Who Has Thyroid Issues

[cause&effect]

I am curious to know how many have thyroid or adrenal problems? Were they diagnosed before or after your celiac diagnosis.

I am a 44 year old male diagnosed in 2000 with celiac by a GI Dr. due to an extremely high antibody count for wheat gluten. I had suffered with stomach problems for several years and was so ill at diagnosis that I did not feel I could continue to function much longer. Stomach pain, diarrhea, cramps, neausea, weakness and constant hunger were my primary complaints, along with an assortment of aches pains and other odd little side effects. After going gluten free I slowly improved with digestive smyptoms eased but not even close to resolved. The GI doc said just stay on your diet you'll be fine, there's nothing else I can do for you. About 6 assorted docs said your test are normal you seem pretty healthy, you could almost laugh if you weren't so ill. I credit vitiamins and supplements that I had researched and took daily with keeping me from becomeing bed ridden.

I had gotten few reasonable answers to my questions to the doctors and decided to continue my own research. Eliminateing all sugars and most carbs for two months plus adding a high quality probiotic made more of a positive impact than anything else I tried. I eliminated dairy, beans and cabbage and still found most any high starch food caused some problems. Gluten free products still caused gas and discomfort if high in sugar or starch or were generaly hard to digest.

Five years later my diet is still very limited and minor to moderate digestive discomfort is still common along with soft to loose stools. Although most of the achs and pains are resolved or reduced, low energy, fatigue, cold intolerence, low body temp (96.4 in am)and reduced mental clarity are possibly worse over the last year. I'm on my secound endocrineologist as the first said my test results were ok, (doesen't that sound familiar) in spite of my results not all being normal and my list of associated symptoms. The lady endo I'm now seeing seems much more intrested in my case and said she would research celiac related thyroid conditions.

Potatoes and rice are my main starches and I am aware that many of us have multiple food intolerences. I find that I feel fairly well for several days then have a bad day with no variation in my diet. I also notice that energy, muscle fatigue, cold intolerence and a generaly poor over all feeling useually coincide with stomach discomfort. This led me to look further into the glandular issues as a common source of multiple system disfunction. Since the Thyroid is the motivateing factor behind every cells function in the body and mine are deffinetly not working efficiently, I'm looking at that as well as the adrenal glands. The Adrenal glands dirrectly effect digestive function and absorbtion so they deffinately need a closer look. I have long suspected some adrenal problems and the first round of test did show higher than normal cortisol.

So in consideration of glandular issues and being open minded to other possible paths of investigation I'm asking for your experiences, thoughts and theories related to Thyroid and glandular problems related to digestion.

Thanks in advance, Ron

[mommida]

Diagnosed with Hashimoto's Thyroiditis about 10 years before figuring out this gluten thing. A year after going gluten free I was cut down on my thyroid dosage, and expect I will be cut down in the dosage at my next re-check.

L.

[super-sally888]

Hi Ron,

Sorry this is a bit long...

I was diagnosed with Thryoid well before (about 6 years ago) I suspected a problem with Gluten (just the last month). Though I have had stomach issues all along (hyperacidity, C&D, Nausea, reflux etc etc... was diagnosed with IBS and just tried to ignore it - because after all IBS is caused by "stress" and is all in my head), even before the thyroid stuff. But I did find that when the thyroid is out the stomach stuff become much worse. Getting off gluten (though I am still tripping up) seems to be making a big difference.

Regarding thyroid: It is possible to have hypothyroid, even if the blood tests are 'normal'. In the old days drs would treat for thyroid problems on the basis of symptoms, not relying solely on blood tests. Now some drs rely solely on blood tests (or worst case just TSH), and some take a holistic approach. Great that your new dr seems like she will be one of these.

I initially had normal blood test results (although high by the current revised criteria (TSH for most people should be 2 or less, if one follows latest up-to-date info, however many labs still use values up to 5.5 as 'normal') and was never tested for antibodies (very expensive here). However, I had every symptom in the book and my dr at the time (since migrated to US) said my thyroid was slightly enlarged). She started me on a trial of thyroid med. We started very low dose "to support" the thyroid, with very regular blood tests, and targeting a TSH of 1.0. Well the TSH never came down till I was on about 50% replacement and over the years have had to increase up to 100% replacement to stay at that target, showing that whatever the problem causing this was, it was progressive. My TSH then looked normal, but my FT3 has always been below the range, until I went on to natural desicated thyroid (this year), now it is about mid range and I feel ok... (though the stomach stuff had been getting progressively and dramatically worse despite thyroid looking ok - hence the search and ending up here).

From what I understand: Testing needs to include antibodies, FT3, FT4 and TSH. Ideally TSH is at lower end of range, FT3 and FT4 tend towards upper end of range.

A good site for info on thyroid is the one by Mary Shomon (just type in her name and thyroid and you will easily find it).

If your doctor is open to it, see if she would consider a trial of thyroid meds (I believe that this is safe under medical supervision - starting off with a low dose, and monitored by blood tests & self monitoring your own heart rate and need to know what other symptoms to look out for - in case the dose is too high). Then see how you feel. For me it took about 4 - 5 months, and then suddenly I felt like the light had been switched on again. Colors became brighter....

I am not a doctor, so the above is just based on what have I read and what I have been doing with my doctor.. Do consult and work with your doctor - I have found what works best for me is that I be a very well educated patient and work in partnership with my doctor to find how I feel best. And this is still an on-going process - and I am so glad my endocrinologist is happy to work with me...

Hope you can work this out.

Sally

[Corkdarrr]

I've been hypo for about 13 years. And it seems to me that it's ALL related.

I have just started seeing a new and very competent doctor that seems to believe that my adrenals crashed a long time ago which is what caused my thyroid to crash which eventually set off my food allergies.

I've been gluten-free for about 5 months now - I was trying to find a trigger for migraines when I cut out gluten. Then I realized that for the first time in 10 years, i didn't have a stomach ache!!

I have found that a LOT of people on here have issues with the thyroid. It's nice in a way - an whole extra group of people to give advice!

[Corkdarrr]

I've been hypo for about 13 years. And it seems to me that it's ALL related.

I have just started seeing a new and very competent doctor that seems to believe that my adrenals crashed a long time ago which is what caused my thyroid to crash which eventually set off my food allergies.

I've been gluten-free for about 5 months now - I was trying to find a trigger for migraines when I cut out gluten. Then I realized that for the first time in 10 years, i didn't have a stomach ache!!

I have found that a LOT of people on here have issues with the thyroid. It's nice in a way - an whole extra group of people to give advice!

Courtney

[JenKuz]

I had hyperthyroid at 5 months (an unusual age). It was resolved after supportive medication, and since then I've had regular check-ups on my thyroid. I have had various symptoms for several years, including brain fog, lethargy, and of course stomach problems. My temperature averages 96.5 to 97. I also have a small nodule on the thyroid, currently being monitored by my doctors at student health services.

I've only been gluten free for about two months. But I suspect a problem with my thyroid. Although my blood tests have been in normal range, I think my body temperature is abnormal. The stomach symptoms have partially resolved, but I don't know how to explain the rest...just don't feel quite myself. I don't know if I need thyroid hormone yet; I have tried the glandulars, and they make me feel a little shaky. However, I'm definitely planning on keeping on top of things, to catch a problem sooner than later if it develops.

[Nevadan]

I have just recently encountered some hypothyroid symtoms (male, 61 yrs old, gluten sensitive(not likely celiac based on DNA testing), gluten-free/CF for 1.5 yrs). My main symptoms are low body temps and thinning hair. I have recently started taking Armour Thyroid in very low doses and so far my temp is increasing. You might want to take a look at the following website if you haven't found it already: Open Original Shared Link

George

[georgie]

I was dx with Hashimotos Thyroid this year after battling ill health for 30 years. I had blood tests that showed something wrong 30 years ago but my Dr said it was OK. I have suffered terribly with CFS, EBV, and Fibro pain.

So .... a huge Goitre growing this year, couldn't swallow food etc, and I changed Drs 3x to find an answer. http:www.stopthethyroidmadness.com saved me - really. It showed me what tests are needed ( FREE T4, FREET3, and Antibodies) and also described adrenal fatigue and how to test for that. It was during this time that my Dr tested for Celiac.

Yes - I believe it can be linked. Chicken and egg story really. But the most important thing to learn is the poor track record that synthetic Thyroid meds have - and the overwhelming documented evidence that Armour Thyroid is vastly superior. Its important to find a Dr that understands how to titrate the dose according to symptoms ( temps, BP, pulse, removal of Hypo ) and not to treat blood tests as 'biblical'.

From the experience of 1000s - they say that Endos are the worst people to see as they are very rigid in their ( outdated) training. A DO or naturopathic Dr is usually aware of Armour.

Armour was working wonderfully well. Synthetic meds came along and replaced it. Big Pharma ? Who knows. Its a big $ industry. But Armour will get those temps up if you are HypoThyroid. BUT - you need adrenal fatigue treated as well - and the best results are when an ADEQUATE dose is given to rest them - and then you can heal. Dr Jeffries book 'Safe Uses of Cortisol' is medical text book that you should read.

[Ursa Major]

I have adrenal burnout and thyroid problems as well, which no doctor ever recognized until recently (well, I went and told him, and he agreed). But I am in worse shape now than I was before starting treatment, and have to start from scratch. If you want to know why, check my blog on this site.

This afternoon my temperature reading was only 34.5 degrees Celsius (94.28 degrees Fahrenheit). That is considered in the hypothermia range!

Needless to say, I am very unwell. And yes, I believe that celiac disease has a lot to do with it.

[darlindeb25]

Thank you all, I now have ammo for my doctor's appt today. I was so sure that thyroid may just be part of my problems and yet they did a bloodwork up last week and tellme it came back normal. So, today I will ask my doctor to read it to me and explain the info you have just given me. I am so tired of having to tell the doctors what to look for and yet I realize that I am my own best advocate. Thanks again!

[Corkdarrr]

Thank you all, I now have ammo for my doctor's appt today. I was so sure that thyroid may just be part of my problems and yet they did a bloodwork up last week and tellme it came back normal. So, today I will ask my doctor to read it to me and explain the info you have just given me. I am so tired of having to tell the doctors what to look for and yet I realize that I am my own best advocate. Thanks again!

Deb, make sure when you get bloodwork done they test the FREE T3 and FREE T4. The standard testing of T4 and TSH are completely useless and the ranges are probably outdated as well.

I've been feeling hypo for the last seven years and have insisted on repeated bloodwork which all continued to come back "normal." If only I'd done my homework...well, 7 years ago, I would've known that the test they're doing isn't even the right one!

Good luck!

Courtney

[loraleena]

I have Hashimotos Hypothyroid and adrenal fatigue. I take cytomel. Just started Isocort ( a natural adrenal supplement). Make sure your docs check your Thyroid Peroxidase Antibodies. This was the only test that showed I had this. The TSH is very very innacurate. Your antibodies should be below 20. Endos are the worst. I do long distance consulting with Dr. Gina Honeyman-Lowe. She works in partnership with my regular doc. Her websit is dr.lowe.com. There is great info on there. Stay away from Synthroid at all costs. Most docs like to use this. Dr. Lowe reccomends Armour or Cytomel. Also I would recommend a 24 hour saliva test for adrenal fatigue. You can order through Great Smokies Labs and have your insurance pay later. Good luck.

[georgie]

Make sure your docs check your Thyroid Peroxidase Antibodies. This was the only test that showed I had this. The TSH is very very innacurate. Your antibodies should be below 20.

Loraleena , this is what happened to me. My TSH was normal and they did no other tests. After I read stopthethyroidmadness I went back and demanded ALL the tests. I could barely talk or swallow by this time. In the confusion ( Dr got very angry with me) she STILL didn't do Antibodies.

It happens all the time. My Mum has a husky voice now and her Dr tested her Thyroid and said it was normal. I got the paperwork yesterday. TSH ONLY was tested !!!! AND ...TSH = 2.5 !!!!!!!!! I am about to go back with her and fight that battle.

Ursula - that is a low temp ! Hope you feel better soon. Is it low and stable, or unstable ? www.drrind.com

Thank you all, I now have ammo for my doctor's appt today. I was so sure that thyroid may just be part of my problems and yet they did a bloodwork up last week and tellme it came back normal.

Deb, We wish we had a $ for every time we have heard this sad story. Get your results in writing.

[Ursa Major]

Ursula - that is a low temp ! Hope you feel better soon. Is it low and stable, or unstable ?

It is very unstable. My temperatures often range from temperatures as low as that one, to as high as 36 degrees Celsius (which is still way too low) within a day. In fact, the last temperature I took yesterday was 36. Even within a few hours it can be completely different.

And strangely, I seem to go by a two-day cycle. One day my temperatures are extremely low, and the next one much higher. My temperature chart looks like mountains (I connect all the corresponding temperatures, and use a different colour for the 1st, 2nd, 3rd and average measurements of the day, in fact my doctor likes my system so much, that he makes all his patients do it now). I just wished my 'mountain peaks' would ever go above 36 degrees!

[georgie]

It is very unstable. My temperatures often range from temperatures as low as that one, to as high as 36 degrees Celsius (which is still way too low) within a day. In fact, the last temperature I took yesterday was 36. Even within a few hours it can be completely different.

That cetainly still sounds adrenal , with Hypo of course. Have you thought of using a med for adrenal fatigue instead of herbal ? Lots of good reports from using HC in a theraputic dose ( not replacement dose) to heal the adrenals. "Safe Uses of Cortisol" Dr Jeffries. That is titrated too - to eliminate symptoms - just like Armour. You know your dose is correct when your ave daytime temps do not range more than 0.2. I know you said you can't handle Armour but even in a capsule form made by a compounding chemist ? I tried T3 alone to start with - but got much better results on Armour. For some reason - that extra T1, T2, T4 and calcitonin seems to work better than straight T3. On STTM they have heard that story many times and when I was confused they told me that. Months later - they were right.

The 2 day cycle may be your body throwing out some adrenalin to keep coping. Thats how we get adrenal fatigue in the first place. By trying to survive in a Hypo body.

[Ursa Major]

The 2 day cycle may be your body throwing out some adrenalin to keep coping. Thats how we get adrenal fatigue in the first place. By trying to survive in a Hypo body.

Now THAT makes sense, actually. I didn't say I can't tolerate Armour, only that it is a possibility that I can't, because I can't tolerate pork very well.

But I will ask my doctor to prescribe it as well as cortisol (on a short-term basis, just to help out the adrenal glands until they kick in again). Trying it can't be worse than trying those herbal supplements.

I need to get some energy back awfully soon, I am starting to babysit again in January. Three little boys, 1, 3 and 4 years old, three days a week. How will I cope without energy?

[georgie]

Ursula, If you go down the HC road make sure you actually take the right type ( hydro cortsisone is a close match to our own and is more 'bio identical' ), and take enough. STTM is finding a lot of fear re HC and its based on the old Prednisolone days. Pred is 5 x stronger than HC. The best way to heal adrenals is to take 'enough' as a dose too small may just create a dependence. The best chance of healing to take an adequate dose (worked by temps www.drrind.com ) to give those poor adrenals a really good rest. Everone has a diff dose but be aware that a healthy adrenal produces approx 40 - 50 mg of HC equive a day.

If the T3 isn't working either - try Armour. Don't hang around on a med that isn't working.Life's too short Do you know how to dose Armour ? Start slow and increase slowly,everytime the Hypo symptoms return ? Normal dose is 2 - 3 grains ( 120 mg - 180 mg ) but everyone needs to find what works for them. I take 4 grains. I needed HC as well. Just about to start weaning off. My temps are stable and normal, and I often forget a dose of HC for a few hours- which indicates to me that its time to start the weaning off process. Its as the girls at STTM describe. You just seem to 'know'. Not so strange really. We 'should ' know our own bodies. We just have to trust our instincts.

[cause&effect]

Now THAT makes sense, actually. I didn't say I can't tolerate Armour, only that it is a possibility that I can't, because I can't tolerate pork very well.

Thanks all for the interesting and valueable information. I am familiar with much of it. I have read the two thyroid books by Dr. Richard Shames and his wife and Fatigued to Fantastic by Dr. Tietelbaum. They advise that all thyroid test are not a 100% accurate reflection of what is actualy happening in the body. It's still worth haveing them as it's good to know your numbers. I have copies of my first two rounds of test and will get the third set. If you have medical insurance like I do you would like to get your moneys worth out of it by useing treatment provided by the system. I'm sure a Holistic Dr. would be more likely to treat the symptoms than take the easy way out and say the lab says you OK. I work for a large Hospital and my coverage does not list any alternitive medicine doctors and gives no out of plan coverage. I am hopeful the endo will see a need to try Cytomel or Armour and insurance will cover, but even if she agrees to a trial and I have to pay out of pocket I will go ahead with it.

Mary Shomon does have a great site with very good info. That's where I found my endo doc thru recomendation by other patients.

Concerning Armour dessicated thyorid and other natural glandulars I have read that it takes three to four weeks for the body to begin to even out and normalize so you have to bare with some discomfort as your body adjust.

I certianly understand that I am my own health care manager and the traditional health care system is a set of tools that you must be educated about and undrstand how to use to get appropriate treatment.

[georgie]

Mary Shomon does have a great site with very good info. That's where I found my endo doc thru recomendation by other patients.

Concerning Armour dessicated thyorid and other natural glandulars I have read that it takes three to four weeks for the body to begin to even out and normalize so you have to bare with some discomfort as your body adjust.

I certianly understand that I am my own health care manager and the traditional health care system is a set of tools that you must be educated about and undrstand how to use to get appropriate treatment

Good luck ! You can be made to feel a hypohondriac by some Drs - so research well, and be forewarned. Its sad that such a good system of patient care that was actively used for 50 years,has been lost by a whole generation of Drs.

It can take a long time to titrate the Armour dose, the HC dose ( if needed), and heal. 12 months perhaps. I am 6 months into my treatment plan and am only just now seeing the good temps, and health. Try to be patient. You may find that your Armour meds heal your body so well that other meds like cholesterol or BP may not be needed.So $ savings there.Armour may end up saving you money ....

My hubbie( also Hypo) has not needed his Diabetes meds since starting Armour - believe it or not. And no longer takes sinus meds. Of course - always consult with your Dr before stopping or changing meds.

[kelliac]

I have Hashimotos Hypothyroid and adrenal fatigue. I take cytomel. Just started Isocort ( a natural adrenal supplement). Make sure your docs check your Thyroid Peroxidase Antibodies. This was the only test that showed I had this. The TSH is very very innacurate. Your antibodies should be below 20. Endos are the worst. I do long distance consulting with Dr. Gina Honeyman-Lowe. She works in partnership with my regular doc. Her websit is dr.lowe.com. There is great info on there. Stay away from Synthroid at all costs. Most docs like to use this. Dr. Lowe reccomends Armour or Cytomel. Also I would recommend a 24 hour saliva test for adrenal fatigue. You can order through Great Smokies Labs and have your insurance pay later. Good luck.

Also have/had thyroid problems. Started getting goiters in early 20's. Was prescribed anaprox/naproxen for inflammed thyroid. Lived on the stuff. Felt great for the first time in years. They (goiters) would come and go, first seasonally, then monthly. Eventually had difficulty swallowing. Docs felt my neck and would say "feels normal." Labs were always "normal" at that point as well. Later learned that the thyroid tries to maintain it's levels and even though it may be "sick" you wouldn't know it by labs.

Eventually had goiter that didn't go away. Sent for uptake studies, xrays, CT's, sonograms. All tests came back Hashimotos/Mixed Thyroiditis/Graves. Sono showed thyroid grew down my chest on the inside. Too large for surgery. Had ablation. Been on synthroid (every dose imaginable) ever since. Can you tell me why you should stay away from synthroid at all costs?

Endos/Rheums have since explained that the thyroid disease was related to the untreated celiac whereby inflammation from the intestine caused the chain reaction that in turn caused inflammation throughout the body and eventually in the thyroid. Mother, sister, father-in-law all have had ablation or surgery and celiac disease. So I'd vote for thyroid probs with celiac!

[georgie]

Been on synthroid (every dose imaginable) ever since. Can you tell me why you should stay away from synthroid at all costs?

Its a synthetic med that only gives you T4. Armour is a natural med containing the closest set of T hormones to what we make ourselves. T1, T2, T3, T4 and its also got calcitonin to prevent Osteoporous and some say reverse it. If you had Armour at the beginning of your Goitre trouble you could probably have avoided all your subsequent problems and surgery. It shrinks Goitres. You say you have been on every Synthroid dose imaginable. I guess you mean that your levels are unstable and your Endo keeps testing you. Armour doesn't work that way. You get to your correct dose and that's pretty well it. A fairly big name Dr in UK has been on Armour for 40 years and has never had blood tests since. I am not saying that here ! But it illustrates how a natural med works.

If you go stopthethyroidmadness and check out 'Symptoms of Hypo' you will find a IRONIC list of at least 68 symptoms that people have reported went away AFTER they stopped taking Synthroid and when they took Armour instead. Get that ? These people were on Synthroid with perfect lab numbers but still had all those symptoms.

[cause&effect]

Does anyone know the science behind this question, or atleast has an answer.

? I have read that t4 produced by the thyroid is not converted to t3 until it reaches the cells where it is needed. How or why is it that the Armour desicated thyroid in known to contain active t3 as well the other t hormones? Do pig thyroids produce high levels of t3 while humans produce primarily t4?

[georgie]

? I have read that t4 produced by the thyroid is not converted to t3 until it reaches the cells where it is needed. How or why is it that the Armour desicated thyroid in known to contain active t3 as well the other t hormones? Do pig thyroids produce high levels of t3 while humans produce primarily t4?

I don't know about the science bit but know this much. Pig thyroid is vey similar to own own. In the early days of heart ops they often used pig's valves. The biochemistry is very similar. The ratio of T4 to T3 in Armour is approx 4 to 1. 36mcg & 9 mcg ??? seems to ring a memory chord.

The problem with T4 only meds is that not everyone can convert T4 into active T3. The original testing for Synthroid was done on male medical students. Now they are finding that many people have a poor T4 to t3 conversion. Often women.

So .. some people that take synthetic T4 as well as synthetic T3 do feel a bit better than just T4 meds alone. But for some reason they do even better on Armour. A few Drs are wondering if the T2 and T1 has more effect than understood.

I am sure there is plenty on google if you search. ;)This one has some info.

Open Original Shared Link

[emcmaster]

Me!

I have auto-immune thyroiditis/Hashimoto's thyroid. I was diagnosed with hypothyroidism 7 years ago and then again last year, which was before my celiac diagnosis.

[cause&effect]

Thanks for the link to STOPTHETHYROIDMADNESS That is possibly the best patient advocacy site I have seen yet. It contains a lot of interesting and valuable information. I will be reviewing everything there as time premits. Again a big Thanks!