has never been the same since. I think that's what took me into full blown celiac disease. I feel bad for my husband...This is my 2nd marriage...We've been married almost 4 years. We found out I was pregnant 3 days after we got married and the whole pregnancy was so rough and I've just never been the same since. He's got to be wondering What happened to the energetic, fun person he married. I mean I keep looking for her and I can't fin her either. Where is she??

It's really hard to function when you wake up like that...ugh. Then I'm so cold because I was so wet. I'm definitely going to ask to have my hormone levels checked when I see my gyno in 2 weeks. But, I have the feeling she'll only do blood testing and as Gemini pointed out, it's not a great test.

That fun loving person will be back! Geez, you still have a little one and you are sick on top of it!

I am no longer that crazy menopausal, celiac-damaged, anemic, back-fractured, thyroid-swinging maniac that I once was! It is great having a 13 year (who is food prepping and loading up the RV as I type). Though I miss her being a cute 4year old. Schools starts on Monday and her Dad and I will once again have hours of free time (not really since we work from home and we need to generate income), but you get my drift. Now, it just my daughter and sister-in-law heading out in the RV for a weekend adventure. Made a few gluten-free dishes for hubby to eat while we are away. We do miss the freedom of eating out safely....wait, I just had lunch at PF Chang's with my old work buddies!. It is possible to eat out!

Life is getting better for me and it will for you!

[GFinDC]

This really has no bearing on anything, just a wonder....

 

If people do so well on thyroid replacements without having to fight their still active thyroid, why don't they use the radioactive iodine for Hashi's like they do for Grave's?  Not sure if anyone knows why or not but I was just wondering.

 

Hi Beth,

 

They use  radioactive Iodine to kill off the thyroid when it is the cause of the disease.  Say it's cancerous or overactive from some thyroid disease.  Hashimoto's isn't like that.  Hashimoto's is when the immune system attacks the thyroid.  So it's not the thyroid itself that is the cause of the condition, it's the immune system.  Killing off the immune system tends to be a real bad idea though.

[beth01]

Maybe I worded that wrong, I understand why they use the radioactive iodine.  If they used the radioactive iodine, it would kill the thyroid leaving the Hashi's bored since it would have nothing to attack, wouldn't you just be taking away one part of the puzzle?  It seems like some with Hashi's have a very hard time regulating their hormone levels because the thyroid is still active, just not working properly and is still secreting it's own hormones. LIke I said, not really needing an answer just a wonder.  It was so easy to just nuke the thyroid, a day of tests and two drinks and I was done.  Three days of being extra careful not to be around pregnant women and kids ( try telling that to your nine month old ) and flushing the toilet 70 gagillion times after using it so you aren't radiating everyone. But, I guess they don't radiate or remove everyone with Grave's thyroids, but I don't know how they get around that.  I would be too scared of a thyroid storm, can't come back from that. I know some are afraid of the radiation so they choose the drugs and to keep the thyroid. I have had so many CT and MRI scans to worry about a little radiation that they give you to kill the thyroid, I worry about all the other.  I probably glow in the dark by now lol.

 

 

About the pregnancy thing, I was diagnosed with Grave's shortly after my daughter was born.  Pregnancy throws your body chemistry all out of whack which makes it much easier for the immune system to attack, which is why women always have a higher incidence of autoimmune disease, or so says my Endo. 

[GFinDC]

Maybe I worded that wrong, I understand why they use the radioactive iodine.  If they used the radioactive iodine, it would kill the thyroid leaving the Hashi's bored since it would have nothing to attack, wouldn't you just be taking away one part of the puzzle?  It seems like some with Hashi's have a very hard time regulating their hormone levels because the thyroid is still active, just not working properly and is still secreting it's own hormones. LIke I said, not really needing an answer just a wonder.  It was so easy to just nuke the thyroid, a day of tests and two drinks and I was done.  Three days of being extra careful not to be around pregnant women and kids ( try telling that to your nine month old ) and flushing the toilet 70 gagillion times after using it so you aren't radiating everyone. But, I guess they don't radiate or remove everyone with Grave's thyroids, but I don't know how they get around that.  I would be too scared of a thyroid storm, can't come back from that. I know some are afraid of the radiation so they choose the drugs and to keep the thyroid. I have had so many CT and MRI scans to worry about a little radiation that they give you to kill the thyroid, I worry about all the other.  I probably glow in the dark by now lol.

 

 

About the pregnancy thing, I was diagnosed with Grave's shortly after my daughter was born.  Pregnancy throws your body chemistry all out of whack which makes it much easier for the immune system to attack, which is why women always have a higher incidence of autoimmune disease, or so says my Endo. 

 

Hi Beth,

 

From what I've read, the symptoms in Hashimoto's can swing between hypo and hyper.  So the thyroid is not always overactive  or underactive.  If it was stuck in hyper mode (overactive) I think you are right, they would end up nuking it.

 

It seems like I've read posts on here about people's Hashimoto's stabilizing after going gluten-free.  It would be a shame to nuke the thyroid if the immune attack could settle down on a gluten-free diet.

 

Really I don't know how youse women's do it with all those hormones running around your bodies all the time, let alone during pregnancy.  It's pretty amazing really!

[icelandgirl]

That fun loving person will be back! Geez, you still have a little one and you are sick on top of it!

I am no longer that crazy menopausal, celiac-damaged, anemic, back-fractured, thyroid-swinging maniac that I once was! It is great having a 13 year (who is food prepping and loading up the RV as I type). Though I miss her being a cute 4year old. Schools starts on Monday and her Dad and I will once again have hours of free time (not really since we work from home and we need to generate income), but you get my drift. Now, it just my daughter and sister-in-law heading out in the RV for a weekend adventure. Made a few gluten-free dishes for hubby to eat while we are away. We do miss the freedom of eating out safely....wait, I just had lunch at PF Chang's with my old work buddies!. It is possible to eat out!

Life is getting better for me and it will for you!

Thanks for the vote of confidence! If I find her, I'll have to let you know.

Definitely one of the most difficult parts of this has been feeling bad while taking care of my kids. My youngest was 3 last weekend. I feel like I can't be the mom they deserve and that makes me sad. But every day I'm doing everything I can to get better.