Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Thyroid Test?


holdthegluten

Recommended Posts

holdthegluten Rising Star

I want to get my thyroid checked and was wondering what i should tell me doctor i want tested. I know i need to get my tsh level checked, but what else??????? Anyone have any experience with yhroid screens?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ksmith Contributor

Go to www.stopthethyroidmadness.com There is a page on recommended labwork. You must get all of the tests in order to diagnose or rule out hypothyroidism (symptoms are important too!)

At the very least:

TSH

* Free T4 and Free T3 (note the word

Link to comment
Share on other sites
georgie Enthusiast

And when you get all those tests done - GET YOUR PAPERWORK. ! Don't let the Dr say 'normal' without you seeing and walking out of his office with the paperwork. What he calls 'normal' or what that lab calls 'normal' may NOT be 'normal' at all .......

Link to comment
Share on other sites
loraleena Contributor

Yes those are the right tests. When you get your results let us know what they are. A lot of times the docs say they are normal when they aren't. The TPO should be less than 20 by the way.

Link to comment
Share on other sites
micaela27 Newbie

and to add.... most progressive doctors these days are wanting to keep the TSH below 2 or 3... so if your TSH falls in the "technical ok zone" of .5 to 5.5 but is on the higher end within that range.... it's probably not normal and you likely have mild hypothyroidism. pay special attention to your antibody levels... i have Hashimoto's Thyroiditis and my antibodies are sky high. this is also an autoimmune disease, so it's worth getting checked out for sure!

Link to comment
Share on other sites
casnco Enthusiast
Go to www.stopthethyroidmadness.com There is a page on recommended labwork. You must get all of the tests in order to diagnose or rule out hypothyroidism (symptoms are important too!)

At the very least:

TSH

* Free T4 and Free T3 (note the word

Link to comment
Share on other sites
georgie Enthusiast
Do you know if they do Thyroid Antibodies in a routine screen?

Not here in Australia !!! I had to jump up and down and make a fuss BIG TIME to get them tested.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ksmith Contributor
Do you know if they do Thyroid Antibodies in a routine screen?

It isn't likely. You may have to beg...however my naturopathic doctor knew the strong connection between autoimmune diseases, so perhaps if you had the right kind of doctor...

Link to comment
Share on other sites
loraleena Contributor

I had to ask. Before they only ever did the TSH.

Link to comment
Share on other sites
darlindeb25 Collaborator

I had my first visit with an endo today and I feel he totally dismissed me. I know it's crazy to want to be told my thyroid is the problem, but I am grasping at straws now. Everything points to my thyroid and he just dismissed me with those words, "Your numbers are in the normal range!" He told me not to worry about my thyroid antibodies for now, that just because I have antibodies doesn't mean they will attack the thyroid--he said that is like a doctor telling me I have a uterus and need to see a specialist about being pregnant and just because I have a uterus does not mean I am pregnant. A tad chauvinistic, wouldn't you say? He told me I am at a high risk for thyroid disease because of my dad and son have hypo, because my antibodies are on the rise, and because I already have an auto-immune disease, yet not to worry and return in one year.

My blood pressure has always been 110/64, now it's changing. Was 120/72 at the doc in April, was 116/79 today. I can't regulate my body temp--as someone else said--I have hot flushes--not like hot flashes, this is different. My weight has increased, yet I have so many intolerances, it can't be the food I eat. I feel like I am going crazy--no answers.

I truly am disappointed in this doctor. What do I do now?

Link to comment
Share on other sites
georgie Enthusiast

Sorry Deb, You will just have to try another Dr. I have had 30 years of Drs like you had, and I agree its so upsetting. That is why I gave up for a while and suffered in silence.

But - don't do that. Seek and find another Dr. There are good ones out there. Most people I have spoken with say that Endos are simply the worst - so stay clear of them. Try a DO ( is it ?) or a Broda Barnes Dr. Do you have a Compounding Chemist near - as they often know good Drs that use Armour and bio identical hormone therapy.

Don't give up !!

I must update my signature. My 12 month check up scan on my Nodules showed they had all DISAPPEARED !! Armour made them disappear!

Link to comment
Share on other sites
Ksmith Contributor

I agree with Goergie. That endo can "F" off. Get a new doc. Maybe an naturpath? Check for doctors in you rarea that are from this list...

Open Original Shared Link

Link to comment
Share on other sites
darlindeb25 Collaborator

Thank you both. I know not to give up, yet believe me, it does occur to you at some point. Yesterday I told a co-worker that I have had it with everything, told her I was going back to eating anything I want and would just let diarrhea run my life again! Of course, I didn't mean it, it's all so frustrating. I can't be told anymore that it's all in my head! I feel terrbile all the time and it's just not fair. It was so frustrating watching this doctor--it was like his mind was set before he even spoke to me. Even with the bloodwork--he has that done before you see him. He told me to call for the results on Tuesday, but that he is sure they would be the same as the tests in April and I am well within the normal range. NORMAL for who???????? It's times like this that I wish there was a magic button that could allow another person to feel what I am feeling--then tell me it's normal.

Ksmith--thank you for the list of doctors--there are several there within 20 miles of me. Especially this one:

Edward Persuad of Medical Network of Long Island 516 937 7440 in Hicksville, Long Island, NY. A reader writes: "He not only treats allergies, but sensitivities to everything including hormones. No other doctor caught the fact that I was sensitive to t3 t4 and trh. After being treated for this, and numerous other things, my very complicated symptoms abated, something many doctors couldn't do to the extent that Edward has done. He's truly in this business to help people, not money hungry at all. He spends at least an hour each time I see him. Sometimes I spend $140 sometimes less, sometimes more depending on how many allergens I buy. He's treated my insomnia, cravings and constipation like no one else has. He uses something called immunology which is explained on Open Original Shared Link. He treated all bacteria, fungi, food, vitamins, environment allergies and hormone imbalances etc. Please recommend this very innovative dr. He has a superb reputation." (Added 2/03) I need someone who can help with the allergies and intolerances too. I may just give this one a call, of course, I do have to find out if he takes insurance--I do not have the finances to see anyone without my insurance.

Thank you.

Link to comment
Share on other sites
loraleena Contributor

So sorry you are dealing with this. Endos are the worst. I ended up using Dr. John Lowe in Colorodo long distance. He consults with my GP who is great. He has a web site that will answer a lot of your questions. dr.lowe.com. You definitley are Hypo esp. with antibodies.

Link to comment
Share on other sites
darlindeb25 Collaborator

My MD told me my thyroid numbers are fine. After 2 different tests, I asked to have my antiboidies tested--it came back at 69.9 with the range being <35. The lab doing all my tests is Quest. I was referred to an endo, who I felt just dismissed me. He did do a blood work too and if the time of day does mean anything, the blood was drawn at 2:30pm. He told me that he did not feel my numbers would be any different than in April. Well, they are different--the last test done last week on May 17.

Tsh 2.58 in April and this test 1.20---range being .40-5.50 mIU/L

Thyroglobulin AB was <20 with range being <20 IU/L--not done this time

thyroid peroxidase AB was 69.9 and this time <10 with the range @ <35

T4, Total was 7.9 and this time 8.1 range being 4.5-12.0 ug/dL

T3 uptake 29.4 and this time 28.6 range being 22.0-35.0 percent

T4, Free, calculated 2.32 and this time 2.32 range being 1.53-3.85 units

T3 Total was 140 none taken this time range being 60-181 ng/dL

I do not know what to do now. My temps range from 96.2-98.2, I can't control my body temp, I am clammy hot or cold, I am so fatigued and around 2pm I can hardly keep my eyes open, I sleep pretty much all night and wake up tired, my head hurts all the time--my legs both swell above my ankles, not at the ankles like normal, the left worst than the right, I get dizzy very easily and on and on. They tell me there is nothing wrong, so why do I feel so bad. Nasty panic attacks started again in the last year or so after being panic free for 5 years.

I am still thinking about going to a doctor here on the island in Hicksville. He deals with thyroid, allergies, intolerances--the whole body.

Anyone have any idea what could be going on with me?

Link to comment
Share on other sites
Ksmith Contributor

Hypothyroid with adrenal fatigue! Seriously. AF can make your labs look "not that bad" however, you tested positive for Hashi's which pretty much makes any other lab values moot. I'd get your adrenals checked ASAP, you sound just like me (or how I was, anyway). The temps bouncing all around is definately AF. I'd get an email from an ex-BF and my temp would drop down to 95. 30min later it'd be up to 98. I'd go for a bike ride...temps would plummet. Your body can't handle the stress because there is no cortisol pumping out of your adrenals anymore.

Link to comment
Share on other sites
darlindeb25 Collaborator

Thank you ksmith--I have been reading up on adrenal fatigue and it does make sense to me--now if I can only get a doctor to listen to me!!!!!

Link to comment
Share on other sites
loraleena Contributor

Just so you know thyroid levels can change daily. Your docs tsh level range is way off and old. They new range is .3-3. Your antibodies were at 69 sound like hashis. I have this and adrenal fatigue. Make sure if you get meds, stay away from synthroid. Use Armour or cytomel. Have you read the website I recommende? dr.lowe.com. So many answers there.

Link to comment
Share on other sites
darlindeb25 Collaborator

Thank you all and no, I didn't see the link before to Dr. Lowe, but Loraleena, I have it saved in my favorites now.

ksmith, you stated to me: however, you tested positive for Hashi's which pretty much makes any other lab values mootCan you explain this. The doc didn't say anything about Hashi and I would love to know what you mean. I need all the help I can get. I am going armed with guestions this time.

Link to comment
Share on other sites
loraleena Contributor

I can answer. I have hashis. YOu can have high antibodies which shows hashis, but have all other normal tests. ( I did). This is the autoimmune form of the disease. Your body is actually making antibodies against your thyroid. This is very common in celiacs.

Link to comment
Share on other sites
darlindeb25 Collaborator

This is the autoimmune form of the disease. Your body is actually making antibodies against your thyroid. This is very common in celiacs. I said this very thing to the endo I saw and he ignored me!!! I have got to find someone good to see.

Thank you.

Link to comment
Share on other sites
casnco Enthusiast

I just googled hashis and all I found was information on pot. Is there another name for this disorder?

Link to comment
Share on other sites
darlindeb25 Collaborator

Hashi's is Hashimoto's Disease.

Loraleena and Ksmith--can your antibodies rise and fall too? Can they change at different times of the day? Trying to learn all I can. I just found it so strange that when this new doctor saw me, he told me he knew that my numbers would not have changed from April and they were so different. Why didn't he catch that? Never mind, I know why, cause he doesn't care.

I have been reading everything I can find on thyroid and it's amazing the different opinions out there. I think my signature says it all though, if a patient says something is wrong, than something is wrong.

Link to comment
Share on other sites
Ksmith Contributor

Hi Deb,

yes, the antibody levels can change at any time. You have high antibodies when there is an attack on your thyroid. I am definately not an expert on this, but it's great that you are doing research! Good luck!

~K

Link to comment
Share on other sites
loraleena Contributor
Hi Deb,

yes, the antibody levels can change at any time. You have high antibodies when there is an attack on your thyroid. I am definately not an expert on this, but it's great that you are doing research! Good luck!

~K

Your doc is clueless. Endos are the worst. I used my regualar GP who works with Dr. Lowe. My antibodies have gone from 799 (before any treatment) to 299, 159, and now back up to 213. Still not at a high enough dose of meds yet.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,047
    • Most Online (within 30 mins)
      7,748

    mrschunt
    Newest Member
    mrschunt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
    • Katiec123
      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
    • cristiana
      @Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.
    • Shireen32
      Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ?  I had tests recently and this is what they say :Endomysial abs (IgA) -Positive  TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml What does this mean pls ??? How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms .   I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ? The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  . Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .  
    • knitty kitty
      Vitamin D deficiency.  Not enough Omega Threes. Another autoimmune disease like arthritis, maybe.    
×
×
  • Create New...