Another Thyroid Thread.... (Redux)

[redrhodie]

I think this is a good thing, Indy. You gave this doctor a lot of time to try her way. Time to move on to someone who will listen and do the appropriate tests. At least you PCP seems helpful. Maybe once you get the referral, you can get on a call list for cancellations if you can't get an appointment soon.

[evangundy]

I have been going back and forth with my pcp about my thryroid, for the past couple years. I was diagnosed with Hashimoto's by my previous doc. Besides his training (osteopath) he had to learn more about the issue when his wife was diagnosed. Turned out I was having same issues at the same time as his wife. The first few years working with him were wonderful. We had things mostly under control.

Cue peri-menopause ..... hormonal changes, weight gain, serious illness, fibroid tumors requiring partial hysterectomy. all in one year. Caused some body changes that my thyroid didn't like. then my doc retired. Then my husband retired so had to change health care providers. Then I changed jobs and again a new provider. New doctor does not really understand thyroid stuff.

I finally have an appt with an endo next week. One of the things both doctors recommended was to be wary of where on the internet I got my information from. Guess I won't tell them about the TE forums :-)

They both have recommended the information found at http://www.thyroid.com/ and at http://www.mayoclinic.com/health/has...isease/DS00567
Funny how that's where I got most of my info that they are disputing ... grrrr

edit: link wrong for thyroid website above - should be http://www.thyroid.org/
.org instead of .com - interesting difference

I'll know more next week. Virtual hugs to everyone - this is no fun but let's work on it together :-)

Edna

[indysteel]

Gosh, Edna. What an ordeal. I hope your new endo is able to help. As for not trusting everything you read on the Internet: I get that, and I try to keep that in mind as I'm reading. But I find the kind of general information found at a site like Mayo to be fairly useless when it comes to understanding anything but the basics. It offers very little guidance on the nuts and bolts of managing thyroid disease.

[redrhodie]

How is everyone doing on thyroid meds these days? I am doing well on mine. My hair has stopped falling out and is regrowing. If anyone has this happen to them, it takes about 3 months to stop once your meds are correct.

Thank God I was diagnosed before my brother's heart attack, because I really don't think I could have handled the stress or the drive to the hospital as I was.

[Blueberry]

I felt great at first, but I'm now feeling really hypo again. To the point that those around me have noticed. Now that I've had a taste of feeling good, I'm not very happy about it!

My doc scheduled blood work at the 6 week mark, and I had it drawn on Friday. It was another couple of weeks before I could get back in with her, so I'll probably get the results just before Thanksgiving (unless she sends them electronically - but I still won't have a new dosage until then).

Glad to hear you're feeling better!!

[solobiker]

I have been having huge problems with sleeping lately. I been a poor sleeper for many years...it has been pretty bad the past couple of weeks. I got to bed around 9/930 and wake up by 2am and can not fall back to sleep. Heck, one time last week I woke up at 11pm. :-( Instead of staying in bed I just get up and ride my spin bike for 45-60 min then start to get ready for work. I am planning on calling the Dr this week to see if I can have my blood levels tested.

[indysteel]

Red, I'm glad your hair has stopped falling out! Yay!

Blueberry, it's not uncommon for the initial dosage to be insufficient. I expect your doc will bump it up for you, but if you're feeling lousy, call her to find out the results in advance of your appointment to see if a dosage change is warranted. There's no reason you should have to wait until she physically sees you.

I've now been off Synthroid for about five weeks. I saw a new endo a few weeks ago. It's too soon to tell whether I'll like her any better than the last one, but she did have a slightly different take on what might be wrong with me. There's a chance I have both Graves' and Hashi's, which might explain why I'm cycling between hyper and hypo. I get my blood drawn in a week, so I'm eager to see where I am. I feel pretty good though. In fact I feel about as normal as I've felt in a while. I've been able to work out nearly every day, I sleep through the night minus my usual potty breaks. I may be slightly hypo, but if I go on synthroid again, it likely won't be a daily dose.

I keep meaning to make an appointment with a nurse practioner recommended to me who does holistic hormone testing. I'd like to know where things stand across the board as far as hormone levels.

[Red Rock]

Well I went to my endo today. So far good/great news. I have been on 10mg of Methimazole. My FT4 and FT3 were within range. So he wants me to stay on my 10 mg until January. Then on 1 January, he wants me to drop the dose to 5 mg and continue until we do another reading in February. See where my numbers are and then either stop(preferred method) or continue in order to keep my levels up. I feel like myself again. That part is the best. Now, I just have to gradually get myself back on the bike and start riding again. I think I have zero aerobic capacity right now.

[Catrin]

It is so good to hear that you are feeling better Red Rock! Yayyyyyy! Have fun on the bike now

[indysteel]

Well I went to my endo today. So far good/great news. I have been on 10mg of Methimazole. My FT4 and FT3 were within range. So he wants me to stay on my 10 mg until January. Then on 1 January, he wants me to drop the dose to 5 mg and continue until we do another reading in February. See where my numbers are and then either stop(preferred method) or continue in order to keep my levels up. I feel like myself again. That part is the best. Now, I just have to gradually get myself back on the bike and start riding again. I think I have zero aerobic capacity right now.

I'm glad you're feeling better. I am curious though as to what you mean by stopping the drug as the "preferred method." Based on everything I've read, most people have to stay on methimazole for at least 18 months to induce a remission, and remission only occurs in about 20% of patients. Typically, once patients get within healthy T3/T4 ranges, they only have to take a very minimal dose of the drug, but some dose is necessary unless and until they're in remission. Some docs are comfortable dosing with methimazole over longer terms; some prefer RAI as a longterm solution.

I'm not suggesting I'm an expert on any of this; I'm only going off nearly everything I've read about methimazole. I came off of it in less than a year, but my situation may be atypical if my new doctor is correct that I have both Graves and Hashis. I'm not really convinced I'm in remission.

[redrhodie]

I hope everyone gets better soon! Good thing we have each other for venting and support.

Solobiker, I had a couple of those sleepless nights this week, so I feel for you. It's really frustrating and exhausting. I hope you find some rest.

[solobiker]

Still no sleep for me.. Grrrrrrr. It has gotten worse in fact. I go to bed around 9ish and wake up at midnight with NO hope of falling back to sleep. They tested my thyroid levels which came back fine so I guess it is not the synthroid doing it. They are no going to check my cortisol levels. I feel like I am on speed all day and night even though my HR is nice low....sitting in the upper 50s at rest at the Drs office. I was just talking with my neighboor and she told me she when through the same exact thing during perimenopause. This may be a possibility as I am nearng 43 years of age and from my research have some other symptoms. Gosh...this really stinks if it is..I have not slept well in weeks. Last night I was up at midnight and just kept watching Star Wars IV over and over again. Sigh...or should I say Yawn..

[e3rdpower]

I have Hashi's, and began perimenopause a bit young a couple years ago. My cortisol levels were a bit off, but not terribly. My gynecologist recommended low dose birth control to help regulate hormonal levels, but I was resistant, thought it would get better, and went a year feeling very uneven. My thyroid med levels also needed to be adjusted over this period of time (which makes sense given the interaction of the HPTA axis.) Six months ago I finally gave in a went on a low dose birth control. I am amazed at how much better I feel. My thyroid appears to also have stabilized.
Your mileage may vary of course, and cortisol testing definitely seems indicated, but that was my experience. The thyroid/adrenals/sex hormones are all very interrelated.

[solobiker]

Thanks for your reply. I go back to the Dr for a follow up in about 2 weeks. I really hate this nervousness feeling. It is for NO reason at all. I am just sitting on the couch and it feels like my HR is going a million miles and hour and I am sooooo tired. Tried to take a nap and just could not. grrrrr.

[indysteel]

Solo, what were your specific levels the last time you were tested? What a doc may deem as "just fine" might not be just fine for you.