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JaneWhoLovesRain

Thyroid problems - maybe?

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I'm struggling with various vague heath issues - lots of hair loss/thinning, dry hair, extreme insomnia, fatigue, depression, total lack of motivation, unable to concentrate, dry skin, low body temp in the morning, irritability, high LDL, hoarseness, etc.  I never would have thought of hypothyroidism as I am not obese, but instead a bit underweight.  However, I recently stumbled on "hypothyroidism caused by iodine deficiency" and things started clicking. 

In addition to eating gluten free I also eat very little dairy, very little red meat (a pound a year at the most), very little seafood and very low sodium.  I make my own baked goods and omit the salt from all recipes, I don't add salt to anything, either during or after cooking.   My iodine intake has been extremely low for the last 8ish years.  I never gave a second thought to this but now wonder if I may have an iodine deficiency that is causing thyroid problems. 

My TSH was tested in April and it was 2.21.  I went back to the doctor a month ago expressing my concerns about this but he refused to test again saying my thyroid wasn't enlarged and my test was normal in April, and of course he said there was no need to test free T3 or T4.  I'm leaving the jerk and looking for a new doctor (the soonest I can get an appt as a new patient is 3 1/2 months away).  Meanwhile I'm thinking at the rate I'm losing hair I'll be totally bald by then. 

Anyone have any experience with hypothyroidism and have any advice as to how to proceed?  Does it sound like hypo? Can one have hyperthyroidism without having an enlarged thyroid?  I know I can increase my iodine intake but before I do that I really want a base line of what my thyroid levels are and I want to know if this is in fact what my problem is.  And if my thyroid really is okay than something else must be wrong.  I'm so tired of hearing "it's just anxiety" or "that's normal for someone your age" when I know darn well it isn't anxiety or normal!

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All those symptoms can be attributed to several autoimmune disorders.  If you have celiac disease, how are your antibodies?  That would be the place to start.  

I have Hashi's but also had an enlarged thyroid and nodules for years.  My TSH would have to exceed a 5 for me to really feel or see the effects (everyone is different).  You could insist on a thyroid panel to rule it out.   I doubt a doctor would prescribe hormone replacement with a middle range TSH even if you had elevated thyroid antibodies.  The danger would be going hyper which can impact muscle strength (think bulging eyes), bone loss, tremors, etc.  I prefer hypo over hyper and I have experienced both.  

What about other hormones?  Could you be in perimenopause?  

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My GI doctor tested my anitibodies (really not sure which ones though, other than whatever is tested for celiac) last fall and everything was fine.  At 60, I'm beyond perimenopause, lol, which I guess is why the doctor says the way I feel is normal for my age.  But to me it doesn't feel normal.  Dang, how does one know exactly what is "normal?" My PCP refuses to do any thyroid testing on me because my thyroid isn't swollen and my ob/gyn tell me to see m PCP.  Because my symptoms are so generic and can be just about anything I'm more or less left hanging.  

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Thought maybe this article might be helpful.  It explains what all goes into making the thyroid function properly.  

http://hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/

Perhaps ensuring you get the proper nutrients may help your thyroid and your overall health.  Sometimes supplementation is necessary, even on a gluten free diet.  

Hope this helps.

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Kitty kitty, thank you for the link.  I most likely do have several of these deficiencies but before I start self-supplementing I want to get tested so I know for sure what I'm dealing with.  I'm already supplementing with B-12, B-complex, zinc and magnesium but still feel like crap.

Your link led me to find the phrase "board certified clinical nutritionist."  This is the kind of professional I need to see but despite searching I can't find any in my area or even a way to find one by zip code.  Anyone have any idea how to find a board certified clinical nutritionist by zipcode?  I found a "functional chiropractor" a couple years ago and went to him.  He was a great guy but really all he wanted to do was sell me his very high priced vitamins without any back up as to what my problems were other than the answers on his questionaire.  That's not what I'm looking for.

I'm eating gluten free, lo-sodium, lo-bad fat, lo carbs, almost no dairy, almost no meat or fish, lo-added sugar, minimal processed foods, there's not much left for me after removing all of that.

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On 10/6/2017 at 11:15 AM, JaneWhoLovesRain said:

My GI doctor tested my anitibodies (really not sure which ones though, other than whatever is tested for celiac) last fall and everything was fine.  At 60, I'm beyond perimenopause, lol, which I guess is why the doctor says the way I feel is normal for my age.  But to me it doesn't feel normal.  Dang, how does one know exactly what is "normal?" My PCP refuses to do any thyroid testing on me because my thyroid isn't swollen and my ob/gyn tell me to see m PCP.  Because my symptoms are so generic and can be just about anything I'm more or less left hanging.  

Again, my money would be on celiac disease.  It has been a year since you were last tested.  You could have had some gluten exposure.  Maybe a tiny amount every single day.   Maybe you have become more sensitive to gluten.  Maybe 20 parts per million is too high for you personally.  There must be a reason why people with celiac disease are not always healing despite being gluten free.  They can not all be risk-takers and idiots.  Gluten might very well be sneaking into their diet.  Funny, but many people diagnosed with refractory celiac disease improve when they go on a strict gluten-free diet that is basically non-processed (aka Fasano diet).  Let's face, not much research has been done to study long term celiac disease.  All funding is going towards a cure.  Why bother with those who are already diagnosed when a gluten free diet has been documented as the treatment?  I am not knocking celiac researchers.  There is only so much funding available!  

Are you eating oats?  Even "gluten free" oats?  The celiac community has been going back and forth on oats, especially the mechanically sorted oats.  Do not think that General Mills is just producing mechanically sorted oats for just their products!  It might be showing up in a grain product despite even a certified gluten-free product.   There is no recourse or governing from the FDA.  There are guidelines, but no teeth.  It is pretty much voluntary.

This is my own personal speculation.  I have no documented proof.  I do encourage everyone to subscribe to the Gluten Free Watchdog (GFW).  I have no financial or personal ties to GFW.   I subscribe to Consumer Reports too.   I need some relatively non-biased groups to cover my back.  Who has time to research everything?   The GFW seems to be the one of the only groups who are trying to protect celiacs.  

So, before you push hard for thyroid testing with a normal TSH, try a completely non-processed diet for a month or so.  That means no baked goods because those gluten-free grains are processed and I know, like me, you like to bake.  

Seriously, consider trying it.  

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On 10/6/2017 at 8:31 AM, JaneWhoLovesRain said:

I'm struggling with various vague heath issues - lots of hair loss/thinning, dry hair, extreme insomnia, fatigue, depression, total lack of motivation, unable to concentrate, dry skin, low body temp in the morning, irritability, high LDL, hoarseness, etc.  I never would have thought of hypothyroidism as I am not obese, but instead a bit underweight.  However, I recently stumbled on "hypothyroidism caused by iodine deficiency" and things started clicking. 

In addition to eating gluten free I also eat very little dairy, very little red meat (a pound a year at the most), very little seafood and very low sodium.  I make my own baked goods and omit the salt from all recipes, I don't add salt to anything, either during or after cooking.   My iodine intake has been extremely low for the last 8ish years.  I never gave a second thought to this but now wonder if I may have an iodine deficiency that is causing thyroid problems. 

My TSH was tested in April and it was 2.21.  I went back to the doctor a month ago expressing my concerns about this but he refused to test again saying my thyroid wasn't enlarged and my test was normal in April, and of course he said there was no need to test free T3 or T4.  I'm leaving the jerk and looking for a new doctor (the soonest I can get an appt as a new patient is 3 1/2 months away).  Meanwhile I'm thinking at the rate I'm losing hair I'll be totally bald by then. 

Anyone have any experience with hypothyroidism and have any advice as to how to proceed?  Does it sound like hypo? Can one have hyperthyroidism without having an enlarged thyroid?  I know I can increase my iodine intake but before I do that I really want a base line of what my thyroid levels are and I want to know if this is in fact what my problem is.  And if my thyroid really is okay than something else must be wrong.  I'm so tired of hearing "it's just anxiety" or "that's normal for someone your age" when I know darn well it isn't anxiety or normal!

Janewholovesrain,

You can test you thyroid theory in one of two ways.

Typically doctor's always took your temperature.  They don't always do this now.

But you can and verify your suspicions.

A variation of 1 + or - of one point from a normal body temperature can tell you how your thyroid is working.

And why doctor's historically test/take your temperature (and obviously if it is very high) fighting an infection.

So paint a 1" size circle on your abdomen or thigh (somewhere you can see it easily) of Iodine and that is relatively hairless like your upper arm.

If it disappears after 8 hours then your low in Iodine.

It is called an Iodine loading test.

Don't think it will interview with your TSH levels.  You would have to treat over a 1/3 of your body to effect your thyroid.  This is only to test if you body is low in iodine.

I used to be low in Iodine and after my body stopped absorbing it through my skin my thyroid ( and body temperature) returned to normal levels.

If you are only taking the B-complex once a day try upping it to 2/day or with each meal.

It will take 3 months to make a notice difference when taking B-Vitamins.

see this thread about inflammation and celiac disease that talks about the importance of taking your B-Vitamins with each meal.

Again this will only need to be done for a cycle of 3  to 6 months for most people.

here is the link for easy reference.

https://www.ncbi.nlm.nih.gov/pubmed/7477807

quoting the abstract.

(B-)Vitamin supplementation for 1 year improves mood.

Abstract

The possibility that the taking of vitamin supplements may influence mood was explored. One hundred and twenty-nine young healthy adults took either 10 times the recommended daily dose of 9 vitamins, or a placebo, under a double-blind procedure, for a year. Males taking the vitamins differed from those taking the placebo in that they reported themselves as feeling more 'agreeable' after 12 months. After 12 months the mood of females taking the vitamin supplement was significantly improved in that they felt more 'agreeable', more composed and reported better mental health. These changes in mood after a year occurred even though the blood status of 9 vitamins reached a plateau after 3 months: this improvement in mood was associated in particular with improved riboflavin and pyridoxine status. In females baseline thiamin status was associated with poor mood and an improvement in thiamin status after 3 months was associated with improved mood.

Magnesium should be taking the same way 3/day as a Magnesium Glycinate to help improve your moods.

here is the link

https://www.ncbi.nlm.nih.gov/pubmed/16542786/

quoting from the abstract.

"Case histories are presented showing rapid recovery (less than 7 days) from major depression using 125-300 mg of magnesium (as glycinate and taurinate) with each meal and at bedtime."

I hope this is helpful.

Except for Magnesium which I still take.  Every Vitamin/Mineral  I have ever taken has been for a cycle.

It might be a 3 month cycle (as in B-Vitamin) or it might be for only a Month or it might be a cycle off 6 months. 

I don't know how long it will take for you.  But It will only be a cycle.  You won't take it forever if it is the right/missing nutrient.

Taking it will improve your health if your body is missing in it.

Again I hope this is helpful.

*****this is not medical advice only my experience with some of the same issues and how supplementing helped me.

you are on a good regime and people have given you good advice I might only try these things with each meal or 2/day if that is not convenient.

good luck on your continued journey.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

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JaneWhoLovesRain, 

Have you tried cutting out dairy altogether?  Dairy can be hard to digest if your intestinal cilia are damaged from gluten. 

Have you cut your protein level too low?  Protein is needed to grow hair and is a good source of B vitamins and various minerals. Are you eating beans as a protein source?  Beans can be hard to digest, too.  

Are you getting enough calcium?  Magnesium and calcium work together.  You are supplementing magnesium and getting calcium from limited dairy... any other dietary sources of calcium like kale or collard greens?  If you don't get enough calcium from your diet, calcium will get pulled from your bones causing osteoporosis.  You might consider supplementing calcium, too.  The recommended ratio of calcium to magnesium is 2 to 1, but if you're getting some dietary calcium, you can go with a one to one ratio.  

Don't forget zinc.  Zinc affects hair growth, sleep, and metabolism.  It's found in beef, beans and greens.  We need some every day because the body can't store it.  

Omega 3 fats are very important to skin, hair and the brain! (Your brain is mostly fats.)  Olive oil, flaxseed oil and coconut oil are good sources. 

Vitamin D level is important because a deficiency affects so many body functions, from building bones to brain function and mood.  Many Celiacs often have low levels of fat soluble vitamins, (vitamins A, D, E, and K) because of problems absorbing dietary fats.  

What are you baking? Do you use any corn products?  Corn can trigger the same type reaction as gluten in some people with Celiac Disease.  

Kelp is a good source of iodine for after your baseline tests.      Most vitamins can be stopped two or three weeks before testing to give accurate results. Check with your doctor to get his preference.  

I'm not a doctor.  This isn't medical advice.  Just been there done that.  I've had serious nutritional deficiencies and I hope what I learned can help.  

Kitty

 

 

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Thank you for your very helpful comments.  If I go by the two non-standard alternative doctor iodine deficiency/hypothyroid tests I most likely am deficient/hypo.  I just took my temp and it's 96.8 (Not a typo and not 98.6).  It's almost always below 97 first thing in the am, this morning it was 96.2, and on occasion it's below 96.  I've done the iodine patch test.  I see so many differing opinions on how quick it should disappear before being considered positive for iodine deficiency, anywhere from 4 hours to 24 hours or so.  Mine is greatly diminished at 12 hours, but not totally gone.  But mainstream doctors don't give a hoot about this.  My PCP tells me my temp is normal for me, we're all different, blah, blah, blah.  

It would be hard for me to be getting any gluten, but not impossible.  I eat very little processed food and just anything other than veggies or chicken or juice is labeled gluten free, and most of that is certified.  Exceptions would be nuts and seeds.  If it says "gluten free" but on the back says "may contain wheat" or something along that line I don't buy it.  Another exception would be the cheerios I eat.  They are not certified gluten-free and I know there has been back and forth as to if these are safe.  For the most part my celiac has been in the form of DH so it should be pretty easy for me to see if I were to ingest gluten.

I'm probably not getting enough calcuim, that's for sure.  I don't supplement it (but know I should), my protein intake isn't that great either as I don't eat much meat, though I do have chicken twice a week.  I eat lots of fruit and vegetables and have recently added Love Grown Power O's to my Cheerios (very blah tasting cereal but has 6 gms protein and no corn).  Corn, that's  another food I wish I could keep away from.  That could be my problem, too!

When I saw the chiropractor a couple years ago he put me on a very strict diet - no dairy or grains of any kind, no food in the nightshade family, no added sugar at all.  Lots of no's!  What I could eat was eggs, nuts, seeds, most veggies, most fruits (no bananas) and that's about it.  I ended up losing about 10 lbs (not good cause I'm already just under normal weight) and my cholesterol dropped significantly, but health wise didn't feel much better.  I stayed on that diet about 6 weeks, but it was just too restrictive and I couldn't bear to lose any more weight.  I was on it again this year from April to June, mostly to bring my cholesterol down so I wouldn't have to go on statins.   I lost 10 or so pounds again but my total cholesterol only fell about 4 points.  Again, I felt no better physically. So now I'm back to my "usual" diet.  Dare I say that my grocery store has Hagaan Daz ice-cream on sale for $1.99, well I jumped on that special treat!  First ice cream I've bought in months.

Once I can get to a good doctor and find out for sure if all my thyroid levels are normal or not I'll feel more comfortable about what step to take next.  And hopefully I'll be able to hook up with a good nutritionist.

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Ah, DH!  Then you can most likely rule out celiac disease.  Maybe it is another autoimmune disease.  I sincerely hope you can figure it out.  Keep us posted.  

 

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Yes, you can have a thyroid problem without an enlarged thyroid, and without antibodies. You can have subclinical hypothyroidism which will then show up as hypo. It can also be a T4 to T3 conversion problem. If you can find a functional medicine doctor who will test your tsh,, free t4, free t3 and reverse t3 you will get the whole picture. Also a drop of Lugol's iodine a day is no more than you would get from a regular diet so that wouldn't hurt you. Once your t3 normalizes your bad cholesterol will go down too. I have been on your exact path for nearly 4 years. Check out Isabella Wentz, she is a thyroid specialist and has much good information.

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I also went through a discussion (that's mildly putting it) with my doctor who refused to do the complete thyroid panel.  My TSH test came back on the low end of normal, but I had all the typical symptoms.  There are plenty of good articles out there about the full panel and why it is important.  You definately need a different doctor.

Only testing for TSH (thyroid stimulating hormone, produced by the pituitary gland to stimulate the thyroid into action) is like only checking if your gas tank in your car has fuel, but your car still is not running well.  Of course you have to check all legs of the overall system...fuel pump, fuel lines, carburator, spark plugs, etc. etc.  Well, duh.

I had to finally go to a naturopath who did the complete panel (T3, T4, reverse T3, reverse T4).  I was very low in T3.  Also before taking any treatment, checked for antibodies to rule out Hashimoto's.  Treating thyroid without ruling this out is like putting gasoline on a burning fire, and it will kill off what's left of your thyroid, have to rule that out before going forward.  Came back negative for Hashi's.

I first tried the typical supplements that help all parts of the whole system to work (selenium, zinc, etc.), but only got mild improvement. I am now on a small dose of synthetic T3 supplementation and feel TONS BETTER.  No more hair loss or dizziness or extreme tiridness.  I'm still tired for other reasons, but the extreme I just can't take another step tired has stopped.

Also, any x-rays for the rest of your life, dental or anything else, insist on a shield to protect your thyroid.

Good luck...get another doctor.

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On 10/9/2017 at 10:00 AM, JaneWhoLovesRain said:

I just took my temp and it's 96.8 (Not a typo and not 98.6).  It's almost always below 97 first thing in the am, this morning it was 96.2, and on occasion it's below 96.

JanewholovesRain,

96.2 is probably a little on the low side.   I have a friend's who is lower than yours. . . but they do not have hair loss (unless you count a receding hair line)

It is true your body temperature will fluctuate during the day.

My body temperature is lowest in the morning but I consider my afternoon temperature my "true temperature".

I hug 98.6 + or_ half a point in the evening but am well under that by a point or point and a half first thing in the morning when I awaken.

but within the first hour of wakening up my thermostat (thyroid) perks up my body temperature by a whole point or more.

It didn't use to do that.  I/it was sluggish all day.

I think beverage mentioned this.

On 10/10/2017 at 1:29 PM, Beverage said:

selenium, zinc, etc.),

Selenium should be researched to help your thyroid not just Iodine.

chris kresser has a free ebook on the  topic of how to prickup you thyroid to normal levels.

Brazil nuts are a good source of Selenium.

He said selenium should be taken before Iodine (I don't remember why).

You can buy some deluxe mixed nuts (Brazil nuts are in this mix) or by them separately and eat them as your snack.

***** this is is not medical advice but I hope it is helpful.

I only know it helped my thyroid.

good luck on your continued journey.

posterboy by the grace of God,

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My body temp has usually been 96.8 or 96.3 for many years. My tsh always measured "normal" except for very recently when it was very slightly hypo. Been taking a low dose of levothyroxine and not noticed any changes at all in temp, hair loss, dry skin, tiredness, etc. So I'm not sure how well connected these things are in my body at least!

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Janewholovesrain,

This is to the hair loss question since it doesn't seem to be thyroid related.

Their is another thread on the celiac.com forum that talks about this very thing (hair loss).

Knitty Kitty has done some great research about Vitamin/nutrient deficiencies that contribute to the problems you are experiencing.

here again is the link for ease of reference.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315033/#b2-dp0701a01

Be sure to look at each of the 3 tables.  It is the heart of the research and simply list's associated conditions in summary form with each deficiency and whether "hair loss" is one of those symptoms.

***this is not medical advice but I hope this is helpful (((((hugs)))))) and you feel better soon.

posterboy,

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