Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm Really Starting Hate The Word Normal :/


SleepyBunny

Recommended Posts

SleepyBunny Apprentice

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 :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

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.

SleepyBunny Apprentice

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?

pricklypear1971 Community Regular

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

pricklypear1971 Community Regular

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. Open Original Shared Link

Skylark Collaborator

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.

SleepyBunny Apprentice

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 :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

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.

SleepyBunny Apprentice

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.

GFinDC Veteran

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.

SleepyBunny Apprentice

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.