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

Hashi's?


Victoria1234

Recommended Posts

Victoria1234 Experienced

So I was googling my symptoms I still have after being gluten-free for 9 years and came up with Hashi's.

 

symptoms

chronic c, even with extra magnesium citrate

feeling tired all the time, despite using cpap for sleep apnea very succesfully

 muscle weakness and joint stiffness, my lower back hurts so bad every day

Hair loss

memory lapses (getting worse)

Dry skin

im freaking cold all the time. Ac is killing me this summer. 

High cholesterol, the bad one (been bad my whole life)

Depression and low motivation to do lots of simple life tasks

tendency towards anemia (my annual physical didn't check so I don't know current value)

my TSH is 2.590 uIU/mL    0.600-3.300 uIU/mL

 

Is there anything I can do at home to help these things? Should I share this with my doctor? I have a new one who doesn't know me well at all. What do I say?

thanks for any advice and feel free to ask questions!

 

 

 

 


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

What would be helpful, Victoria, is to have a full thyroid panel done because you cannot diagnose anyone with Hashi's without a full panel.  It is more important to see what the actual hormone levels are than the TSH. Those would be Free T3 and T4.  You can have low hormone levels and normal TSH.  Your TSH is not too bad but if it starts to climb any higher, that would be cause for concern for Hashi's.  At least your lab seems to use the newer ranges for testing.  Many labs use outdated ranges that go to 5.00 for a cutoff. When my TSH was a 7, I could barely drag myself out of bed in the morning.

I have Hashi's and your symptoms are a laundry list for it and Hashi's is very common with Celiac Disease.  You can start having Hashi's symptoms long before the blood work goes off.......like Celiac.

Victoria1234 Experienced
24 minutes ago, Gemini said:

What would be helpful, Victoria, is to have a full thyroid panel done because you cannot diagnose anyone with Hashi's without a full panel.  It is more important to see what the actual hormone levels are than the TSH. Those would be Free T3 and T4.  You can have low hormone levels and normal TSH.  Your TSH is not too bad but if it starts to climb any higher, that would be cause for concern for Hashi's.  At least your lab seems to use the newer ranges for testing.  Many labs use outdated ranges that go to 5.00 for a cutoff. When my TSH was a 7, I could barely drag myself out of bed in the morning.

I have Hashi's and your symptoms are a laundry list for it and Hashi's is very common with Celiac Disease.  You can start having Hashi's symptoms long before the blood work goes off.......like Celiac.

Thank you!

ive never just called a doctor and ask for a particular test... how do you do this? Do you have to convince them it's necessary first?

i would love for these symptoms to resolve, as I've had a lot of them my whole life. Until I read a lot here, I never thought they weren't just, well, normal.

my mom had problems with her thyroid. Had it removed in fact. 

icelandgirl Proficient

Hi Victoria!

Gemini is right, you need a full thyroid panel in order to really see what is going on with your thyroid.  The remaining tests are Free T3, Free T4, TpoAb and TgAb.  The last 2 are antibody tests.  Ideally, your TSH will be around 1 and the Free #'s will be in 50-75% of the range.  

I feel terrible with a TSH where yours is.  Mine is best very close to 1.  Thankfully, my endocrinologist doses based on symptoms!

Start by asking your Dr for the full panel.  Give her all of your symptoms as well as your mom's history.  Hopefully, she is willing to order them for you.  Many Drs will only order TSH or that and Free T4, but you really do need all of them.

This site is a great resource for all things thyroid:

Open Original Shared Link

Good luck and please let us know how it goes!

Victoria1234 Experienced
2 hours ago, icelandgirl said:

Hi Victoria!

Gemini is right, you need a full thyroid panel in order to really see what is going on with your thyroid.  The remaining tests are Free T3, Free T4, TpoAb and TgAb.  The last 2 are antibody tests.  Ideally, your TSH will be around 1 and the Free #'s will be in 50-75% of the range.  

I feel terrible with a TSH where yours is.  Mine is best very close to 1.  Thankfully, my endocrinologist doses based on symptoms!

Start by asking your Dr for the full panel.  Give her all of your symptoms as well as your mom's history.  Hopefully, she is willing to order them for you.  Many Drs will only order TSH or that and Free T4, but you really do need all of them.

This site is a great resource for all things thyroid:

Open Original Shared Link

Good luck and please let us know how it goes!

Thanks so much!

i really appreciate knowing that you would terrible if your number was similar to mine. I tell you, I really thought I was "okay" before I frequented this site. But the more I read about people's symptoms, and them improving, I keep comparing myself to them. And realizing I'm not quite ok. In fact, there's a lot that could be better.

thank you both for arming me with more knowledge to approach the doc with. I do wonder if I'll ever be back to my old self. My husband sometimes comments on how different I am than I was when we were first married- super motivated and energetic. 

 

Ps just read on the site you recommended that bipolar might be hashis switching btw high and low.... and guess what my psych says I have and I'm on meds for? I would Love to get off that drug!

Gemini Experienced
6 hours ago, icelandgirl said:

Hi Victoria!

Gemini is right, you need a full thyroid panel in order to really see what is going on with your thyroid.  The remaining tests are Free T3, Free T4, TpoAb and TgAb.  The last 2 are antibody tests.  Ideally, your TSH will be around 1 and the Free #'s will be in 50-75% of the range.  

I feel terrible with a TSH where yours is.  Mine is best very close to 1.  Thankfully, my endocrinologist doses based on symptoms!

Start by asking your Dr for the full panel.  Give her all of your symptoms as well as your mom's history.  Hopefully, she is willing to order them for you.  Many Drs will only order TSH or that and Free T4, but you really do need all of them.

This site is a great resource for all things thyroid:

Open Original Shared Link

Good luck and please let us know how it goes!

I couldn't have said this better!  :)

Gemini Experienced
6 hours ago, Victoria1234 said:

Thanks so much!

 My husband sometimes comments on how different I am than I was when we were first married- super motivated and energetic. 

This is what undiagnosed Hashi's does.........robs you of your energy and vitality.  You are going in slow motion, if it gets bad enough.

Ps just read on the site you recommended that bipolar might be hashis switching btw high and low.... and guess what my psych says I have and I'm on meds for? I would Love to get off that drug!

Yeah......get that full panel done!  :o

 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Hi!  I found this article very helpful. 

Open Original Shared Link

Hope this helps.

Victoria1234 Experienced
34 minutes ago, knitty kitty said:

Hi!  I found this article very helpful. 

Open Original Shared Link

Hope this helps.

Awesome, thanks!

Also, I just remembered I forgot to add a possible symptom of my standard temp is 96.7F. Haven't had a fever since 1988 when I had rocky mt spotted fever!

Victoria1234 Experienced

In the doctors office right now, just had the vitals taken.... and hoping my doc of the day is sympathetic to symptoms.

Victoria1234 Experienced

Sounds like she's not into the whole thyroid idea, but is willing to check the t4. She also wants to check for other autoimmune diseases as she said some of my symptoms could match up with other issues. So I'm eagerly awaiting the blood draw.

Gemini Experienced
4 hours ago, Victoria1234 said:

Sounds like she's not into the whole thyroid idea, but is willing to check the t4. She also wants to check for other autoimmune diseases as she said some of my symptoms could match up with other issues. So I'm eagerly awaiting the blood draw.

She's willing to check for other AI diseases but only the T4 for thyroid?  It's as simple as taking more blood.  :blink: 

The symptoms you mentioned, plus the low body temperature, is pretty clear cut for thyroid disease. This is why I ended up going to a functional MD for my thyroid and never looked back.  They do the full panel when I want them to.  If the T4 comes back low, push for the full panel.  Good luck!

icelandgirl Proficient

I completely agree with Gemini!  I can't understand her unwillingness to test for Hashis...makes no sense.  Also, hopefully she tested Free T4 and not total T4 as that's the only one that matters.  If she did Free T4, when you get your result, check to see where it is in the range.  If it's below 50% of the range, along with your high in the range TSH, insist upon a trial of thyroid meds.

Best wishes to you...I really hope you get some answers and feel better!

Victoria1234 Experienced
1 hour ago, icelandgirl said:

I completely agree with Gemini!  I can't understand her unwillingness to test for Hashis...makes no sense.  Also, hopefully she tested Free T4 and not total T4 as that's the only one that matters.  If she did Free T4, when you get your result, check to see where it is in the range.  If it's below 50% of the range, along with your high in the range TSH, insist upon a trial of thyroid meds.

Best wishes to you...I really hope you get some answers and feel better!

She seemed to say t4, not free t4. I guess we shall see.

she brought in another doc who was nice but carefully explained to me like I was dumb about how the tsh I had was in normal range, but they'd be happy to recheck it. He said they only aim for the 1 in people already diagnosed with issues.

they also said the symptoms could be coming from my meds. I explained how I'd been having these issues before my meds.... that I'm pretty sure they aren't side effects. 

Lord god almighty I hate doctors.

can you find functional docs that actually take health insurance? Or are they all pay out of pocket? I had a chiro-functional doc back when I had a lot more money but he cost me thousands.

at least they took my back pain seriously. Going to see a pt tomorrow at a spine center. Now if that pain was eliminated, I would be a lot happier with life. My back hurts as soon as I wake up till I fall asleep.

icelandgirl Proficient
18 hours ago, Victoria1234 said:

She seemed to say t4, not free t4. I guess we shall see.

she brought in another doc who was nice but carefully explained to me like I was dumb about how the tsh I had was in normal range, but they'd be happy to recheck it. He said they only aim for the 1 in people already diagnosed with issues.

they also said the symptoms could be coming from my meds. I explained how I'd been having these issues before my meds.... that I'm pretty sure they aren't side effects. 

Lord god almighty I hate doctors.

can you find functional docs that actually take health insurance? Or are they all pay out of pocket? I had a chiro-functional doc back when I had a lot more money but he cost me thousands.

at least they took my back pain seriously. Going to see a pt tomorrow at a spine center. Now if that pain was eliminated, I would be a lot happier with life. My back hurts as soon as I wake up till I fall asleep.

I totally get it.  I hate going to Dr's...it gives me so much anxiety.  I've never found a functional medicine Dr where I live that takes insurance, so I can't help there.  I know that you can order your own thyroid labs online through stopthethyroidmadness.  They do a full panel, it's reasonable priced.  You could always try that.  Hopefully your tests come back soon and mybe you wil have some answers.  

((Hugs))

Victoria1234 Experienced
2 hours ago, icelandgirl said:

I totally get it.  I hate going to Dr's...it gives me so much anxiety.  I've never found a functional medicine Dr where I live that takes insurance, so I can't help there.  I know that you can order your own thyroid labs online through stopthethyroidmadness.  They do a full panel, it's reasonable priced.  You could always try that.  Hopefully your tests come back soon and mybe you wil have some answers.  

((Hugs))

Thank you for the encouragement, tests should be back next week :) 

went for initial consultation for back pain today at a spine center. They seemed really great. Found out I have very little flexibility in my hips as well.  I mean, its bad. Didn't realize how bad it was. I had noticed it was a bit wonky, but wow. They noticed something was wrong with my neck too. So they are going to do an MRI on my neck next week and start pt on my back tomorrow. They said if after 6mo or so if the pt isn't improving things they might do an MRI on my spine too. 

My back has gotten to the point where it's very uncomfortable for me to sit or stand or walk for that matter. Pain from morning till night. 

I guess there's things not gluten related out there in the world, lol. 

((((Hugs))))) back at you! But don't squeeze very tightly please, lol.

ps forgot to add doc today said it might be some sort of arthritis. Is there an auto immune version? Ok I can google that, never mind.

Victoria1234 Experienced

Hooray!

new tsh results 

 
3.350 uIU/mL

0.600-3.300 uIU/mL so the doc is putting me on a low dose thyroid and seeing me again in 2 months.

Victoria1234 Experienced

Free t3 

3.50 pg/mL

2.71-6.16 pg/m

Victoria1234 Experienced

Free t4

 
0.92 ng/dL 0.71-1.40 ng/dL
Victoria1234 Experienced

Any help in interpreting the free t3 and t4 would be awesome :) sorry for posting a million times. If I added anything it made the pasted results all wonky, lol.

ps I'm awaiting my first pt session, here in the waiting room.

icelandgirl Proficient

Hi Victoria!

You are definitely hypothyroid.  I'm so glad that you pushed and that your doctor listened!  She is most likely starting you on levothyroxine which is a T4 replacement.  Checking bloodwork again in 6-8 weeks is standard.

Your Free T3 is 30% of the range and your Free T4 is 23% of the range.  No wonder you feel bad!  Optimally you want those to be 50-75%.

You will have to be patient...it will probably take a few weeks to notice a difference.  Also, getting the correct dosage dialed in can be tricky.

But, this is a great start!  I'm so happy for you...progress.  ?

Victoria1234 Experienced
21 minutes ago, icelandgirl said:

Hi Victoria!

You are definitely hypothyroid.  I'm so glad that you pushed and that your doctor listened!  She is most likely starting you on levothyroxine which is a T4 replacement.  Checking bloodwork again in 6-8 weeks is standard.

Your Free T3 is 30% of the range and your Free T4 is 23% of the range.  No wonder you feel bad!  Optimally you want those to be 50-75%.

You will have to be patient...it will probably take a few weeks to notice a difference.  Also, getting the correct dosage dialed in can be tricky.

But, this is a great start!  I'm so happy for you...progress.  ?

Thank you thank you! I'm so excited and I have you and this wonderful board to thank! If it wasn't for you guys I wouldn't have thought there was an issue. Just growing old!

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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,422
    • Most Online (within 30 mins)
      7,748

    HAUS
    Newest Member
    HAUS
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.