[adenure]

in reply to: I’m ready to take the bridge! #1176724

Hi, I’m sorry you’re going through so much. I don’t have a whole lot of advice, but you mentioning the migraines made me feel like I should share the information I got from my own doctor when I was dealing with headaches. I don’t have the info. right in front of me, but I’ll do my best to remember as much as I can.

I went to a headache class that talked about all the different types- like tension, migraines, and cluster. You said you’re taking high doses of NSAID’s. I remember being told that things like Advil & Tylenol should only be used 2 days a week or the body gets used to it, expects it, and will have rebound headaches. The neurology department had different medications that, after being taken for 4-6 weeks, are supposed to help prevent headaches (including migraine). The drugs are FDA approved for migraine relief and prevention even though that isn’t their primary purpose. The drugs were from 3 groups: anti- seizure medications, anti- depressant medications, and betablockers. I don’t know the doses or the specific names, but that is what this neurology dept. prescribes for headache prevention. Naturally speaking, I guess B2 & Magnesium are supposed to be helpful as well. Acupuncture was also recommended. Maybe your primary would know of any of the above approaches instead of the NSAID’s?

I’m sorry I can’t remember much else, but maybe another approach to treating your migraines would help?

[adenure]

in reply to: Anxiety Leave us Alone! #1176645

NPR is national public radio. It has a lot of talk/ news and kind of drones on- a little boring… so it might help you sleep. http://www.npr.org/

[adenure]

in reply to: Anxiety Leave us Alone! #1176641

Hi!

My anxiety did go away after surgery, but I did have what I call “anxiety breathing” on and off after surgery. It’s kind of a feeling where I can’t get a real deep breath. It’s like I have to focus on it and I notice my breathing seems shallow. I never had that before Graves Disease. I did deal with it for a good 3-4 months post surgery. I still have it happen if I haven’t had enough sleep (7 hours). So, it could be that your hormone levels are still trying to get settled. 2 weeks isn’t much time yet for that, so it could be that the anxiety is a reflection of your hormones trying to find their levels still. I had insomnia, headaches, some anxiety type symptoms while tweaking the Synthroid. And, even today, it isn’t perfect. But, it is good enough I think. Hoping it’ll improve as time goes on. I’d see your doctor, but also give the Synthroid dose a good 2 months to take full effect on you, get labs done and go from there. I know it’s hard; it takes months to get everything close to normal and feeling better. I really wouldn’t doubt that some of the anxiety is your hormones, but it can’t hurt to check with your doctor as well.

[adenure]

in reply to: Anyone feel better AFTER thyroidectomy? #1176651

I like to check in now and then. I remember how truly freaked out and scared I was- practically on the border of despair at times. I really questioned my sanity, my health, and doubted I’d ever be well again or able to care for my children which was THE WORST feeling in the world. I sat on the couch or in bed watching my husband and my mother in law care for my children, dance with my baby and I longed for that back. My heart rate would go to 120 just walking down the hall to the bathroom and I had panic attacks being alone with my kids or if I took a shower! I had my husband sit in the bathroom with me when I’d shower. The anxiety would make me light headed and I thought I would faint- so I worried about the baby bc of that. It truly, truly sucked. So, I figure, if I can give people in that situation hope that once our thyroid is under control, we get better again and become our old selves once more (at least pretty close to it), then I think it’s something I should do! The ONLY thing that is lacking for me right now is energy, but I DO have enough energy to homeschool my 3 older children and care for my baby everyday. I manage to workout 4-5 days a week for 30 min. of good cardio. I sleep at night (unless the baby wants to nurse, but then I can fall back to sleep pretty good). I get about 7 hours sleep a night- ahhh… yes, that is good!!! So, life DOES get back to normal.

Yes, I started on 100 mcg and then was bumped to 112 mcg. 2 weeks after the bump, my labs showed good numbers, but admittedly, it took 2 months on that dose to FEEL better. But, it did happen. I did still have lingering anxiety and insomnia and headaches for almost 4 months post surgery until my hormones were stable and level for 2 months- so, it takes time and requires some (a lot!) of patience. I will get some “anxiety breathing” when I don’t sleep enough (because I’m worried about something or another), but if I’m on my normal routine and life isn’t too crazy, I sleep good and I feel good.

[adenure]

in reply to: Anyone feel better AFTER thyroidectomy? #1176648

Hi!

I had a TT 7 months ago and I feel much, much better than I did when I was hyperthyroid with Graves. My T3 & T4 were too high and my TSH was .01 when I was hyperthyroid- although my endo. considered my Graves “mild”. That was probably true in comparison to others, but it didn’t feel mild to me! I lost 13 lbs. in a month, tremors, terrible insomnia (3 hours of sleep a night on average), heart rate around 100 (resting) 120 if I walked around, diarrhea, no appetite, terrible anxiety and fear- just bad all around. Methimazole got my levels normal and I felt better, but not great. I had to stop it though bc my live enzymes were 8 times the normal amount. 6 weeks later, I had a TT (that was 7 months ago). I’ve been on Synthroid since day 2 after surgery and am doing well. I was started on 100 mcg for 6 weeks, had labs done and was increased to 112 mcg and have been on that ever since. I’m doing well, my levels are stable, and I feel good! No, not pre- Graves super star great.- hee hee! — but, much better than before. All the above symptoms I mentioned are gone. I am able to lead a fairly normal, healthy, happy life with my family again.

I did take potassium iodine for 7 days pre- op. Nasty stuff, tasted bad- metallic taste in my mouth & in the toilet I don’t remember if it made my heart beat harder as my heart rate was already higher than normal at the time. I had to be off the ATD’s for the 6 weeks leading up to surgery bc of the liver issues I had on them. Fortunately, my levels stayed pretty stable during that time, but I started to get a slightly elevated heart rate and anxiety again a week before surgery- could’ve just been my worries over the surgery though!

In the end, I made the right choice. I am much healthier now than I was before. My favorite things that have disappeared are the anxiety & the insomnia. Heart rate is normal (65ish) and life is good. Again, not perfect- but on my good days (which are more often than not), I’d say I’m 90% my old self. I’ll take it. Hoping it’ll get even better as time goes on, but if it doesn’t, I will be okay as I am now.

[adenure]

in reply to: How much Methimazole is ok when Breastfeeding? #1176633

Hi!

I agree with Shirley. Ask if you can increase the methimazole more slowly- from 5 to 10 and so forth. I was on 5 mg. daily and breastfed my baby at the time. I had to stop the meds. bc my liver enzymes shot up quite a lot (8 times the normal amount), so I had surgery 6 weeks later to remove my thyroid (that was 7 months ago). I breastfed through the whole thing except for a week where I had to wean temporarily (I pumped and dumped) to take the SSKI potassium iodine drops to prepare for surgery. Really stunk, but I was really glad I stuck it out and pumped. I’m still breastfeeding my now 14 month old and all is well.

We are not doctors, however, Dr. Thomas Hale’s specialty is medicines and breastmilk. He has done many studies about infants’ risks with various medications. I’ll post his findings regarding methimazole down below. My endocrinologist and pediatrician both agreed that up to 20 mg. a day of methimazole was safe (with periodic testing of my baby’s TSH- every 3 months or so). Because my liver enzymes had the reaction they did, I never had to go to far on the drug. Also the 5 mg. did level me out.

Here you go: (remember that sometimes a medication is given an “L3” rating simply bc there haven’t been the required number of studies to be given the L2 rating. It isn’t necessarily that it IS an L3, but that further studies are needed for the L2. L3 is still considered safe at a certain dose.)

METHIMAZOLE

Trade Names: Tapazole

Uses: Antithyroid agent

LRC: L3

AAP: Maternal Medication Usually Compatible with Breastfeeding

Methimazole, carbimazole, and propylthiouracil are used to inhibit the secretion of thyroxine. Carbimazole is a prodrug of methimazole and is rapidly converted to methimazole. Milk levels of methimazole depend on maternal dose but appear too low to produce clinical effect. In one study of a patient receiving 2.5 mg methimazole every 12 hours, the milk/serum ratio was 1.16, and the dose per day was calculated at 16-39 µg methimazole. This was equivalent to 7-16% of the maternal dose. In a study of 35 lactating women receiving 5 to 20 mg/day of methimazole, no changes in the infant thyroid function were noted in any infant, even those at higher doses. Further, studies by Lamberg in 11 women, who were treated with the methimazole derivative carbimazole (5-15 mg daily, equal to 3.3 -10 mg methimazole), found all 11 infants had normal thyroid function following maternal treatments. Thus, in small maternal doses, methimazole may also be safe for the nursing mother. In a study of a woman with twins who was receiving up to 30 mg carbimazole daily, the average methimazole concentration in milk was 43 µg/L. The average plasma concentrations in the twin infants were 45 and 52 ng/mL, which is below therapeutic range. Methimazole milk concentrations peaked at 2-4 hours after a carbimazole dose. No changes in thyroid function in these infants were noted. In a large study of over 134 thyrotoxic lactating mothers and their infants. Methimazole therapy was initiated at 10-30 mg/day for one month, and reduced to 5-10 mg/day subsequently. Even at methimazole doses of 20 mg/day, no changes in infant TSH, T4 or T3 were noted in over 12 months of study. The authors conclude that both PTU and methimazole can safely be administered during lactation. However, during the first few months of therapy, monitoring of infant thyroid functioning is recommended.

[adenure]

in reply to: 12 days Post TT…now what? #1176600

Congrats on getting through surgery! I was started on 100 mcg Synthroid as well. My dr. didn’t run labs until 6 weeks post surgery; he said anything before that would be inaccurate (due to our bodies’ own store of thyroid hormone and that it takes about 6-8 weeks for a dose to take effect fully on the blood levels).

At 6 weeks, I was upped to 112 mcg and my levels were good 2 weeks later. Two months after the dose increase, I started to feel better. I had labs again recently (now 7 months post surgery) and my levels are still good on 112 mcg. I had my cholesterol tested as I had read some people’s cholesterol increases on Synthroid, but that is all perfectly good too. I haven’t gained any weight and am doing pretty well. It’s not perfect, not pre- Graves me. I tire more easily, but all in all, I’m doing well.

Surgery was the right choice for me, and I’m grateful to be well again. Sure, I miss the old non-stop energetic me who could go on and on like the Energizer Bunny and work out 2 hours straight and do a 60 min. intense spin class and feel like a super star after teaching and caring for my boys all day… but, maybe I’ll get that back. Then again, maybe not. But, being healthy, being able to care for my family, homeschool, and enjoy my life… THAT is what I truly live for and what matters and that is what I have now.

[adenure]

in reply to: wife of graves disease #1176525

I’m sorry you and your husband are dealing with this. It really does stink. No doubt about it. You can kind of see my “Graves journey” in a nut shell on my signature below.

I chose surgery and am happy that I did. I was scared and nervous about it, but I was very fortunate to have a great surgeon. If your husband chooses surgery, that is my number 1 suggestion: make sure you have a great surgeon who does a lot of thyroidectomies. I wasn’t comfortable with RAI for various reasons, but I know that for many, it works well and people are happy with it. — just like a lot of people are happy with surgery. I think it is an individual decision. I am happy with my choice. My surgery recovery time was probably about a month I’d say (as far as feeling stronger, having my voice back to normal etc). After about 2 weeks, you feel pretty well enough to take on your usual day, but slowly. Getting thyroid replacement hormone therapy right (the dose) takes time. I had one dose change 6 weeks post surgery and am still on that dose now. I’m 7 months post surgery. I didn’t start to feel better though (as far as my Synthroid dose) until about 4 months post surgery. It takes time; it isn’t easy- which I’m constantly reminded of- BUT, I AM much healthier now than I was a year ago and, as long as my meds. are at the right dose, I will never go hyperthyroid again, and that is a wonderful thing.

[adenure]

in reply to: Cytomel and itching #1176546

Hi!
I’m only taking Synthroid, but have considered asking about adding Cytomel bc my free T3 is in the low range of normal. My TSH & free T4 are pretty good, but I’m still a little tired and not feeling my best. How much do you take? Did you experience and hyper symptoms on it? Any input is appreciated.

[adenure]

in reply to: New Labs on Synthroid #1176511

Hi,

Thank you for your responses. Bobbi, I’ve been euthyroid for almost 5 months. To me it seems like forever I guess. I guess it hasn’t been though. IF I added cytomel, due to its short 1/2 life, wouldn’t any hyper type symptoms go away pretty quickly if I were to stop taking it? Say I took it one day or 2 and started to feel those hyper symptoms come back, would they go away once the cytomel was out of my system? Thanks.

[adenure]

in reply to: Levothyroxine in morning or before bed? #1176507

I had a dose change (increase) to 112 mcg from my 100 mcg. My numbers reflected normal hormone levels 2 weeks later, but it took 2 months for me to feel better on it. I think it takes about 6-8 weeks for Synthroid to build up in your system fully.

[adenure]

in reply to: Levothyroxine in morning or before bed? #1176504

I think that as long as you take it on an empty stomach, 4 hours apart from any iron or calcium supplements and wait to eat for 30 min. to an hour after- it should be fine. I take my Synthroid (112 mcg) first thing in the morning and wait 45 min. to 2 hours to eat- depends on the day and how busy the morning is! I haven’t had any problems with absorption (that I know of) doing it that way. My labs have been normal and stable for the 7 months that I’ve been on Synthroid. I just got labs done this past weekend, so I guess I’ll see if all still looks well. I feel well enough I think. It’s not perfect pre- Graves me, but I’m much healthier now than when I was sick, that is for certain!

You could always try a month or 2 in the AM, get labs done, and see how you feel. If it doesn’t seem to be working that way, you could try the evening. But, I think that, in general, if we take Synthroid as prescribed with our timing, regardless of time of day, it should work either way. I think sufficient iron is important for absorption so I take a multi Vitamin, but I take that in the evening, plenty far away from Synthroid.

[adenure]

in reply to: Can’t get into new endo til mid-March–now what??! #1176406

I agree with Kimberly. When I was referred to the endo., I had to wait for a month or so I think it was. I was hyper and my primary wouldn’t prescribe the ATD’s. My labs showed hyper, but bc she thought it might be postpartum thyroiditis instead of Graves (which it wasn’t), she wouldn’t prescribe the meds. I called everyday a few times a day for an appointment, but no luck. I was really sick, so I told my primary I was losing a pound a day (which was true), not able to eat- food made me sick, gag, and my milk supply (I was breastfeeding) wasn’t as good, elevated heart rate, diarrhea. Basically I said, “I NEED to get in there!” And, I asked for an emergency referral. The endocrinologist called that day and saw me within the week. So, I would definitely try that route. It could work.

[adenure]

in reply to: Could This Be True? #1176351

I don’t know about the insurance money, but I think it IS easier for a doctor to manage a hypothyroid patient than a hyperthyroid patient. Way less difficult and dangerous. Even with remission, hyperthyroidism can come back. One of my friends has had Graves for 10 years and was on PTU and methimazole off and on during that time. She had surgery scheduled 3 different times, but always canceled. Barely a month ago she ended up in the hospital with all the symptoms of a thyroid storm. They kept her overnight and (reluctantly) sent her home on a high dose of beta blockers. She just had a thyroidectomy on Tuesday. She knew she was hyper, but didn’t take care of herself and landed in the ER. Fortunately she was okay and she finally got the surgery done! Lucky girl. But, I think hyperthyroidism can be like a ticking time bomb.

Where if a person is hypo, it takes some seriously extreme hypothyroidism to cause a person major health issues. Also, Synthroid doesn’t have any possibilities of severe side effects that I know of (like ATD’s do to the liver and blood cell count). I think that’s why some doctors push for RAI or surgery. As far as preferring ATD’s over the more definitive solutions, I don’t know the reasoning behind that except maybe patients’ preferences or in hopes of remission. It does seem like people tend to have recurrences of hyperthyroidism though even if they’ve had long bouts of remission. I don’t know the numbers, but it seems that way.

[adenure]

in reply to: Singers and TT #1176279

Hi,

I’m not a singer, but I do like to sing at church. I’m 6 months post surgery and I have the same range that I did before surgery. My voice was weak, tired a lot, and raspy for a good 3 weeks after surgery. It felt like I would talk from the upper range of my voice and it would be a strain. It was very nerve wracking as I thought I’d never talk normally or have the power behind my voice that I once had, but I do now. I never lost my voice at any point. I was very fortunate to have an amazing surgeon; that really is key.

Through recurrent laryngeal nerve stimulation, a surgeon can more easily locate your RLN and take care to avoid injury. I read that, among very experienced surgeons, the use of the stimulator wasn’t necessarily seen as important. So, your surgeon may or may not use it. My mom (who worked in the OR for 15 or 20 years) wanted me to make sure my surgeon used the RLN stimulator. In the end, she got me a surgery date with a surgeon she worked with and I didn’t worry about it so much anymore. I was very fortunate to have that connection. Finding the best surgeon with a lot of experience in performing thyroidectomies is super important.

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