Hard to believe hashimoto-diagnosis :(

[chocoholic]

Hi everyone,

I've posted here before about my celiac diagnosis (Aug 2019). Now I'd like to add that in April this year, I had a follow-up endoscopy, so 20 months after my initial one.

The result was a normal villi architecture with an increased lymphocyte count, which I was told was "normal". I thought I'd share this in case other people are wondering about possible timelines with regard to tissue healing.

So far so good.

I take the gluten-free diet very seriously and found my intestinal symptoms mostly going away. There is still some permanent bloating, as well as diarrhea when I try dairy containing lactose. So I asked for a lactose and fructose tolerance test, but this has been delayed because of covid.

Other than this though, I have felt no improvement with my lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill.

An endocrinologist has (for the first time) included thyroid antibodies in one of my blood tests: TPO is slightly above the normal limit (my value 62.3 IU/ml, range 0-60).

My TSH is 2.18 mIU/l (range is 0.55-4.78). My FT3 is 3.21 pg/ml (range is 2.3-4.2). My FT4 is 1.02 (range is 0.81-1.76).

I also have very high triglycerides of 259 mg/dl (normal is <150).

My HOMA index is 3.2 (range is 0.5-2.5).

(My TSH, T3 and T4 had been tested many times throughout the years but were always considered normal).

He has diagnosed me with latent autoimmune thyroiditis and slight insulin resistance.

I only have all this in writing from the front desk, as only the GP is the one supposed to talk to me about the results. She did, and she told me I have hashimoto. I asked her 3 times if she's sure (I thought latent means it hasn't emerged yet), she said yes.

I am confused to have received such a full-fledged diagnosis based on my lab results and asked her for a referral to another specialist for more tests. She advised against a scintigraphy (done intravenously where I live) but referred me to a nuclear medical place for an ultrasound (which they do too).

For those of you who have hashimoto, could you please share your knowledge on these questions?

1. What kind of doctor would you recommend I see? What kinds of tests should I do?

2. Have you received your diagnosis based on results similar to mine? Is it reasonable to diagnose thyroiditis based on these values?

3. Is "latent" just as serious as regular hashimoto...is it actually already there or just 'around the corner'?

I know about the layperson-no-doctor part...only your experiences and impressions would do. I'm really despairing over doctors once again 😰

[trents]

Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?

[icelandgirl]

Hi Chocoholic!

Love the name as I am a chocoholic too!😀

I also have Hashimoto's and celiac...welcome to the club!  

If you can find a good endocrinologist, go with that.  If not, in most cases, a GP can take care of your thyroid as well.  My endocrinologist recently retired and I was pretty upset because he really got it. He had thyroid cancer and full thyroid removal so really understood how the medications affect the thyroid.  

I received my Hashimoto's diagnosis with similar results although I had been considered hypothyroid and on medication for it for years.  It wasn't until 7 years ago that this new endocrinologist checked my antibodies and sure enough I had them.

Based on your results, I would say that you are in need of some thyroid meds and I also know that your Dr may not agree.  My TSH feels best around 1...or slightly below 1.  At your level I would be tired, have headaches, etc.  Your FT4 is a bit low as well.  A small amount of thyroid replacement medication would most likely do wonders for you.  A lot of Drs go only by the range and you are in the range on the values...find a Dr who goes by how you feel.

I'm sorry that you are still struggling and I hope you get some help and answers soon!

Hugs!

 

[icelandgirl]

25 minutes ago, trents said:

Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?

Hi Trents...the TPO (thyroid perxoidase antibodies) are fairly indicative of thyroid disease.  In this case, they are above the normal range so that would indicate thyroid autoimmune disease.

[chocoholic]

2 hours ago, trents said:

Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?

Almost...as Icelandgirl wrote, the TPO is technically above normal. But when I read the values that Hashimoto patients have (high in the hundreds), then mine seems completely negligible.

[chocoholic]

2 hours ago, icelandgirl said:

Hi Chocoholic!

Love the name as I am a chocoholic too!😀

I also have Hashimoto's and celiac...welcome to the club!  

If you can find a good endocrinologist, go with that.  If not, in most cases, a GP can take care of your thyroid as well.  My endocrinologist recently retired and I was pretty upset because he really got it. He had thyroid cancer and full thyroid removal so really understood how the medications affect the thyroid.  

I received my Hashimoto's diagnosis with similar results although I had been considered hypothyroid and on medication for it for years.  It wasn't until 7 years ago that this new endocrinologist checked my antibodies and sure enough I had them.

Based on your results, I would say that you are in need of some thyroid meds and I also know that your Dr may not agree.  My TSH feels best around 1...or slightly below 1.  At your level I would be tired, have headaches, etc.  Your FT4 is a bit low as well.  A small amount of thyroid replacement medication would most likely do wonders for you.  A lot of Drs go only by the range and you are in the range on the values...find a Dr who goes by how you feel.

I'm sorry that you are still struggling and I hope you get some help and answers soon!

Hugs!

 

Thank you so much, Icelandgirl, for your caring reply! Yes, I'm a chocoholic (used to be funny, now it's pretty bad ) which no doubt has contributed to my triglyceride levels.

Thanks for sharing your impressions. I'm very open to taking thyroid medication and I'm curious how I'd be feeling. What and how much do you take?

Have you by any chance experienced an unusual change of hair texture as well?

[Wheatwacked]

 

If you are avoiding dairy, and not using iodized table salt, you are possibly iodine deficient. Iodine Deficiency can result in either Hashimoto or Graves. For iodine I eat one sheet 2.5 gm of shushi nori = 400 mcg iodine. The US RDA is from 125 to 1200mcg per day.

"Iodine deficiency, not excess, is the cause of autoimmune thyroid disease...In Japan, where dietary iodine intakes are high, it has been shown that ‘The incidence of Graves’ disease and Hashimoto’s disease does not appear to be affected by high intakes of iodine.‘ (5)...Evidence is also accumulating that iodine deficiency is able to precipitate thyroid autoimmune reactivity in humans.’   https://www.bmj.com/content/352/bmj.i941/rr-2

As far as trigycerides and energy: Look at your choline intake and B5 (Pantothenic Acid) . Eggs were the best source. 

Egg, hard boiled, 1 large egg 147 mg. US RDA is 550 to 3500 a day.

It takes about 3 eggs a day for the minimum RDA.  B5 is the precurser for CoA which is the catalyst for releasing ATP (energy) from glucose. It is the basis of all life.  Most research money has been spent on Pantothene, well, Pantothene can be profitably marketed and B5 Pantothenic Acid cannot. My triglycerides have gone from 595 mg/dl in 2018 to 295 mg/dl in Sept 2021 while taking 1000 mg B5 and 500 Choline or Phosphotidyl Choline. When I had pancreatitis in 1995 my triglyceride was off the charts over 10,000.

"Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week ...Although most people in the United States consume less than the AI of choline"   https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

" a [B5] deficiency is associated with numbness and burning of the hands and feet, headache, fatigue, irritability, restlessness, disturbed sleep, and gastrointestinal disturbances with anorexia...When someone has a pantothenic acid deficiency, it is usually accompanied by deficiencies in other nutrients, making it difficult to identify the effects that are specific to pantothenic acid deficiency... A double-blind trial in China randomly assigned 216 adults with hypertriglyceridemia (204–576 mg/dl) to supplementation with 400 U/day CoA or 600 mg/day pantethine [21]. All participants also received dietary counseling. Triglyceride levels dropped by a significant 16.5% with pantethine compared"   https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/

 

Quote

Severe iodine deficiency causes goitre and hypothyroidism....iodine concentrations are still too low to enable production of thyroid hormone. In mild-to-moderate iodine deficiency, increased thyroid activity can compensate for low iodine intake ... but at a price: chronic thyroid stimulation results in hyperthyroidism   https://pubmed.ncbi.nlm.nih.gov/25591468/

Quote

Graves’ disease and Hashimoto's thyroiditis can coexist in the same individual, reflecting their common autoimmune origin.  Simultaneous occurrence of Graves’ disease and Hashimoto's thyroiditis can result in clinical masking of one disorder by the other.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039812/

".urinary iodine levels decreased by more than 50% between 1971–1974 and 1988–1994 [2,32]. Much of this decline was a result of decreased levels of iodine in milk due to the reduced use of iodine-containing feed supplements and iodophor sanitizing agents in the dairy industry [33], as well as the reduced use of iodate dough conditioners by commercial bakers. ..most salt intake in the United States comes from processed foods, and food manufacturers almost always use non-iodized salt in these foods....Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine [...Typically, TSH secretion increases when iodine intake falls below about 100 mcg/day [5]. TSH increases thyroidal iodine uptake from the blood and the production of thyroid hormone. However, very low iodine intakes can reduce thyroid hormone production even in the presence of elevated TSH levels..."   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

[icelandgirl]

3 hours ago, chocoholic said:

Thank you so much, Icelandgirl, for your caring reply! Yes, I'm a chocoholic (used to be funny, now it's pretty bad ) which no doubt has contributed to my triglyceride levels.

Thanks for sharing your impressions. I'm very open to taking thyroid medication and I'm curious how I'd be feeling. What and how much do you take?

Have you by any chance experienced an unusual change of hair texture as well?

Hi again,

When my thyroid levels were off a bit, higher TSH, lower FT4, my cholesterol was in a bad spot, especially my triglycerides...in fact that's the only time the triglycerides have been elevated.  I remember having them rechecked after 6 weeks on an increased dose of thyroid meds and they were back to normal.

I am on Levoxyl (brand name) and I take 100 mcg per day.  I've been on a thyroid med for over 20 years...I started off at 50 mt just seems like you could possibly benefit from a bit of T4 med, levothyroxine being the generic...name brands are Synthroid and Levoxyl based on your symptoms and labs.  When I get hypothryoid my hair gets very coarse and just dry and unhealthy looking.

I hope that helps!

[chocoholic]

9 hours ago, Wheatwacked said:

 

If you are avoiding dairy, and not using iodized table salt, you are possibly iodine deficient. Iodine Deficiency can result in either Hashimoto or Graves. For iodine I eat one sheet 2.5 gm of shushi nori = 400 mcg iodine. The US RDA is from 125 to 1200mcg per day.

"Iodine deficiency, not excess, is the cause of autoimmune thyroid disease...In Japan, where dietary iodine intakes are high, it has been shown that ‘The incidence of Graves’ disease and Hashimoto’s disease does not appear to be affected by high intakes of iodine.‘ (5)...Evidence is also accumulating that iodine deficiency is able to precipitate thyroid autoimmune reactivity in humans.’   https://www.bmj.com/content/352/bmj.i941/rr-2

As far as trigycerides and energy: Look at your choline intake and B5 (Pantothenic Acid) . Eggs were the best source. 

Egg, hard boiled, 1 large egg 147 mg. US RDA is 550 to 3500 a day.

It takes about 3 eggs a day for the minimum RDA.  B5 is the precurser for CoA which is the catalyst for releasing ATP (energy) from glucose. It is the basis of all life.  Most research money has been spent on Pantothene, well, Pantothene can be profitably marketed and B5 Pantothenic Acid cannot. My triglycerides have gone from 595 mg/dl in 2018 to 295 mg/dl in Sept 2021 while taking 1000 mg B5 and 500 Choline or Phosphotidyl Choline. When I had pancreatitis in 1995 my triglyceride was off the charts over 10,000.

"Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week ...Although most people in the United States consume less than the AI of choline"   https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

" a [B5] deficiency is associated with numbness and burning of the hands and feet, headache, fatigue, irritability, restlessness, disturbed sleep, and gastrointestinal disturbances with anorexia...When someone has a pantothenic acid deficiency, it is usually accompanied by deficiencies in other nutrients, making it difficult to identify the effects that are specific to pantothenic acid deficiency... A double-blind trial in China randomly assigned 216 adults with hypertriglyceridemia (204–576 mg/dl) to supplementation with 400 U/day CoA or 600 mg/day pantethine [21]. All participants also received dietary counseling. Triglyceride levels dropped by a significant 16.5% with pantethine compared"   https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/

 

".urinary iodine levels decreased by more than 50% between 1971–1974 and 1988–1994 [2,32]. Much of this decline was a result of decreased levels of iodine in milk due to the reduced use of iodine-containing feed supplements and iodophor sanitizing agents in the dairy industry [33], as well as the reduced use of iodate dough conditioners by commercial bakers. ..most salt intake in the United States comes from processed foods, and food manufacturers almost always use non-iodized salt in these foods....Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine [...Typically, TSH secretion increases when iodine intake falls below about 100 mcg/day [5]. TSH increases thyroidal iodine uptake from the blood and the production of thyroid hormone. However, very low iodine intakes can reduce thyroid hormone production even in the presence of elevated TSH levels..."   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

Hi Wheatwacked,

thank you for your reply and all the information you went through the trouble to find for me.

I haven't been avoiding dairy; I eat lactose free products. I use iodized salt. I don't know if there is a way of getting this tested; I've never heard of it being in a blood panel.

Of course B vitamin deficiencies are always a possibility but I had the same symptoms even when taking larger doses of them...

 

[Wheatwacked]

 "Urinary iodine reflects dietary iodine intake directly because people excrete more than 90% of dietary iodine in the urine [4]. Spot urine iodine measurements are a useful indicator of iodine status within populations [28,29]. However, multiple 24-hour urinary iodine or multiple spot urine measurements are more accurate for individuals"  https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

The only way to see if choline and B5 are deficient is to try raising your intake to near the RDA upper level for a while and see if it helps. There do not appear to be any tests in common use.  Finding a doctor to test for them is in my opinion, going to be harder than finding a doctor who believes Celiac Disease is real.  They like to blame  stress or psychosomatic illness or just plain aging.  Some B complexes have them, some don't, but  but never at a significant level like the other B vitamins.  Choline was not even accepted as an essential nutrient until 1998.  Psycology Today stated that only 7% of American women get the Adequate Intake. Increasing the other B vitamins simply compensates for the lack of choline and B5 because they are so important our bodies have multiple backup systems in place. Until the late 70's Fatty Liver was only in alcoholics and if you had it and claimed you didn't drink you were probably lying and in need of a psychiatrist. This is my opinion, and I could be wrong, but in 2012 I couldn't stand for more than 10 minutes at a time.

[Wheatwacked]

Just because I am on a roll, I would like to point out that it took years of convincing to get surgeons to wash their hands before operating.

[ShaunaTX]

On 10/21/2021 at 10:34 AM, chocoholic said:

Hi everyone,

I've posted here before about my celiac diagnosis (Aug 2019). Now I'd like to add that in April this year, I had a follow-up endoscopy, so 20 months after my initial one.

The result was a normal villi architecture with an increased lymphocyte count, which I was told was "normal". I thought I'd share this in case other people are wondering about possible timelines with regard to tissue healing.

So far so good.

I take the gluten-free diet very seriously and found my intestinal symptoms mostly going away. There is still some permanent bloating, as well as diarrhea when I try dairy containing lactose. So I asked for a lactose and fructose tolerance test, but this has been delayed because of covid.

Other than this though, I have felt no improvement with my lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill.

An endocrinologist has (for the first time) included thyroid antibodies in one of my blood tests: TPO is slightly above the normal limit (my value 62.3 IU/ml, range 0-60).

My TSH is 2.18 mIU/l (range is 0.55-4.78). My FT3 is 3.21 pg/ml (range is 2.3-4.2). My FT4 is 1.02 (range is 0.81-1.76).

I also have very high triglycerides of 259 mg/dl (normal is <150).

My HOMA index is 3.2 (range is 0.5-2.5).

(My TSH, T3 and T4 had been tested many times throughout the years but were always considered normal).

He has diagnosed me with latent autoimmune thyroiditis and slight insulin resistance.

I only have all this in writing from the front desk, as only the GP is the one supposed to talk to me about the results. She did, and she told me I have hashimoto. I asked her 3 times if she's sure (I thought latent means it hasn't emerged yet), she said yes.

I am confused to have received such a full-fledged diagnosis based on my lab results and asked her for a referral to another specialist for more tests. She advised against a scintigraphy (done intravenously where I live) but referred me to a nuclear medical place for an ultrasound (which they do too).

For those of you who have hashimoto, could you please share your knowledge on these questions?

1. What kind of doctor would you recommend I see? What kinds of tests should I do?

2. Have you received your diagnosis based on results similar to mine? Is it reasonable to diagnose thyroiditis based on these values?

3. Is "latent" just as serious as regular hashimoto...is it actually already there or just 'around the corner'?

I know about the layperson-no-doctor part...only your experiences and impressions would do. I'm really despairing over doctors once again 😰

Hi there,

      I’m completely opposite from you, as I’ve had Hashimoto’s most of my life but was just diagnosed with Celiac 3 days ago. So I know a bit about it! I’m also in healthcare. Yes you have Hashimoto’s due to your elevated TPO, it would have been a lot higher if you were not gluten free. Honestly, I refuse to go to endocrinologists (which is the specialist you go to, but PCP can treat no problem-in your case just monitor) as I have been to 4 and they seem to not listen to me and my symptoms rather than just looking at lab ranges. I come from a long line of Hashimoto’s and we all know what TSH level we feel best at. Luckily my PCP is awesome and she listens to me and we try to keep my TSH where I feel best. I found going gluten free 4 years ago also helped me keep my thyroid levels mostly consistent. Although I was only gluten sensitive at the time so I was not as worried if I got cross-contaminated. Now I’m in panic mode with being Celiac.
 

Regarding your diagnosis, I would be more worried about Celiac than Hashimoto’s. Latent for you pretty much means you have it but your numbers (TSH and titers) are all in normal range. Numbers are normal so no treatment just monitoring. I get an ultrasound about every 4 years just to make sure there’s no thyroid nodules. But unlike you my TSH will go into 80s if I’m not medicated. 
Only other labs I would suggest to make sure they are all good are Vitamin D, B12, and folate.  Also have you had your ANA checked? If positive, you will mostly likely have a third autoimmune problem in your lifetime. I was just diagnosed with my third, but some people can have more than that.  Other than that relax, don’t stress about it!  I would concentrate more on your stress, insulin resistance and  Hypertriglyceridemia as those may be contributing to your symptoms.

Hope that answers some of your questions! 

-Shauna 

[ShaunaTX]

On 10/21/2021 at 10:34 AM, chocoholic said:

Hi everyone,

I've posted here before about my celiac diagnosis (Aug 2019). Now I'd like to add that in April this year, I had a follow-up endoscopy, so 20 months after my initial one.

The result was a normal villi architecture with an increased lymphocyte count, which I was told was "normal". I thought I'd share this in case other people are wondering about possible timelines with regard to tissue healing.

So far so good.

I take the gluten-free diet very seriously and found my intestinal symptoms mostly going away. There is still some permanent bloating, as well as diarrhea when I try dairy containing lactose. So I asked for a lactose and fructose tolerance test, but this has been delayed because of covid.

Other than this though, I have felt no improvement with my lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill.

An endocrinologist has (for the first time) included thyroid antibodies in one of my blood tests: TPO is slightly above the normal limit (my value 62.3 IU/ml, range 0-60).

My TSH is 2.18 mIU/l (range is 0.55-4.78). My FT3 is 3.21 pg/ml (range is 2.3-4.2). My FT4 is 1.02 (range is 0.81-1.76).

I also have very high triglycerides of 259 mg/dl (normal is <150).

My HOMA index is 3.2 (range is 0.5-2.5).

(My TSH, T3 and T4 had been tested many times throughout the years but were always considered normal).

He has diagnosed me with latent autoimmune thyroiditis and slight insulin resistance.

I only have all this in writing from the front desk, as only the GP is the one supposed to talk to me about the results. She did, and she told me I have hashimoto. I asked her 3 times if she's sure (I thought latent means it hasn't emerged yet), she said yes.

I am confused to have received such a full-fledged diagnosis based on my lab results and asked her for a referral to another specialist for more tests. She advised against a scintigraphy (done intravenously where I live) but referred me to a nuclear medical place for an ultrasound (which they do too).

For those of you who have hashimoto, could you please share your knowledge on these questions?

1. What kind of doctor would you recommend I see? What kinds of tests should I do?

2. Have you received your diagnosis based on results similar to mine? Is it reasonable to diagnose thyroiditis based on these values?

3. Is "latent" just as serious as regular hashimoto...is it actually already there or just 'around the corner'?

I know about the layperson-no-doctor part...only your experiences and impressions would do. I'm really despairing over doctors once again 😰

Also, you think your trigs are very high…I’ve seen trigs over 2400 in my field mostly in patients with diabetic lipemia. Look up “strawberry milk-like blood” it’s what happens when blood that has an extreme amount of trigs has been centrifuged. It’s crazy! 

[Wheatwacked]

Symptoms NAFLD usually causes no signs and symptoms. When it does, they may include: Fatigue Pain or discomfort in the upper right abdomen

"Free choline, phosphocholine, and glycerophosphocholine are absorbed in the small intestine,"  https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

Quote

Recent analyses indicate that large portions of the population (ie, approximately 90% of Americans), including most pregnant and lactating women, are well below the AI for choline. Moreover, the food patterns recommended by the 2015–2020 Dietary Guidelines for Americans are currently insufficient to meet the AI for choline in most age-sex groups. https://journals.lww.com/nutritiontodayonline/Fulltext/2018/11000/Choline__The_Underconsumed_and_Underappreciated.4.aspx

Quote

As much as 25% of the population may have NAFLD (American Liver Foundation).https://view.officeapps.live.com/op/view.aspx?src=http%3A%2F%2Fcholinecouncil.com%2Fdocuments%2Fmedia%2Ffact_sheets%2FFINAL%2520Facts%2520about%2520Choline%2520%26%2520NAFLD.doc&wdOrigin=BROWSELINK

Quote

The dyslipidemia in NAFLD is characterized by increased serum triglycerides, increased small, dense low-density lipoprotein (LDL nontype A) particles, and low high-density lipoprotein (HDL) cholesterol. https://pubmed.ncbi.nlm.nih.gov/22418885/

Quote

Evidence here shows choline and its oxidized metabolite betaine are responsible for lowering whole body weight, restoring insulin resistance, reducing hypertriglyceridemia, hepatic steatosis, and alleviating adipose and liver tissue inflammation, by restoring hepatic metabolism and gene expression. https://atrium.lib.uoguelph.ca/xmlui/bitstream/handle/10214/4975/Sivanesan_Sugashan_201212_Msc.pdf;sequence=3

 

[ShaunaTX]

On 10/21/2021 at 11:10 AM, trents said:

Why does your doctor say you have Hashimotos when your thyroid panel numbers are all within normal range?

It’s because her thyroid peroxidase (TPO) is elevated.  I wonder now if an anti-TG was done… 
https://www.mayoclinic.org/thyroid-disease/expert-answers/faq-20058114

 

[ShaunaTX]

1 hour ago, Wheatwacked said:

Symptoms NAFLD usually causes no signs and symptoms. When it does, they may include: Fatigue Pain or discomfort in the upper right abdomen

"Free choline, phosphocholine, and glycerophosphocholine are absorbed in the small intestine,"  https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

 

An elevated trig level does not always mean non-alcoholic fatty liver disease… especially if liver function tests are normal. It’s more likely in my patient with diabetic lipemia (trigs over 2400) but not with chocoholic’s case of trigs of 259

[chocoholic]

On 10/22/2021 at 4:48 PM, Wheatwacked said:

Just because I am on a roll, I would like to point out that it took years of convincing to get surgeons to wash their hands before operating.

Thanks for all your info. It's interesting that iodine can be tested in the urine...I doubt though that any doctors near me would do that, or even know how to go about it. I can try.

And yes, I see that many theories or observations are considered bogus by doctors for a long time until the mainstream gets there. Take my hair, for example. I still haven't met any doctor or real-life (non-internet-forum-based) person who sees my wiry hair even after pointing it out to them, or on themselves. Are they blind? And don't doctors see how common this is out there, if they observed people in public, or their patients? Hopefully someday it's an official symptom of something.

[chocoholic]

On 10/24/2021 at 11:17 AM, ShaunaTX said:

Hi there,

      I’m completely opposite from you, as I’ve had Hashimoto’s most of my life but was just diagnosed with Celiac 3 days ago. So I know a bit about it! I’m also in healthcare. Yes you have Hashimoto’s due to your elevated TPO, it would have been a lot higher if you were not gluten free. Honestly, I refuse to go to endocrinologists (which is the specialist you go to, but PCP can treat no problem-in your case just monitor) as I have been to 4 and they seem to not listen to me and my symptoms rather than just looking at lab ranges. I come from a long line of Hashimoto’s and we all know what TSH level we feel best at. Luckily my PCP is awesome and she listens to me and we try to keep my TSH where I feel best. I found going gluten free 4 years ago also helped me keep my thyroid levels mostly consistent. Although I was only gluten sensitive at the time so I was not as worried if I got cross-contaminated. Now I’m in panic mode with being Celiac.
 

Regarding your diagnosis, I would be more worried about Celiac than Hashimoto’s. Latent for you pretty much means you have it but your numbers (TSH and titers) are all in normal range. Numbers are normal so no treatment just monitoring. I get an ultrasound about every 4 years just to make sure there’s no thyroid nodules. But unlike you my TSH will go into 80s if I’m not medicated. 
Only other labs I would suggest to make sure they are all good are Vitamin D, B12, and folate.  Also have you had your ANA checked? If positive, you will mostly likely have a third autoimmune problem in your lifetime. I was just diagnosed with my third, but some people can have more than that.  Other than that relax, don’t stress about it!  I would concentrate more on your stress, insulin resistance and  Hypertriglyceridemia as those may be contributing to your symptoms.

Hope that answers some of your questions! 

-Shauna 

Hi Shauna, thank you so much for sharing! Congratulations on finally getting diagnosed (hope you know how I mean it). Why are you panicked about your celiac diagnosis? You have all this experience with the diet and now have official proof, which is worth a lot! Now you have more control over this thing in many ways. Was it straightforward to test positive despite going gluten-free for 4 years?

Thanks for reassuring me. I feel though that I have more control over celiac than this Hashimoto thing. I would like to do something about Hashimoto (take a medication although I'm generally anti-meds), but I can't since my values are "normal". I got an appointment with a nuclear medicine doc for November and will report back. Have you had a scintigram, since you mention nodules?

Thanks also for mentioning that my thyroid antibody values may have been higher 2 years ago at the time of my diagnosis. I have come across this theory in forums only so far. Hashimoto-celiac patients seem to have mixed experiences with their going gluten-free and their thyroid antibody levels. If you happen to have a study on this, I'd love to read it (haven't searched yet).

I have not had my ANA checked, will ask for it. What is your third autoimmune disease?

[chocoholic]

19 hours ago, ShaunaTX said:

It’s because her thyroid peroxidase (TPO) is elevated.  I wonder now if an anti-TG was done… 
https://www.mayoclinic.org/thyroid-disease/expert-answers/faq-20058114

 

By anti-TG, I assume you mean what I know as TRAb? Then yes, I failed to mention it. It was <0.1 (normal reference range 0-1.5). A bit of a strange value then but apparently ok.

[Wheatwacked]

19 hours ago, ShaunaTX said:

An elevated trig level does not always mean non-alcoholic fatty liver disease

No, it does not. It could be an early warning indication of chonic insufficient choline in the diet. Since choline is absorbed in the small intestine and a significant portion of the normal population does not even eat enough of it, the problem in Celiacs is compounded.   My opinion is to make sure that intake choline is above the minimum RDA before getting sicker and then saying Oh yeah.  It warrants consideration before denial.

Quote

 https://draxe.com/nutrition/what-is-choline/

Symptoms of a choline deficiency may possibly include:

low energy levels of fatigue

memory loss

cognitive decline

learning disabilities

muscle aches

nerve damage

mood changes or disorders

 

[knitty kitty]

High dose Thiamine improved my NAFLD and sluggish thyroid...

 

"High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition"

https://pubmed.ncbi.nlm.nih.gov/33608323/

And...

"Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

 

 

[ShaunaTX]

9 hours ago, Wheatwacked said:

No, it does not. It could be an early warning indication of chonic insufficient choline in the diet. Since choline is absorbed in the small intestine and a significant portion of the normal population does not even eat enough of it, the problem in Celiacs is compounded.   My opinion is to make sure that intake choline is above the minimum RDA before getting sicker and then saying Oh yeah.  It warrants consideration before denial.

 

This poor woman only asked about Hashimoto’s and yet somehow the subject when WAY off into left field with NAFLD.

            Two strong indicators for choline deficiency are AST, ALT and CK values (Wallace et al., 2018). If these are not elevated then it’s very unlikely she has choline deficiency or NAFLD. Just because most people do not get what has been calculated as adequate intake, “current intakes cannot be deemed inadequate based upon AI value alone” (Wallace et al., 2018, para. 8).

            Additionally, guidelines recommend against routine screening of NAFLD even when a patient is high risk (Ando & Joy, 2021).  “ALT, GGT, AST are markers of liver injury and may be useful surrogate measures of NAFLD” (Sanyal et al., 2015, Discussion).  Ultrasound is still the first-line screening tool; the gold standard for NAFLD is liver biopsy showing steatosis, which is one of three requirements for the diagnosis of NAFLD (Ando & Joy, 2021). 

References

Ando, Y., & Jou, J. H. (2021). Nonalcoholic fatty liver disease and recent guideline updates. Clinical Liver Disease (Malden, Mass.), 17(1), 23-28. https://doi.org/10.1002/cld.1045

Sanyal, D., Mukherjee, P., Raychaudhuri, M., Ghosh, S., Mukherjee, S., & Chowdhury, S. (2015). Profile of liver enzymes in non-alcoholic fatty liver disease in patients with impaired glucose tolerance and newly detected untreated type 2 diabetes. Indian Journal of Endocrinology and Metabolism, 19(5), 597-601. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566337/

Wallace, T., Blusztajn, J.K., Caudull, M.A., Klatt, K.C., Natker, E., Zeisel, S., & Zelman, K. (2018). Choline the underconsumed and underappreciated essential nutrient. NutritionToday, 53(6), 240-253. https://journals.lww.com/nutritiontodayonline/Fulltext/2018/11000/Choline__The_Underconsumed_and_Underappreciated.4.aspx

[ShaunaTX]

15 hours ago, chocoholic said:

Hi Shauna, thank you so much for sharing! Congratulations on finally getting diagnosed (hope you know how I mean it). Why are you panicked about your celiac diagnosis? You have all this experience with the diet and now have official proof, which is worth a lot! Now you have more control over this thing in many ways. Was it straightforward to test positive despite going gluten-free for 4 years?

Thanks for reassuring me. I feel though that I have more control over celiac than this Hashimoto thing. I would like to do something about Hashimoto (take a medication although I'm generally anti-meds), but I can't since my values are "normal". I got an appointment with a nuclear medicine doc for November and will report back. Have you had a scintigram, since you mention nodules?

Thanks also for mentioning that my thyroid antibody values may have been higher 2 years ago at the time of my diagnosis. I have come across this theory in forums only so far. Hashimoto-celiac patients seem to have mixed experiences with their going gluten-free and their thyroid antibody levels. If you happen to have a study on this, I'd love to read it (haven't searched yet).

I have not had my ANA checked, will ask for it. What is your third autoimmune disease?

 

 

Sorry this is so long but I hope it helps. The references are packed full of great statistics and information.

I do have experience with a GFD but have not been overly cautious of cross-contamination factors and have typically cheated at least 2-3 times a year since going gluten-free. Since I have no Celiac symptoms and was not Celiac at the time, I only went gluten-free to keep my thyroid in check. Now that I have Silent Celiac Disease, I am more panicked due to the major life changes I need to implement to avoid anymore damage to my stomach lining such as not cheating, not cooking or storing my foods in cookware/containers that gluten eaters use (will be very hard), not using the same grill as others, and being much more cautious about labels. I have always read labels but would still get food even if there were no gluten ingredients listed but didn’t say gluten free. At this time, the only person besides myself that has been diagnosed with celiac disease is my second cousin which doesn’t even live near me.

Technically your Hashimoto’s is “under control” since all your numbers are normal except the TPO; so you are good to be “anti-meds” there, even most thyroid support supplements are unnecessary with your normal numbers!   

But IF you want to try to help your symptoms, getting your sugar and trigs down will help tremendously, berberine or cinnamon have proven to be helpful in both (Cao & Su, 2019; Qin et al., 2010). Also,  vitamin D, selenium and zinc may help as well (Lutz, 2020). Additionally, since Hashimoto’s is associated with leaky gut syndrome and gut dysbiosis, probiotics, preferably a combination of prebiotics and probiotics may help with Hashimoto’s, and possibly Celiac (Lerner et al., 2017).

Unless your numbers change, there is not much you can do about your Hashimoto’s unless you can change your genes, and if you figure that out, please let me know.

The antithyroglobulin (Anti-TG) antibodies test is a test to check for autoimmune diseases such as Grave’s or Hashimoto’s. I’m surprised you had a thyrotropin receptor antibody (TRAb) test done as it’s the gold standard in diagnosing Grave’s disease (in which your TSH would be a much smaller number if that was the case), or if cancer is suspected (Bell et al., 2018; Lee et al., 2017). Guess your doctor ran the gamut of thyroid tests.

A scintigram is typically used as a diagnostic tool for Grave’s and possibly to check abnormally large or unstable nodules that may be malignant (Miller & Hamburger, 1965).. It is much more invasive since it requires radioactive iodine and not typically used unless the much less invasive thyroid ultrasound shows abnormalities. I  have never had an abnormal ultrasound so never needed a scintigram. Honestly I think it’s overkill on the screening tools and probably unnecessary at this point in time.

My TPO was 136 before I went gluten-free, and I was getting it checked regularly when I had my TSH and titers checked just to get an idea of my gluten cross-contamination status. I have never been able to get below 36 but I guess we will see once I really be cautious of what I eat and cross-contamination, and I may never have a lower number because of my Hashimoto’s. TPO and gluten sensitivity is not a typical lab you seen ran by an allopathic doctor. It is more seen in naturopathic or functional medicine practice. But I am a true case in proving that the TPO test for gluten sensitivity works. Celiac is my third autoimmune disease, my second is vitiligo (which no one in my family has except a great aunt). When I diagnosed with vitiligo (in which I diagnosed myself, the first derm thought it was eczema, I wish!), I was tested for celiac to see if it was a cause of it, I was negative. Four years ago my TPO was tested, then three years ago my GI doctor said my gut showed I was gluten sensitive, which proves the TPO works. My decreased numbers when going gluten-free also shows the TPO method works. But now my biopsy shows I’m Celiac. L  Additionally, Lerner et al. (2017) states, The possible role of gluten in the induction of the anti-thyroid antibodies [TG/TPO] as well as, in few cases, the consequent organ dysfunction was suggested” (Gluten and autoimmune thyroiditis).

References

Bell, L., Hunter, A. L., Kyriacou, A., Mukherjee, A., & Syed, A. A. (2018). Clinical diagnosis of graves’ or non-graves’ hyperthyroidism compared to TSH receptor antibody test. Endocrine Connections, 7(4), 504-510. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5881005/

Cao, C., & Su, M. (2019). Effects of berberine on glucose-lipid metabolism, inflammatory factors and insulin resistance in patients with metabolic syndrome. Experimental and Therapeutic Medicine, 17(4), 3009-3014. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6434235/

Krysiak, R., Szkróbka, W., & Okopień, B. (2019). The Effect of Gluten-Free Diet on Thyroid Autoimmunity in Drug-Naïve Women with Hashimoto's Thyroiditis: A Pilot Study. Experimental and clinical endocrinology & diabetes : official journal, German Society of Endocrinology [and] German Diabetes Association, 127(7), 417–422. https://doi.org/10.1055/a-0653-7108

Lee, I., Hsieh, A., Lee, T., Lee, T., & Chien, Y. (2017). The association of thyrotropin and autoimmune thyroid disease in developing papillary thyroid cancer. International Journal of Endocrinology, 2017, 5940367-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5603117/

Lerner, A., Jeremias, P., & Matthias, T. (2017). Gut-thyroid axis and celiac disease. Endocrine Connections, 6(4), R52-R58. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5435852/

Lutz, J. (2020, June 10). Nutrients to prevent and support hashimoto's. https://www.endocrineweb.com/nutrients-hashimotos-thyroiditis

Miller, J.M. & Hamburger, J.I. (1965). The thyroid scintigram. Radiology, 84(1). https://doi.org/10.1148/84.1.66

Qin, B., Panickar, K. S., & Anderson, R. A. (2010). Cinnamon: Potential role in the prevention of insulin resistance, metabolic syndrome, and type 2 diabetes. SAGE Publications. https://doi.org/10.1177/193229681000400324

[ShaunaTX]

On 10/21/2021 at 5:53 PM, icelandgirl said:

Hi again,

When my thyroid levels were off a bit, higher TSH, lower FT4, my cholesterol was in a bad spot, especially my triglycerides...in fact that's the only time the triglycerides have been elevated.  I remember having them rechecked after 6 weeks on an increased dose of thyroid meds and they were back to normal.

I am on Levoxyl (brand name) and I take 100 mcg per day.  I've been on a thyroid med for over 20 years...I started off at 50 mt just seems like you could possibly benefit from a bit of T4 med, levothyroxine being the generic...name brands are Synthroid and Levoxyl based on your symptoms and labs.  When I get hypothryoid my hair gets very coarse and just dry and unhealthy looking.

I hope that helps!

 

 

The reason people are not prescribed Synthroid/ Levoxyl (levothyroxine), Cytomel (liothyronine) or Armour when their thyroid panel is normal is it can result in factitious or exogenous hyperthyroidism (MedlinePlus, 2020). If this hyperactive state continues for a long period of time severe complications can occur: Afib (increase risk of clots, stroke or death from heart attack), infertility, chest pains (palpitations/angina), decreased bone density, insomnia or anxiety (MedlinePlus, 2020). Other complications are dilated cardiomyopathy and high-output heart failure (Osuna et al., 2017). So medication is not something to gamble with when it is not medically necessary. Funny thing is I educated a doctor that is very up-to-date on evidence-based practice guidelines on the new updated recommendations for TSH levels in geriatric patients as they are more cardiac sensitive to lower TSH numbers… for this same exact reason. He copied the research I provided him and implemented them into is practice the same day.

Side note: In case you were unaware, biotin can cause false thyroid results and is implemented in a lot of OTC products. This largely depends on which lab is set up to adjust for the biotin content, but who really knows what lab does what unless you really look into it. So it’s recommended to stop these products, unless directed otherwise by your provider for medical purposes, at least 2-3 days, and longer if it is a high dose (Li et al., 2020; Lab tests online, 2018).

Additionally, it is always best to get your blood drawn around the same time, every time you have your thyroid panel tested, preferably in the morning BEFORE you take your medication (if on meds; Schmidt, 2019). Also, research shows food can alter results as well, thus recommending to get fasting labs done (Nair et al., 2014). Best take-home: be consistent with your routine every time!

References

Lab Tests Online. (2018, August 1). FDA warns that biotin may affect some lab test results. https://labtestsonline.org/news/fda-warns-biotin-may-affect-some-lab-test-results

 Li, D., Ferguson, A., Cervinski, M. A., Lynch, K. L., & Kyle, P. B. (2020). AACC guidance document on biotin interference in laboratory tests. The Journal of Applied Laboratory Medicine, 5(3), 575-587. https://www.aacc.org/science-and-research/aacc-academy-guidance/biotin-interference-in-laboratory-tests

MedlinePlus. (2020, May 13). Factitious hyperthyroidism. https://medlineplus.gov/ency/article/000309.htm

Nair, R., Mahadevan, S., Muralidharan, R. S., & Madhavan, S. (2014). Does fasting or postprandial state affect thyroid function testing? Indian Journal of Endocrinology and Metabolism, 18(5), 705-707. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171896/

Osuna, P. M., Udovcic, M., & Sharma, M. D. (2017). Hyperthyroidism and the heart. Methodist DeBakey Cardiovascular Journal, 13(2), 60-63. https://journal.houstonmethodist.org/article/10.14797/mdcj-13-2-60/

Schmidt, J. (2019, August 12).  Does it matter what time of day you book your thyroid testing?     https://www.naturmend.com/blog/2019/08/12/thyroid-testing/

[donuthole]

I'd recommend you check out the facebook group for Hashimoto's (https://www.facebook.com/groups/hashimotos411). They have a ton of resources and guides, and you can search through other people's questions. Since your TPO is above normal range you have Hashi's but it may not be active at this point in time (or it is active but not enough tissue has been destroyed to affect your TSH/T4/T3 labs). Unless you took biotin in the days before your lab work (this can mess with how the lab's equipment measures your levels and you get numbers that are not reflective of your actual state), a conventional doctor won't medicate you -- yet. This happened to me the first time, they basically told me I need to wait until more of my thyroid is destroyed before I can get on some meds.

The TPO numbers differ for various people. Some in the facebook group are also barely positive. You can have a very high number and have no symptoms, because the antibodies are just chilling there and not attacking, or you can have a low number and they are actively attacking. Overall you want to bring the number down with diet and other things (e.g. getting rid of mold in your body if you have it, taking care of SIBO if you have it, getting rid of Lyme disease if you have it, etc.).

In the group they have recommendations for what kind of doctor to see. I don't think it matters so much whether it's a PCP or a specialist or a neuropath, as long as they know what they're doing. In the group they recommend avoiding endocrinologists. I personally see one and even though he doesn't quite run the right labs (in the group, they recommend running free T3 and reverse T3, rather than measuring the total T3), I'm ok with how I feel right now and the dose of meds that I'm on, so I'll keep him for now.

The ultrasound may show some changes in the structure of the thyroid that are consistent with Hashimoto's, like "increased vascularity" due to inflammation.

Good luck!