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bbdailey

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bbdailey Explorer
bbdailey
Posted

Im sorry to bring my pity party to the forum but I have just hit rock bottom. Ill spare you the details but I have cut ties with my ex-girlfriend who has been such an important person helping me through this period in my life. We broke up back in the summer but I have not been able to move on because 1. I havent moved on and gotten better myself due to this disease so I seem stuck and 2. She was almost the only person that I could look to for help when I needed it. Now she has a new bf and I will never move on if I continue to go to her for help. So I am desperate now to heal and help myself move forward in life.

So my questions relate to thyroid medication and the general healing process of celiac. I have not been formally diagnosed with celiac but have dx myself. In may I was diagnosed with Hashimotos disease having positive APO antibodies(200). But all my levels other than that were normal so I thought that couldnt be the reason I was having crazy symptoms(panic attacks, anxiety, depression, bad brain fog, muscle spasms, extreme constipation, heart palpitations, limbs falling asleep often, etc.) So I decided to go gluten-free in May and saw slow improvements over the first couple months. Then in july this is when the breakup happened and I was desperate to get better. I began an elimination diet and started the thyroid medication and within the next month I actually felt a glimpse of normality for the first time in forever. I could actually think in my head that despite this painful break up I would be ok and move on. Then after a brief few weeks of feeling better I had a colonoscopy and 5 days later became extremely depressed so I stopped taking the thyroid medication. After a month off the thyroid medication I was feeling a bit better but still not well at all so I figured it must have been the thyroid medication helping me out. So I began taking the medication again for a bit longer than the time before(9 weeks). I did not feel any better and possibly worse. So I stopped the thyroid medication and figured it HAD to be celiac and to stay on the diet and I will get better. I started a very strict elimination diet on dec first and stopped the medication dec 8th. I was feeling a tad bit better but anything like I was when I was feeling "normality" in Aug. That brings me to now and this whole personal thing thats going on. I currently feel terrible and I know that it will just take time to heal but I am worried and frustrated that If I am not on the right healing path then I will really struggle with moving on.

So again I apologize for bringing my personal problems to the forum but I dont have too many people to talk to that understand the mental state something like celiac disease can put you in. So my questions are...Has anyone ever had theyre progress delayed by taking thyroid medication when it wasnt needed?(or progess delayed from other wrong paths taken?) And also does anyone have recovery stories where they actually felt better only to get worse again and not see that normality again for a while down the road?

I truly believe that I have celiac and that the proper diet is the answer because I know for a fact that gluten has helped me tremendously. I just keep wondering if there is another answer because I was feeling somewhat normal in august and now 4 months later I still am trying to find that feeling again. The only thing I can think of is that the thyroid medication messed up my recovery somehow. Other than that I have no idea but I am desperate to find the answers. Again I am sorry for bringing personal stuff on here and sorry for how long this is. Any comments or advice would be greatly appreciated!

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Reba32 Rookie
Reba32
Posted

going on and off the thyroid medications is certainly NOT helping you in the least! Those are types of medicines that IF your doctor thinks you no longer need them, you need to WEEN yourself from them, not go cold turkey! And certainly don't just start back up again without proper doctor support.

It could well be BOTH celiac and hashimoto's. They are both auto-immune diseases and are commonly found together in a lot of people. But you really can't keep doing the back and forth, on and off the thyroid meds. This is really messing you up, regardless of your diet!

Stick to BOTH the gluten free diet AND the thyroid meds, and you'll get better. And check with your pharmacist to ensure that your thyroid meds are gluten free. I seem to recall someone else here in the forum was switched to a new generic and it had gluten in it, so of course it was making her sick.

bbdailey Explorer
bbdailey
Posted
  • Author

Thanks for your response Reba! I understand that I have been crazy going on in off I was just so desperate. My Doctor has been very good(unlike my previous ones) about listening to my input. Not to say that he lets me do what I want but he was ok with me trying the thyroid medication even though my levels were normal and when I wanted to go off the medication after 2 months he was onboard with that too. I understand that thyroid medication can take a while to adjust your body but since I felt better after 3/4 weeks on the thyroid medication the first time and didnt feel better after 9 weeks on the medication the next time I believe it had to be the diet that was kicking in(I started the elimination diet at the same time as medication and also continued to cut out soy and dairy after that). I believe that the thyroid medication may have lead to the problems I had right after the colonoscopy. I also dont think I needed it just because I felt very anxious while on it, it gave me very bad acne, and it made my BM worse after making lots of improvement when gluten-free.

I am hoping that soon(since the last of the thyroid medication is getting out of my body) I will see improvements through the diet. I am just so ready to move forward and if this diet doesnt do it then I will really struggle to get past this break up.

Metoo Enthusiast
Metoo
Posted

Thanks for your response Reba! I understand that I have been crazy going on in off I was just so desperate. My Doctor has been very good(unlike my previous ones) about listening to my input. Not to say that he lets me do what I want but he was ok with me trying the thyroid medication even though my levels were normal and when I wanted to go off the medication after 2 months he was onboard with that too. I understand that thyroid medication can take a while to adjust your body but since I felt better after 3/4 weeks on the thyroid medication the first time and didnt feel better after 9 weeks on the medication the next time I believe it had to be the diet that was kicking in(I started the elimination diet at the same time as medication and also continued to cut out soy and dairy after that). I believe that the thyroid medication may have lead to the problems I had right after the colonoscopy. I also dont think I needed it just because I felt very anxious while on it, it gave me very bad acne, and it made my BM worse after making lots of improvement when gluten-free.

I am hoping that soon(since the last of the thyroid medication is getting out of my body) I will see improvements through the diet. I am just so ready to move forward and if this diet doesnt do it then I will really struggle to get past this break up.

It sounds like you are seeing a regular doctor. I think given your doubt in the thyroid meds, you need to go see an endroconologist and take your test results. I don't think any endrocnologist in their right mind would suggest that the meds they prescribed were okay to not take....this gives me doubt about your doctor. Go see a thyroid specialist then you will KNOW for sure that its thyroid also, along with needing to stay gluten free.

bbdailey Explorer
bbdailey
Posted
  • Author

It sounds like you are seeing a regular doctor. I think given your doubt in the thyroid meds, you need to go see an endroconologist and take your test results. I don't think any endrocnologist in their right mind would suggest that the meds they prescribed were okay to not take....this gives me doubt about your doctor. Go see a thyroid specialist then you will KNOW for sure that its thyroid also, along with needing to stay gluten free.

Thanks Metoo! I actually went to an endocronologist in late April and hes the one that diagnosed me with hashimotos from just the APO test. He prescribed me 50 mcg levo and said I doubt this will help. I asked why I was having so many stomach issues and he said that I prolly had antibodies there too, but never said anything about celiac or other autoimmune diseases. He didnt care at all so I didnt go to him anymore. So I believe that celiac disease is the cause for the antibodies in my thyroid. I know that in the future I will more than likely have to take thyroid medication but for now it doesnt seem to be what is giving me the symptoms since all of the tests have been normal.

red island Newbie
red island
Posted

I was severely hypothyroid before I was diagnosed with Celiac, I had two really good weeks right after going gluten free then ups and downs. My hormone levels jumped around alot too and I had to keep a good eye on my thyroid levels . So I would think you could get your thyroid retested and see where you stand and check with your pharmacist to make sure there is no gluten in the brand of thyroid meds that you have now. I also had a rough stretch right after my endoscopy, dont know if it was the aftereffects from the drugs or just my body reacting to them messing around in there. Good luck.

bbdailey Explorer
bbdailey
Posted
  • Author

Thanks for your reply red island! My thyroid levels have seemed to stay consistently in range so thats why I have decided to go off them...i kinda started them out of desperation rather than doctors telling me i NEED them...so now that I have basically ruled out the thyroid as a problem I am wondering if the medication set me back in recovery...i stopped taking it on december 7 and I've heard it takes a while to get out of your body so hopefully I will start feeling better soon.

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Thanks for your reply red island! My thyroid levels have seemed to stay consistently in range so thats why I have decided to go off them...i kinda started them out of desperation rather than doctors telling me i NEED them...so now that I have basically ruled out the thyroid as a problem I am wondering if the medication set me back in recovery...i stopped taking it on december 7 and I've heard it takes a while to get out of your body so hopefully I will start feeling better soon.

When you say your thyroid levels have been in range, what levels are you referring to? If it's just the TSH that your doc is checking, that level can be normal when in fact your free T3 and/or T4 are off. Many docs also go by the old reference range of anything under 4.5 or 5 being normal. Several years ago, the reference range was lowered to 3 being the max normal number.

bbdailey Explorer
bbdailey
Posted
  • Author

I have had my TSH FT3 and FT4 all tested multiple times and they are in the normal range. My TSH is usually around 2. something and I cant remember what the FT3/4 were but they were in range.

Reba32 Rookie
Reba32
Posted

if you do in fact have Hashimoto's, as well as Celiac disease, then yes, going gluten free can improve your Hashimoto's, but it's not going to make it go away. I don't know if Hashi's can go into remission, anyone know? I doubt it would so quickly though!

However, treatment with thyroid replacement meds *can* send your thyroid into hyper, which is what it sounds like you were experiencing. Rather than stopping altogether, a lower dose should have been tried first. It takes a while to get the dosage right, you may need to play with it for a couple/few months. And have regular tests done, every 6 weeks or so, to look not just at the thyroid hormone levels, but at the auto-immune antibodies as well. I was on anti-thyroid meds for 18 months for Grave's disease. And only after 1 year of NO ANTIBODIES did my endocrinologist declare that I was in remission. Regardless of my thyroid levels, (which are regulated by the meds) it's the antibodies that determine whether the disease is still active or not.

bbdailey Explorer
bbdailey
Posted
  • Author

if you do in fact have Hashimoto's, as well as Celiac disease, then yes, going gluten free can improve your Hashimoto's, but it's not going to make it go away. I don't know if Hashi's can go into remission, anyone know? I doubt it would so quickly though!

However, treatment with thyroid replacement meds *can* send your thyroid into hyper, which is what it sounds like you were experiencing. Rather than stopping altogether, a lower dose should have been tried first. It takes a while to get the dosage right, you may need to play with it for a couple/few months. And have regular tests done, every 6 weeks or so, to look not just at the thyroid hormone levels, but at the auto-immune antibodies as well. I was on anti-thyroid meds for 18 months for Grave's disease. And only after 1 year of NO ANTIBODIES did my endocrinologist declare that I was in remission. Regardless of my thyroid levels, (which are regulated by the meds) it's the antibodies that determine whether the disease is still active or not.

I know that the Hashimotos will not go away but I think that its in such an early stage that it isnt causing any symptoms yet. Like I said my ranges are all normal and the antibodies arent that high either so I dont think that the thyroid could be causing all these symptoms. Its so frustrating considering I breifly saw improvement just to have all the symptoms return and I keep telling myself to stick to the diet and I will get better but everyday that goes by I start to wonder what else could be wrong with me.

bbdailey Explorer
bbdailey
Posted
  • Author

Its been a month since stopping the thyroid medication and although I seem to be feeling a bit better its not by much. Does anybody have any idea how long it could take for my body to readjust? Would it be back to normal after a month or could it take longer?

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