Sooo Tired...

[bbdailey]

So Ive been gluten free since May and had my ups and downs. Lately ive been extremely tired? 11 days ago I started an elimination diet and 4 days ago I stopped taking my thyroid medication(doctor determined I didnt need it as I have normal levels and was exploring that option) To be clear I was extremely tired a couple weeks before stopping the thyroid medication. Do you think the thyroid medication could be whats making me tired and it will take time to get out of my system? Or has anyone experienced something like this during recover from celiac? I havent been this tired in a long time and Im confused since I have been gluten-free/dairy/soy free for quite a while now...

[Takala]

Call the doctor back and report your symptoms. Do you have thyroid antibodies, you can have so- called "normal" thyroid levels and still be really messed up if it is auto immune type of thyroid disease.

What else did you eliminate from your diet ? People sometimes go overboard on that, also.

[bbdailey]

Call the doctor back and report your symptoms. Do you have thyroid antibodies, you can have so- called "normal" thyroid levels and still be really messed up if it is auto immune type of thyroid disease.

What else did you eliminate from your diet ? People sometimes go overboard on that, also.

I do have thyroid antibodies. Last time I checked my thyroid peroxidase antibodies were 250. Back in July I started taking the thyroid medication and started and elimination diet at the same time. After about a month I actually started feeling semi-normal for the first time in a long time. Then a couple days after a colonoscopy things got extremely bad for me(severe depression) so I stopped the thyroid medication. Things got a bit better over the next month but I wanted to feel normal again so I started taking the throid medication. I was on it for 9 weeks this time with no luck(actually felt worse) so with my doctors approval I decided to stop. Im thinking that it must have been the diet that made me feel better in the first place.

As far as the elimination diet goes I am only eating chicken, fish, fresh fruit and veggies and planters peanuts.

[Takala]

... no luck actually felt worse....

You will need to call the doctor back and discuss whether you need to have your thyroid levels monitored. You also must check and make sure any and all medications you take are really gluten free. Some unscrupulous drug manufacturers are actually putting GLUTEN in some of their thyroid medications as a binder or filler and will not guarantee gluten free status from batch to batch. Some of the colonoscopy prep meds are also not gluten free. When in doubt, assume that anything that is supposed to go in you is not safe, and make the giver re - affirm the status.

With auto immune thyroid disease you cycle up and down and up and down as you burn it out, once you're permanently too low on thyroid levels, you have to stay on thyroid medications, or you will eventually die from complications caused by the missing levels, as it affects the entire body.

With the diet, if you are going grainless, you will need to eat very carefully so as to replace the missing carbohydrates or you will fatigue out. Grainless AND low starch, you need to eat small frequent meals with lots of protein and FAT, as fat is a slow burning fuel. Good fats include, but are not limited to, olive oil, coconut milk and oil, avocado, nuts, nut milks, eggs, seeds, for some people butter or ghee and cheese, etc. Grainless and with starch, you would be eating more starchy vegetables to replace the missing grains, such as potatoes, sweet potatoes, beans, fresh or canned sweet corn, perhaps some forms of gluten free tapioca, etc.

[bbdailey]

Thanks Takala! Im thinking that the thyroid antibodies are more so from the celiac. I havent been formally diagnosed with celiac and I have been diagnosed with Hashimotos. That being said the doctor diagnosed me from APO antibodies(200) only. I have no goiters or nodules...my thyroid is not swollen...I am certainly not overweight(actually need to gain some)...and I am a 23 year old male. I had very severe symptoms and once cutting out gluten they started to simmer....the main issues Im trying to get over now are the fatigue, brain fog and depression(these symptoms were 20x worse b4 going gluten free.)

Does this sound like celiac disease could have caused some antibodies to be found in the thyroid?

I believe its celiac because like I said my thyroid levels are normal and I know that you can still have symptoms in the "normal range" but I dont think they would cause the severity of symptoms that I have experienced.

[Takala]

Celiac is notorious for causing other diseases, like Hashimoto's auto immune thyroid disease, which then usually gets diagnosed first. There is a sexual bias perception with physicians, they don't mean to most of the time, but if you're the less likely sex to get a disease, they tend to blow you off. Auto immune disease like celiac is more common in women, and I think the average time of length from complaint to diagnosis was 11 years.... You're lucky you at least have that thyroid diagnosis.

[pain*in*my*gut]

So Ive been gluten free since May and had my ups and downs. Lately ive been extremely tired? 11 days ago I started an elimination diet and 4 days ago I stopped taking my thyroid medication(doctor determined I didnt need it as I have normal levels and was exploring that option) To be clear I was extremely tired a couple weeks before stopping the thyroid medication. Do you think the thyroid medication could be whats making me tired and it will take time to get out of my system? Or has anyone experienced something like this during recover from celiac? I havent been this tired in a long time and Im confused since I have been gluten-free/dairy/soy free for quite a while now...

You say that your thyroid levels are normal....have you had ALL of your thyroid hormones checked? Many docs will only test your TSH and not free T4 and T3. Your TSH can be "normal", but your T4 and T3 can be low.

Additionally, many docs go by the old reference range for TSH (upper limit of 4.5 or 5 being normal), but in 2003 the American Association of Clinical Endocrinologists recommended the upper limit to be lowered to 3. Technically, I have been hypo for several years now...too bad my doc had no clue about the new range for TSH. I am on Synthroid now and starting to shake the constant fatigue.

My doc said it takes several weeks (at least 6) to months to get the full benefit of thyroid hormone supplementation. Are you sure you have given the meds enough time to work? If you have Hashi's, it might take some adjusting to get things just right.

[bbdailey]

I have had all the thyroid tests done. TSH last time was 2.2 and FT3 and FT4 were in the normal range. Like I said the first time I took the thyroid medication I started an elimination diet at the same time. About a month later I began to feel noticably better so I figured it was either the diet or medication(obviously). I then went off the medication due to feeling extremely bad about a week after my colonoscopy and went a month feeling pretty off. So I decided to take the medication again...same dose,50, and same brand, levothyroxine. This time I was on it for 9 weeks and didnt feel any better. I noticed feeling anxiety, fatigue, more constipation. So my doctor and I decided to stop the medication since it wasnt helping.

My thinking is that the first time I was feeling better due to the diet? Does this make sense?

Like I said Ive been diagnosed with Hashimotos and not Celiac but Im thinking that I have celiac and it caused the hashimotos. I had extreme symptoms both physically and mentally. I went for almost 6 months without being able to use the bathroom basically...and when I cut out gluten I slowly started to get back to normal. This would seem to be celiac right? I know I have hashimotos but Im not even hypothyroid yet so would you think all the digestive issues and mental/cognitive issues would be more likely to be linked to celiac over the thyroid?

[bbdailey]

This is a shot in the dark but does anyone think it could be mono? Ive been so tired lately and cant shake it!

[pricklypear1971]

Ok, let me see if I have this straight...

You were dx'ed with Hashis and have hypo symptoms (which can also be Gluten) but your thyroid test results are normal (except TPO)?

You have felt alternately better/worse while on the diet but vacillate on taking the thyroid meds?

Well, if going gluten-free helped then keep it up. It is thought gluten problems causes Hashis antibodies. If your test results for thyroid are normal, and meds don't help it could be a few things - 1) you don't need meds 2) you're on the wrong meds 3) you need to be on them longer and at a different dose.

I suggest reading on About.com's thyroid section. Lots of good info there.

Are you still off soy/milk/gluten free? Have you taken steps to prevent cc at home and when you're out?

[pricklypear1971]

This is a shot in the dark but does anyone think it could be mono? Ive been so tired lately and cant shake it!

There's a test for that!

[bbdailey]

Ok, let me see if I have this straight...

You were dx'ed with Hashis and have hypo symptoms (which can also be Gluten) but your thyroid test results are normal (except TPO)?

You have felt alternately better/worse while on the diet but vacillate on taking the thyroid meds?

Well, if going gluten-free helped then keep it up. It is thought gluten problems causes Hashis antibodies. If your test results for thyroid are normal, and meds don't help it could be a few things - 1) you don't need meds 2) you're on the wrong meds 3) you need to be on them longer and at a different dose.

I suggest reading on About.com's thyroid section. Lots of good info there.

Are you still off soy/milk/gluten free? Have you taken steps to prevent cc at home and when you're out?

I was diagnosed with Hashimotos and have symptoms that could be either from hypo or celiac. I believe it is celiac because I am not overweight and not yet hypo(my labs are normal).

Heres what happened: I was having terrible symptoms both physically and mentally and all the doctors said that I was crazy until I finally(after 7 months) got the endo to do an APO test that came up positive(200). He then prescribed me 50 levothyroxine and said I dont think this will help your symptoms at all. So I ended up buying and reading a book by Dr. K about the thyroid and started to cut out gluten. The physical symptoms started to go away and the mental symptoms started to simmer(I wasnt having panic attacks or Severe Depression) but I was still not feeling right. So after being gluten free for 2 months I went through a tough personal issue and decided I needed to fix myself ASAP so I started taking the thyroid medication along with a 2 week elimination diet. After I finished the elimination diet I figured I should cut out dairy and soy as well. Within a month I started to feel better(still not 100%) and actually got a glimpse of normality for the first time in a long time. Later that month I had a colonoscopy and about 5 days after it I became VERY depressed. So depressed I decided to stop the thyroid medication because I had no other lead as to what could be causing it. After about 2 weeks the severe depression had gone but I was still having major brain fog and not feeling well. So after a month of being of the thyroid pill I decided to try it again. This time I was on it for 9 weeks and actually probably felt a bit worse. So I ended up stopping and am trying to just stick with a strict diet. All the medication did was make me anxious, gave me really bad acne on my back, and made me constipated. So Im thinking that perhaps the medication has set me back in my recovery?

To answer your questions: I have felt progressively better being off of gluten(slowly but surely) until I threw the thyroid medication into the mix. Like I said I felt pretty good after being on the medication the first month-month in a half(Aug) but since then I havent felt very well.

Also Id like to add that after I became severly depressed after the colonoscopy I depended on my mother to cook meals for me and I also was eating a lot of processed "gluten free" foods that may have had some CC issues.

I have been of gluten since May. Dairy and soy since Aug. And just recently 2 weeks ago started that elimination diet that basically cuts everything out like corn/eggs/etc. Also I have been very careful trying to avoid CC. I believe I may have not been getting better when my mother was doing the cooking because of possible CC but starting 2 weeks ago I have been cooking everything and have been very careful.

[pricklypear1971]

Well, it sounds like you need to stock with something for a month and see what happens. I know you're desperate to feel better.

One thing you may look into is depression triggered by anesthesia. My step- grandfather goes into depression for 6 months every time he has it, and he also has thyroid disease. It may have just been unfortunate timing on that one.

[bbdailey]

I wondered if it was the anesthesia but I had an endoscopy 3 weeks before that and felt fine afterwards. I also wondered if the colonoscopy prep could have done it but its weird to me that the depression didnt come until almost a week after? Thats why I think it could possibly be the thyroid medication or maybe a combination of the two.