Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I'm Really Starting Hate The Word Normal :/
0

11 posts in this topic

I've been gluten free for about seven months. Towards the end of last year I found out I was hypothyroid and had a nodule. The nodule tested negative. I've been on 75mcg of levo for the past few months. Two of my main complaints that led to going gluten free was fatigue and c. When I first went gluten free within about 6 weeks they seemed to be improving but then slowly returned. When I went on levo I got very fatigued and broke out. The acne got better (always had problems with it). I'm still having trouble with sleep and still have c. I went to a new dr and had her run every test for my thyroid and whatever else she felt necessary. Her suggestion to my c.....eat more vegetables. :/ When did I say I didn't eat them? And she said to take probiotics twice a day. Tmi alert...in regards to my c the "train" seems to be ready but it just won't leave the station if you know what I mean. Lol I've been reading that a lot of people with c and fatigue seem to get a lot of relief from taking t3. I just want some energy :( and to be able to go. Well I got a call from the drs office (which I missed) they left a message saying my results are "normal" and that was it. So now I have to wait till tomorrow to get the actual results. If everything is "normal" what else can be causing this? :( Sorry for the long message. I'm just so tired of feeling this way. I wanna feel awake :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

There's a certain amount of fatigue that can be attributed to starting gluten-free, however, thyroid plays a huge part in what you are describing, typically.

I would insist on t3/t4 combo. If your current doc won't rx it, find one that will.

What result is normal? Tsh? What about free t3/t4? Get copies of all your labs and be prepared to find a new doctor.

You deserve to at least try combo therapy.

0

Share this post


Link to post
Share on other sites

I'll post the results tomorrow as soon as I get them. When I asked her if she'd prescribe be t3 if I needed it she said yes but then pretty much told me in a nice way that she's not going to risk her job prescribing it to me just cos I want it or think I need it. Or just because of maybe things people say online. They must threaten these drs if they prescribe it cos it seems like they are terrified to rx it. The past few times I've had my thyroid levels checked they just checked to ft4 and TSH. Big surprise huh lol. Last time after being on levo they were ft4 - 1.46 and TSH-1.13. This dr said she would test my t3 and for antibodies. What is a normal t3 level?

0

Share this post


Link to post
Share on other sites

I believe they want both free t3/4 to be midrange? You need the reference range, too.

0

Share this post


Link to post
Share on other sites

And there's so much info out there about different people responding to different thyroid meds - whether it's natural or synthetic or combo...that doc is ridiculously uninformed.

You need to dig up reputable publications and drag them in to her.

Then get a new doc after she grudgingly writes your rx.

This might help. It's an. About.com article that summarizes and compares two studies in support of patients preferring combo therapy. Your doc won't give a flip about the about.com article but the studies may be of interest. http://thyroid.about.com/od/thyroiddrugstreatments/a/t4t3combojcem.htm

0

Share this post


Link to post
Share on other sites




Which brand of thyroid? A board member found gluten in Paddock. The other brands should be OK, though some people don't tolerate the lactose in Synthroid.

0

Share this post


Link to post
Share on other sites

I believe I'm taking the Mylan brand. The past few days I've only been taking my levo every other day cos I thought for sure she would change it and I only had a few pills left. So I went to my new drs office to pick up my results.

TSI- 68

TSH- 2.0

FT4-1.41

FT3- 2.6 (range 2.3-4.2)

Thyroid Perioxidase AB- <10

Thyroglobulin AB <20

Ok so my TSH went up. But hey it's normal to her! I'm so frustrated. I haven't slept in like 21 hours. I don't know if this is partially from not taking my med everyday. Lately I feel like I've been sleeping on empty if that makes sense. I can't get in to see this dr till next week. I want to call my endo but they'll prolly make me come in and it'll prolly be a few weeks from now. And i refuse to pay $30-40 to sit there for 2 hours and have him say everything is normal. I want to call him and demand that he adjust my levo and start me on t3. I'm really getting desperate and ready to just give up. I'm tired of not being listened too. Any advice would be greatly appreciated. Please help :(

0

Share this post


Link to post
Share on other sites

What was the reference range on the TSI?

Mylan is fine. You can't skip pills though. You're even supposed to take your thyroid about the same time every day.

0

Share this post


Link to post
Share on other sites

The range was 140<. I haven't taken my levo for the past few days. I met with a dr that runs a program like the one from the author of Why Do I Still Have Thyorid Symptoms? When My Labs Are Normal. He knows I haven't taken it. He said its not good but I'll be fine. He's having me do a saliva test and plans to put me on Armour. I don't really want to take it but if it'll make me feel better I'll suck it up. I really hope this is going to make me feel better.

0

Share this post


Link to post
Share on other sites

C and insomnia are common reactions to food intolerances also. So, just something to keep in mind as it could be another cause. The tricky part is more than one thing can cause a symptom, and sometimes there are several things that cause a symptom. So eliminating just one cause may not resolve the symptom.

0

Share this post


Link to post
Share on other sites

This new dr is going to have me fast to detox and reset things. Then it looks like I'm starting an elimination type diet. So if there are any other food allergies I guess I'll find out. Really thinking the insomnia (very recent) maybe stress cos after getting the results from the dr and having her pretty much just say normal I had a breakdown. I'm tired of being tired and tired of people thinking I'm doing this diet for the fun of it. What's fun about eating pasta cheese meat and potatoes all your life just to be told you can't eat them or if you do you better understand crazy ingredient lingo. I will keep an eye on reintroducing foods and look for these symptoms. Hope this goes well.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,665
    • Total Posts
      921,655
  • Topics

  • Posts

    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,663
    • Most Online
      3,093

    Newest Member
    Steph0903
    Joined