Hard to believe hashimoto-diagnosis :(

[Wheatwacked]

On 10/21/2021 at 11:34 AM, chocoholic said:

lethargy and exhaustion, headaches/migraines, major sleep issues, depression, kinked hair texture, super dry skin and general feeling ill.

These can all be signs of vitamin and mineral deficiencies, most of which will not show in blood tests.  Is it possible for your slightly high TPO is a result of your Celiac Disease or maybe a one time thing?  My FIT test for colorectal cancer came back positive. I stopped all supplements and retook it 10 days later, it was negative.

Before starting treatment for Hashimoto make sure you are getting all the neccessary nutrients because there is no going back. Celiac was first identified as a cause of malabsorbtion syndrome. In addition there are numerous Vitamins and minerals that the American population does not get enough of and its effects are largely ignored by the medical industry, especially where there is a popular pill for it. If there are multiple nutrients involved, there are numerous Diseases that those deficiencies will mimic. I once went to a website that said it will create a meal plan based on my goals.  I asked for one that gave me 100% DRI of potassium at around 2000 calories. They created a healthy and tasty looking plan. A note at the bottom said. "Here is your meal plan. It supplies almost half of your daily potassium requirements." Well, what about the other half? How many others were also lacking in this healthy plan that no one looks at, like choline, B5, potassium, vitamin K, folate instead of folic acid, non synthetic vitamin E and A? Vitamin D plasma is consistantly low in autoimmune diseases but the RDA is based solely on rickets and osteomalasia requirements set a hundred years ago.

Quote

Moderately increased levels of thyroperoxidase (TPO) antibodies may be found in patients with non-thyroid autoimmune disease such as pernicious anemia, type I diabetes, or other disorders that activate the immune system.   https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/81765

 

[ShaunaTX]

On 10/30/2021 at 12:50 PM, Wheatwacked said:

These can all be signs of vitamin and mineral deficiencies, most of which will not show in blood tests.  Is it possible for your slightly high TPO is a result of your Celiac Disease or maybe a one time thing?  My FIT test for colorectal cancer came back positive. I stopped all supplements and retook it 10 days later, it was negative.

Before starting treatment for Hashimoto make sure you are getting all the neccessary nutrients because there is no going back. Celiac was first identified as a cause of malabsorbtion syndrome. In addition there are numerous Vitamins and minerals that the American population does not get enough of and its effects are largely ignored by the medical industry, especially where there is a popular pill for it. If there are multiple nutrients involved, there are numerous Diseases that those deficiencies will mimic. I once went to a website that said it will create a meal plan based on my goals.  I asked for one that gave me 100% DRI of potassium at around 2000 calories. They created a healthy and tasty looking plan. A note at the bottom said. "Here is your meal plan. It supplies almost half of your daily potassium requirements." Well, what about the other half? How many others were also lacking in this healthy plan that no one looks at, like choline, B5, potassium, vitamin K, folate instead of folic acid, non synthetic vitamin E and A? Vitamin D plasma is consistantly low in autoimmune diseases but the RDA is based solely on rickets and osteomalasia requirements set a hundred years ago.

 

It’s smart that they are only give you 1/2 of your DRI on potassium in a meal and not the whole thing. We get potassium and other vitamins and minerals in different foods that all add up. Potassium is not an electrolyte to mess around with. I’ve seen multiple patients throw themselves into arrhythmia that could have been fatal because they added potassium supplement into their diet at was already high in potassium, when it was not medically necessary according to their labs. 

Can always as your provider to run a CMP with Mag, and check major vitamins, and minerals for you. If they don’t want to, a DO, functional medicine or naturopathic doctor can help. Along with integrative nurse practitioners. I just had my clinical with one last spring and they tested for all those and beyond. 
 

But I agree that not only does hypothyroid cause the listed symptoms, but they are found in deficiencies as well as stress. 
Stress can impact the body in many ways, like cause all of your symptoms including kinked hair, and cause a variety of symptoms and diseases. 

Kinked hair can be caused by stress, deficiencies, hair products, curling/flat irons, genetics, other hormone imbalances (not just thyroid, especially since yours is normal), and aging. 

side note for FIT tests that I have heard from multiple doctors and NPs, if it’s positive; it’s like already finding a problem if there’s already blood present. 

also, there are false-positives and false-negatives with FIT, I wouldn’t want to gamble with it. I understand the bowel prep “golytely” doesn’t go so lightly,  but you only have to do it once every 10 years if everything is good unless there is something found or your high risk. 
Also the prep would be easier to take if it’s on ice and if you try having more of a liquid diet a few days beforehand. I know not all MDs require you to drink the whole thing, my patients just had to poop clear. Once they did that, they could stop. Reason to start liquids before the prep

But again, check MD is different. 

Also, if the FIT is positive, it’s recommended you get a colonoscopy anyway (USPSTF; 2021). 

https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/colorectal-cancer-screening

[Wheatwacked]

On 11/1/2021 at 2:32 AM, ShaunaTX said:

1/2 of your DRI on potassium in a meal and not the whole thing.

It was a meal plan for the entire day, not just a meal. That left me at 2300 mg for the day instead of the recommended 4700 mg. The FDA limits potassium supplement to less than 100 mg per dose because the supplements cause upper gastrointestinal lesions.(1) Better off with a 1/4 banana or a cup of black coffee. That's still only 1/50 There is no RDA upper limit on dietary potassium. The problem as I see it is that physicians like to prescribe potassium saving blood pressure meds for high blood pressure. Then they recommend limiting potassium because the meds may cause hyperkalemia. But low potassium intake is linked to high blood pressure, diabetes, bone loss, stroke and kidney stones. Last time I looked there were only two cases documented on the internet for hyerkalemia from supplements. They were guys that took downed 8 tablespoons of Potassium Bitartrate (Cream of Tarter) along with a sports drink. Dumb and Dumber.

Quote

from: Potassium Fact Sheet for Health Professionals   https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

Dietary surveys consistently show that people in the United States consume less potassium than recommended,... The DV for potassium is 4,700 mg for adults and children age 4 years and older.

In healthy people with normal kidney function, high dietary potassium intakes do not pose a health risk because the kidneys eliminate excess amounts in the urine ...Certain diuretics (e.g., thiazide diuretics) that are commonly used to treat high blood pressure increase urinary potassium excretion and can cause hypokalemia [7,8]. Potassium- sparing diuretics, however, do not increase potassium excretion and can actually cause hyperkalemia. 

The intracellular concentration of potassium is about 30 times higher than the extracellular concentration, and this difference forms a transmembrane electrochemical gradient that is maintained via the sodium-potassium (Na+/K+) ATPase transporter [4]. In addition to maintaining cellular tonicity, this gradient is required for proper nerve transmission, muscle contraction, and kidney function....

The DV for potassium is 4,700 mg for adults and children age 4 years and older [17]. FDA requires the new food labels to list potassium content.

the FDA has ruled that some oral drug products that contain potassium chloride and provide more than 99 mg potassium are not safe because they have been associated with small-bowel lesions...

the 2015–2020 Dietary Guidelines for Americans identifies potassium as a “nutrient of public health concern”

Insufficient potassium intakes can increase blood pressure, kidney stone risk, bone turnover, urinary calcium excretion, and salt sensitivity (meaning that changes in sodium intakes affect blood pressure to a greater than normal extent) 

Groups at Risk of Potassium Inadequacy: People with inflammatory bowel diseases

Certain diuretics (e.g., thiazide diuretics) that are commonly used to treat high blood pressure increase urinary potassium excretion and can cause hypokalemia [7,8]. Potassium- sparing diuretics, however, do not increase potassium excretion and can actually cause hyperkalemia. 

Higher potassium intakes have been associated with a decreased risk of stroke and possibly other cardiovascular diseases (CVDs) [16,49]. A meta-analysis of 11 prospective cohort studies in 247,510 adults found that a 1,640 mg per day higher potassium intake was associated with a significant 21% lower risk of stroke as well as nonsignificant lower risks of coronary heart disease and total CVD 

Observational studies show inverse associations between dietary potassium intakes and risk of kidney stones...Similarly, in over 90,000 women aged 34–59 who participated in the Nurses’ Health Study and had no history of kidney stones, those who consumed an average of over 4,099 mg of potassium per day had a 35% lower risk of kidney stones over a 12-year follow-up period than those who averaged less than 2,407 mg of potassium per day

Observational studies suggest that increased consumption of potassium from fruits and vegetables is associated with increased bone mineral density [57]. This evidence, combined with evidence from metabolic studies and a few clinical trials, suggests that dietary potassium may improve bone health...higher potassium intake was associated with significantly greater bone mineral density in 628 elderly men and women 

potassium is needed for insulin secretion from pancreatic cells, hypokalemia impairs insulin secretion and could lead to glucose intolerance [2]. This effect has been observed mainly with long-term use of diuretics 

Numerous observational studies of adults have found associations between lower potassium intakes or lower serum or urinary potassium levels and increased rates of fasting glucose, insulin resistance, and type 2 diabetes...the highest quintile of potassium intake had a 38% lower risk of developing type 2 diabetes

 

 

 

(1) Upper gastrointestinal lesions after potassium chloride supplements: a controlled clinical trial   https://pubmed.ncbi.nlm.nih.gov/6127542/

[chocoholic]

Thank you all so much for your comments - I apologize for not checking back in sooner...I've been having a very stressful time.

I'll be having my thyroid exam next Tuesday. So far it's not for certain what kinds of tests will be done, but most likely an ultrasound and bloodwork. Perhaps also a scintigraphy.

New question to you all: Would you consider it crazy to intentionally gluten myself to see if my thyroid antibodies go up in order to secure a more reliable diagnosis?

I may start a new thread on this subject.

[Wheatwacked]

 

1 hour ago, chocoholic said:

Would you consider it crazy to intentionally gluten myself to see if my thyroid antibodies go up in order to secure a more reliable diagnosis?

Yes.

Your goal is to improve your health. You already know you are sick. Apparently the only accurate measurement of iodine intake status is urinary and even there it is variable.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3637997/

Supplementing iodine might improve your condition.   The RDA is 150 mcg minimum to 1100 mcg upper limit.  Unfortunately when you increase your iodine intake the Wolff-Chaikoff effect kicks in and your tests are soon.  "The Wolff-Chaikoff effect is thought to be transient, with the thyroid gland returning to its near-normal hormone synthesis in 26-50 hours in normal subjects 2. It provides temporary protection against the thyroid gland synthesizing an excessive quantity of thyroid hormones in states of excess iodine.   https://radiopaedia.org/articles/wolff-chaikoff-effect?lang=us

9 Healthy Foods That Are Rich in Iodine   https://www.healthline.com/nutrition/iodine-rich-foods

Quote

"Participants with average annual iodine excretion below 50 microg/24 h had a negative correlation between iodine excretion and TSH, whereas a positive correlation was observed when average annual iodine excretion was above this level.  https://pubmed.ncbi.nlm.nih.gov/11331211/

 

Quote

overall the small risks of iodine excess are far outweighed by the substantial risks of iodine deficiency.    https://pubmed.ncbi.nlm.nih.gov/18676011/

 

 

[donuthole]

44 minutes ago, Wheatwacked said:

 

Yes.

Your goal is to improve your health. You already know you are sick. Apparently the only accurate measurement of iodine intake status is urinary and even there it is variable.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3637997/

Supplementing iodine might improve your condition.   The RDA is 150 mcg minimum to 1100 mcg upper limit.  Unfortunately when you increase your iodine intake the Wolff-Chaikoff effect kicks in and your tests are soon.  "The Wolff-Chaikoff effect is thought to be transient, with the thyroid gland returning to its near-normal hormone synthesis in 26-50 hours in normal subjects 2. It provides temporary protection against the thyroid gland synthesizing an excessive quantity of thyroid hormones in states of excess iodine.   https://radiopaedia.org/articles/wolff-chaikoff-effect?lang=us

9 Healthy Foods That Are Rich in Iodine   https://www.healthline.com/nutrition/iodine-rich-foods

 

 

 

Supplementation with iodine is a very bad idea if you have thyroid antibodies. (I don't remember, did you say you were deficient?) Please join the facebook group I mentioned, they have a lot of educational material. You can read more about iodine here: https://thyroidpharmacist.com/articles/iodine-hashimotos/

Thyroid antibodies don't change quickly (they recommend you test them every 6 months) and they don't reflect what's really going on (you can be in remission and have the antibodies, they're just not actively attacking you). I went gluten free and my thyroid antibody levels (TPO) did not budge, but the tTG ones went down.

[knitty kitty]

I found this study that describes common vitamin deficiencies found in autoimmune thyroiditis.  

The fat soluble vitamins, Vitamin D, Vitamin E, and Vitamin A, were found to be low, as well as deficiencies in the water soluble B vitamins Thiamine (Vitamin B1), Pyridoxine (Vitamin B6), and B12 (Cobalamine).   

Remember that the damage to the small intestine in Celiac Disease results in vitamin deficiencies such as these.  Correction of vitamin deficiencies will help your body function as it is designed to.  Your body is not sick because it's deficient in pharmaceuticals, it's sick because it's deficient in the proper vitamins.  

 

[PDF] Autoimmune Diseases and Vitamin Deficiencies on Autoimmune Thyroiditis, With Special Attention to Hashimoto Thyroiditis - Longdom Publishing
www.longdom.org › open-access

http://www.google.com/url?q=https://www.longdom.org/open-access/autoimmune-diseases-and-vitamin-deficiencies-on-autoimmune-thyroiditis-with-special-attention-to-hashimoto-thyroiditis-2327-4972-1000232.pdf&sa=U&ved=2ahUKEwjporHh1ZP0AhU3mWoFHfqSCzMQFnoECAcQAg&usg=AOvVaw09hw7AmkGOLDW1RNeOnDXd

 

[Wheatwacked]

21 hours ago, donuthole said:

Supplementation with iodine is a very bad idea

Agreed. I am however repeating what the NIH Dept of Dietary Supplements states. The minimum daily intake for adults over the age of 19, from food sources, is 150 mcg a day and they recommend not exceeding 1100 mcg.  Iodine is just one of many essential nutrients.

From Dr Wentz: "Thyroid cells are the only cells in the body which can absorb iodine"

Response: "A healthy adult body contains 15-20 mg of iodine, 70-80% of which is stored in the thyroid gland." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063534/.  "While major portion of iodine is concentrated in the thyroid gland, the non hormonal iodine is found in a variety of body tissues including mammary glands, eye, gastric mucosa, cervix and salivary glands (7). With the exception of mammary tissue the function of iodine in these tissues is still not clear"   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063534/#:~:text=Iodine is mostly concentrated in,stored in the thyroid gland.

Dr Wentz: "This global spike in iodine consumption over the past two decades...

Response: "Urinary iodine measurements from NHANES have been used since 1971 to monitor the iodine status of the U.S. population [31]. Since the inception of the NHANES monitoring program, urinary iodine measurements have shown that the general U.S. population is iodine sufficient. This is despite the fact that 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.  https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

Dr Wentz: When not enough selenium or glutathione is present to neutralize the hydrogen peroxide, oxidative damage, which leads to inflammation and autoimmunity, can occur...Check out my articles on the benefits of supplementing with selenium and going gluten free to learn more.

Response: So the issue here seems to be not so much too much iodine, but not enough Selenium. RDA for Selenium is 55 mcg upper limit is 400 mcg. "Selenium deficiency is a risk factor, due to the malabsorption, in celiac disease (celiac disease) because the inflammatory damage affects the small intestine; this deficiency can modulate SeP genes expression, with consequent reiteration of inflammation and increase of mucosal damage." https://pubmed.ncbi.nlm.nih.gov/19034261/.     "Our study found that among women with high selenium levels, high iodine levels were associated with a risk of breast cancer that was about 25% lower than among women with low iodine levels. This is in line with the hypothesis that the combination of high iodine and high selenium levels, as seen in Japanese women, can be related to a low risk of breast cancer"   https://cebp.aacrjournals.org/content/cebp/early/2020/05/23/1055-9965.EPI-20-0122.full.pdf

[Wheatwacked]

Thiamine which participates in the conversion of carbohydrates into energy is necessary for the process of assimilation of proteins and fats. It is involved in the release of hydrochloric acid in the stomach, indispensable in the digestion of proteins (not only thiamine but all B-vitamins have carrier functions in the pathways leading from carbohydrates, fats, or proteins to AcCoA and via citric acid cycle and oxidative phosphorylation to ATP replenishment). The main symptom of its deficiency is chronic fatigue in Hashimoto...A strong correlation was found between the size of the thyroid and the severity of vitamin A deficiency [18]. Only a few studies have been carried out assessing the effect of vitamin A supplementation on thyroid function and treatment of Hashimoto's disease [19]. That supplementation with this vitamin may affect the activity of TSH. Leading to a decrease in its concentration and reducing the risk of appearance or reduction of the size of the thyroid....A study conducted by Kivity et al. [34] showed that the prevalence of vitamin D deficiency was significantly higher in patients with autoimmune thyroid disease (72%) than in healthy patients (30.6%) and in patients with Hashimoto (79%) compared to patients without autoimmune thyroid disease (52%). Also, there was an increase in TSH values with an increase in vitamin D deficiency and an inverse correlation between vitamin deficiency and the presence of positive antithyroid antibodies...However, despite the widespread belief of the beneficial eوٴects on health and common availability of vitamins, there are currently only few publications describing the role of vitamins in the prevention and treatment of thyroid diseases   https://www.longdom.org/open-access/autoimmune-diseases-and-vitamin-deficiencies-on-autoimmune-thyroiditis-with-special-attention-to-hashimoto-thyroiditis-2327-4972-1000232.pdf

[chocoholic]

Hi everyone,

I'll just write one comment instead of several individual replies for less clutter - hope that's ok. Thank you all again for your input and the effort you've put into researching. 💛

I had my appointment with a nuclear medical doc yesterday. Turns out a scintigraphy is only applicable in cases with tumors, so not for me.

My ultrasound was normal with some inflamed areas that the doc said were in themselves no indicator of hashimoto, as they also occur in healthy thyroids.

However, he said that even slightly elevated thyroid antibodies suffice for a hashimoto diagnosis and that I have it.

Since 3 months had passed since my initial blood test for this, he ordered a new blood test. He said he wouldn't expect the result to be any different now.

He said I'm in the early stage of thyroid decay and would prescribe 50mg of thyroxine depending on the new blood test result. He also asked me to quit using iodized salt (this has been a topic here). He also said that a biopsy is not done in the absence of tumors (contradicting what I have read).

I will report back once I have his report.

[chocoholic]

In case anyone is interested, here are the findings of my recent blood test.

I picked up the doc's report from the front desk but haven't seen my GP yet.

FT3: 3.51 pg/ml (normal range 2.00 - 4.20pg/ml)

TSH basal: 4.91 mcU/ml (normal range 0.35 - 4.50 mcU/ml)

TPO: < 3 IU/ml (<5.61 IU/ml = negative)

He wrote that the normal TPO value means my thyroid is not or no longer subject to an autoimmune process. He mentions the raised TSH secretion and the according latent hypothyroid metabolism. He is not recommending any medication. Another blood test in 3 months. Ultrasound in 12 months.

I was so upset about this yesterday. 😰 First I'm told one thing, 3 months later another, and even this week he told me the TPO value is unlikely to change and that I'll be taking thyroxine.

Now I'm back to where I started! This is insane! And nothing to be done about my high TSH!? And how is such a high value conducive to getting pregnant? How can thyroid hormones vary to such an extent in such a short time?

[trents]

I think thyroid hormones work like blood pressure. Depending on the day and the time of day and probably a number of other factors, there can be considerable variance in results from different samples. It would probably be more helpful to get thyroid hormones tested several times over time at the same time of day. I know that this is not very practical. Given that, I think what doctors are looking for is a dramatic departure from normal at a given blood draw which your readings are not. Therefore, symptoms need to be taken into account as much as readings IMO since symptoms are persistent. I could be wrong but those are my thoughts.

[ShaunaTX]

On 11/12/2021 at 11:54 AM, donuthole said:

Supplementation with iodine is a very bad idea if you have thyroid antibodies. (I don't remember, did you say you were deficient?) Please join the facebook group I mentioned, they have a lot of educational material. You can read more about iodine here: https://thyroidpharmacist.com/articles/iodine-hashimotos/

Thyroid antibodies don't change quickly (they recommend you test them every 6 months) and they don't reflect what's really going on (you can be in remission and have the antibodies, they're just not actively attacking you). I went gluten free and my thyroid antibody levels (TPO) did not budge, but the tTG ones went down.

Every person’s health is individualized by treatment and how they will react to treatment, food, etc. Such as my TPO dropped drastically after going gluten-free and yours did not budge. So what works for some won’t work for others. Reason why it’s call the PRACTICE of allopathic or naturopathic medicine, etc. 

But I do agree you you that iodine supplements are a very bad idea unless someone is deficient, which typically occurs in third world but not industrialized countries since salt and other processed foods are manufactured with iodine already in them.  

[ShaunaTX]

8 hours ago, chocoholic said:

In case anyone is interested, here are the findings of my recent blood test.

I picked up the doc's report from the front desk but haven't seen my GP yet.

FT3: 3.51 pg/ml (normal range 2.00 - 4.20pg/ml)

TSH basal: 4.91 mcU/ml (normal range 0.35 - 4.50 mcU/ml)

TPO: < 3 IU/ml (<5.61 IU/ml = negative)

He wrote that the normal TPO value means my thyroid is not or no longer subject to an autoimmune process. He mentions the raised TSH secretion and the according latent hypothyroid metabolism. He is not recommending any medication. Another blood test in 3 months. Ultrasound in 12 months.

I was so upset about this yesterday. 😰 First I'm told one thing, 3 months later another, and even this week he told me the TPO value is unlikely to change and that I'll be taking thyroxine.

Now I'm back to where I started! This is insane! And nothing to be done about my high TSH!? And how is such a high value conducive to getting pregnant? How can thyroid hormones vary to such an extent in such a short time?

 

Per a previous reply to you, factors such as taking biotin, or a multivitamin with biotin in it, timing of blood draw, etc. will change lab results, and there are such things as false-positive and false negative results that's why labs may get repeated. Interestingly, there was a study that is linking anxiety to thyroid  inflammation and elevated thyroid levels. Also, TSH ranges vary depending on the labs. Some say normal is 0.5-5.0 others say 0.5-4.5. So your "such a high value" is not high at all. My TSH was 84 at baseline before being treated. I just saw a patient the other day with a TSH of 236, and my husband works in the lab and has seen a TSH over 700.

Either way, IF you had subclinical hypothyroid, it is not typically treated until a TSH over 10. This is due to the increase risk of conditions like atrial fibrillation and osteoporosis that comes along with taking thyroid hormones. Moreover, there is no sufficient evidence that there are fertility issues in women with subclinical hypothyroid, only overt hypothyroid. I just finished my women's health rotation, and the provider I was with informed many women that if they have regular menstrual cycles while off birth control, they can get pregnant!  One factor that most likely will affect you getting pregnant, is your anxiety. The what seems like unnecessary diagnostic tests (US/scintigraphy) unless a nodule was detected kind of encourages the anxiety. Also, the scintigraphy exposes you to radiation, even if it is in small amounts.

My suggestion... step away from the thyroid train and breathe! Because the overwhelming panic I am reading in your posts will not benefit you in anyway, and may only add to the chaos as anxiety can take a toll on the body! 

https://www.medicalnewstoday.com/articles/anxiety-disorders-are-linked-to-inflamed-thyroid-glands

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7022757/

https://www.ahajournals.org/doi/10.1161/circulationaha.117.028753

https://www.getroman.com/health-guide/long-term-side-effects-synthroid/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5961023/

https://www.webmd.com/baby/features/infertility-stress#1

[chocoholic]

5 hours ago, ShaunaTX said:

 

Per a previous reply to you, factors such as taking biotin, or a multivitamin with biotin in it, timing of blood draw, etc. will change lab results, and there are such things as false-positive and false negative results that's why labs may get repeated. Interestingly, there was a study that is linking anxiety to thyroid  inflammation and elevated thyroid levels. Also, TSH ranges vary depending on the labs. Some say normal is 0.5-5.0 others say 0.5-4.5. So your "such a high value" is not high at all. My TSH was 84 at baseline before being treated. I just saw a patient the other day with a TSH of 236, and my husband works in the lab and has seen a TSH over 700.

Either way, IF you had subclinical hypothyroid, it is not typically treated until a TSH over 10. This is due to the increase risk of conditions like atrial fibrillation and osteoporosis that comes along with taking thyroid hormones. Moreover, there is no sufficient evidence that there are fertility issues in women with subclinical hypothyroid, only overt hypothyroid. I just finished my women's health rotation, and the provider I was with informed many women that if they have regular menstrual cycles while off birth control, they can get pregnant!  One factor that most likely will affect you getting pregnant, is your anxiety. The what seems like unnecessary diagnostic tests (US/scintigraphy) unless a nodule was detected kind of encourages the anxiety. Also, the scintigraphy exposes you to radiation, even if it is in small amounts.

My suggestion... step away from the thyroid train and breathe! Because the overwhelming panic I am reading in your posts will not benefit you in anyway, and may only add to the chaos as anxiety can take a toll on the body! 

https://www.medicalnewstoday.com/articles/anxiety-disorders-are-linked-to-inflamed-thyroid-glands

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7022757/

https://www.ahajournals.org/doi/10.1161/circulationaha.117.028753

https://www.getroman.com/health-guide/long-term-side-effects-synthroid/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5961023/

https://www.webmd.com/baby/features/infertility-stress#1

Hi Shauna,

thanks for your comment. My blood tests were done at the same time of day and on an empty stomach (no food for 10 hours). The only supplements I take are iron, zinc, folic acid and vitamin D. Which I didn't take for 2 days before the blood test just in case.

I know that TSH values can run much higher in other people. I've read in many posts in family forums by women successfully receiving fertility treatment that according to their doctors, a TSH should not be higher than 1 in order to conceive and carry out a normal pregnancy. 

I've been having the same signs & symptoms for decades now. I'm 43. Just like it was with celiac, I know I am ill and would like to finally know what it is. I started investigating in my early 20s and have the lab tests to prove it. I have reason to believe I'm infertile, independent of any tests. And even when accepting that having children is not possible, I would still be feeling ill.

Yes, at this point I feel panicked and hopeless...why would I not after everything I've tried, and with no prospect of getting better? It's like being told not to be sad when that's how you feel. It doesn't work.

💔

[knitty kitty]

2 hours ago, chocoholic said:

the only supplements I take are iron, zinc, folic acid and vitamin D. Which I didn't take for 2 days before the blood test just in case.

I've been having the same signs & symptoms for decades now. I'm 43. Just like it was with celiac, I know I am ill...

Yes, at this point I feel panicked and hopeless...why would I not after everything I've tried, and with no prospect of getting better? It's like being told not to be sad when that's how you feel. It doesn't work.

💔

"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."

 

@chocoholic,

I'm curious as to why you are taking only folic acid.  

Folic acid supplementation is known to mask B12 deficiency.  

B12 deficiency symptoms include many of the symptoms you mentioned above.  

B12 deficiency is common in Celiac Disease and hypothyroidism.

Here's an article that may be of interest.....

"Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies"

https://www.karger.com/Article/FullText/505094#top

"Patients with both hypothyroidism and vit-B12 deficiency also have similar symptoms. Symptoms such as fatigue, weakness, dementia, depression, memory impairment, lethargy, and tingling are frequently seen in patients with hypothyroidism and vit-B12 deficiency. Thus, vit-B12 deficiency may be ignored in hypothyroidism."

 

You might choose to get your B12 level checked, but you'll need to stop supplementing with folic acid for several weeks first.

Remember that the eight B vitamins all work together.  Supplementing just one of them may throw the others out of balance.  It's better to supplement all of the eight B vitamins.  They are water soluble and nontoxic.  

Hope this helps!

 

[chocoholic]

59 minutes ago, knitty kitty said:

"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."

 

@chocoholic,

I'm curious as to why you are taking only folic acid.  

Folic acid supplementation is known to mask B12 deficiency.  

B12 deficiency symptoms include many of the symptoms you mentioned above.  

B12 deficiency is common in Celiac Disease and hypothyroidism.

Here's an article that may be of interest.....

"Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies"

https://www.karger.com/Article/FullText/505094#top

"Patients with both hypothyroidism and vit-B12 deficiency also have similar symptoms. Symptoms such as fatigue, weakness, dementia, depression, memory impairment, lethargy, and tingling are frequently seen in patients with hypothyroidism and vit-B12 deficiency. Thus, vit-B12 deficiency may be ignored in hypothyroidism."

 

You might choose to get your B12 level checked, but you'll need to stop supplementing with folic acid for several weeks first.

Remember that the eight B vitamins all work together.  Supplementing just one of them may throw the others out of balance.  It's better to supplement all of the eight B vitamins.  They are water soluble and nontoxic.  

Hope this helps!

 

Hi Knitty Kitty,

my B12 was extremely high a year ago (1140 pmol/l, normal range 156-672). It is now 492.

[Wheatwacked]

20 hours ago, chocoholic said:

Now I'm back to where I started! This is insane! And nothing to be done about my high TSH!

What is your plasma vitamin D? I mentioned previously that there can be an inverse relation with TSH, ie low D causes high TSH. I also know from personal experience that raising D can relieve long term depression. I take 10,000 iu a day for the past 7 years and mine is only 87 ng/ml. My son, biopsy diagnosed as an infant (45 yr old now) works full time on the beach plenty of sunshine yet still tested last week with low D.   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

You might try getting your folate from foods instead of folic acid

Quote

 

Common folic acid side effects may include:

nausea, loss of appetite;

bloating, gas, stomach pain;

bitter or unpleasant taste in your mouth;

confusion, trouble concentrating;

sleep problems;

depression; or

feeling excited or irritable.   https://www.drugs.com/folic_acid.html

 

 

[knitty kitty]

@chocoholic,

Have you had any investigation into pernicious anemia?

Folic acid supplementation prevents one sign of B12 deficiency, extremely large red blood cells (megaloblasts).  

Pernicious anemia occurs when the intrinsic factor needed to absorb B12 is not being produced by parietal cells in the stomach because they are being attacked by autoantibodies.  

"Anti-parietal cell antibodies - diagnostic significance"

https://pubmed.ncbi.nlm.nih.gov/26918709/

If there's a thiamine deficiency, then B12 levels can become elevated.  

B12 can be stored in the liver for a couple of years.  If there's a problem with the intrinsic factor and B12 can't be absorbed, the body would rely on the B12 stored in the liver until those became exhausted. 

That seems like a big drop in your B12 levels over a short period.  I'm not a doctor.  Just making an observation.   

Folic acid is synthetic.  It is used to enrich wheat products because it has a long shelf life.  Folate is the more bioavailable form.  I supplement with folate.  Perhaps a change to folate would be beneficial.

 

[chocoholic]

On 11/21/2021 at 2:31 PM, Wheatwacked said:

What is your plasma vitamin D? I mentioned previously that there can be an inverse relation with TSH, ie low D causes high TSH. I also know from personal experience that raising D can relieve long term depression. I take 10,000 iu a day for the past 7 years and mine is only 87 ng/ml. My son, biopsy diagnosed as an infant (45 yr old now) works full time on the beach plenty of sunshine yet still tested last week with low D.   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

You might try getting your folate from foods instead of folic acid

 

My vitamin D (25OH-Vit.D) is 36.4 (normal 19.1 - 72.0). I've been taking 10,000 IU (D3) daily for the past 2 years. Either I don't absorb more or it doesn't contain as much as it claims.

[chocoholic]

On 11/21/2021 at 2:46 PM, knitty kitty said:

@chocoholic,

Have you had any investigation into pernicious anemia?

Folic acid supplementation prevents one sign of B12 deficiency, extremely large red blood cells (megaloblasts).  

Pernicious anemia occurs when the intrinsic factor needed to absorb B12 is not being produced by parietal cells in the stomach because they are being attacked by autoantibodies.  

"Anti-parietal cell antibodies - diagnostic significance"

https://pubmed.ncbi.nlm.nih.gov/26918709/

If there's a thiamine deficiency, then B12 levels can become elevated.  

B12 can be stored in the liver for a couple of years.  If there's a problem with the intrinsic factor and B12 can't be absorbed, the body would rely on the B12 stored in the liver until those became exhausted. 

That seems like a big drop in your B12 levels over a short period.  I'm not a doctor.  Just making an observation.   

Folic acid is synthetic.  It is used to enrich wheat products because it has a long shelf life.  Folate is the more bioavailable form.  I supplement with folate.  Perhaps a change to folate would be beneficial.

 

That's an interesting thought Knitty Kitty. My MCV is normal though (which is supposed to be high for pernicious anemia). I'll bring this up with my GP, although I doubt that she understands this. Normal blood levels, normal everything, she'll say...

[knitty kitty]

3 hours ago, chocoholic said:

That's an interesting thought Knitty Kitty. My MCV is normal though (which is supposed to be high for pernicious anemia). I'll bring this up with my GP, although I doubt that she understands this. Normal blood levels, normal everything, she'll say...

I don't know if you understand what I was trying to say.  

MCV is Mean Corpuscular Volume.  It's a measure of red blood cell size.  

In anemia, the MCV increases.  The cells become large and are called macrocytic because of a deficiency in B12.  

If one is supplementing with folate while one has a deficiency in B12, the change in red blood cell size from normal to macrocytic does not occur.  The MCV remains normal.  This is the folate masking the B12 deficiency. 

Another test for B12 deficiency is the Methylmalonic acid test.  And testing for antibodies against the intrinsic factor.  

A more accurate test for thiamine deficiency is the erythrocyte transketolase test.  

Why were you supplementing with just only folate?

 

[Wheatwacked]

15 hours ago, knitty kitty said:

Why were you supplementing with just only folate?

It's the Western Medicine mindset. "Not feeling well, yes we have a pill for that."

It is slowly becoming clear to me that each of the vitamins and minerals has a primary function, however our chromosomes were programmed with if-then clauses to compensate for environmental variables. If enough choline (liver, eggs, red meat) is not available our cells can substitute other similar vitamins (folate, B12, B5) to pick up the slack. Perhaps not as efficiently so that there are side effects; but well enough to complete the primary goal: Life.

Our bodies also have incredible recycling programming to compensate for poor availablity of certain critical nutrients.

I think the reason my D went from 45 ng/ml in Sept 2018 to 87 ng/mg in Sept 2021, all the time taking 250 mcg D3 a day (10,000 IU) since Feb 2015 was that I supplemented 1000 mg phosphotidyl choline starting in Feb 2020 (choline needs to be processed by the liver to become phosphotidyl).  During that time I also made sure that all my trackable vit and min were above 100% DV so it is impossible to point to one specific with anything more than hubris.

[chocoholic]

19 hours ago, knitty kitty said:

I don't know if you understand what I was trying to say.  

MCV is Mean Corpuscular Volume.  It's a measure of red blood cell size.  

In anemia, the MCV increases.  The cells become large and are called macrocytic because of a deficiency in B12.  

If one is supplementing with folate while one has a deficiency in B12, the change in red blood cell size from normal to macrocytic does not occur.  The MCV remains normal.  This is the folate masking the B12 deficiency. 

Another test for B12 deficiency is the Methylmalonic acid test.  And testing for antibodies against the intrinsic factor.  

A more accurate test for thiamine deficiency is the erythrocyte transketolase test.  

Why were you supplementing with just only folate?

 

Thanks for explaining. I was taking only folic acid because where I live the B complex products are dosed very low, so I didn't bother. I've only been taking folic acid for about 8 months though and my symptoms have been the same for decades. I used to take sublingual B12 (methylcobalamin) for about 20 years before taking a break since my blood level was always normal. Then a while into my break, my B12 was sky high. I thought it could be related to my liver.

[chocoholic]

2 hours ago, Wheatwacked said:

It's the Western Medicine mindset. "Not feeling well, yes we have a pill for that."

It is slowly becoming clear to me that each of the vitamins and minerals has a primary function, however our chromosomes were programmed with if-then clauses to compensate for environmental variables. If enough choline (liver, eggs, red meat) is not available our cells can substitute other similar vitamins (folate, B12, B5) to pick up the slack. Perhaps not as efficiently so that there are side effects; but well enough to complete the primary goal: Life.

Our bodies also have incredible recycling programming to compensate for poor availablity of certain critical nutrients.

I think the reason my D went from 45 ng/ml in Sept 2018 to 87 ng/mg in Sept 2021, all the time taking 250 mcg D3 a day (10,000 IU) since Feb 2015 was that I supplemented 1000 mg phosphotidyl choline starting in Feb 2020 (choline needs to be processed by the liver to become phosphotidyl).  During that time I also made sure that all my trackable vit and min were above 100% DV so it is impossible to point to one specific with anything more than hubris.

Not sure what you mean regarding 'western medicine mindset and a pill for that'. I was taking folic acid as a precautionary measure in case I do get pregnant. I didn't think it would reverse any of my symptoms.