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):

  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Members W/hypothyroid-> Help :/

cassP

By cassP
in Related Issues & Disorders

Recommended Posts

cassP Contributor
cassP
Posted

im hoping you members i have seen on here & have PMessaged will add your comments below and help talk me down from my Tidal Wave of emotions.... first off, thankyou so much for all the advice & info you've added to this forum- ive learned so much.. and it helped me to really understand my own relationship with Celiac... and the importance of revisiting my old thyroid tests (in 2006, my TSH was 4.5).... i already knew so much of what i should be eating, & over the past 6 months i have really learned everything to know about celiac testing... but these thyroid numbers ive learned on here from you.

so, i got blood drawn yesterday (thyroid)- and i knew that i would result in hypothyroid... but i wasnt prepared for the validation & the wave of emotions... the fear that i may have permanent damage from it being undiagnosed for so long... a possibility of low fertility in my few years left.. and the joy that my 6 years of Rhinitis, S.O.B., and anxiety & fatigue may be coming to an end... and i surely wasnt prepared for the nurse to tell me on the phone that my TSH was over 11..

i couldnt get off the phone fast enough- as soon as i hung up- i started sobbing... what does this mean? how bad is 11??? have i permanently damaged anything??? can my anxiety, sinusitis, slightly elevated cholesterol be helped? im just so overwhelmed by all the hopes & fears... and i just cant believe it was as bad as 11.... i almost felt like i was at "Death's Door" when she said "11"... wanted to run to the pharmacy NOW to pop a synthroid... but i think you cant take it till the morning??

so to you Hypo experts out there-> am i gonna be ok? are the thyroid meds Gluten Free??? do they all contain iodine?

just talk me down from the fear.... i am gonna be ok, right? the meds will rebalance me- and i havent done permanent damage, right?? :(

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

im hoping you members i have seen on here & have PMessaged will add your comments below and help talk me down from my Tidal Wave of emotions.... first off, thankyou so much for all the advice & info you've added to this forum- ive learned so much.. and it helped me to really understand my own relationship with Celiac... and the importance of revisiting my old thyroid tests (in 2006, my TSH was 4.5).... i already knew so much of what i should be eating, & over the past 6 months i have really learned everything to know about celiac testing... but these thyroid numbers ive learned on here from you.

so, i got blood drawn yesterday (thyroid)- and i knew that i would result in hypothyroid... but i wasnt prepared for the validation & the wave of emotions... the fear that i may have permanent damage from it being undiagnosed for so long... a possibility of low fertility in my few years left.. and the joy that my 6 years of Rhinitis, S.O.B., and anxiety & fatigue may be coming to an end... and i surely wasnt prepared for the nurse to tell me on the phone that my TSH was over 11..

i couldnt get off the phone fast enough- as soon as i hung up- i started sobbing... what does this mean? how bad is 11??? have i permanently damaged anything??? can my anxiety, sinusitis, slightly elevated cholesterol be helped? im just so overwhelmed by all the hopes & fears... and i just cant believe it was as bad as 11.... i almost felt like i was at "Death's Door" when she said "11"... wanted to run to the pharmacy NOW to pop a synthroid... but i think you cant take it till the morning??

so to you Hypo experts out there-> am i gonna be ok? are the thyroid meds Gluten Free??? do they all contain iodine?

just talk me down from the fear.... i am gonna be ok, right? the meds will rebalance me- and i havent done permanent damage, right?? :(

Relax and take a few deep breaths...you're going to be fine! I also have Hashi's thyroid and, while some damage is permanent, it isn't anything to fret over. I went 20+ years without a diagnosis, all the while my thyroid kept getting worse and worse. Once I nailed the Celiac diagnosis and went gluten-free, things began to improve and now, 5 years later, my thyroid is under control and my health is greatly improved.

All of the symptoms you mentioned can be related to a malfunctioning thyroid but once treated, they should disappear after a bit and you'll feel better. I am still on thyroid hormone for it but it's a natural one and taking thyroid hormone is not the same as taking meds. It's supposed to be there anyway and you are just replacing what your body doesn't make enough of. What kind of supplement you decide to use depends on your doctor and what works for you. I prefer the natural ones, like Nature-throid, as I noticed it had kick and seems to be working better than the synthetic for me. I would suggest reading up on thyroid hormones and how they work but I'll spare you that for now as I don't want to make your head spin. :blink:

If there is permanent damage to your thyroid, as I have, it really isn't a big deal....really. Life goes on and you will get better. I have more energy than many people without a thyroid issue so don't think you cannot return to normal. My TSH was 7 at time of diagnosis but results are not linear....some people cannot function at 7 (me) and others feel better than I did and they had higher numbers. All I can say is you need to find a doctor who is good at balancing a thyroid and that doesn't necessarily mean an endocrinologist, either. I go to a holistic MD who practices whole body medicine and not someone who just treats my thyroid gland.

Good luck to you and remember...you'll be fine! :D

burdee Enthusiast
burdee
Posted

so, i got blood drawn yesterday (thyroid)- and i knew that i would result in hypothyroid... but i wasnt prepared for the validation & the wave of emotions... the fear that i may have permanent damage from it being undiagnosed for so long... a possibility of low fertility in my few years left.. and the joy that my 6 years of Rhinitis, S.O.B., and anxiety & fatigue may be coming to an end... and i surely wasnt prepared for the nurse to tell me on the phone that my TSH was over 11..

i couldnt get off the phone fast enough- as soon as i hung up- i started sobbing... what does this mean? how bad is 11??? have i permanently damaged anything??? can my anxiety, sinusitis, slightly elevated cholesterol be helped? im just so overwhelmed by all the hopes & fears... and i just cant believe it was as bad as 11.... i almost felt like i was at "Death's Door" when she said "11"... wanted to run to the pharmacy NOW to pop a synthroid... but i think you cant take it till the morning??

Your 2006 TSH score of 4.5 was already high enough to consider hypothyroidism. In January 2003 the American Association of Endocrinologists advised labs (and docs) to revise their 'normal TSH range' from 0.5-5.0 to 0.3-3.0. So your 4.5 result was above normal and indicative of low thyroid. Did your doctor overlook or just dismiss that result?

Obviously your recent TSH score of 11+ indicates your thyroid function has deteriorated even more during the past 4 years. Your doc may want to also test your free T4, free T3 and TPOAb (antibodies for Hashimoto's thyroiditis, which is linked to celiac disease). A low T4 would indicate you need a T4 supplement. If you've been absolutely gluten free for several years, you may not show any Hashi antibodies.

Call your doctor back ASAP to schedule an appt. about your TSH results and get a thyroid supplement prescription. Your current TSH is high enough to necessitate a supplement. You won't die before that appointment and prescription. You've probably lived with low thyroid function symptoms for awhile. However, take the next available appointment.

Skylark Collaborator
Skylark
Posted

No need for tears. You'll be perfectly fine. TSH of 11 isn't even that high, although you probably feel like crud. It can go up to the 20s and higher. You are certainly not "at death's door". Believe it or not, high thyroid is much worse than low.

There is no permanent damage, except whatever autoimmunity has happened to your thyroid gland and as Gemini said, it's not a big deal. My grandmother had Graves' disease and her thyroid was inactivated with radiation. She lived to 98. My own thyroid is pretty much kaput - I'm on basically a full replacement dose of thyroid meds.

Oral thyroid meds replace what your body isn't making just fine. Your body will start to work normally when you get on the right dose of thyroid. It will take 6-8 weeks for everything to stabilize. The cholesterol will go right down, and your immune system will work better and sort out the rhinitis. You'll probably be less anxious too. Your mind will clear and you will be less tired.

The reason they tell you to take synthroid in the morning is because it can mess with your sleep. You want to take it with water on a totally empty stomach too. A really good time to take it is in the wee hours of the morning when you get up to pee. If you're really anxious about it, you won't do any harm taking your first dose right away but you might toss and turn a little tonight if you do.

cassP Contributor
cassP
Posted
  • Author

God BLESS u guys!!!!!! seriously- i have been STRESSED ALL DAY.. im so happy i could turn to you guys and not only find the best advice- but be relieved as well.. i cant wait to feel better-

Gemini- thankyou. so, it took u 5 years to feel better?? :/ i hope it's quicker, tho i know i should probably find some relief very soon

Burdee- thanku! ya, I KNOW, it was 4.5 years ago- but because it was "in range", nobody contacted me or said anything in follow up visits. and i didnt know anything about thyroid numbers back then... at all.. i only looked at my tests months ago because i thought well maybe i have a hypER because im always hot and anxious... i had no idea untill a month ago when another member on here sent me a link showing all the possible side effects of an undiagnosed hypo-> ive been GASPING for air & blowing my nose for 5 or 6 years now!!! and tired.. but there always seemed to be different questions & answers not including the thyroid. the nurse already called in a script-> 50mcg Synthroid. supposed to see GP in 2 months.. but i plan on calling for a referral to an Endocrinologist 6-8 weeks from now.. ive already started researching online- and it seems like it can be complicated finding the right meds & doses.. plus testing the adrenals to make sure they havent been damaged. oy

Skylark- thankyou for calming me down.. wow- people's TSH can read at 20... wow.. i was really scared at my number... and yes i have been feeling like CRUD for years- but i always thought it was because i wasnt getting enough sleep, or because i had so much CRAP in my life to make me depressed or anxious. people always tell me i look tired- but i normally look tired without makeup- or maybe that's just what i thought. i just beat myself up for not going to sleep early ... and ive been WRACKING my brain for 5 years trying to figure out what i have suddenly become allergic too... i hope the cholesterol DOES lower... it's only my LDL that's elevated.. and my Dad is always nagging me to get on a statin even tho im only 38.. he wont shut up about pushing the drugs on me (EVERY CONVERSATION)- yet he just shruggs it off when i say that he needs to get a Celiac Panel done <_<

anyways, thankyou so so much for support & advice & for the relief !! :) xoxoxo

ps- question 4 my best friend.. does it make any sense for her TSH to be 4.7 couple of years ago- and a month ago it was a "1" ???

cassP Contributor
cassP
Posted
  • Author

ps Burdee- thanks for explaining the hashimotos antibodies.. i was wondering exactly how people know if they've got a sluggish thyroid or specifically Hashimotos..

im going to ask for that test. ive been "wheat light" for over a decade but only 100% Gluten Free since July 1, 2010.. hope it will be an accurate test... tho im sure i already know what the results will be. thanku again for all the great info!

Gemini Experienced
Gemini
Posted

God BLESS u guys!!!!!! seriously- i have been STRESSED ALL DAY.. im so happy i could turn to you guys and not only find the best advice- but be relieved as well.. i cant wait to feel better-

Gemini- thankyou. so, it took u 5 years to feel better?? :/ i hope it's quicker, tho i know i should probably find some relief very soon

It's been 5 1/2 years since I was diagnosed with Celiac and it took about 3 of those years for all my symptoms and weird side issues to resolve. It can be very different with everyone. However, once I recovered from Celiac and the gut started absorbing well again, I cut my thyroid dose almost in half. Went from 150 mcg to 90. I don't think my thyroid miraculously healed, although my thyroid antibody count is now in the normal range, but it was the improved absorption and the effect that has on meds. I have a total of 4 autoimmune problems so it may have taken a bit longer to get everything humming along well again. :lol:

The only other advice I can give you is do not take any meds for anything (like statins) until your issues are under control because many can be caused by Celiac and Hashi's and will resolve once these are taken care of. That means following the diet without cheating intentionally and making your thyroid a priority. Your cholesterol should go down once the thyroid is working well again. But be patient....it can take a little while. The thyroid is a pretty amazing gland...it can really bounce back or with replacement hormone, you can go on to lead a normal life without the worry that you will die of some dreaded thyroid problem. I feel really good these days and I'm no spring chicken, either! :D

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

Burdee- thanku! ya, I KNOW, it was 4.5 years ago- but because it was "in range", nobody contacted me or said anything in follow up visits. and i didnt know anything about thyroid numbers back then... at all.. i only looked at my tests months ago because i thought well maybe i have a hypER because im always hot and anxious... i had no idea untill a month ago when another member on here sent me a link showing all the possible side effects of an undiagnosed hypo-> ive been GASPING for air & blowing my nose for 5 or 6 years now!!! and tired.. but there always seemed to be different questions & answers not including the thyroid. the nurse already called in a script-> 50mcg Synthroid. supposed to see GP in 2 months.. but i plan on calling for a referral to an Endocrinologist 6-8 weeks from now.. ive already started researching online- and it seems like it can be complicated finding the right meds & doses.. plus testing the adrenals to make sure they havent been damaged. oy

Hi Cass:

I hope you don't have problems with lactose, because synthroid contains the following inactive ingredients: "acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc." When Levoxyl didn't resolve my symptoms, my doc suggested synthroid. However, I declined when I learned synthroid contained a lactose ingredient, because I have a diagnosed dairy (casein) allergy.

SUE

.

cassP Contributor
cassP
Posted
  • Author

Hi Cass:

I hope you don't have problems with lactose, because synthroid contains the following inactive ingredients: "acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc." When Levoxyl didn't resolve my symptoms, my doc suggested synthroid. However, I declined when I learned synthroid contained a lactose ingredient, because I have a diagnosed dairy (casein) allergy.

SUE

.

well, i feel better OFF dairy... but i still eat it :huh:

i have an addiction. before i went on atkins 12 years ago- i used to have daily "D" (which i assume is the Lactose Intolerance, Because gluten usually gives me "C"). anyways... so far i feel no reactions to the Synthroid. but i am nervous about the iodine a little, cause i have DH.. its not bad.. but i had never had it before, and its been here since August... it's not too bad, but i dont want it to stick around forever ??

& i do not cheat now... not since July 1, 2010.

thankyou again so much... it's comforting to hear from those who really know what im going through! :)

Skylark Collaborator
Skylark
Posted

Don't worry. There is no free iodine in synthroid. The iodine in it is incorporated into the thyroid hormone.

cassP Contributor
cassP
Posted
  • Author

Don't worry. There is no free iodine in synthroid. The iodine in it is incorporated into the thyroid hormone.

:D thankyou skylark

cassP Contributor
cassP
Posted
  • Author

you girls still there?? i just got my copy of the results in the mail... im confused as to why my TSH is 11.39 when my T3 & T4 are very within the normal range ??? shouldnt my T3 or T4 be very LOW???

confused

my T4 dropped from 4 years ago, but very very very little... still normal

?

Skylark Collaborator
Skylark
Posted

TSH going up is the first sign of thyroid trouble. It means your brain is signaling for more thyroid, but your thyroid gland is already working at capacity. Basically, you have no capacity to increase thyroid production when you need more hormone. The thyroid medicine will take the pressure off your overburdened thyroid gland and then if your body needs more for exercise, or in times of stress, the thyroid can add whatever your body needs.

Those results are good. It means there is not a lot of autoimmune damage to your thyroid gland, you are converting T4 to T3 normally, and you'll probably only need a little synthroid to feel well again.

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to yellowstone's topic in Coping with Celiac Disease
      3

      Has someone experienced discrimination because of their illness?

      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:
    2. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

      It's too bad relationships end because of this disease, but I suppose that being healthy may be more important than being married or living with someone who isn't on board with the gluten-free diet.
    3. Flash1970
      - Flash1970 commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

      This is a huge topic. My ex husband didn't care. Even though I had my own area where his food wasn't allowed, I'd find crumbs. I was always constantly cleaning. I threw a lot of food away because I wouldn't be sure if he had contaminated it. It really showed what a narcissistic person he was and is. Now I'm in my own home. Much better. I do have dogs...
    4. Russ H
      - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number...
    5. suek54
      - suek54 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      46

      Shaking/Tremors and Off Balance

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly. I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,941
    • Most Online (within 30 mins)
      10,442
    Sensible
    Newest Member
    Sensible
    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

    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:  
    • Russ H
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Russ H · Posted

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Shaking/Tremors and Off Balance

      By suek54 · Posted

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      HLA-DQ2 POSITIVE it's nothing

      By Scott Adams · Posted

      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
×
×
  • 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.