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Old 02-24-2013, 06:08 AM   #1
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Oh, yay. I have Hashimoto's.

I'm sure you all are familiar with this story: dancing around this for years, symptoms for years (mild, except for inability to lose weight and of course, gluten intolerance), but NOW it's official: Hashimoto's.
This, b/c I went to a new N.P. and asked for an antibody test.
I don't have full thyroid panel (yet). Will ask for this when she calls me - she just left a message w/Hashimoto's dx Fri. afternoon.
I am already eating LC. Following a very low calorie plan now (hHCG, kind of) but will be done with the lowcal part in a week or so. It actually works for me, and it's the ONLY thing that works for me, and since I'm desperate to get off the 30 lbs I gained last year I'll probably keep going with it.
I haven't had gluten in almost 10 years. And I struggle digesting dairy, so once I go back to plain low carb I'll probably limit that a great deal. More paleo eating.
I take D, B12, Kelp (this, when I got amazingly, horribly achy around Xmas - it helped a lot), and an energy-focused multi. Also probiotics.
No prescriptions, although at the dr's visit I was prescribed an antifungal b/c I have terrible foot fungus. I have also developed a yeasty rash in the nasty skin fold under my belly. I have had this foot fungus for 20+ years and have tried everything else so now I'm doing the prescription, unless anyone here thinks there's a better alternative.
I used to take Victoza for insulin resistance but haven't taken it for over a year. No doubt that contributed to my weight gain (plus eating carbs...duh). I have asked for an IR test but need to wait a month or so so I can manage on the hHCG WOE. It involves eating a very carb-heavy meal and I can't do that for a while. I cannot tolerate metformin. I suspect I have leaky gut or something messed up in my intestines.
I should add that I am currently (and have been for years) under a lot of stress. I have a child with neuro-behavioral special needs and he is very, very difficult. We are also having some job/financial stuff going on, which doesn't help.
Soooo... called my sister, an edocrinologist who I think is pretty by the book, and she said to see what my TSH is and if it's no different than usual (usual being ~2.5) then just do blood tests every 3 months to watch that level. I reminded her I would rather be proactive than do nothing, but that was her advice. I asked if she thought I should go see an endocrinologist (not her) and she said no. My N.P. is a new medical practitioner to me and she seems open, but I've only seen her once.
Now I know you all probably have different advice for me. Lay it on! I will continue to read in this section of LCfriends to get more info, and once I have my full panel tests I'll post as well.
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Old 02-24-2013, 08:51 AM   #2
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You are right that you need the full thyroid panel- including frees and reverse t3. The Hashimoto's dx tells you where your problems are coming from, but not the extent or specifics.

You likely need thyroid replacement hormones- probably t3 as well as t4.

Your sister is wrong, but you knew that.
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Old 02-24-2013, 09:04 AM   #3
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Ask sister how they 'came up with' TSH test. See if she knows. She might be surprised.

But..BLESS you! Gluten free, all these years and trying your darndest to maintain.

There is a long time poster on here who has a T4/T3 do the right tests doc...I do believe she's 'Allycat'...I've seen newer posts from her here.

Now, kelp can go 'either way' depending on the activity of your Hashi's antibodies. It can quell an attack...when you have the first ones...but...it can also make things worse at times...specifically as you get further along with the antibodies actually 'destroying' the thyroid's ability completely. I'm of a mind that anyone with Hashi's needs to have an iodine test taken and check it yearly...and if it's not low, don't treat it.

I have a lot of lists of good docs for thyroid, and what I don't have, I can ask others...I used to work in the endocrine field (for the patients, and research). NC isn't the 'best place' to be, but sadly enough...bigger places aren't always 'better'..take NYC for example, that's a 'Good ol' boy worship at the altar of TSH' for sure.

I do believe you can just get online and go to an online lab...and get Free T4, Free T3's done (and doctors that I know usually feel FT4 should be about midway of lab range or even below...but FT3 should be at midway or higher, depending on the person).

My reverse T3 is quite high...and yes, they've tried to treat that...to no avail over a 20 year history, and as far as I'm concerned I feel GREAT on the amount of Armour I'm on, so I don't give a crap about my RT3. (sorry for those that need that treated or don't feel well...but I'm one of a HUGE percentage of women who have a high RT3 yet it doesn't interfere with my life).

Well..yes, your sister is 'missing the boat' and I'm not sure if you've been there but stop the thyroid madness site (can I put this here??? Not a link) and Mary Shomon's site at about is also good.

Oh, I sure hope I come back and you've seen the N.P. and she turns out to be quite savvy about T3 (Cytomel if synthetic) or natural thyroid (many names, Armour, Naturethroid, etc.)..I'll hold onto that hope for you...and if you ever need..just feel free to PM me for any lists I can dig up for you in your area.
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Old 02-24-2013, 09:22 AM   #4
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She might not need thyroid replacement YET (i.e., her sister, the endo, is correct).

Hashi's is the disease, and it causes hypothyroidism. The fact that most people don't know they have Hashi's until they're already hypo tends to distort the relationship. You can have Hashi's for a while--with no symptoms at all, and not be hypo.

Since there are no symptoms of Hashi's, most people are diagnosed when they become hypothyroid because that's when they experience symptoms.

The OP happens to have been diagnosed with Hashi's apart from thyroid testing, and it's possible that she's not yet hypo.

Typically doctors will simply monitor the thyroid and the patient's symptoms before prescribing hormones. Hormones are not prescribed for Hashi's--it's for the hypothyroidism that Hashi's eventually causes.
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Old 02-24-2013, 11:26 AM   #5
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Don't I need some kind of treatment if I have the antibodies and I have symptoms? I haven't been able to lose weight for 14 years despite eating LC most of the time. I can lose on a very low calorie diet but that's it, and now, any time I eat anything resembling a carb I gain quickly.
I also have pretty bad muscle pain that yes, got better when I started the kelp, but it seems to be coming back. And my fingers are very twing-y.
I guess I need to get the other tests so I have all the info I need.
A
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Old 02-24-2013, 12:19 PM   #6
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Agee- Kelp is also high in Magnesium. Magnesium was the answer for me for chronic pain. I hope that you find a Dr. who will run the right tests for you. Many folks with auto-immune issues also have low ferritin, B-12 and D3. You don't want to start supplementing until you know your levels. A good Thryoid Dr. will have these levels tested every 6 months.

Iodine therapy is something that I would not consider unless I was monitored by my doctor.

My DH and I both have Hashi's. What are the odds of that?

We were strict Paleo for a year but didn't lose any weight from it. We are all so different in what we need to eat. The big one for both DH and me to avoid is dairy. I don't lose weight and feel horrible if my carbs are too low. 40-70 seems to be my sweet spot.
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Old 02-24-2013, 12:28 PM   #7
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I supplement with D and B-12 b/c I've been low in those in the past.
Thanks - appreciate the feedback.
I'm feeling a little overwhelmed and sad.
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Old 02-24-2013, 12:56 PM   #8
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Doesn't kelp have a lot of iodine? Iodine is NOT good for Hashi's. The ordinary amount in our salt, etc. is more than enough, and no one with Hashi's should supplement with iodine--ever.


As to treatment, most good thyroid doctors will treat based on both lab values and symptoms. This is something you need to discuss with your doctor. Again, the treatment is for hypothyroidism, not the Hashi's itself.
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Old 02-24-2013, 01:13 PM   #9
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Well, I don't know if I have a good thyroid dr. or not. Where I live isn't exactly rich with them.

And yes, kelp has iodine. Which is why I took it - I didn't know I had Hashi's but I expected some thyroid thing and I looked up possibilities and tried it out and it helped. Certainly hasn't hurt anything so far and the major pain in my legs is mostly gone - but keep in mind I got the dx. news Friday afternoon via voicemail so I am trying not to be reactive but just think about what has been working, what hasn't, and what I need to do next. Like, should I give this N.P. a try? Should I find an enocrinologist? My sister (endo) said no, but I don't know that I agree. I am not looking forward to going to endless dr's as described on this message board. It's all really overwhelming and depressing.

Anyway, I read about iodine and apparently people who are gluten intolerant are often iodine deficient. You say no one ever should supplement but there are several sites by thyroid specialists that say it might be okay...especially if I take selenium as well, which is in my multi and which I also have on order by itself.

That's why this is so scary to me - so many points of view and no medical personnel who I really trust to help me figure it out. Just a whole lot of opinions on the internet and a whole lot of conventional, busy drs in real-life offices.
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Old 02-24-2013, 02:53 PM   #10
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I don't really know. I've just read that Hashi's people shouldn't supplement with iodine--that it makes things worse.

I never supplement anything without having identified a deficiency. My iodine level was fine when tested. It was my D3 that was low--and often is with hypothyroids.

Why don't you seek advice from your sister, since she's an endo?

I see an endo who is great, but my sister (also hypothyroid) who lives about 70 miles away from me has had terrible experiences with endos, and her internist is very good in managing her thyroid issues. It all depends on the doctor rather than the specialty.
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Old 02-24-2013, 03:19 PM   #11
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Quote:
Why don't you seek advice from your sister, since she's an endo?
I have asked my sister about this - see first post - and basically she looks at TSH only in making treatment decisions for her patients. She is very conservative and by the book.
I have read this forum many years and if I've gleaned anything it's to find someone
When my D was at 10 and my then-doctor told me to supplement to try to get it up to around 80 my sister laughed and said there was no clinical evidence that anything about the minimum level was helpful. Meanwhile, I really feel best at around 80-90 for my D.
She told me there's no such thing as adrenal failure.
So I don't know. She might be right. She might just be a conventional inside the box dr. So yes, I'm talking to her but it's *my* health and I want to do whatever I can to feel and be better.
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Old 02-25-2013, 05:37 AM   #12
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My brother is a specialist in medicine, and I don't want to be treated by a family member (and he doesn't want to treat me...it's generally a 'no no' in field of medicine..even the doctors I see on a daily basis and speak to won't do it).

Yeah..well....if all you get is a TSH you may go untreated whether the antibodies have destroyed your thyroid's ability to produce hormone. I was left Untreated for 10 years because my TSH was very low. When they finally did a FT4, FT3..well, golly gee whiz, there wasn't ANY....T4 was one point inside bottom range and T3 was ...under range. So...you want to have to correct testing, not just a TSH and have the doc say 'Oh, that's fine, so you're fine'.

Adrenal failure is rare, I'll give that much and through my work I've only ever seen it once...but I've seen tanked adrenals because the thyroid just overworks them trying to 'keep up'.

I just happened to have gotten a great endo (but, he ONLY DOES THYROID....and hormones) but otherwise, I know a DO, two MD's in my area (very small) who also know what tests to do and really care about the person.

Kind of like this: Some people get a cold and it's gone in three to five days. some people get a cold and it develops into pneumonia. Some have hashi's and don't even KNOW IT for years...but some are barely even triggered antibodies and feel like death.

It shouldn't be based on one test...cuz there's more than one kind of person.

Iodine can 'excite' the thyroid peroxidase antibodies and if you are just in the very first stages of hashi's, it can push it faster to depleting the thyroid, that's why iodine without testing is a bad idea. And because one autoimmune begets others, it can also excite 'other' antibodies...I have enough trouble just having hashi's.

YES..magnesium is an answer to pain...I have intractable pain from an autoimmune bone condition..not much can be done about it, and taking magnesium a couple times a day really helps me calm...lowers my need for muscle relaxers and pain meds (I'm still young, I don't need to start into the pain meds merry go round at this point)
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Old 02-28-2013, 05:24 PM   #13
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what kind of magnesium you take?

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Old 02-28-2013, 05:35 PM   #14
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Lokarbiebarbie- what kind of magnesium and how much do you take daily?
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Old 03-01-2013, 04:28 AM   #15
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Magnesium is something you want to 'work up to'...as it does cause loose stool. I take a chelated triple magnesium and I take 500mg. after lunch and another 500 after dinner.
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Old 03-01-2013, 11:39 AM   #16
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I take 600 mg of Magnesium Citrate and while it has somewhat helped, I still have pain in the evening. Maybe I should break it up into 2 doses. If I take more I will have loose stools.
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Old 03-01-2013, 05:12 PM   #17
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Quote:
Originally Posted by Lokarbiebarbie View Post
Ask sister how they 'came up with' TSH test.
....<deletions>....

I have a lot of lists of good docs for thyroid, and what I don't have, I can ask others...I used to work in the endocrine field (for the patients, and research). NC isn't the 'best place' to be, but sadly enough...bigger places aren't always 'better'..take NYC for example, that's a 'Good ol' boy worship at the altar of TSH' for sure.
<...deletions>...
Oh, I sure hope I come back and you've seen the N.P. and she turns out to be quite savvy about T3 (Cytomel if synthetic) or natural thyroid (many names, Armour, Naturethroid, etc.)..I'll hold onto that hope for you...and if you ever need..just feel free to PM me for any lists I can dig up for you in your area.
Just got back from my own thyroid appointment---my doc is determined to reduce my T3 dosage again! I can feel myself going cold and tired and constipated, and I tried to explain that but all he could say was TSH TSH TSH---even though my FT3 and FT4 are both in the mid range.
I can just tell, I am going to need a new doc. I tried to click on your name to PM etc, but I am pretty new here and probably am not allowed yet? or either am already hypo and stoooopid (this happens to me when i go hypo--I lose brain function!).

I am in North Florida (Tallahassee) but am willing to drive as far as 5 hours to find some HELP for this. Thank you for any info you have.

Now for the fun part: how DID they come up with the TSH test?

And best wishes to you, AGEE the newly GX Hashi patient who started the thread---I really hope you get some good word soon.
Emma
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Old 03-01-2013, 07:58 PM   #18
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Can you get to Niceville Fl. ?
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Old 03-02-2013, 03:35 AM   #19
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Old 03-02-2013, 11:59 AM   #20
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Can you get to Niceville Fl. ?
yes! Google maps says is it 2 hours and 18 minutes from me--I would drive that in a MINUTE to feel better.
Emma

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Old 03-02-2013, 02:16 PM   #21
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Dr. Fedosky in Niceville. He's a very knowledgable GP who does thyroid
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Old 03-02-2013, 02:18 PM   #22
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Thank you! Well worth the 2.5 hours drive.

Hope Agee is doing ok...
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Old 03-02-2013, 02:21 PM   #23
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Quote:
Originally Posted by LESESKI View Post
I take 600 mg of Magnesium Citrate and while it has somewhat helped, I still have pain in the evening. Maybe I should break it up into 2 doses. If I take more I will have loose stools.
oxide tends to be the least absorbed and causing stool issues. Citrate is better absorbed. Doc suggested glyconate for me.
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Old 03-02-2013, 02:39 PM   #24
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Quote:
Hope Agee is doing ok...
You are so sweet!
I am fine, but guess what, that doctor NEVER got back in touch with me!
To be fair, after I left 6 voice mails over the last week (5/w her nurse, 1 with her after I made the receptionist give me her direct mail) she called my yesterday on my HOME PHONE after I explicitly asked for call backs on my cell phone, leaving the number every time I called. Her message was just "returning your call, will try later" and that's it, AND she didn't try back later.
I am writing a letter of complaint to everyone in the practice and I have a new dr's appt w/someone completely different on Wednesday. Only bummer is that I asked for my test results and they haven't sent them. I guess I'll have to just let my new dr. request them. So irritating.
I'm hoping this new dr. will be helpful. She is not an endo - is a gyno who specializes in perimenopause. On her website she has articles about bioidentical hormones and adrenal fatigue. Nothing on thyroid but I figured those other 2 things are good signs.
Gosh this is annoying! I hate that I have to be such an advocate for myself (as I am for the rest of my family, including my one kiddo w/special needs). Sometimes I just want someone to take care of me, kwim?
I'll live though, right? My symptoms/complaints are fairly minor, actually, so even if I have to wait a while to see this new person, get test results, talk to her about treatment, etc. I will be okay. I have been reading a lot - just started the book The Thyroid Solution which is really great AND written by an M.D. so should be taken seriously if I run into any trouble.
A
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Old 03-02-2013, 08:37 PM   #25
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inatic - Thanks for the info. I'm going to try the Magnesium Gluconate and see if that helps with the pain issues.
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