Several questions. Please read and respond if you have any suggestions or info.

[CherylB]

I have Hashimoto's and I'm on Levo and Cytomel. I am not seeing a specialist and that is one of the things I want to ask. Is there a good Endo in my area? (Anywhere in CT but preferably in Litchfield County.)

I am being treated and the last time my labs were drawn the Dr wanted me to cut my Cytomel in half. I did it. Then I started feeling badly and went back up to a full tablet and now I don't know what to do.

I'm in a lot of pain. I just had a series of x-rays of my entire spine and bilateral hips. All were normal so the Dr only prescribed me some muscle relaxers for the pain. It has done NOTHING to help.

I am taking riding lessons and my left hip and inner thighs were in such discomfort that this past Friday I couldn't make it through the entire hour (first time that happened) and had to be removed from the horse with help. I had taken 800 mg of Motrin and a Flexeril before the ride. It was my fourth lesson and the worst, by a long-shot.

I have moved and am living in a place that has city water and I bought a Brita filter for my drinking water, but haven't been bothering to filter the water for my coffee (I drink about a pot every day.) I also don't bother filtering water when I cook with it or brush my teeth, etc.

I know that flouride is often in the water and I remember that with Hashi's that we are supposed to avoid even toothpaste that has flouride. So I started to filter my coffee water and will filter all water I cook with, etc. (What a pain in the neck! I used to have a through-the-door water filtration system in the other house.)

Anyway, I feel like crap warmed over and I tend to forget I have Hashi's. I take my meds and just go about my life, figuring all is fine if I get my labs done every so often. I realize that I have to really get to the bottom of this and put it at the forefront of my health issues.

I have been eating Atkins ('72 version) and I am wondering if that is the best WOE for this condition I have. Is it an anti-inflammatory diet? If not, what is the best way to eat? I feel 90 years old right now. I'm only turning 50 in a matter of weeks.

I'm sorry this is so long. Boiled down, I need to find a good Dr in my state and what do I need to be aware of with the city water? I noticed that Brita doesn't filter flouride out. What does? What should I do? I want to feel good again! Money is a big-time factor.

[Leo41]

Cheryl- If you have a doctor who is prescribing Cytomel, I suspect that you already have a good thyroid doctor because many doctors don't treat (or even test) T3 at all. That's a problem with thyroid. Many 'specialists' (i.e., endos) are not good with thyroid, and some people have found that their primary doctor or even a GYN is actually better. It depends on the doctor, not necessarily the specialty.

You mention that the doctor lowered your Cytomel dose, and then you increased it again. Is that on your own or with the doctor's permission? I ask because Cytomel is a very powerful thyroid hormone, and while no one should ever self-medicate with Rx, it's especially true where Cytomel is concerned. Excess T3 (Cytomel) can cause cardiac issues.

I have Hashi's and take Cytomel, and my endo manages my dose based both on the labs and my symptoms--i.e., one time my labs were fine, but my symptoms were of low T3, and he increased the dosage, and it turned out that's exactly what I needed. You need to be working with your doctor to insure that your dose meets your needs.

As to your spine/hip pain. I hate to mention age, but I will because I'm 20 years older than you are! You mention taking riding lessons. I suspect that this is the source of your pain. If your tests showed no problems, it's most likely that this is due to overusing muscles that haven't been stressed in a while.

I've read, too, about Hashi's and fluoride, and I was initially concerned because there is flouride in our drinking water in my city. My endo assures me that there's NO problem at all with the amount of flouride in our drinking water.

Since I've had Hashi's, I've read a lot about thyroid issues, and I find that there are many 'myths' that circulate on the Internet. I always check with my doctor before I begin worrying about anything.

[CherylB]

Well, my Dr prescribed me Cytomel after I asked him about it, then it was as if he knew all about it. If he did, it didn't occur to him to order it for me. I think he was primarily checking TSH like most docs do. And the Dr who decreased the dose of Cytomel was standing in for him while he was in Hawaii on vacation and I didn't trust her decision. I was feeling fine at the time. Now I feel anything but fine.

I have had the back and hip pain for years. As far back as when my husband was alive (he died in 2000) and when I was still working as a nurse (haven't worked at all since the end of 2008.) This pain is chronic but is greatly exacerbated right now by something.

I'm a lot lighter than I've been for most of those years I mentioned above. I started this journey at 234.6 and who knows how much I weighed before I cared enough to weigh myself. (?)

He didn't order labs for me when I came in this past week complaining of all this pain. He sent me for x-rays and that was all. When they came back negative (except one of my lower back showed signs of mild Osteopenia, which I have had for years due to going through menapause very early), he didn't have a "plan b" until I called and wanted an MRI. Then he said no to that and called in a muscle relaxer for me.

Well, that was Friday and come Monday, I'll be calling him again. I will go and have my labs redrawn and see where the heck I'm at. But I have to ask him each time to order a FT3 and FT4 or he only orders one of them "free" and the other he orders "total."

Like I said, I think I need a specialist.

[watcher513]

The FT4 and FT3 tests should tell you where you are. I'd start there. If he won't run them there's always healthcheckusa online (use discount code 12345 at check-out for a 10% discount).

What dose of T3 were you on before and what were you lowered to when all this happened?

[CherylB]

Thanks for replying. I was taking Levo 100 mcg (still am) and generic Cytomel 25 mcg. Then the Cytomel was cut in half. I will call the Dr tomorrow and ask him to order more lab work but I think he should be doing these things without me prompting him (which is the only reason I'm on Cytomel in the first place.)

So, none of you know of a good Endo in CT? I really do want to see a specialist this time. I feel much too crappy and there is far too much at stake here.

[watcher513]

Are you taking your T3 all at once or splitting it and taking it 2x/day.

Did he change or lower your T4 when the T3 was added? I'm asking because when T3 was added to my T4 (I was on 100 mcg. T4), they lowered the T4 down to 75 mcg. and added 12.5 mcg. T3 (which was too much) then lowered that T3 to 1/2 of that 2x/day.

[CherylB]

He didn't lower the Levo when he added the Cytomel. I was splitting it and taking half in the morning with the Levo, then the other half around 4pm. (He told me to take the full tablet in the morning but I didn't. He said it worked better that way but I read what I read on LCF and trusted that information more.) But now that I'm only taking half, I just take it with the Levo and forget about it. I had been taking that half of Cytomel in the afternoon but got tired of having my blackberry going off all the time with reminders to take this and/or do that.

[Lokarbiebarbie]

Considering that one grain of Armour Thyroid contains approx. 37 mcg. of T4 and 9mcg. of T3, and most of us take one grain am and one grain about five hours later (kind of trying to 'mimic' the real thyroid....if it was working well...) then most docs start with lowering T4 by about 20% and add in Cytomel...and they give 5mcg. am and 5mcg. about five hours later.

SO...your body is taking that Cytomel and using it all within four, five hours and then it's ..um...used up. I like having the other HALF of my T3 to take me through early afternoon, but yet not so much that I 'puff up' (too much T3 can puff you up with water...and make losing weight WORSE not better...most hyper people actually GAIN weight, not lose it).

So, I'd take that half Cytomel (IMHO) and cut THAT in half with a pill splitter and try that way.

For ME, personally, that would be way too much T4 for ME...I like mine slightly under midway of lab range. (People tested who have really good working thyroids, usually show that pattern also).

BTW, just for the record, doctors who don't do much synthetic T3...look it up in the PDR and it states that there is ONLY 25mcg. available, and so that's what they write for. So, if they look it up...that's what THEY SEE...but that's not so, it comes in 5mcg. dosage. Most will get 25mcg. and cut with a pill splitter though, because it costs less to do it that way.

When you have blood drawn, if you have it drawn without taking your split of T3 in the morning, since it's only active for about six hours, there won't be anythign TO test. If you test it right after, it will make it look like you have 'too much' (to some doctors who don't know this) and MY particular doctor (and everyone in same group) has me test almost EXACTLY four to five hours after taking my morning split (cuz it shows the T3 as active, but waning...not at peak and not after leaving the 'building').

Just so you'll know.

Another important thing is to get your progesterone, estradiol and testosterone checked. NOT FSH...that is like TSH and doesn't show the levels of actual hormones. If you are low, than that could be the 'feeling like crap' also. All the hormones play in the same playground and affect each other...if you start or do take estradiol and progesterone, that 'binds' incoming thyroid.

It's like a dance then...the doctor gives you this, and then re tests, and then ups this, or lowers that, and so on. During me going through an early menopause (which wasn't 'caught' by FSH Of course)...it was like a merry go round for awhile! Up this, down that. But it was worth it at the end!

Hope you feel better soon...make sure you put calcium four hours away from the T4, and Iron six hours away (if you need iron). Have Vitamin D tested also if you can.

[CherylB]

Thank you so very much for that information! I knew to wait about 5 hours after taking the thyroid meds and I did it that way the last time they were drawn. I'll do that again this time, as soon as I get the actual labs ordered. Playing "phone tag" with the Dr's assistants and expected a re-call this afternoon and got none. They wanted to know the reason why I wanted my thyroid levels checked at this juncture, so they had something to put in the "reason" area of the computer (to justify another testing of thyroid levels.) They reduced my drug dosages only a couple months ago. Why that didn't show on my record is a mystery to me. It's such a mess!

I don't know if they EVER test my "sex hormones" since I've been postmenopausal for years and years (ovarian failure in my 20's) and only had TOM's when I was on the pill or some form of HRT. Who knows where my levels are right now.?! I hate Dr's. And I hate needing all these damn pills and tests. I miss the days when I was young and taking nothing at all. And I was slim and sexy without trying so hard to be.

Anyway, rant over. The Dr is going to send me to a hip/knee ortho specialist as one of the next moves. I also asked that they test me again for Lyme disease. it's been a long freaking time since they tested me for that and who knows? Maybe I'm positive. That would explain a whole lot.

Thanks again for all your help. I will do my best to get the very best, most accurate results with my next lab draw. I'll post the results here.

PS: I will go back to taking my half Cytomel in the afternoons, about 5 hours after my Levo. Thanks.

[Lokarbiebarbie]

YW...and...something that is 'common' for women being new to horseback riding, doing squats, and other things...is osteitis pubis (also known as pubis symphysis). And ortho will do an expensive MRI to see this. (hint hint...I have it). And you'd first want a DEXA to see if you have osteopenia/porosis...but hip ortho didn't do much for me...wanted me to ride a bike do PT (which aggravated my condition to getting an MRI to 'see it').

Are there any physiatrists in your area? Those people are really good. My pain was in the groin area in the sides and at the outside of my hips (too many weighted squats). TWO ortho's could NOT figure it out, and then finally an expensive MRI and voila!

Um, I meant cut the half Cytomel in half, take half with the levo, other half about four hours later, see if that helps. (looks like you are saying you're taking it just in afternoon...lol..I'm sure that's not right...).

[CherylB]

What is YW? I already know I have osteopenia and I'm on Fosamax. I went through menapause very early due to ovarian failure. I have insurance so MRI's and such will be covered.

That's how I used to take the Cytomel, until the Dr cut it back to just 1/2 pill per day. As of today, I'm going back to just taking the Levo in the am and doing the Cytomel around 2 pm. Haven't received the order for labs yet. Or the slip for the MRI or heard from the ortho guy yet.

I suppose we have physiatrists up here. Seems like a few steps down the road, though.

Thanks again for all the information and ideas. Sorry you also suffer from pain.

[Lokarbiebarbie]

You're welcome.

I can't take bisphosphonates. I tried three different brands (to humour the doctor, lol) but am now on a natural bone strength building regimen.

I also use progesterone (I just am past the point of using estradiol...went post meno so young also) for bone health.

Next time you see a doctor, ask to have your Vitamin D assesesed too..mine was VERY low and was brought back up and I feel a LOT better. Had no idea mine was so very low.

I hope you feel better...and soon...tell that horse to go easy on you.

[CherylB]

My Vitamin D is alwasy fine. No simple answers are ever found when trying to find what's wrong, I'm afraid.

Thanks for the well-wishes. I'm putting the riding lessons on hold for now. I just can't tolerate that stradle.

[juliekaboolie]

Hey there! Just wanted to add my own $.02..... it's possible your pain is caused from a food allergy. The reason I mention this is that my SIL developed bursitis, has serious eczema and her doctor encouraged her to get an allergy work-up. She found out she has some serious food allergies (coffee and blueberries!!). If she cuts those things out, the inflammation goes away and so does the pain. Just a thought!!

[juliekaboolie]

Also, even if you aren't celiac, wheat can cause the pain, too.