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

Bloodwork Back On Thyroids


num1habsfan

Recommended Posts

num1habsfan Rising Star

Hello! my name is Dara and i am posting this for Lisa because she is having problems with her computer/internet!

"This morning I got a call from the doctors office to come in today because he wanted to see me. So i went this afternoon and I had gotten the bloodwork back on my thyroids. The diagnosis is: I DEFINITELY have hypothyroidism. He told me that TSH level is supposed to be between 0.5 - 9.0, well mine is 21.63. So he put me on Synthroid and in 6 weeks gotta redo the bloodwork to see if it improved. If anyone can give me advice or explain what it all means that'd be great, since I know nothing about thyroids until now"


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



Celiac.com Sponsor (A8-M):



georgie Enthusiast

Well firstly your Dr has it wrong re TSH. The recommended new range ( since 2003) for TSH is 0.3 - 3.0. You have probably suffered needlessly for years for your Dr to wait for a magic number to appear on his and the lab's old and out dated range.

Open Original Shared Link

Second - the TSH is a lousy test for HypoThyroid. Much better to test the levels of Free T4, Free T3 and Thyroid Antibodies to see what is actually happening.

Open Original Shared Link

And Synthroid is a synthetic T4 med. It relies on your body's abilty to convert it into usable energy ( T3). Now - the truth is - many folks don't do well on Synthroid. They don't convert. But cos the Drs never seem to test the FT3 level - they don't see this. Also for reasons unknown - the natural med Armour makes these folks recover much better. Dosing Armour works ina different way to dosing Synthroid , and you need to have a Dr that is experienced in this. Basically you dose until you are well and all HypoT symptoms disappear and wellness returns.

Open Original Shared Link

And if you switch the natural, 100 + year safety record, USP standard Armour .... you will need to understand this - cos many Drs don't.

Open Original Shared Link

mattj Rookie

Unfortunately, your doctor is only likely to dose you enough to get your TSH down below that 9, which is a ridiculously high upper range for TSH. You will still fall outside even the more widespread upper limit of 5, let alone the more recent recommended ranges.

loraleena Contributor

Georgie is right. The range is .3-3, it was never up to 9 only 5 in the past. Anything over 2 is suspect. I am on meds and my tsh is now very low (Looks hyper, but I am not). This is normal if on meds. The docs should be relying on how you feel when on meds. Also I would recomend taking Armour not synthroid. A lot of people do not get bettter on synthroid. Also not being on enough thryoid med can make you worse than before. Please read all info. at dr.lowe.com. Wonderful info and the docs I work with. Also check out stopthethyroidmadness.

loraleena Contributor

Georgie is right. The range is .3-3, it was never up to 9 only 5 in the past. Anything over 2 is suspect. I am on meds and my tsh is now very low (Looks hyper, but I am not). This is normal if on meds. The docs should be relying on how you feel when on meds. Also I would recomend taking Armour not synthroid. A lot of people do not get bettter on synthroid. Also not being on enough thryoid med can make you worse than before. Please read all info. at dr.lowe.com. Wonderful info and the docs I work with. Also check out stopthethyroidmadness.

num1habsfan Rising Star

OK so maybe I got the numbers mixed up...maybe it was 0.9 to 5.0. I was sitting there upset that I have yet another thing to add to my list of health problems and could have easily mixed up the 2 numbers. Thats not the whole point of me posting. He tested me for that T4 or whatever and that showed normal but this was way high. I have not had this problem forever, I remember be tested a couple years ago and it was normal. Also remember theres a HUGE differenece between American and Canadian health systems. We dont get to choose what we're tested for or when, and we'll never get detailed results on anything, and we have no choice on medication either.

Synthroid is not as bad as you guys are making it sound. I've heard from more than one person already who were on it and it made a huge difference. I'm not gonna try finding some natural thing, you have to realize I'm not from the US and there are not many options for anything here in Canada. For as much as I have been suffering in the last year and half, this is a relief that i finally have some medication to make me feel somewhat better, even if its not for my stomach.

I'm not trying to sound cruel...I know hypothyroidism isnt a huge deal, but its still a lot for me to handle. Like i said I've gone through so much in less than 2 years, and the last thing i needed was yet another disease added to my list.

I got this post made to get some help and hoped someone could describe hypo to me, instead I find nothing....

~ Lisa ~

loraleena Contributor

If Synthroid is working thats fine, but we just wanted to warn you of the things us and others have dealt with with doctors not knowing much about it this issue. Hypothyroidism is a big deal and can make you very sick. I don't think anyone down played that. We just want you to be as educated as possible regarding this health issue. Knowledge is powerful. Good luck.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Lisa, it is not true that there is no other choice than Synthroid here in Canada. Doctors haven't heard of Armour here. But they will prescribe desiccated thyroid, which is the same thing. I know, because that is what my doctor is prescribing for me.

And if your body is having trouble converting T4 to T3, then Synthroid is not going to help.

So, if you are not feeling much better soon, you will need to go back and ask to be prescribed desiccated thyroid (which is actually listed in the doctor's manual, while the brand name Armour is not).

Doctors in general are woefully ignorant about thyroid, and the dose you are getting is most likely way too low. You may, now that you know what one of your problems is, have to find a doctor who actually understands hypothyroidism and knows the correct dosages of desiccated thyroid. Plus, it is likely that you also have adrenal fatigue, which will need to be addressed in order for your thyroid medication to help.

And if you think that hypothyroidism is no big deal, you are very wrong. It can totally mess with your digestive system, by slowing it down completely. In fact, it slows down all of your bodily functions. It can completely ruin your life, because you have no energy at all.

Michi8 Contributor
OK so maybe I got the numbers mixed up...maybe it was 0.9 to 5.0. I was sitting there upset that I have yet another thing to add to my list of health problems and could have easily mixed up the 2 numbers. Thats not the whole point of me posting. He tested me for that T4 or whatever and that showed normal but this was way high. I have not had this problem forever, I remember be tested a couple years ago and it was normal. Also remember theres a HUGE differenece between American and Canadian health systems. We dont get to choose what we're tested for or when, and we'll never get detailed results on anything, and we have no choice on medication either.

Synthroid is not as bad as you guys are making it sound. I've heard from more than one person already who were on it and it made a huge difference. I'm not gonna try finding some natural thing, you have to realize I'm not from the US and there are not many options for anything here in Canada. For as much as I have been suffering in the last year and half, this is a relief that i finally have some medication to make me feel somewhat better, even if its not for my stomach.

I'm not trying to sound cruel...I know hypothyroidism isnt a huge deal, but its still a lot for me to handle. Like i said I've gone through so much in less than 2 years, and the last thing i needed was yet another disease added to my list.

I got this post made to get some help and hoped someone could describe hypo to me, instead I find nothing....

~ Lisa ~

Lisa, I think hypo or hyper, thyroid issues are a big deal...and become a bigger deal the longer it's out of whack. Now you may have an answer to some of your health issues...it's great that you will be treating it, and will hopefully have good results.

In terms of options for Canadian Health care, you have way more choices than you think. Yes you can request specific tests. You have every right to see the results and get a copy for your records. You have the right to have everything properly explained to you. And you have the right for a second opinion. Anything less, you should fire your doctor and seek out one that supports your needs and rights properly. I know that this is easier said than done, because physicians are in such short supply, but it is worth it to keep trying to find the right one.

Your options for drugs (in Canada) are virtually unlimited as well. We have access to all the same drugs...some are named or packaged differently, but are available nonetheless. Nice thing here is that were are not dictated by an HMO or other health plan that says we are limited in our choice of doctors or have to take generic forms of drugs.

You were given some great links about thryroid...do check out Open Original Shared Link it's a good resource. They have info describing hypothyroid, and options for treatment. At least give it a good read so that you understand the difference between treatment options.

Michelle

Jestgar Rising Star

Hi Lisa

I realize you have a lot to deal with, but once you've gotten used to realizing that it's part of your health regime now, hypothyroidism will not be a big deal. The risk are more long-term and only happen with untreated disease. Yours was recognized quickly and you're dealing with it so that's great.

I've taken synthroid for years and have never had a problem. Don't worry about demanding Armour until you've decided synthroid doesn't work - kind of the one thing at a time approach.

I know it seems like you're adding one more disease to your list, but really you've just defined, and are now fixing, one more issue. It's one step closer to being healthy.

Hang in there

Jestgar

Phyllis28 Apprentice

I hope you feel better soon.

num1habsfan Rising Star
Hi Lisa

I realize you have a lot to deal with, but once you've gotten used to realizing that it's part of your health regime now, hypothyroidism will not be a big deal. The risk are more long-term and only happen with untreated disease. Yours was recognized quickly and you're dealing with it so that's great.

I've taken synthroid for years and have never had a problem. Don't worry about demanding Armour until you've decided synthroid doesn't work - kind of the one thing at a time approach.

I know it seems like you're adding one more disease to your list, but really you've just defined, and are now fixing, one more issue. It's one step closer to being healthy.

Hang in there

Jestgar

Thank you for being so understanding..When i said that this was nothing/easy to deal with, I meant that compared to all the stomach issues I've been going through and trying to self-diagnose myself, this is minor compared to them. You also understand why I'm not gonna think about anything else but Synthroid, I need to stay on it for quite a while before i know how well it's working. And it was my doctor who said he'll be changing prescription if what I take now don't lower it enough...its a lot to deal with, but i can manage taking a pill a day, its better than having no treatment at all as its the case w/my other problems.

~ Lisa ~

~ Lisa ~

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.