More thyroid nonsense?

[murielm99]

I had radioactive iodine treatment for my Graves Disease, back in April. For awhile, my thyroid levels were still high, so I was continuing to take methimazole.

Monday, the doctor told me to stop the methimazole, because my levels are low now, and I am hypothyroid. I could have told her that without the labs. I am gaining weight and my eyebrows are falling out. My hair is coarse, and I am often fatigued.

I am having new labs in two weeks. Maybe I can start synthroid soon, and get my body back to normal.

So I stopped the meds. I had already taken two pills on Monday. Tuesday was the first day with no methimazole.

I woke up about 4:30 this morning and took my dog out. I felt a bit tired, so I sat at the computer. I started to perspire so badly that I soaked through my clothes. I ended up sitting on a towel, wrapped in a sheet.

I drank some water, and made the mistake of having some decaf. It must have heated me up even more. (I can't do caffeine any more, and my body does not currently regulate my temperature very well).

Pretty soon, my face was puffy. My hands, feet and ankles were puffy, and my stomach was distended. I forced myself to go take a shower.

I could not urinate. I knew that I had had quite a bit of water, and some decaf, but I couldn't go. I thought my kidneys were shutting down.

After awhile, I felt marginally better. I figured out that I was probably dehydrated. I was able to urinate again after about three hours. I sent my husband out to get some pedialyte as soon as the stores opened. I am doing better now, but I am pretty sure this was my thyroid messing up my life again. It's amazing how something so small can cause so much trouble.

[Nite Owl]

1. How are you doing now?

That sounds like a very scarey experience.
My doctor is adding thyroid to the bloodwork because my pulse has been racing. I also have a nodule. From the type of swings that you describe it's nothing like that though.

I hope things level out and you start feeling normal (whatever that is!).

[murielm99]

2. I slept a lot yesterday.

I feel much better today.

It is possible that I had a bug. This could have had nothing to do with thyroid. But given my experiences over the last two years, I suspect my thyroid.

I was diagnosed with Grave's Disease because of atrial fibrillation. So many doctors fail to diagnose it correctly. You are lucky to have a doc who is seeing about your thyroid.

I hope you can find a good endocrinologist. Mine sucks. I have been on the verge of firing her several times. I am pretty sure she would have been dismissive of this incident, telling me, "I have never heard of such a thing." She has done this with many of my questions and symptoms, and later, I find out from other Grave's patients that my problem was quite common.

I live in an area where I would have to travel a long distance to find another endocrinologist. I will see how things go when I start synthroid. If I am not satisfied, I will look around.

I see a very good cardiologist. My jumping heart is not jumping all the time these days. I take two medications that help quite a bit. Please find a good cardiologist, too. My heart symptoms may clear up on their own, or I may need cardiac ablation and a pacemaker. I hope not.

Good luck with your thyroid.

[Nite Owl]

3. That is a difficult situation

when your doc is not to on the ball and there are no choices. Traveling when you are not feeling well makes it all the harder. Hoping the heart problems clear up on their own now.
I don't know what lies in front of me yet, if it isn't the thyroid it has to something.

[Warpy]

4. Those symptoms were dramatic enough to require a trip to the ER

and I'm quite serious about that. Anything that comes on that quickly and dramatically requires a call to the doc's answering service followed by a ride in to be seen and treated.

A fluid shift like that CAN shut down your kidneys, although the damage isn't permanent and the dialysis will be only temporary. This was a crisis that should never have been managed at home.

Yes, I'm lecturing. If this ever happens again, get thee to an emergency room. That's what they're in business for.

[murielm99]

5. I don't mind the lecture.

I was seriously considering it. If I hadn't started to feel a bit better, I would have been in the ER.

I feel like I have gone to the ER a couple of times when I did not need to do that. It makes me feel like a hypochondriac.

If that ever happens again, I will go.

[ThomCat]

6. Wow. I'd be freaking out.

I guess we all get good at dealing with only whatever we're personally dealing with.

I hope you have this under control soon, and I hope you're well. I agree that a trip to the ER was warrented, and I hope you won't hesitate in the future.

Please be well.

[BluePatriot]

7. Ceasing the drug maybe?

Maybe it was because of suddenly stopping your drug. I had a bad reaction to Synthroid (newly fired internist doc OD'd me) and they told me to cease it immediately (another reason they got fired) Ugh...my poor system. Toxic riding up to hyper and toxic crashing back down to hypo for around 6 weeks now. For some reason doctors don't think a relatively low dose of something can affect people so dramatically. I hate the "all in your head" speech when it comes to obvious withdrawal...

Luckily my new endo is competent so far. She is on Mary Shomon's Top Docs list. The plan last time was that they are going to taper me up gradually on Synthroid starting with the lowest dose. I will probably start that on Monday since my labs are back. I do hope your doc does a gradual-adjustment thing in regards to your dosing, so make sure to ask, I OD'd and zoomed up to hyper on the 88 mcg which is still pretty low.

Hope you feel better soon!

[Manifestor_of_Light]

8. Please go to Mary Shomon's website.

She is a big advocate for Armour Thyroid, as I am (I've been hypo since I was ten or eleven).
Her website talks about all the crap she's been thru dealing with idiot doctors who think Armour is old-fashioned, only go by blood tests rather than how the patient feels, and more.



Please go to her website and get informed:

www.stopthethyroidmadness.com

[kdmorris]

9. That's not actually Mary's website

But it has tons of good info nonetheless. Until I started looking around, I thought I was alone (and crazy). Then you realize how much crap thyroid patients are going through and feel kind of like part of the family. It's amazing how many of us are treated so badly, to the point that at some points, I've had to self-medicate. I don't now, but only because I found a doctor who will treat me by symptoms and not TSH. Most doctors would probably freak completely out when they found out I was on 6 grains of Naturethroid.

[DemBones DemBones]

10. Right, Mary's site is at about.com. There is a link

to her Top Thyroid Docs page, at stopthethyroidmadness.com.

I've got to find a doctor who will treat my symptoms and not the TSH. I'm a person with classic hypothyroid symptoms, not a number, damn it!

[flamingyouth]

11. I just started taking Armour about a month ago.

I can't believe the difference it's made in my life. I only take a 1/2 grain but wow - the difference is astounding. I feel so much better. I've been borderline for years.

My mom took Synthroid for about a month and it made her so sick her doctor took her off of it.

[Missy Vixen]

12. flamingyouth, how's it going now?

I hope that the Armour is really doing its thing.

I was diagnosed with hypothyroidism in 1995. I'm furious when I read or see jokes about "thyroid disease". I wouldn't wish it on my worst enemy.

Julie

[murielm99]

13. My latest labs have a note attached

from my endo: Normal thyroid blood test. Continue Synthroid.

I still feel crappy. I have little energy, and a great deal of muscle weakness. How long should I give this synthroid? Will I ever feel normal?

My next appointment with this inadequate doctor is November 1st. I need to feel better.

[Missy Vixen]

14. murielm, are you familiar with Mary Shomon?

Mary Shomon is a patient who did ten years of research and wrote a book about thyroid disease. (Her book's called "Living Well With Hypothyroidism", and it was a huge help to me.)

Here's the deal: The doctor is treating to the labs. They don't treat to the symptoms, unfortunately. I know that I will feel tired, have some degree of brain fog, dry skin, brittle hair, etcetera, for the rest of my life, because if they gave me the amount of Synthroid I probably need to NOT have those symptoms, I'd have fun stuff like heart palpitations. The only way to manage the symptoms is to get enough sleep, get some exercise, eat as healthfully as you can, cut out as much soy as possible from your diet (soy is Kryptonite to thyroid replacement drugs,) and maybe see a naturopath.

Keep taking the Synthroid daily. It will build in your bloodstream and you will feel better, but your body needs the replacement hormone for a little while before that happens. If the doctor isn't giving you any answers, Mary has a list of thyroid docs on her website that may be able to help.

I hope this helps.
Julie