# What to do now? What's my next step?



## sweetgrace (Apr 13, 2012)

Hello! I've just been diagnosed with Hashimoto's along with severe Vitamin D deficiency and several other less severe deficiencies and I do have an enlarged thyroid. The diagnoses is still sinking in that I have an auto immune _disease_. I'm so new I don't even really know what my questions are so please forgive my ignorance. The doc has put me on prescription vitamin d at 50,000 units twice a week, iron, B complex and magnesium once a day and I am also taking an antiviral pill because I just developed shingles (part of having Hashi's??). The shingles are pretty bad. It is on both sides of my body which I have read is unusual (doesn't happen?) and even though some are now scabbing over I am still getting new ones. Does anybody have any experience with shingles? My immune system hates me right now. Diagnosed with all of this within 3 days  boo! I am feeling a little overwhelmed.

What are some important questions I should be asking my doc? (I'm not going back to see her until I've been on the Vitamin D for two months)

Should I be getting an ultrasound?

Is the vitamin d going to make me feel better? Soon?

Is there something I can be doing besides waiting for my antibodies to destroy my thyroid and then be put on meds?

I'm sure I have other questions but not sure yet what they might be. Thanks for listening


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## bigfoot (May 13, 2011)

Sorry to hear you are now part of the club. Don't worry, there is plenty you can do today to get started, and don't be afraid to be your own advocate. Don't take everything you hear or read (from docs, friends, the 'net, or even here) as gospel -- do your own research and experimenting to find what works for you. You'll do great!

hugs3

*Absolutely* get an ultrasound. Ideally every six months or so to watch things. You have a goiter -- that could be from hypo or hyper. Need to find out why, and also rule out the cancer risk. And ask for not only routine TSH lab testing (every 2-3 months once stable), but *also* Free T3 and Free T4. If you can swing it, get a TSI (Thyroid Stimulating Immunoglobulins) and a TBII (Thyroid Binding Immunoglobulin), too. Not sure how they diagnosed your Hashi's, but probably (hopefully) with a TPO and TGAb labs. Pituitary and adrenal function is something to keep an eye on, as well as sex hormones (estrogen, testosterone, etc.). As I'm learning myself, one thing affects another like dominos.

Vitamin D should help, especially if you are deficient, which it sure sounds like you are. (If the large amount of Vitamin D your doc prescribed for you makes you feel a little sick, definitely contact them about reducing the dosage. I think this all depends on the person.) It will take some time for this to soak into your system -- far slower than going outside in the midday sun for 15 minutes a day. They say that folks with Hashi's have a problem absorbing/utilizing Vitamin D to begin with. Start taking a good-quality multivitamin with some selenium in it, too.

IMHO, you should not wait for your thyroid to become completely destroyed before starting meds. Why suffer in the meantime? If this is your doc's approach it's time to find a new doc ASAP. You don't have Hashimoto's a decade from now, you have it RIGHT now. Maybe your doc is trying to steer clear of the ups-and-downs of Hashi's management, but that's going to happen anyway, thyroid medicine or not. If anything, the medicine will help keep things more stable and suppressed. Some days will be better than others.

Medication-wise, you want to pick something and stick with it for a while to see how you do. Go slow on dose increases; I think the rule of thumb is starting around 50mcg for T4-only meds and increasing 12.5-25mcg at a time. The s-l-o-w-e-r the better. Re-check levels every 6-8 weeks. It will take at least a few weeks for things to start building up in your system. Avoid generics, as pharmacies tend to get whatever manufacturer is cheaper and/or available at the time. Good rule of thumb is get doc to write a levothyroxine (T4-only) RX for "name brand" or "no substitution" of Sythroid, Levoxyl, etc. Depending on your Free T3 levels, you may do better adding in a small amount of Cytomel (T3-only), or swapping for something natural like Armour (T4 and T3 combo). Really just depends on your own situation, which is hard to determine until you have the proper lab tests (Free T4 & Free T3).

Try to avoid excess gluten, as it can flare up autoimmune stuff in some individuals. You might inquire about getting a Celiac lab test. Eat lots of veggies, fruit, lean meats, less carbs & sugars, fewer processed foods, etc. Avoid things like broccoli and cabbage, as these belong to the cruciferous veggies family which are "goitrogenic" and can interfere/inhibit thyroid function. Likewise, steer clear of large amounts of salt/iodine, as that can rev-up thyroid function (sushi, fast food, etc.). Fiber, if you eat a lot of it, can also affect absorption of thyroid meds which happens primarily in the gut (just something good to remember). Yogurt is good for helping out your digestive system, as well as oatmeal.

Exercise is great, but don't over-do it and flare things up. Slow, steady, and consistent like everything else. Your shingles is probably related to your autoimmune stuff rearing its head. I know before I got diagnosed with thyroid problems I had weird rashes on my arms nobody could explain. After starting medication these "magically" went away. This endocrine stuff affects darn-near everything, you need to look at the big underlying picture and not just treat symptoms as they pop up. Blood sugar, blood pressure, fatigue, sleep, libido, weight gain/loss, mood, skin, eyes, hair, et al.

Oh, I almost forgot... get/keep copies of all of your lab work. This is invaluable information to look back on. Same goes for vitals; I keep a daily spreadsheet of my weight, 9 AM & 3 PM blood pressure and temp, as well as a couple of notes on how I felt that day. You won't remember everything a year from now and the little details can point you in the right direction.

Hope this helps and let us know how things go! IMHO, I would get an appointment or referral to an endocrinologist, possibly an ENT doc, not to mention a second opinion from another PCP or internist. It is best to get multiple opinions and docs looking at things, then you can take something from each of them and start seeing the larger picture and treatment options.

:hugs:


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## Andros (Aug 26, 2009)

sweetgrace said:


> Hello! I've just been diagnosed with Hashimoto's along with severe Vitamin D deficiency and several other less severe deficiencies and I do have an enlarged thyroid. The diagnoses is still sinking in that I have an auto immune _disease_. I'm so new I don't even really know what my questions are so please forgive my ignorance. The doc has put me on prescription vitamin d at 50,000 units twice a week, iron, B complex and magnesium once a day and I am also taking an antiviral pill because I just developed shingles (part of having Hashi's??). The shingles are pretty bad. It is on both sides of my body which I have read is unusual (doesn't happen?) and even though some are now scabbing over I am still getting new ones. Does anybody have any experience with shingles? My immune system hates me right now. Diagnosed with all of this within 3 days  boo! I am feeling a little overwhelmed.
> 
> What are some important questions I should be asking my doc? (I'm not going back to see her until I've been on the Vitamin D for two months)
> 
> ...












When you can, please post your most recent lab results with the ranges!

What antibodies' tests have you had?

And ultra-sound is always a good idea when the thyroid is swelling.


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## sweetgrace (Apr 13, 2012)

bigfoot said:


> Sorry to hear you are now part of the club. Don't worry, there is plenty you can do today to get started, and don't be afraid to be your own advocate. Don't take everything you hear or read (from docs, friends, the 'net, or even here) as gospel -- do your own research and experimenting to find what works for you. You'll do great!
> 
> hugs3
> 
> ...


Yes, this does help tons! Thank you very much for taking the time to share all of this great info  I am starting to feel nauseas. I'll ask tomorrow about the vitamin d. The shingles are almost out of control. They are spreading EVERYWHERE! I'm now starting to feel tingles on my face. So much at once...


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## sweetgrace (Apr 13, 2012)

Andros said:


> When you can, please post your most recent lab results with the ranges!
> 
> What antibodies' tests have you had?
> 
> And ultra-sound is always a good idea when the thyroid is swelling.


Thanks! I'll call tomorrow to request a referal for an ultrasound.

TSH 1.85 (0.40-3.00 range)
FT4 1.0 (0.6-1.7)
FT3 2.64 (2.50-3.90)
Thyroglobulin Auto Antibody <20.0 (0.0-40.0)
Thyroid Peroxidase >1000.0 (0.0-35.0)
Vitamin D 8 (30-150)

Anything else of importance?
ETA: Is there a possibility that I don't have Hashi's and the vitamin D deficiency is causing the enlarged thyroid and high antibody count? Along with all of the horrible symptoms I've been having?


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## bigfoot (May 13, 2011)

That is a pretty high TPO (thyroid perox.) level. I think mine was around 200-300 or so. And that Vitamin D is literally in the basement. You could also do with more FT4 and FT3 I think, but I will leave all the lab interpretation to the experts here. No wonder the shingles is bothering you; you immune system is in overdrive!

Oh... Stay away from soy products if you can help it. I know they market that stuff as healthy, such as soy milk or butter spread, but it isn't, IMHO. You'd do better with food people ate 100 years ago.


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## joplin1975 (Jul 21, 2011)

Yes, please...insist on an ultrasound. That TPO is very high and cause for concern - TPO indicates your thyroid is under attack, which certainly can be caused by Hashi's but also can be caused by cancer. So, you'll want to follow up on that!


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## Andros (Aug 26, 2009)

sweetgrace said:


> Thanks! I'll call tomorrow to request a referal for an ultrasound.
> 
> TSH 1.85 (0.40-3.00 range)
> FT4 1.0 (0.6-1.7)
> ...


Oh, my gosh..................your TPO "is" high. Insist on ultra-sound

Read it all as TPO Ab is not necessarily indigenous to thyroid.

TPO Ab
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

TPO Ab should be negative, 0
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm
(The normal thyroid has TPO but should not have antibodies to TPO)


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## sweetgrace (Apr 13, 2012)

bigfoot said:


> That is a pretty high TPO (thyroid perox.) level. I think mine was around 200-300 or so. And that Vitamin D is literally in the basement. You could also do with more FT4 and FT3 I think, but I will leave all the lab interpretation to the experts here. No wonder the shingles is bothering you; you immune system is in overdrive!
> 
> Oh... Stay away from soy products if you can help it. I know they market that stuff as healthy, such as soy milk or butter spread, but it isn't, IMHO. You'd do better with food people ate 100 years ago.


Yes, I am trying to learn much about traditional foods through the Weston A Price/Nourishing Traditions and other nourishing websites. Contemplating the GAPS diet or Paleo maybe? Any experience with any of theses 'diets'? You've been so helpful, thank you!


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## sweetgrace (Apr 13, 2012)

joplin1975 said:


> Yes, please...insist on an ultrasound. That TPO is very high and cause for concern - TPO indicates your thyroid is under attack, which certainly can be caused by Hashi's but also can be caused by cancer. So, you'll want to follow up on that!


Thank you, I'm calling today to hopefully talk the doc into a referal for an ultrasound for piece of mind.


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## sweetgrace (Apr 13, 2012)

Andros said:


> Oh, my gosh..................your TPO "is" high. Insist on ultra-sound
> 
> Read it all as TPO Ab is not necessarily indigenous to thyroid.
> 
> ...


Thanks for the links! I will be checking them out later today when I don't feel quite as nauseas, haha.

I appriciate ALL of the feedback everyone has given! Please, if there is anything else you can think of for me let me know!


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## sweetgrace (Apr 13, 2012)

Bigfoot~ I just realized you are in Oregon? I am too, southern Oregon


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## sjmjuly (Mar 23, 2012)

Sweetgrace,
I was recently diagnosed with Hashi's after suffering for over a year. My TPO was 439 when diagnosed.
The biggest change for me was going gluten free and taking Selenium. If you have stomach issues, you could be gluten intolerant and that may have caused your Hashi's. Since I am gluten free and started the Selenium, my TPO went from 439 to 290 in only two weeks and that was three weeks ago. I feel soooo much better today. I have new labs coming up soon and I hope my numbers are even lower. Hashi's is a pain in the butt in the beginning and can be hard to manage, but you will figure it out. But I am serious about the gluten. It made a HUGE difference in how I felt.


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## bigfoot (May 13, 2011)

sweetgrace said:


> Yes, I am trying to learn much about traditional foods through the Weston A Price/Nourishing Traditions and other nourishing websites. Contemplating the GAPS diet or Paleo maybe? Any experience with any of theses 'diets'? You've been so helpful, thank you!


Appreciate the kind words, just trying to pay it forward thanks to all the great folks here.

:anim_32:

The Paleo diet sounds interesting, as do the other high-protein, low-fat, no carb diets but I don't think it would work out for my situation with liver issues. Eating a lot of protein is going to put some strain on your body as the liver tries to break down all of it. Plus, the resulting spike in blood protein and associated ammonia (from liver processing) can be detrimental. Complex carbs are supposedly good for the liver as they are easier to break down than meat and help flush the liver, too. Of course, have to balance all of this with the mentioned gluten sensitivities and your own health status.

Instead we've still been eating things such as... some carbs -- oatmeal (just tried the steel-cut kind frozen at Trader Joes), pasta, potatoes, tortillas, occasional bagel or donut, minimal rice; eggs -- fried, scrambled, and hard boiled; veggies -- onions, garlic, bell peppers, salad, tomato, carrots, healthy stir-fry; fruits -- bananas, oranges, strawberries, blueberries; some dairy -- swiss cheese, string cheese, yogurt, milk, butter, random ice cream cone; lean meats -- fish, chicken, turkey, minimal lean red meat, gluten-free steak jerky (new at Costco, excellent!), as well as other assorted snack things like nuts (Costco has some new bags that have dried cherries, pistachios, pepper), pretzel crisps; and lots of water (tasty with lemon) and some gatorade, with juice limited to a minimum and usually cranberry (cut with water) or orange, coffee every now and then. For sweet stuff we've accumulated honey, agave syrup, real sugar, real maple syrup, and Splenda -- but we hardly use it anymore.

A recent find that we really liked is coconut oil -- that stuff is amazing. We pan-fried some Tilapia filets in it the other night and it didn't burn, wasn't oily, browned the fish with a nice crust, and best of all tasted great! Beats using vegetable oil (soy) and burning everything. Apparently coconut oil has lots of immune-helping ingredients, too. Added bonus.

Anyway, that's what has worked for us, everybody is different and has their own preferences. But it definitely has made us healthier and feel better. Another thing I forgot to mention is Carlson's liquid fish oil -- pick up some at your alternative food or vitamin store (even Amazon). Learned about this thanks to Andros! 

p.s. if you get the chance, watch "Super Size Me" or "Food Inc.", scary stuff!


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## sweetgrace (Apr 13, 2012)

sjmjuly said:


> Sweetgrace,
> I was recently diagnosed with Hashi's after suffering for over a year. My TPO was 439 when diagnosed.
> The biggest change for me was going gluten free and taking Selenium. If you have stomach issues, you could be gluten intolerant and that may have caused your Hashi's. Since I am gluten free and started the Selenium, my TPO went from 439 to 290 in only two weeks and that was three weeks ago. I feel soooo much better today. I have new labs coming up soon and I hope my numbers are even lower. Hashi's is a pain in the butt in the beginning and can be hard to manage, but you will figure it out. But I am serious about the gluten. It made a HUGE difference in how I felt.


Thanks for the suggestion! I think that I would at least like to try going gluten free to see if it will make a difference. What do I have to lose?  At this point I need to wait to make sure all labs are run and I think the doc wants to see what the Vitamin D will do first. Then I will start the gluten free. It's a little daunting I must say. Going gluten free is going to be a BIG challenge for this house.


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## sweetgrace (Apr 13, 2012)

bigfoot said:


> Appreciate the kind words, just trying to pay it forward thanks to all the great folks here.
> 
> :anim_32:
> 
> ...


I have watched Food Inc and I totally agree about it being scary! That documentary is what got me researching whole foods/traditional foods last fall. We have been making small changes here and there but then I just got really sick. So needless to say we are not eating the healthiest right now . Hopefully soon, with all of your help and the docs, I will be on the road to more energy and better health!


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## sweetgrace (Apr 13, 2012)

The doc didn't refill my prescription today for the shingles  She didn't think it would help. Also, I didn't hear back from my other doc (the one who diagnosed me with Hashi's) about an ultrasound referal or the nausea being caused by the vitamin d. *sigh* I guess I'll have to wait till she calls.


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## sjmjuly (Mar 23, 2012)

sweetgrace said:


> The doc didn't refill my prescription today for the shingles  She didn't think it would help. Also, I didn't hear back from my other doc (the one who diagnosed me with Hashi's) about an ultrasound referal or the nausea being caused by the vitamin d. *sigh* I guess I'll have to wait till she calls.


I was nauseated ALL THE TIME. I actually threw up 5 times in a 6 week period. I knew something was wrong. When I was finally diagnosed it all made sense. I was also vitamin B-12 deficient though my D was ok. Gluten free can be a little overwhelming at first, but once you get the hang of it you will be glad you did. The hardest part about it to me is going out to a restaurant. But, there are many out there now that are either completely gluten free or offer gluten free menu items. The best thing (other than feeling better) is the fact that I have lost weight. I am back into my "skinny jeans" again!hugs4
Not eating all the crap has really helped my waistline and I am a size 4 now after being a size 10 and feeling fat, horrible and had no energy. 
It will get better and you WILL feel better. It takes time and effort but it will happen.


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## bigfoot (May 13, 2011)

sweetgrace said:


> *sigh* I guess I'll have to wait till she calls.


Don't wait too long -- you might have to become a pain in their you-know-what to get the ball rolling.

:anim_26:


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## sweetgrace (Apr 13, 2012)

sjmjuly said:


> I was nauseated ALL THE TIME. I actually threw up 5 times in a 6 week period. I knew something was wrong. When I was finally diagnosed it all made sense. I was also vitamin B-12 deficient though my D was ok. Gluten free can be a little overwhelming at first, but once you get the hang of it you will be glad you did. The hardest part about it to me is going out to a restaurant. But, there are many out there now that are either completely gluten free or offer gluten free menu items. The best thing (other than feeling better) is the fact that I have lost weight. I am back into my "skinny jeans" again!hugs4
> Not eating all the crap has really helped my waistline and I am a size 4 now after being a size 10 and feeling fat, horrible and had no energy.
> It will get better and you WILL feel better. It takes time and effort but it will happen.


Sorry you were so sick! That stinks! On another note...that's awsome about getting back into your skinny jeans, congrats! I'm hoping that I too will have success losing some weight. I'm now an 11/12 and crossing my fingers that I can get back to being a 7.


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## sweetgrace (Apr 13, 2012)

bigfoot said:


> Don't wait too long -- you might have to become a pain in their you-know-what to get the ball rolling.
> 
> :anim_26:


Nurse called me back with no arguments  Supossedly someone from the ultrasound building is going to call me to set up a time this week.


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## bigfoot (May 13, 2011)

Good and best of luck with the ultrasound. Don't worry, it only takes about 10 minutes and you get to relax while they do it. Let us know how it goes!

hugs6


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