[emmtee]

in reply to: How long does a Methimazole dosage change take to reflect on a blood test? #1175488

Catstuart – Thanks for answering my question. I’ve been back on the prescribed dosage for 2 weeks, so I think a blood test now should be indicative of what the methimazole is doing to me. I know all about TSH lagging. Mine didn’t change for over 4 months on methimazole, and then at my next test 2 months later, I was suddenly hypo. It was as if my pituitary gland wasn’t doing anything when I was hyper, so it went into hibernation or something. When it finally woke up, it went into overdrive.

Carito – Don’t worry, all my doctors – my GP, my Endo, and my latest specialist, my nephrologist, know all about my irregular heartbeat. It was just starting to appear when I went to the ER with food poisoning a while back, and I mentioned it to them. They did an EKG and didn’t find anything to be concerned about. I do notice that it seems to be closely related to my pulse rate, which is always in the 40’s and 50’s when irregular vs. the 50’s and 60’s when not. (And I’m definitely NOT and athlete, so that’s not a good thing. I do take BP meds, though.) I keep careful records of my daily weight and twice daily blood pressure, so I know that, in fact, the medication has everything to do with it. The irregular heartbeat indicator started being triggered at the same time that my hypo symptoms appeared last summer. My endo kept lowering my methimazole dosage, from 60, to 40, to 20, but my TSH was actually still going up. All the while, my weight continued to go up and I continued to have the ihb. Finally, when my TSH hit 65, my endo took me off the methimazole completely and the ihb stopped the next day. My heartbeat stayed regular almost all the time until 2 weeks after I started the methimazole again. I have clear documentation – my heartbeat is almost never irregular when I’m hyperthyroid or euthyroid and almost always irregular when I’m hypothyroid.

Bobbi – I may not have a recent blood test, but I have the blood pressure tests and the history of the blood pressure/irregular heartbeat tests and the blood tests that were taken during the same periods. My endo has seen my records. It’s really clear that my irregular heartbeat is an indicator that I’ve gone hypothyroid.

When I was hypo last summer, it was really bad. I had terrible pains – muscle cramps, backaches, headaches, and I was so tired that I spent a lot of days in bed sleeping. So when, 10 days before I was to leave on vacation, I saw that familiar irregular heartbeat indicator, I became concerned. This vacation was a cruise with my siblings; a gift from our mother and an occasion to remember our father who had passed away in April and our sister who had passed away 3 years before him. I had been working really hard learning about the various ports, and I needed every ounce of energy I had to explore them. Wasting the days away in the cabin was not an option.

When I had stopped taking methimazole last summer (on doctors’ orders), the ihb went away immediately, so I figured I could try something less drastic this time and just cut my 10 mg dose in half. That may sound like a lot, but I’ve changed doses in much larger increments before – from 20 to 40 to 60 to 40 to 20 to none. There wasn’t time to consult the doctor this time. She’s only in 3 days a week, and I was so busy getting ready for my trip. I waited a couple of days to make sure the ihb’s weren’t random and then a week before the trip I started halving the pills. The ihb indicator finally stopped triggering the day before the trip, and it never triggered during the entire 10-day trip. (I took the monitor with me to keep track.) After coming home and resuming my regular 10 mg dose, it took 5-6 days for the ihb to be consistent again.

I think I’ll get my labs done on Wednesday. I fully expect a call from the nurse next week telling me that I’m hypo and that the doctor is reducing my dosage to 5 mg. Then I’ll tell the nurse to tell the doctor that I took a 2 1/2 week detour. I’d tell the doctor myself, but I know she’s busy. We’ll go over everything at my next appointment in January. She’ll tell me I could have called her, but what’s done is done. She’s a really good doctor. I can tell her anything, and I’d always planned to.

[emmtee]

in reply to: Are Migraines related to Graves’? #1175408

I first started getting migraines in my 20’s and my Graves’ didn’t hit until my mid 40’s. On one hand, I know that both migraines and autoimmune disorders run in my dad’s side of the family, so that would support the idea that they might be related. On the other hand, the fact that so many people have both Graves’ and migraines could just be a coincidence. Consider that both conditions happen to be more common in females. Also, both conditions seem to be related to stress. So maybe they’re not necessarily related, but they appear to be because they affect the same types of people: stressed out females.

BTW – A few months ago, when my GP found out how much Excederin I was taking, she put me on Topamax. It took a while (over a month) to see any improvement, but I’m definitely having less migraines now.

[emmtee]

in reply to: Latest labs #1172534

Bobbi wrote:

One thing to keep in mind, emmtee, is that the range of normal for any of the items on a blood test list is determined by the specific lab involved. The way one lab does the testing–the materials used, etc.–can give it a different range of normal than that of another lab using different techniques or materials. So going online and finding a different range of normal doesn’t make your test results normal. For the lab you used, your results are abnormal.

My lab’s creatinine normal range is .57 – 1.00, and according to Medicine.net, normal levels are approximately .6 to 1.2 for men and .5 to 1.1 for women, so that’s really close to the normals for my lab – maybe just a tiny bit broader. I tested at 1.08, so I’m right there at the top of the Medicine.net normals and just beyond normal for my lab. Either way, I know it’s something that needs to be rechecked. My eGFR was 61, and the normal was <59. I've actually had slightly elevated GFR several years ago when I was taking a daily prescription anti-inflammatory. I do take a lot of Excederin for migraines and I've been taking a lot of Advil lately because of my back pain. I'm trying to stick to Tylenol (and not very often) right now to see if that helps.

Oddly enough, my sodium was a little below the normal range, and my chloride was exactly at the bottom of the normal range, so maybe I need to eat more salt?

Bobbi wrote:

It isn’t unusual for us to get muscle cramps at this stage of treatments. Hyper levels of thyroid hormone are bad for our muscles. And your GP’s advice was good advice. I got a lot of help from the cramping by doing gentle stretching exercises throughout the day. It helped to “work” my muscles before they were strong enough to tolerate exercise, and it alleviated some of the tightness and cramping. Just be sure that you don’t “bounce” when you stretch. Bouncing will stress the muscle, not relax it. And if you get a cramp in your calf, stretch out the muscles by extending the leg and heel.

That’s good to know that this is normal. I love stretching and usually do a little even before I get out of bed in the morning. Unfortunately, these stretches also tend to trigger the muscle cramps, so that makes me a little wary.

My muscles are in such sorry shape right now. I don’t think any of the weight I’ve gained is muscle. Most of it seems to be fat in my lower abdomen. That’s where I had surgery, so my insides are pretty messed up. On Saturday, I actually went swimming at my sister’s house. It was a real milestone because I had had open wounds for a year and a half and wasn’t allowed to swim or take a bath in all that time. Anyhow, it was nice to swim, but I got winded really quickly. Also, lifting my head out of the water hurt my neck.

Kimberly wrote:

Hello – Hopefully, your next set of labs will be done fairly soon. Dosing with ATDs is part art, part science. You want the dose dropped enough that you don’t go further into hypO territory, but not so much that you bounce back hypER again.

I would definitely ask your doc how quickly she plans to re-test on this new dose. Although it takes several weeks to know whether a dose of replacement hormone is right for you, patients often respond *much* more quickly to changes in ATD dosage.

It might also be helpful to keep a symptom log during this period and call your doctor’s office ASAP if you don’t start to see some relief from the cramping, palpitations, weight gain, etc..

Don’t worry – my endo is on top of it. On Monday, I picked up my test results along with the lab order for Monday’s test and a second lab order for my next test to be taken in 4 to 6 weeks. My next lab order is also for the TSH/T-4/T-3 and the Comp. Metabolic Panel.

BTW – I had the same lab tech this week that I had last week. I was chatting with her about my test results (which I was carrying with me) and she told me that she has Graves’ disease too. She had been taking 90mg of methimazole at one point, so I feel a lot better about my old 60mg dose.

That’s a good idea about keeping a log. I already keep a log of my weight (started in 2010) and my BP (started last fall.) I showed my GP my BP log with all the irregular heartbeat notations and she just said not to get hung up on the numbers – to go by how I’m feeling. So naturally, I’m now “feeling” palpitations all the time. :rolleyes: I don’t know if I was ignoring the feelings before or if I’m panicing now. The thing is – my mother was recently in the ER with atrial fibrulation, and when her pulse evened out in the 40’s, they had to keep her in the hospital a couple of days. When I have the same kind of symptoms, my doctor says not to worry about the numbers. :rolleyes:

I’m really happy with my endo, but I really feel like my GP could have done more. With the symptoms I told her about, along with the weight gain, I would have at least expected her to order a blood test, or if I had mentioned that I had the lab order from my endo, she could have asked to be copied on the results.

[emmtee]

in reply to: Successful Thyroidectomy! #1172498

adenure wrote:

I went in and put on my hospital gown, hat, socks. They put in an IV and then as the nurse said, “Slipped me a micky” I think “versa”? to help relax me.

FYI – It’s “Versed” (pronounced with two syllables). Good stuff!

Glad you’re doing well.

[emmtee]

in reply to: In need of support #1171739

Interesting info about I-123. I just checked my uptake and scan test results, and it turns out that that’s what they gave me (.2 mCi). I remember there wasn’t much of a wait to get my appointment (maybe a week or so?) and I wasn’t told to go on any special diet before hand. As it happens, though, I don’t like seafood and the salt in my cupboard isn’t iodized. (When I bought it, it was on sale and all the iodized packages were already sold, so I bought two of the non-iodized packages that were left on the shelf.)

[emmtee]

in reply to: Trying to cope with Graves but still feeling in limbo #1171760

I was diagnosed with hyperthyroidism by my GP. This was based on my report of tremors, her observation of my enlarged thyroid, and blood test results of low TSH and high T4. She referred me to an endocrinologist and ordered a thyroid uptake and scan to be completed prior to my endo appointment. The nuclear medicine doctor diagnosed the Graves’ Disease based on the uptake and scan.

Once I had the diagnosis, a lot of things suddenly made sense: the weight loss in spite of eating whatever I wanted, the eyelid retraction, the hightened emotions, etc. Like you, I had read about the thyroid antibody test and was told that it wasn’t necessary for me. It was clear from my uptake and scan that I had Graves’. My nuclear medicine doctor was great. He had shown me my scan, and I could see that one side was larger than the other, and that the idodine was absorbed evenly – no dark spots (hot nodules) or white spots (cold nodules.)

I was fortunate to have found this bulletin board right after my diagnosis, and I learned that lots of people here were diagnosed without an antibody test.

You know that saying, “If it looks like a duck, walks like a duck, and talks like a duck, it must be a duck.” Of course, you could do x-rays, a blood test or look at its feathers under a microscope. But do you really need to?

I’m glad you’re going to see an endocrinologist. Once you get your updated blood tests (after a Graves’ diagnosis, we should all have them on a regular basis for the rest of our lives) you’ll have a better idea of what all your symptoms mean. I wasn’t aware until reading this bulletin board that it’s possible to have both Graves’ Disease and Hashimoto’s Disease. In any case, although I understand your desire to treat the “real problem”, there is no treatment against the antibodies. The best that modern medicine can do right now is to treat the body parts affected by the antibodies and hope for remission.

The thyroid affects your whole body. Of course it’s possible you have other issues, but if that’s the case, it will be easier to identify those issues after you get your thyroid hormones in the normal range.

Good luck! Please do keep us posted.

[emmtee]

in reply to: Latest Lab #’s #1171621

ncpatches wrote:

According to my report, lab ‘normal range’ is as follows:
TSH .3-3.5, mine being .0008
T3 2.3-4.2, mine being 9.2
T4 .8-1.8, mine being 2.46 (hard to read my writing, it’s either 2.46 or 2.56)

It looks like the ranges for your lab are pretty close to mine. Mine are:
TSH – .450 – 4.500
T3 – 2.0 – 4.4
T4 – .82 – 1.77

Of course, everyone is different, but your current levels are pretty close to what mine were after 4 weeks on 20mg of methimazole.
TSH – <.006 (both my test and range are a bit higher than yours, so we're probably about the same)
T3 – 8.1 (our ranges are almost the same, but my T3 was a bit lower)
T4 – 2.5 (our ranges and tests are practically identical)

After this test, my endo increased my dosage to 40mg, and after another 6 weeks my T4 was barely in the normal range (1.76) and my T3 was about half way to normal (6.0). TSH hasn’t changed since my initial diagnosis.

So, 40mg almost got me in the normal ranges. Hopefully, it will get you all the way there. BTW, for the sake of comparison, I’m a 47 yr. old female and was about 155 lb. at the time of these labs. Did you get a copy of your uptake and scan results? Mine estimated the size of my thyroid to be 50 grams. My uptake at 4 hours was 57% (normal 5 to 15%) and my uptake at 24 hours was 73.5% (normal 10 to 30%.)

[emmtee]

in reply to: Maintaining employment while dealing with Graves Dz #1171460

You’re in my prayers.

[emmtee]

in reply to: Latest Lab #’s #1171615

Every lab has different “normal” ranges, so we can’t really tell how far off your numbers are without knowing your lab’s ranges. If you don’t have them, you could probably call the lab and ask.

That being said, they look similar to my starting numbers, so if your ranges are similar to my lab’s, then yes, your numbers are ugly.

BTW – Has your doctor told you what might happen if your T-3 and T-4 don’t return to normal before the surgery? I know you’ve waited a long time for your surgery, but is it possible they’ll postpone it if your hormone levels aren’t normal? I don’t want to worry you, but if it’s a possibility, I think it’s best to be mentally prepared for it. The Graves’ makes everything harder.

[emmtee]

in reply to: Question about Methimazole #1171553

I’ve wondered about other people’s dosages, too. I started out at the same dose as you (20mg taken in 2 doses.) Now I’m taking 60mg and my T-4 and T-3 are finally in the normal range. (TSH still hasn’t budged in 4 months.) I was a little concerned about the dose and asked my endo. She said that 60mg isn’t the max – that we could go higher if it had been necessary. She reassured me that side effects can happen at any time at any dose, so I don’t need to worry about being at higher risk for them at my dosage.

I’m 47 now, and past tests had shown my bones to be above average in density. (Until I developed Graves’ and lost a lot of weight, I was overweight for most of my adult life, so I think my bones had to be extra strong to carry all of me around.) I had symptoms (tremors, weight loss) for about a year before being diagnosed. I started taking vitamin D years ago on the advice of my old doctor (tests showed my levels were low), but I wasn’t taking it (or any of my other vitamins) at the time my symptoms began. I’m back on it now, though.

[emmtee]

in reply to: Diagnosed today #1171444

When I started on Methimazole, I thought my doctor told me she was prescribing 20mg twice a day, but when I got the prescription it was for 20mg daily. In retrospect, I think what my doctor was telling me was that I was to take 20mg daily and that I could divide it into 2 doses. (I take metoprolol in 2 doses daily, so it’s not a big deal to divide my methimazole dose.)

As it turns out, it took 4 months and 2 dosage increases before my T-3 and T-4 fell into the normal range. I’m now at 60mg daily, divided into 2 doses.

My endo did tell me it was unusual for it to take this long to find the right dosage, but it’s good that your doctor started you out higher because of your upcoming surgery.

[emmtee]

in reply to: What about thyroidectomy? #1171285

When I was first diagnosed, surgery was my first choice for the same reason you’re favoring it – it seemed like it would be the quickest route to “normal.” I had read all about how it can take a really long time for your thyroid to die after RAI, and even longer for you to find the right dosage of replacement hormone. I wanted something that I knew would work faster than that. Before I made my decision, I asked all kinds of questions, but there were a couple of things that I didn’t know enough to ask about.

1. I didn’t know that I would have to initially go on methimizole in order to get my thyroid hormones in the normal range before surgery could even be done. If you undergo surgery when you’re hyperthyroid, you risk a thyroid storm.

2. I didn’t know that it would be so hard to find a surgeon who would even do a thyroidectomy on a Graves’ patient. (It’s not like I live in the middle of nowhere; I live in the 6th largest city in the country, and my endo works for the best hospital in the state.) In some areas it might be easy to find a surgeon, but in others, it just isn’t done.

I met with one surgeon who told me a thyroidectomy is harder on a patient whose thyroid is enlarged and he didn’t want to risk it. My endo doesn’t know of any other surgeons who would do a thyroidectomy for Graves. My GP referred me to another surgeon and I have an appointment on Wednesday, but I don’t have very high hopes. Kimberly actually asked around for me and found a surgeon who sounds qualified, but he doesn’t accept my insurance.

Of course, even if I had found a surgeon months ago, I still couldn’t have had the surgery until now because it’s taken 4 months and 2 dosage increases for my T-3 and T-4 to get into the normal range.

If I had known then what I know now, I would have just had the RAI back in November. At this point, I’ve pretty much given up on the idea of surgery. I’m doing okay on the methimazole, but I’m at the maximum dose now and I know it’s just a matter of time before I’ll have to choose a permanent treatment.

[emmtee]

in reply to: TSH numbers #1171249

Shadoe –

Yes, you can feel fine and still have Graves’ that is out of control.

When I started on my first dose of methimazole, I felt fine after a few weeks, but my blood test results at 4 weeks were still off. It took another 3 months and 2 dosage increases (I’m now taking 3 times my initial dose) before my T-3 and T-4 were finally in the normal range. I still feel fine, and now I have the added reassurance from blood tests that my Graves’ is under control.

I’ve had a very stressful few weeks – so stressful that my tremors came back for a few days even on my full dose of meds. I don’t want to even think of what my body would have done if my thyroid hormones weren’t in check.

Regarding the other tests you were curious about, you might want to ask your doctor why he hasn’t tested your T-3. My T-4 fell into the normal range before my T-3, so if my endo hadn’t tested for T-3, I wouldn’t have had the 2nd dosage increase.

You may have also heard about the antibody test. I haven’t had it. It wasn’t needed in my case because my Graves diagnosis was made based on my thyroid uptake and scan. Of course, I was just diagnosed last year. You’ve been dealing with this a lot longer than I, so YMMV.

[emmtee]

in reply to: Wife want divorce and family in shambles #1170254

I’m so sorry your wife isn’t able to stay on the methimazole, but at least you were able to see some improvement before the serious side effects appeared. Now it’s clear that her disease is the source of her unhappiness, and even though the treatment will take a while, at least there is a treatment. Please keep us updated. I wish you both the best.

[emmtee]

in reply to: Methimazole: How much is a lot? #1170737

When I was first diagnosed with hyperthyroidism (the GD diagnosis came a couple of weeks later after the uptake and scan), my PCP said it was severe. My endo told me that, based on the large size of my thyroid, it’s unlikely I’ll that I’ll go into remission. My scan showed enlargement, but no nodules.

Here are my labs to give you an idea:

09/30/11
TSH: <0.006 (Normal 0.450 - 4.500)
Free T4: 4.31 (Normal 0.82 – 1.77)

10/25/11
Uptake at 4 Hours: 57% (Normal 5 to 15%)
Uptake at 24 Hours: 73.5% (Normal 10 to 30%)

11/28/11
Started 20mg Methimazole

12/30/11
TSH: <0.006
Free T4: 2.50
Free T3: 8.1 (Normal 2.0 – 4.4)

01/09/12
Started 40mg Methimazole

02/15/12
TSH: <0.006
Free T4: 1.76 (barely normal)
Free T3: 6.0

02/27/12
Started 60mg Methimazole

Next scheduled blood test is at 6 weeks, so about mid-April.

As far as my symptoms go, I felt a lot of improvement when I was on 20mg, and now I feel completely normal. My systolic BP is down from the 130’s to the 110’s. (I had been on 25 mg metoprolol for years, and my PCP increased it to 50mg when I was diagnosed.) My tremors are completely gone except when I’m particularly stressed, and my eyelid retraction is almost completely gone. My PCP noticed a few weeks ago that I’m a lot more relaxed now.

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