Gluten, Thyroid And Adrenal

[CaMaKe]

Hi. 41yo female. Hypothyroid 10+ yrs and newly diagnosed (by acupuncturist) as wheat/gluten intolerant. Regular Doc offered GI biopsy for actual celiac diagnosis but have been gluten-free for 6 weeks and feel SO MUCH BETTER so she's agreed to just do blood test and let me eat gluten-free without actual "celiac" label.

Have been ill since Oct with TSH fluctuating between hyper and hypo. Can't seem to get levels to settle down. Most recently have been taking 150 mcg levothyroid with a level of 1.8 but still felt sluggish etc. Acupuncturist recommended isocort (2 tabs twice a day). Felt much better and then went from 1.8 to .3 TSH in 2 weeks (.2 is considered hyper). Now been told to take 50 mcg levo by regular physician and retest in a couple of weeks. Acupuncturist says 4 tabs iso daily should be fine.

Has anyone noticed that thyroid function improves once you go gluten-free and your gut starts to heal? I swear I've read reports of folks who have suffered from celiac undiagnosed for years and all their other health problems clear up once the gluten thing is figured out. Also, did any of you notice an initial period when you felt slightly worse before you felt better on the gluten-free? I feel like I have a number of good days and then just feel "off" regardless of what I've eaten. Not sure whether this is gluten-free, adrenal, thyroid or just "me" related. Any advice appreciated. Best, Cate

[georgie]

Cate, Do you have Hashimotos Thyroid ? The autoimmune one ? If you have that - the levels change , and your symptoms of hyper and hypo change - as the Antibodies attack. Its normal to have hyper and hypo symptoms - not all at once - but as 'episodes'. You can't treat Hashimotos by labs alone. You need a Dr that understands that, and how to treat you on symptoms as well as labs. TSH is a worthless test once you have Hashi's. It doesn't tell you if you are hypo or hyper at all. A better test would be Free T4 and Free T3 which show the levels of T hormones circulating in your body. T3 is the active one that gives energy, and T4 is the storage one. Many Drs still believe that everyone converts T4 to useable T3 - but that isn't that case. And you need to moniter your Antibodies - and suppress them. That usually is best when TSH is near to 0 as possible.

I take Armour which I had heard was vastly superior. My Dr tried me on T3 first ( she refuses to even use T4 meds), and after I made the switch to Armour - I felt much better. I also needed Adrenal meds. Have you been tested for that? The saliva test is the most accurate as it gives 4 different readings over the day. Can your acupuncturist order that ? www.canaryclub.com is one place. Isocort is very mild but a lot of people get help from it. Depending on your adrenal situation - you may need HydroCortisone which is a standardised med and more accurate to dose.

Eating Gluten makes me so fatigued now - that I nearly fall over for 3 days! Have you checked all your makeups , your soaps etc? I was Glutening myself everytime I went to the city and put makeup on. But I can now tell what that fatigue feels like as compared to fatigue when you need to raise the Armour dose. With Armour you start slow and raise slightly, each time the symptoms return - which is usually every few weeks.

Lots of info if you google - on Thyroid and Armour. A good place to start is here too - www.stopthethyroidmadness.com They have forums like this and that was helped me last year start my road back to health.

[dionnek]

I was hypothyroid for a few years before my celiac dx, and then shortly after going gluten-free I become hyper and developed a goiter and was then dx with hashimotos (not sure what the difference is) and now am hypo again (well, right now it's under control, but I seem to switch back and forth). I'm pregnant now so everything's all over the place

[georgie]

and now am hypo again (well, right now it's under control, but I seem to switch back and forth). I'm pregnant now so everything's all over the place

This doesn't sound right. What meds are you on ? Synthetics ? Hashimotos WILL switch back and forth if the meds are not stopping and controlling those Antibody attacks. You need to stop those attacks before they destroy your Thyroid ( and your life). And being pregnant its even more important to stabilise your Thyroid. Hashimotos Thyroid is an autoimmune disorder ( like Celiac) and the Antibodies will eventually destroy your Thyroid unless they are suppressed.

[dionnek]

I was on Levoxyl but am now on Synthroid (not sure why my endo switched me). I started with 50 mcg but now am alternating between 150 synthroid and 175 each day. I go back in a few weeks - what should I ask my endo about? I'm kind of confused about all of this stuff. My hypo started when I got pregnant 2 plus years ago and I've been on meds (synthroid or levoxyl) ever since. Then I went hyper 2 months after going gluten-free and stopped taking the meds but 3 weeks later was hypo again (then a few months later got pregnant).

[georgie]

I take Armour. I started with synthetics like you but soon wanted to switch, asked my Dr and she did. Endos are very conservitive and may not want to use a natural Thyroid med. If you go to this site it explains a lot. www.stopthethyroidmadness.com If you go to here Open Original Shared Link it has a list of Hypo symptoms that people had while taking Synthroid and other synthetics, and which went away after they switched to Armour. Its amazing - their labs were 'perfect' on Synthetics but they still had all those symptoms which miraculously vanished once they went onto natural Armour. This list was compiled from 1000s of patient stories. Some people do well on Synthetics and lead happy normal lives - and some don't. Its important to know that there is a safe, stable alternative. And once you reach your dose - you only need labs occasionally. That's how stable it is.

[Corkdarrr]

I was on Levoxyl but am now on Synthroid (not sure why my endo switched me). I started with 50 mcg but now am alternating between 150 synthroid and 175 each day. I go back in a few weeks - what should I ask my endo about? I'm kind of confused about all of this stuff. My hypo started when I got pregnant 2 plus years ago and I've been on meds (synthroid or levoxyl) ever since. Then I went hyper 2 months after going gluten-free and stopped taking the meds but 3 weeks later was hypo again (then a few months later got pregnant).

I am just now figuring out my thyroid after being dx hypo over 13 years ago.

Georgie pointed me to STTM, and it is a great site for information - with the obvious undertones of frustrated thyroid sufferers! I also tore through Mary Shomon's book, 'Living Well With Hypothyroidism.' By the end of it I was *literally* hopping mad that I'd spent the last 8+ years of my life taking Synthroid. I wanted to call up the doctor that took me off the combo with Cytomel and tear him a new one... Not to mention all the doctors for the last 8+ years who looked at my completely useless test results and kept telling me I was 'normal.'

I finally found a doctor that treats symptoms, not bloodwork results. I'm on a combo of armour and levothyroid, and we are adjusting the dosage as needed. I want to hug her every time I see her. It's only been a month or two, but I am already noticing differences.

Based on all that I've read, your endo probably switched you because the company that manufacturers Synthroid has an absolutely disgusting amount of power over the hypothyroid market.

Cate, in response to your initial topic, there is a HUGE connection between these three things. In my case in particular, my adrenals burnt out a long time ago - Probably due to heavy metal toxicity. This caused my thyroid gland to try and pick up the slack and burn out - Which caused the hypothyroidism. I am not celiac, but gluten intolerant. Based on the puzzle that is slowly being pieced together, my adrenal fatigue and hypothyroidism most likely agitated and strained everything else in my body until I finally realized my stomach shouldn't hurt all the time! Plus the link between autoimmune disorders is pretty strong (hypo, celiac, diabetes, etc...)

[georgie]

Georgie pointed me to STTM, and it is a great site for information - with the obvious undertones of frustrated thyroid sufferers! I also tore through Mary Shomon's book, 'Living Well With Hypothyroidism.' By the end of it I was *literally* hopping mad that I'd spent the last 8+ years of my life taking Synthroid. I wanted to call up the doctor that took me off the combo with Cytomel and tear him a new one... mad.gif Not to mention all the doctors for the last 8+ years who looked at my completely useless test results and kept telling me I was 'normal.'

I know. I was dx 30 years ago as 'borderline ' and told it didn't matter !!!! As the range has changed 2x since then and about to change again - it was probably TSH of 6. My Dr told me that it was too high, and that was making me tired as its like a car engine revving too fast - it wears out I never even saw the paperwork. The Dr didn't even know that high TSH is hypo !!. And if you read yahoo lists for Thyroid and Mary's site and STTM - there are 1000s like us !! And when shopping I can see people that are suffering Hypo. Its not just weight - you can see it in their eyes and attitude. People on Armour feel 'happy' cos they feel WELL ! All we can do is shop with our feet for a Dr just as we shop for other services. We are the ones in control of our bodies whether it is the food we eat or advise we take. The internet has given us knowledge and used wisely it can be a wonderful thing.

[dionnek]

well, I sure wouldn't be opposed to finding a new dr! I like my endo, but the staff drives me crazy. Do you know if Armour is safe while pregnant/breastfeeding? I will definitely ask my dr. about it when I go back in a few weeks, and I'll read up on these sites, and if she's not open to the "natural" meds then I'll start searching for a dr. that is. I never realized how serious this is - just figured it was another annoying thing I would have to live with my whole life. Thanks so much for the information - this board is priceless!

[georgie]

well, I sure wouldn't be opposed to finding a new dr! I like my endo, but the staff drives me crazy. Do you know if Armour is safe while pregnant/breastfeeding?

Absolutely. In fact - being HypoThyroid is VERY serious when you are pregnant and can cause all types of problems for the unborn baby. You must keep up with your treatment and Armour is the most bio identical to your own., available. A good place to start looking for a Armour Dr is to ask your local Compounding Chemist.

[Corkdarrr]

well, I sure wouldn't be opposed to finding a new dr! I like my endo, but the staff drives me crazy. Do you know if Armour is safe while pregnant/breastfeeding? I will definitely ask my dr. about it when I go back in a few weeks, and I'll read up on these sites, and if she's not open to the "natural" meds then I'll start searching for a dr. that is. I never realized how serious this is - just figured it was another annoying thing I would have to live with my whole life. Thanks so much for the information - this board is priceless!

So did I...doctors test irrelevant thyroid hormones and base their diagnosis on an inaccurate and outdated range...then when you tell them you're still feeling classic hypo they tell you that it's either all in your head, or that something else is causing it.

Finding a doctor that didn't think I was crazy has been the best thing I've ever done.

Also, make sure you always ask for a copy of the results. I am so angry with myself that it never occurred to me to see what 'normal' was. I just assumed they knew what they were talking about! Looking over my medical history from my recently fired doctor, the lab he was sending it to was using the incorrect range. And I was definately still hypo.

Georgie, I know what you mean. I see people out all the time and listen to people talk...I didn't see the change in me because it happened so gradually. But looking back I'm so much more....tired and worn out and almost hopeless than I was 10 years ago. Haha...I'm only 25. But seriously. I used to be a very happy and positive person. Being in a poor state of health just grates on you. And when it grates on you for so many years and coming from so many different directions.....it leads to what dionnek said - which echoes how I've felt for SO long. I, "just figured it was another annoying thing I would have to live with my whole life."

High five to being proactive enough in my own health that I've finally found my path to recovery!

Courtney

[Corkdarrr]

Open Original Shared Link

You can also go straight to their website! They have a physician locator.

This is the website that Mary Shomon started.

Open Original Shared Link

I found my doctor off this website (click on top doctors on the upper lefthand side). She has a list of patient recommendations a mile long, and now I know why! It also gives you the dates of recommendations. I initially tried calling someone who lived closer to me, but she had been out of practice for several years.

[georgie]

I found my doctor off this website

I have heard some stories about some of these Drs. Some seem to get on that list but are still anti Armour. How - I don't know. So always ask when you ring to make an appt what that Dr's thoughts are re treating HypoThyroidism. Ask questions, interview , and make sure that the Dr is happy to listen and work 'with you' as a team.

Also, make sure you always ask for a copy of the results. I am so angry with myself that it never occurred to me to see what 'normal' was.

I know. Its weird. I did the same thing and that's how my Hypo went so long undx. i just believed the first Dr. I never saw my results. I didn't know that HypoThyroidism was about numbers and lab ranges and borderline readings. I thought that Dr was always doing all he could to test me. Diabetes people always get their results as a number - why don't HypoThyroid people ?

[dionnek]

Thanks so much - I will check these sites out. Funny my very first endocrynologist 5 years ago (when I started trying to figure out all my problems) is on this top dr. list, although he is "no longer listed". I went to him b/c I heard he was the best in Atlanta, but he could never figure out what was wrong with me and never dx my hypothyroid - after about a year of wasting my time (and many tests later), I went to a new endo who immediately dx my hypo. Wonder why he is "no longer listed".....

[CaMaKe]

Cate, Do you have Hashimotos Thyroid ? The autoimmune one ? If you have that - the levels change , and your symptoms of hyper and hypo change - as the Antibodies attack. Its normal to have hyper and hypo symptoms - not all at once - but as 'episodes'. You can't treat Hashimotos by labs alone. You need a Dr that understands that, and how to treat you on symptoms as well as labs. TSH is a worthless test once you have Hashi's. It doesn't tell you if you are hypo or hyper at all. A better test would be Free T4 and Free T3 which show the levels of T hormones circulating in your body. T3 is the active one that gives energy, and T4 is the storage one. Many Drs still believe that everyone converts T4 to useable T3 - but that isn't that case. And you need to moniter your Antibodies - and suppress them. That usually is best when TSH is near to 0 as possible.

I take Armour which I had heard was vastly superior. My Dr tried me on T3 first ( she refuses to even use T4 meds), and after I made the switch to Armour - I felt much better. I also needed Adrenal meds. Have you been tested for that? The saliva test is the most accurate as it gives 4 different readings over the day. Can your acupuncturist order that ? www.canaryclub.com is one place. Isocort is very mild but a lot of people get help from it. Depending on your adrenal situation - you may need HydroCortisone which is a standardised med and more accurate to dose.

Eating Gluten makes me so fatigued now - that I nearly fall over for 3 days! Have you checked all your makeups , your soaps etc? I was Glutening myself everytime I went to the city and put makeup on. But I can now tell what that fatigue feels like as compared to fatigue when you need to raise the Armour dose. With Armour you start slow and raise slightly, each time the symptoms return - which is usually every few weeks.

Lots of info if you google - on Thyroid and Armour. A good place to start is here too - www.stopthethyroidmadness.com They have forums like this and that was helped me last year start my road back to health.

Hi. Thanks all for weighing in on the topic. I don't know if I have Hashi. I do know that I've had an incredibly stressful past 4 years. Divorce, remarriage, starting f/t work after raising kids, marital strife etc. Too much obviously. I have a great doc through an HMO who will do what I ask. I've not switched or asked for Armor yet. I'm on Isocort (2 tabs twice a day) from my acupuncturist and suspect that the adrenal support allowed the thyroid to get through my body better which is what caused my most recent hyper TSH level. I was on 150 levo with the isocort and went from 1.8 to .3 in two weeks. Am now trying 50 levo with the isocort to see if less thyroid support will make me stabilize. Was feeling fantastic last week and then it hit the wall again. I am losing weight on the gluten-free so will be keeping track of my TSH as well as my own internal feelings of how I'm doing. TSH isn't the best test I agree but limited to an HMO your options are what they are and I've had success prior in maintaining a stable level. I think my bod is just dealing with an awful lot just now and I have confidence that things will settle down. A lot of this is down to your own intuition with things. I was curious as to the whole connection with adrenal, thyroid and celiac. I think I have not handled stress well at different points in my life and that eventually kicked my thyroid and now this past difficult 4 years have exhausted my adrenals completely and now it's celiac (or at least gluten intolerance).

Thanks again all, Cate

[georgie]

suspect that the adrenal support allowed the thyroid to get through my body better which is what caused my most recent hyper TSH level

Quite possibily. If you have adrenal problems the thyroid meds like Armour don't work that well - so could be the same for all thyroid meds. But have heard a lot say that they need constant testing and changes of meds when they take synthetics. It could also be that your Hashis, which we suspect - isn't under control at all - and you are just having a hyper Hashis attack ie - an Antibodies attack.

TSH isn't the best test I agree but limited to an HMO your options are what they are and I've had success prior in maintaining a stable level

From what I have heard the TSH is not the best way to track Thyroid. Its far better to use a temp graph. www.drrind.com The basal temps tell if you are Hypo, and the ave of the 3 temps taken through the day tell if you have adrenal problems ( and also Hypo). My TSH is 0.01 at the moment and I am perfectly well - not Hyper at all. TSH is a lousy test and if you have Hashis its nearly worthless.

[CaMaKe]

Quite possibily. If you have adrenal problems the thyroid meds like Armour don't work that well - so could be the same for all thyroid meds. But have heard a lot say that they need constant testing and changes of meds when they take synthetics. It could also be that your Hashis, which we suspect - isn't under control at all - and you are just having a hyper Hashis attack ie - an Antibodies attack.

From what I have heard the TSH is not the best way to track Thyroid. Its far better to use a temp graph. www.drrind.com The basal temps tell if you are Hypo, and the ave of the 3 temps taken through the day tell if you have adrenal problems ( and also Hypo). My TSH is 0.01 at the moment and I am perfectly well - not Hyper at all. TSH is a lousy test and if you have Hashis its nearly worthless.

Interesting. I've been hypo for years. First got ill not long after my 13 yr old was born. Could have been gluten back then too but thyroid definitely. Was relatively stable until last year when stress caught up with me (I think). I'm cking with my doc about hashis. Intuitively I think it's adrenal and being on support as well as removing gluten are making my bod more receptive to thyroid meds. The gluten-free is not as hard as I thought it would be (luckily I like brown rice). But I'm still in the first 6 weeks and tend to feel quite empty and spaced out at times. I think this is normal and my system is definitely better and less hypoclycemic. I've been doing weekly tsh test and will be doing blood test for celiac as I refuse to go back on bad food for the gi biopsy. Have been meaning to get a new thermometer. Normal for me is 97.4 and has been for years. Will see what I can chart. Tx again, Cate

[CaMaKe]

Oh forgot to comment on the shampoos etc. Yes I switched over the weekend. Got Burts Bees and garnier fructise. All my old ones had wheat germ oil in it. Got rid of my long time face cream (oat) and am trying a burts bees product but it's too fragrant and is making my face blotchy. I've heard about savonniere so might try theirs. Am trying to find out if MAC cosmetic are gluten-free but they've not replied to me yet. Someone else on the forum sent me a couple of links which i need to checkout. Also got new shower gel and lipsalve. Didn't even think about the cosmetics part til I accidentally had some rice milk last Fri as well as licked some envelopes at work and got really ill. Then started thinking about things on my skin/lips. I don't have the dermatitis element (I don't think) but reckon that things soak through the skin as well as licking lips or touching face/hair/mouth.