Hashimoto's Hypothyroidism Link With Celiac

[clee123]

I was diagnosed with celiac disease in Feb 2010 and Hashimoto's hypothyroidism about 15 years ago. I've been gluten-free since February and my doctor ordered a steroid (entocort/ budesonide)which I started about a month ago. I'm wondering if anyone else with celiac and hypothyroidism have found that they've had to decrease their thyroid meds after going gluten-free or beginning steroids. I've been consistently taking 175 mcg of levothyroxine for many years and all my labs showed that dose to be very effective. This time, my TSH came back very low (0.1) and my T4 was within normal range.

Thanks for anyone's thoughts

[cassP]

well- im very new to this hypothyroid- still learning from members here and elsewhere. i was just dx w/ hypo almost 7 weeks ago-

i dont have advice on dosage- im only on 50mcg synthroid right now- and i am NOT feeling better... in fact im feeling worse. im asking for a hashimoto's test & endo referral this week. i do have to say- ive never seen anyone on 175mcg.. seems like a lot (but im not a doc.).

and why did he order steroids??? they can be so problematic.

[Skylark]

175 is a high dose... if you're absorbing it. I suspect you are absorbing your thyroid medicine better now. A normal replacement dose is more like 125-150 micrograms.

[Twenty4isours]

I suggest trying to find a doctor that will treat you with Iodoral. Iodoral is Iodine, and iodine deficiency is the cause of Hypothyroidism. I think it's always better to treat the root of the problem rather then using synthetic hormones. I'm sure if you do some searching you will find a doctor that is familiar with the protocol.

[Skylark]

I suggest trying to find a doctor that will treat you with Iodoral. Iodoral is Iodine, and iodine deficiency is the cause of Hypothyroidism. I think it's always better to treat the root of the problem rather then using synthetic hormones. I'm sure if you do some searching you will find a doctor that is familiar with the protocol.

Actually iodine deficiency hypothyroidism is fairly rare and there is usually goiter rather than autoimmune antibodies. Hashimoto's is autoimmune and we have the antibodies to prove it. There is no alternative to hormones once your body has systematically destroyed your thyroid gland.

[laura4669]

I am hypothyroid, and was recently diagnosed with celiac. Regarding thyroid meds, Synthroid is only T4, and most people need a combination T4/T3 drug to feel better. Cytomel is a brand name of one type of T3 drug, which your doc can add in addition to the Synthroid. Synthroid and Cytomel are both synthetic drugs. Most docs just automatically give Synthroid, even though most people need the T3 also, which is the active thryoid hormone.

Another way to go is "natural" thyroid made from porcine gland. I am on a compounded for of T4/T3 equal to one grain or Armour. It has worked great for me. I have heard of some people needing less thyroid hormone after going gluten free. Hasn't happened to me yet, but I am hoping I can get off of the thyroid altogether some day.

[laura4669]

Oops, sorry Clee123, I accidentally replied to the post below yours from CassP. You have been on thyroid meds for years, and don't need info on that!

[Gemini]

I was diagnosed with celiac disease in Feb 2010 and Hashimoto's hypothyroidism about 15 years ago. I've been gluten-free since February and my doctor ordered a steroid (entocort/ budesonide)which I started about a month ago. I'm wondering if anyone else with celiac and hypothyroidism have found that they've had to decrease their thyroid meds after going gluten-free or beginning steroids. I've been consistently taking 175 mcg of levothyroxine for many years and all my labs showed that dose to be very effective. This time, my TSH came back very low (0.1) and my T4 was within normal range.

Thanks for anyone's thoughts

I have both Celiac and Hashi's and after 5 years gluten-free, I went seriously hyperthyroid. The reason was my dose of Levoxyl had always been 150mcg and now that I was absorbing again, the dose was way too much. I am now taking 90 mcg. of Nature-throid, a natural supplement with both T3 and T4. I am doing well with this dose. It is very common for people to have to lower meds once their gut is working properly again. I will say that I would rather be hypothyroid than hyper....not pleasant at all!

[burdee]

I was diagnosed with celiac disease in Feb 2010 and Hashimoto's hypothyroidism about 15 years ago. I've been gluten-free since February and my doctor ordered a steroid (entocort/ budesonide)which I started about a month ago. I'm wondering if anyone else with celiac and hypothyroidism have found that they've had to decrease their thyroid meds after going gluten-free or beginning steroids. I've been consistently taking 175 mcg of levothyroxine for many years and all my labs showed that dose to be very effective. This time, my TSH came back very low (0.1) and my T4 was within normal range. Thanks for anyone's thoughts

Anything that positively affects autoimmune conditions will change your need for thyroid supplements for autoimmune Hashimoto's. Celiac disease and gluten intolerance are highly correlated with Hashimoto's. Some experts say that the same gluten antibodies which attach the intestines can also attack any organ or system in the body and cause autoimmune conditions. So abstaining from gluten will definitely help heal some the Hashimoto's damage to your thyroid. Then you will need less thyroid supplement. Your labs suggest you need less levothyroxine supplement. What does your doc say?

I was diagnosed with celiac disease 6 years before Hashimoto's dx (although I had hypothyroid symptoms all my life). Because I abstained from gluten for 6 years before my Hashi diagnosis and was no longer damaging my thyroid with antibodies, I didn't think my thyroid need would change. However, I recently began taking low dose naltrexone to raise my white blood cell count. (It was abnormally low after fighting 8 different gastro infections during the past 4 years.) I had just gotten an effective level of thyroid supps, when I started having hyperthyroid symptoms. Because raising my white blood cell count was important, I lowered my thyroid supp level until my hyper symptoms decreased.

SUE

[burdee]

I am hypothyroid, and was recently diagnosed with celiac. Regarding thyroid meds, Synthroid is only T4, and most people need a combination T4/T3 drug to feel better. Cytomel is a brand name of one type of T3 drug, which your doc can add in addition to the Synthroid. Synthroid and Cytomel are both synthetic drugs. Most docs just automatically give Synthroid, even though most people need the T3 also, which is the active thryoid hormone.

Another way to go is "natural" thyroid made from porcine gland. I am on a compounded for of T4/T3 equal to one grain or Armour. It has worked great for me. I have heard of some people needing less thyroid hormone after going gluten free. Hasn't happened to me yet, but I am hoping I can get off of the thyroid altogether some day.

I started with Levoxyl, a T4 supplement, because that brand doesn't contain lactose 'fillers'. I felt better, but never completely lost my hypo symptoms (cold, tired, constipated). My doc increased my T4 dose (from 50mcg to 75mcg) and I overdosed (loads of hyperthyroid symptoms). I returned to my original dose, but also requested blood tests of my total T3 and free T3 as well as free T4 and TSH. Those tests showed my free T4 increased a little, TSH decreased a LOT (which is good), but total T3 and free T3 were quite low.

Like many other people, my body doesn't easily convert T4 to T3. My doc advised against natural (Armour pork thyroid), because we couldn't easily adjust the proportion of T4 to T3. I'm so sensitive to small increases or decreases in my thyroid supplements that I needed flexibility to get just the right proportion to eliminate my hypo symptoms without causing hyper symptoms.

I ended up taking 50 mcg T4 once daily and 5 mcg T3 2x daily, until I started a medication which positively affects autoimmune conditions. Now I need only 3.3mcg of T3 and no T4 daily. When I stop taking that medication, I may need to adjust my T3 and/or T4 supplements again.

[cassP]

Oops, sorry Clee123, I accidentally replied to the post below yours from CassP. You have been on thyroid meds for years, and don't need info on that!

thanks, ive already been studying it all for weeks, cause i feel like A$$. i see my GP on monday, and have my notepad ready. 2 Endos in my network do prescribe Cytomel & run more tests- i will be asking for them. i just want the right meds now- i dont want to wait any longer, ive been gasping for air, and sitting on the toilet for about 5 years now.

[cassP]

I started with Levoxyl, a T4 supplement, because that brand doesn't contain lactose 'fillers'. I felt better, but never completely lost my hypo symptoms (cold, tired, constipated). My doc increased my T4 dose (from 50mcg to 75mcg) and I overdosed (loads of hyperthyroid symptoms). I returned to my original dose, but also requested blood tests of my total T3 and free T3 as well as free T4 and TSH. Those tests showed my free T4 increased a little, TSH decreased a LOT (which is good), but total T3 and free T3 were quite low.

Like many other people, my body doesn't easily convert T4 to T3. My doc advised against natural (Armour pork thyroid), because we couldn't easily adjust the proportion of T4 to T3. I'm so sensitive to small increases or decreases in my thyroid supplements that I needed flexibility to get just the right proportion to eliminate my hypo symptoms without causing hyper symptoms.

I ended up taking 50 mcg T4 once daily and 5 mcg T3 2x daily, until I started a medication which positively affects autoimmune conditions. Now I need only 3.3mcg of T3 and no T4 daily. When I stop taking that medication, I may need to adjust my T3 and/or T4 supplements again.

sue- this is all great info for me. i think im like you. the first week i was on synthroid- 50mcg- i had some palpitations. ive also had a little more anxiety. but all my hyposymptoms ive had for 5 years have NOT improved at all....

QUESTION- with taking your T3 2x a day- how do you deal with food and meds/vitamins??? with the Synthroid, i take it 1 hour before i get up, so i can eat when i get up. and then i dont take any meds or vitamins for another 3 hours. (per instructions). please tell me the same instructions dont apply to T3... how would i ever eat, and take meds??? its been kind of hard adjusting for me, especially when i had horrific period cramps and had to wait hours to take any advil

ps- WHY is there so many instructions with the Synthroid?? including drinking a FULL glass of water?? there's no instructions with the birth control pill....

[laura4669]

I started with Levoxyl, a T4 supplement, because that brand doesn't contain lactose 'fillers'. I felt better, but never completely lost my hypo symptoms (cold, tired, constipated). My doc increased my T4 dose (from 50mcg to 75mcg) and I overdosed (loads of hyperthyroid symptoms). I returned to my original dose, but also requested blood tests of my total T3 and free T3 as well as free T4 and TSH. Those tests showed my free T4 increased a little, TSH decreased a LOT (which is good), but total T3 and free T3 were quite low.

Like many other people, my body doesn't easily convert T4 to T3. My doc advised against natural (Armour pork thyroid), because we couldn't easily adjust the proportion of T4 to T3. I'm so sensitive to small increases or decreases in my thyroid supplements that I needed flexibility to get just the right proportion to eliminate my hypo symptoms without causing hyper symptoms.

I ended up taking 50 mcg T4 once daily and 5 mcg T3 2x daily, until I started a medication which positively affects autoimmune conditions. Now I need only 3.3mcg of T3 and no T4 daily. When I stop taking that medication, I may need to adjust my T3 and/or T4 supplements again.

With Armour or Nature Throid, you cannot adjust the ratio of T4 to T3, however, with a compounded version you can. I use a compound pharmacist who actually creates the hormone pills for me in any ratio my doc orders. It just so happens that I am on the equivalent of one grain of Armour, but that could change if need be. Some doc don't like compounded hormones, because they say the exact amount of the active ingredient is harder to control than with pharma drugs. But they are working for me right now. Just FYI.

[burdee]

With Armour or Nature Throid, you cannot adjust the ratio of T4 to T3, however, with a compounded version you can. I use a compound pharmacist who actually creates the hormone pills for me in any ratio my doc orders. It just so happens that I am on the equivalent of one grain of Armour, but that could change if need be. Some doc don't like compounded hormones, because they say the exact amount of the active ingredient is harder to control than with pharma drugs. But they are working for me right now. Just FYI.

Thanks, I didn't know that. Right now, while I'm taking LDN, I only need a small (3.3mcg) daily dose of T3 without any T4. (I take generic Liothyronine, which doesn't contain any of my allergens in its fillers). I'm taking LDN to treat leukopenia, but LDN positively affects most autoimmune conditions. So I suspect it decreased my need for thyroid supplement, which was caused by Hashimoto's (autoimmune) thyroiditis, which is also linked to celiac disease. Being gluten free for 6 years also limited Hashimoto's damage, before I even began LDN. However, I don't know whether LDN will permanently improve my Hashi's condition or only temporarily reduce my need for thyroid supplements, while I treat the leukopenia.

[clee123]

I'm amazed by all the knowledge and experience here. I started this post and I appreciate all the thoughts shared. To answer a few questions, my doctor has ordered a decreased dose of levothyroxine and the reason my gastro- ordered the steroid is because it appeared I might have refractory sprue. I really like the idea of trying to go the compounded, more natural thyroid replacement route and we do have a compounding pharmacy nearby. I don't know if my doctor will have enough knowledge to prescribe, but I'm sure she'd be willing to learn. Does anyone know of any good resources to use to learn more about compounding the natural type of T3/T4 replacement? Also, has anyone switched over from using something like levothyroxine/ synthroid to the natural forms and if so, what was your experience? Again, thanks so much!!

[burdee]

I'm amazed by all the knowledge and experience here. I started this post and I appreciate all the thoughts shared. To answer a few questions, my doctor has ordered a decreased dose of levothyroxine and the reason my gastro- ordered the steroid is because it appeared I might have refractory sprue. I really like the idea of trying to go the compounded, more natural thyroid replacement route and we do have a compounding pharmacy nearby. I don't know if my doctor will have enough knowledge to prescribe, but I'm sure she'd be willing to learn. Does anyone know of any good resources to use to learn more about compounding the natural type of T3/T4 replacement? Also, has anyone switched over from using something like levothyroxine/ synthroid to the natural forms and if so, what was your experience? Again, thanks so much!!

How old were you when you were diagnosed with celiac disease? Some older adults' villae do not recover very quickly after abstaining from gluten. One study showed older adults continue to have lesions despite following a gluten free diet. Some docs consider that 'refractory sprue'. However, I personally would not risk the side effects of steroids to heal residual lesions. I had good success (symptom reduction) with taking L-glutamine to heal my intestinal lesions.

SUE

[clee123]

Sue,

I think you're probably right about the lesions healing slowly if at all, since I probably had celiac disease for a long time before diagnosis. I was 42 when I was diagnosed. I'm glad to hear you've had success with L-glutamine. I hadn't heard of that as an option. Did your doctor recommend it or did you hear from others? Is there a usual dosage and how do you know it's helped?

[laura4669]

I'm amazed by all the knowledge and experience here. I started this post and I appreciate all the thoughts shared. To answer a few questions, my doctor has ordered a decreased dose of levothyroxine and the reason my gastro- ordered the steroid is because it appeared I might have refractory sprue. I really like the idea of trying to go the compounded, more natural thyroid replacement route and we do have a compounding pharmacy nearby. I don't know if my doctor will have enough knowledge to prescribe, but I'm sure she'd be willing to learn. Does anyone know of any good resources to use to learn more about compounding the natural type of T3/T4 replacement? Also, has anyone switched over from using something like levothyroxine/ synthroid to the natural forms and if so, what was your experience? Again, thanks so much!!

Many, if not most, compounding pharmacists compound natural thyroid hormones on a regular basis, and they would be a great resource to explain how they do it. They can also be a good resource to find a health practitioner who is familiar with prescribing this type of supplement.