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

Thyroid Issues And Nerve Pain


walker1965

Recommended Posts

walker1965 Newbie

My daughter is in her second year of college.  She was diagnosed with Celiac in Sept. 2011 after her brother was diagnosed.  She was a silent celiac with no digestive issues.   She's been gluten-free since Jan. 2012 and has her an apartment with another Celiac at college.  She's been struggling this semester with fatigue, dry skin, moodiness, coldness (she's in a warm climate) and now has nerve pain in one leg.  She is a dance major and is dancing for many hours every day.  

 

Here is her Thyroid test results from the past few years.  I can't make heads or tails about what is happening.  It's hard to manage this from afar!  She'll be seeing a PT next week about her leg pain.  Thoughts?  Suggestions for what else she should be asking or requesting?

 

Date       Dose of Med      TSH             FT4

9/2011           50               19.8            0.8

11/2011         67                4.99           1.0

2/2012                               4.05            1.0

10/2012                             5.24            1.0

3/2013                               4.23            1.0

12/2013        125               7.46             1.0

3/2014           112              0.03             1.6

5/2014                                0.03            1.5

9/2014            100             0.017           1.37 (?)


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

She needs to reduce her thyroid replacement again. She is running "hyper" which would not explain her symptoms. Usually you feel hot all the time, have muscle weakness, fatigue (same as hypo), weight loss, and are jittery ( hold out arms and look for tremors).

TSH should be between a 1 and a 3. The danger of running hyper is bone loss, damage to the heart, etc. She needs to build all the bone she can now, while she is young.

It takes time to adjust for meds. I take Armour Thyroid, 90 mg. daily but add another 30 mg. on top of the 90 mg. on Wednesdays, Saturdays and Sundays. Weird, but effective. Taking 120 mg. daily made me hyper (at least at this time, I had lots of hypo and hyper swings during menopause and that was hard to medicate).

She needs to be re-checked in six weeks. She should not take her morning dose on the day of her lab test. (Take it after if it is not too late in the day.)

As for her hypo symptoms, ask her about her sleep and food habits. She is away from home and like most kids, not eating well -- even if it is gluten-free.

nvsmom Community Regular

I don't know... I would want to see the range for her FT4, and maybe some FT3 results, before saying she is hyper, especially if she in on Armour or a T3 replacement.

 

I judge my med dose on how I feel and where my FT3 is at.  If it is in the 50-75% range of my lab's normal reference range then I feel pretty good regardless of what my TSH says.  The last of my labs that I saw said I had a TSH of 0.01 but my FT3 was at about the 70% point of my lab's normal range and I felt fine.  I did go hyper once, and my FT3 was a bit above 100% and my TSH was 0.33 - I felt pretty poorly.

 

Dry skin, fatigue and coldness sounds hypo to me.  It is possible to be hypo with a normal TSH if she is not converting T4 to T3 well. T3, or FT3, is the active hormone in the body. If she is not converting to T3 well, perhaps her reverse T3 (RT3) is too high, then she could be hypo even if her FT4 is perfectly fine.

 

I would request FT3, FT4, rT3, and TSH tests when she sees the doctor next.  It could tell her more.

 

I would double check her diet for gluten too.  Maybe some showed up in a product that she wasn't suspecting.  Perhaps she's been repeatedly glutened and is becoming symptomatic?  :(

 

Best wishes to her.  I hope she feels better soon.

cyclinglady Grand Master

Good advice, Nicole!

I forgot about the T4 and T3 variations as mine have never been out of range -- just my TSH and antibodies vary.

Thanks!

walker1965 Newbie

Thank you.  She is having another blood test this week, but I don't think they ordered the TH3 with it.  The range for the FT4 was .09-1.7 on all but the last result.  That test was done by a different lab and she didn't have the range for that result.  I find it interesting that you say her TSH should be between 1-3 since none of her results have ever been between 1-3.  The range for lab was .04-3.8.  Does this mean for 3 years her thyroid levels have been managed incorrectly or was the Dr. basing dosage on TH4.

 

She takes Levothyroxine.  Could part of her problem be the distributor of the Levothyroxine?  We live on the east coast but she attends school in the mid west.  

nvsmom Community Regular

If the range for the FT4 was 0.09-1.7, then her FT4 looks fine.

 

TSH ranges vary hugely.  My lab's normal range is (I think) 0.2-6.0, but I was still quite hypo at 2 point something, although my doctor wouldn't believe me.   :rolleyes: Most ranges are narrower such as 0.5 to 3 or 2.5.  Your daughter's lab's range is a bit broader than many.  

 

People with thyroid problems often find they feel their best when the TSH is near a 1 - that's just a generalization and not true of all Hashi's patients.  I do know that it is true for me. My TSH looks hyper (at 0.01), and it makes doctors nervous, but I am taking the Canadian equivalent of Armour (a natural T4 and T3 mix) and meds with T3 tend to suppress your TSH.

 

Your daughter's TSH is surprisingly low for for someone who is taking levothyroxine, which only contains synthetic T4.  I assume she's on Synthroid name brand?  Anyways, it seems that she is not taking too much because her FT4 is not elevated.  Knowing her FT3 may help - I would guess it will be near the high end of the range.  When you typed "TH3" and "TH4" did you mean Free T3 and Free T4 (FT3 and FT4)?

 

To me it looks like her thyroid is being managed pretty well... according to the labs.  Her TSH looks as though it could be a bit hyper but her FT4 doesn't support that.  I would say she looks good if she wasn't still having symptoms. Something is, whether it is celiac disease, Hashi's or something else.

  • 1 month later...
walker1965 Newbie

She saw her primary care doctor in early December and she was sent for an ultrasound on her thyroid.  10 days later (results were not entered as they should've been) we got the results.  She has a small 1mm nodule on on side and a 9mm nodule on another.  She has been referred to an endocrinologist but we aren't sure she'll be able to see him before she leaves to go back to college in a few weeks.  If not, we will make arrangements for her to see someone in her college town.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Well, do not freak out about the nodules. Mine were discovered about 20 years ago and have not increased in size. Thanks for the update!

nvsmom Community Regular

Glad she is in line to get into the endocrinologist.  :)  And ditto the nodules. Most people with thyroid issues have some small nodules - nothing to worry about.

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. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748

    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.