# Questions on Methimazole and treatment



## VFRgrl (Feb 15, 2015)

My latest bloodwork/labs are in sig. I'm low on Vit D. I feel worse than I have in months- even when I was pretty hyper. Lethargy, extreme depression; anxiety; new pain in feet and hands. I'm still on methimazole. why do I feel so wretched??

My surgeon thinks I have Graves disease- if so then I can go into remission on Methimazole- right? I dont' have to have surgery?

I am unsure how to proceed forward as I reported my current symptoms to doctor and they said "you are fine, your bloodwork looks fine, everything is fine, you are still hyper so you may need to increase the methimazole (?!?!) ' even though my liver values are above normal!? I'm beyond terrified because my little sister had a liver transplant so I know what liver disease is.

Tired; scared;

Lori


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## Octavia (Aug 1, 2011)

You have a 5+ centimeter nodule? Without a doubt, you need surgery. Methimazole is a temporary solution at best, and it won't get rid of that huge nodule.


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## Andros (Aug 26, 2009)

It has been recommended that you have TT. You may be wise to follow that advice. I have never known any one to go into permanent remission and I have been around the boards for many many years.

Also, your liver can't take it...........................nor your heart, muscles and every other thing in your body.

You may benefit from rethinking your position.

Sending caring hugs your way,


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## webster2 (May 19, 2011)

A vitamin D deficiency can make you feel wretched but it sounds like you have a bunch of other things going on too. Methimazole is not a long term solution. Taking it can be really hard on your body.

I have Graves. My endo figures I have had it since my first thyroid surgery over 20 years ago. I have osteoporosis, probably from being undiagnosed hyper for 20 years. I am 6'1 and do not fit the body type for people that generally have osteoporosis.I am also very fortunate to have minimal eye involvement. I was really sick in the last 2 years before the surgery with the weirdest stuff imaginable. Looking back, I think my body was struggling. My mind was a mess too. A thyroid storm is no picnic but it is what brought about my diagnosis, so I am grateful for that but wouldn't wish it on anyone.

I also had a 5 cm (benign) nodule. It was uncomfortable causing a lot of ear pain and difficulty swallowing. I sounded very hoarse most of the time.

Having the rest of my thyroid out was one of the best decisions ever. My body and whole life were at the mercy of a malfunctioning gland. I came very close to losing my job and my marriage. I can't tell you what to do. I am a very happy healthy person that ran 3 miles this morning. It used to be a major effort to get out of bed. The surgery is not too bad. Good luck with whatever you decide.


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## Lovlkn (Dec 20, 2009)

Lori,



> My surgeon thinks I have Graves disease- if so then I can go into remission on Methimazole- right? I dont' have to have surgery?


Graves remission is RARE and even if you reach a remission, it is not a cure and usually temporary.

There is alot that affects "remission" and having a Nodule as large as yours is will certainly affect your thyroid hormone movement and will not be able to control.

Having fear about surgery is normal. I was petrified and did everything I could to avoid it. I gave up after 4.5 years being on Tapazole and can tell you - I wish I had done it sooner. My life today is fantastic compared to bein ghyper and on Tapazole. Life is good and Tapazole was not my cure and likely not yours.

Please consider the suggestion for a total thyroid removal as suggested by your doctors.

Your surgeon should do 4-5 per week to be considered "experienced".


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## VFRgrl (Feb 15, 2015)

The surgeon is an endocrine surgeon from John Hopkins. Pretty much all she does is thyroid surgery.

I'm not scared about the surgery. If it were just surgery I'd have it done today. Its the after surgery and the medication- THAT is what scares me. They can't even get it straight now. Saying there is no reason I should feel poorly because my bloodwork is normal. I don't WANT to go on more Methimazole! THAT IS WHAT THE DOCTOR IS SAYING I NEED!! They won't do the surgery until JUNE! That is how long they think it will take for me NOT to be HYPER???

My sister had a liver transplant. Although, the good news is my nutritionist/personal trainer looked at my bloodwork and thinks the elevated levels are most likely from the heavy weight lifting Ive been doing as you aren't supposed to lift 12 hours before a blood test- because other liver levels are fine. She also said my bloodwork shows I've been overtraining- so I'm off strenuous exercise for a week and we have to reevaluate moving forward.

I honestly could barely get out of bed this morning and I hurt all over my body more than I ever have even after full body weight circuit (I didn't exercise yesterday at all). If this is hyperthyroid- I think I'll be dead when my thyroid comes out and I'm hypo. THAT is what I'm scared about. the surgery? I trust my surgeon and the facility. My Dad had prostate cancer surgery there. Its dealing with medicating after- that is what scares me.


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## joplin1975 (Jul 21, 2011)

Eh, I'm not dismissing your concerns but there's a big difference -- in my mind -- between feeling crappy for a couple of months and feeling crappy long term. I would never, ever say that you won't ever have crappy days after the surgery. You very well might have bad days, weeks, or even months. But that's a short term issue. Long term, your quality of life will be significantly better (and, btw, your workouts will be SO much better and you will be SO much more muscle mass once your thyroid hormones are regulated), so you have to look beyond the short term.


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## jenny v (May 6, 2012)

To me, it sounds like your doc is basing things off of your TSH, which is so wrong. Your Frees are indicating hypo (they are about to drop out of their ranges) and he should be reducing or taking you off of methimazole now, not increasing or maintaining.

I say book the surgery and start finding a new doc now who knows more about thyroids and can better manage your care after surgery. Where are you located? Posters can pm you with good doc names if we know approximately where you are.


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## Lovlkn (Dec 20, 2009)

> Surgical Consult April 2,2015: Recommending TT
> 
> 04/02/2015:
> 
> ...


Current labs show you are hypo based on FT-4 and FT-3. You need a dose reduction of the methimazole 3X a day because you are hypo , yet your TSH is showing hyper which means they are dosing you off TSH which can lag up to 6 weeks.

Call your doctor and INSIST they lower your dose and retest you in 4 weeks. I personally would ask for at lest a 50% reduction and retest FT-4 and FT-3 in 3 weeks. The absolutely last thing you want to do is go into surgery hypo - bottom or below range hypo.

All your symptoms point to being hypo. Your tests point to you being hypo - other than TSH which is more diagnostic, yet many doctors , even those at Johns Hopkins are using incorrectly.

Learn to stand up for yourself now if you ever expect to feel well - sad but true fact when is comes to thyroid disease.

As far as dosing replacement post TT. Its alot easier because you will not have that big nodule messing up thyroid hormone release from your thyroid. We can help you post TT with what to ask for and hold your hand while you get into a good zone. I had to see 5 different doctors before I found one willing to dose my replacement med's based on Free T-4 and Free T-3 only and ignore TSH.


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## VFRgrl (Feb 15, 2015)

Update: I called the endocrinologist's office. AGAIN. I called yesterday about it and Monday about it. I told the nurse I need to adjust my dosing. I fell asleep driving to work this morning. After 9 hours of sleep last night. My hair is falling out again- a lot more than before. I have no appetite. My trainer/nutritionist is upset because I'm eating <900 calories/day because I have to force myself to eat and I'm nauseous.

The nurse at the endo said they will only discuss medication changes with an appointment. the earliest they have is 9:15 on FRIDAY. She said "the doctor says your thyroid levels are improving".

Thanks lady.

I'm almost tempted to decrease my meds on my own. I have until June 10th (tentative surgery date) if my levels go back up. I am literally barely able to function.

I guess I'm shocked that the endocrinology department at Johns Hopkins is basing my bloodwork results on TSH.


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## VFRgrl (Feb 15, 2015)

Forgot to say: I'm in Maryland in the DC metro area. Preference is Gaithersburg, MD/Rockville, MD I've gotten lots of recommendations- but 1 isn't taking new patients and 2 others are not in my insurance plan.

Getting in as a new patient to the endo's around here has months long lists. I have an appointment at the end of the month with another endo that I made months ago (January) so we will see if she is any better. I doubt it based on the interactions I've had with her staff.


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## Andros (Aug 26, 2009)

That is correct; you must be stabilized for surgery so you don't dump during the surgery. Ask them to explain that better to you.

Hugs,


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## webster2 (May 19, 2011)

Oh my goodness, that is so scary that you fell asleep while driving; be sure to mention that. Also, do not mention that you have found info on the Internet. For some reason, doctors don't seem to like that. I used to say I got my info from my support group, which is what this board was for me.

Is the endocrine surgeon the one that will manage your treatment after surgery? I think Johns Hopkins is a top notch institution to have surgery.

Being your own advocate is the best thing you can do. I recall that you have science background, that should help. I had to negotiate with my endo (who might be a TSH worshipper) about dosing to include FT3 and FT4. I had facts to back up my statements and he said that he couldn't disagree with me. We have developed a very nice working relationship. I feel like a partner in my care.

I am glad that you have input from your trainer. It sounds like she gave you some valuable info.

I can see from your lab results that you are not feeling well. Before I had surgery, I was on 45 mg of methimazole (15 3 times a day) along with a beta blocker. I felt like crap most of the time on it. I think that ATD medication does not make you feel better , it may work on the thyroid but the side effects are not so wonderful. Hang in there, it really does get better!


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## Lovlkn (Dec 20, 2009)

> I guess I'm shocked that the endocrinology department at Johns Hopkins is basing my bloodwork results on TSH.


I'm not.

Most - ALL endo's I have dealt with only dose by TSH. It must be in their training and since they are not living the thyroid disease they only treat by what they have been taught. It's a miracle we survive thyroid disease based on who treats us.

Since you just saw your doctor - they should have the decency to review the record and call you.

I'm not very far from Duke and I would not want to go there for thyroid issues. It's a crap shoot and finding a needle in a haystack when looking for someone to properly replace you. It does happen sooner or later so do not give up hope.

As far as your current situation - You are clearly being over medicated and you are having a reaction to being hypo. I looked again at your signature - maybe 20mg split during the day is the right dose and not 1/2 like I suggested earlier to keep you from going more hypo. The only thing you can do is try and re lab 4 weeks after the change.


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## VFRgrl (Feb 15, 2015)

So this is how this all happened. I had my consult at Hopkins on Thursday. She wanted more blood work so I had blood drawn. I told her I thought and felt my levels were low. I didn't feel too bad. I worked out with weights Friday and ran 2 days of a dog event.I was tired and no appetite,but o.k I hit a wall Sunday night. I emailed Hopkins and said I'm really sick what are me levels.Monday morning the endocrinologist PA emailed me and said my TSH is a little low but everything else is normal so I'm not sick because of my thyroid. I asked for actual numbers and was shocked to see them. The surgical endo's PA said I need to talk to the endocrinologist and get my methimazole INCREASE D. I called the endocrinologist Monday and said I need to discuss my meds and I also feel very bad. No response,I called back today and got the no med adjusted unless appointment. We will see what he has to say to my face. I'm already frustrated and upset because now I feel like I can't trust any doctors. The endocrinologist surgeon at Hopkins doesn't dose me after. She likes my current endocrinologist and wants me to work with him post surgery.I was going to give him another chance. I am just so scared and upset and feel like crap I don't even have enough energy to deal.


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## VFRgrl (Feb 15, 2015)

UPDATE:

Actively looking for a new endocrinologist:

I went to my endo. He said- yes, we have to reduce your dose to 15mg once a day of methimazole EVEN THOUGH YOU ARE HYPERTHYROID still. I said "I'm not, my symptoms say I am not and according to the 2012 American Thyroid Association guidelines- patients on antithyroid meds shouldn't be dosed by TSh because it takes weeks to months for TSH to normalize. We need to go by my free T4 which is low/normal but Low for me".

KNOW WHAT HE SAID?

You are subnormal TSH and guidelines and ranges don't matter because the machine is calibrated.

WHAT? I was shocked into silence. That makes no sense medically OR scientifically.

Then later he says I need to watch what I eat because I'm still very overweight (no shit Sherlock; but when I mentioned initially my concerns about weight gain as a side effect of surgery- he said I can't base my decision on that).

I said "I'm working with a nutritionist- but to be honest I am eating the same as I was when I was hyperthyroid and I'm not gaining" (keep in mind he has NO idea what I eat- I am currently working with a nutritionist and have been, She actually thinks I was eating too little and made myself worse but that is another story).

He said- well you are still hyperthyroid so you are burning it off. I was like "how with a fT3 of 2.4 am I hyperthyroid- that controls my metabolism". He said "your TSH is low, so you are hyperthyroid". I said "please explain to me now how TSH affects my metabolism". He was like it directly affect your thyroid hormone levels.. I said "there is a lag In time for TSH levels to normalize based on thyroid levels so I doubt very much I'm hyperthyroid". He says "well, you are and you need surgery now so find a surgeon who will do it sooner" and walked out.

So now on 15mg once a day of methimazole (though I'm wondering if I should still dose 5mg 3x a day due to short 1/2 life?)


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## joplin1975 (Jul 21, 2011)

> You are subnormal TSH and guidelines and ranges don't matter because the machine is calibrated.


I don't know what that even MEANS??


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## VFRgrl (Feb 15, 2015)

All it means is that each machine that tests your blood is calibrated- meaning it is tested/adjusted to make sure the readings it gives you is accurate. It has NOTHING to do with "recommended ranges". I calibrate instruments at work- it just means my instrument measures to a certified standard- that's all. That my machine measures a range verified by testing a certified material.

The example I gave him is from the published ATA/AACE guidelines.

"CLINICAL PRACTICE GUIDELINES FOR HYPOTHYROIDISM IN ADULTS: COSPONSORED BY THE AMERICAN ASSOCIATION OF CLINICAL ENDOCRINOLOGISTS AND THE AMERICAN THYROID ASSOCIATION"

QUOTE (Page 999):* "A subnormal assessment of serum free T4 serves to establish a diagnosis of hypothyroidism, whether primary, in which serum TSH is elevated,or central, in which serum TSH is NORMAL OR LOW. As assessment of serum free T4 is the PRIMARY test for detecting hypothyroidism in antithyroid drug-treated or surgical or radioiodine-ablated patients with previous hyperthyroidism in whom serum TSH may remain low for many weeks to months"*

*AND: based on those SAME guidelines; a lower limit of TSH at 0.4 was suggested. Not the 0.5 from the lab who ran my test. So I'm BARELY below normal.*

*he completely blew me off.*


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## joplin1975 (Jul 21, 2011)

Whoo boy...you really, really need to get in with another doctor (which, I know, you already know...).


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## Octavia (Aug 1, 2011)

Sounds like this guy is in over his head.


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## VFRgrl (Feb 15, 2015)

Octavia said:


> Sounds like this guy is in over his head.


Well..he is a well-respected; known doctor with lots of 'awards' and I got his name from a Thyroid group. So he shouldn't be. Between the PA from Hopkins (who I sent these guidelines and said "FYI" so you know) and my endocrinologists- I've lost my faith in doctors  THIS IS WHY I'm terrified to get my thyroid out and be at the mercy of these doctors to dose me on something they CLEARLy do not understand! If I was on replacement meds- with the labs I have- and they decreased or didn't increase my dose- I'd be getting sicker and sicker and sicker with no thyroid!

I have an appointment next Wednesday with my primary care Dr. to talk things over. The next step is going to have to be to try an endocrinologist out of my insurance network  Its worth it but I was hoping not to resort to that


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## webster2 (May 19, 2011)

Wow, I can understand your frustration and fear. Start talking to your friends and family, some of them must have thyroid issues. Find out if they see "a human' as my ENT referred to my endo. I am a librarian in a rural library. When patrons found out I had a thyroid problem, so many of them came forward with their story. Thyroid issues seem to be rampant, finding a good doctor to help navigate it is tricky but entirely possible.


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## VFRgrl (Feb 15, 2015)

UPDATE: My surgeon called me yesterday and said "I understand your endocrinologist lowered your dose of methimazole because you COMPLAINED ABOUT YOUR SYMPTOMS; TO BE CLEAR: Your bloodwork needs to be NORMAL for the surgery to happen. Regardless of your SYMPTOMS". I said I felt REALLY awful and was falling asleep driving and that's NOT O.K.!

She was pretty nasty about the dose reduction in the Methimazole from 30mg to 15mg. I was like my surgery isn't until JUNE I think I can get it straight by then. She was like "well its a balance". and I was like "well I don't want to be dead or have killed someone on the road from falling asleep now do I?".

Good news: My (really good) primary care Dr. said if I can't find an endo I like SOON; he will work with me on medicating after surgery so I don't need to deal with doctor shopping anymore.

Also good news: I have an appointment TODAY from a cancellation with a recommended endocrinologist IN my network. So, if he doesn't pan out I'm going with my primary doc.

BAD NEWS: I'm trending hyper on the 15mg methimazole once a day after FINALLY feeling yesterday like I was actually a human being. I had some insomnia last night and a slightly elevated resting HR before bed 

I thought I was going to die on Saturday (the day I started the dose reduction). I almost went to the ER. I literally slept all day. Barely had enough energy to read a book and eat food. It was HORRIBLE.

So, off to the new endocrinologist today (hurray) if he doesn't work out I have a plan B


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## webster2 (May 19, 2011)

Glad to hear from you and that there is a bit of good news in there. Hang in there!


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## VFRgrl (Feb 15, 2015)

UPDATE from new endo appointment today; I do NOT have Graves or Hashimotos disease. He did a thyroid ultrasound in the office and said none of the features of my thyroid nodules are indicative of autoimmune thyroid. I just have toxic nodules.
He went over my options (TT; Partial but lots of tests need to be run because the side that is NOT huge has multiple vascular nodules which may be over active), I will never go into any remission on anti thyroid drugs. The over active nodules have to come up. We came to an agreement on a complete.

We upped my methimazole to 20mg because I DO feel hyper today, recheck levels in 4 weeks.

He was very clear and explained the post surgery treatment plan. He said almost none of his patients have serious weight issues after surgery because he starts with replacement therapy the day after surgery. He also said will add in T3 if needed.

All in all it went well.


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## Octavia (Aug 1, 2011)

Wow! Sounds like this guy is a keeper!

(I agree 1000% with your decision to go with a complete thyroidectomy. Smart girl, you are!)


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## webster2 (May 19, 2011)

Very good news! Good doctor too.


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