High Blood Pressure - Methimazole? Help !

Hi Jay,

I'm sorry you're having problems right now; I was hoping you were going to report all better.  I don't know if you read the post I did last week, I did TT; it was very successful.  As for BP, I always know when I'm sick because my BP goes up.  The nurse will comment that my BP is higher than normal and I'll respond, no surprise, I'm in pain or I'm not well, it's always been that way for me.  I hope you feel better/get your BP under control sooon.

Thank you, Sophie. I'm happy you're feeling better!  How was the surgery? My main concern for myself is the anesthesia. After 3 surgeries and tachycardia upon awakening, requiring beta blockers and monitoring, I'm afraid to do another. Surgery also sets me back with visual migraines. 

Thanks for your info about BP going up during illness. Does it jump much higher?  I went up about 40 pts. I've been monitoring at home. I also have chills and freezing, trembling cold. I imagine that doesn't help. 

Hi Sophie

I'd really consider RAI but I have both antibodies. And even though my official diagnosis is hot nodule after the uptake result showing a normal thyroid other than one hyper nodule, I worry about GO. Who knows what the antibodies could do after RAI. I've read in GD they can cause GO after RAI. If I could get a doctor @ Mt. Sinai in NYC, they do TT or nodule removal under local and sedation, which I'd do. You're in and out in a few hours. But they don't accept my insurance. My PCP and second Endo say to ignore the antibodies. There is a small (15%) percent of toxic nodule patients who develop antibodies, but I'm still concerned. 

How are you feeling? Is it difficult to get your Levo dose right or do you feel back to normal? This is a rocky road, isn't it?  

hugs

Jaye 

Hi Jaye,

I never had the antibodies, just the toxic nodules so I understand your concern.  I think you need to meet with your new endo next week and see what he has to say. I know it's hard but you may have to put your faith in a dr you trust.  You can't go on how you are now. (This is being said gently)..your fears are real but your fears may be magnified because of the hyperthyroidism.  After surgery I was more relaxed and noticed my fears of everything were gone.  Being hyper made me afraid of everything, and honestly I mean EVERYTHING.

I am on synthroid and actually saw my endo yesterday.  It took one adjustment to get the level to where it should be and have had 2 good blood tests since.  My endo doesn't want to do another blood test for another 3 months (unless i start having symptoms) and will see me again in 6 months.  Getting the dose right was actually easier than I thought (of course maybe I was just lucky).

Talk to your endo and see what you want to do.  Be careful what you're reading, I found the more I read the greater the fear.  I made my own decision, I didn't go with what the endo wanted, but I knew I had to do something.  I hope you can get this worked out soon 

hugs

Sophieanne

Thanks, Sophie :-)  I'll keep you posted on my next appt and what the Endo says. The fear is horrible. I know what you're saying. Sometimes fear of "nothing" is overwhelming. I'm so up and down I wonder if the nodule inconsistently goes hyper because some days I'm fine. This is what I'd like the endo to tell me. I wish the nodule would just burn out. It's gotten so much smaller since on Methimazole, almost gone, which is encouraging. My pcp thought I originally had Hashi's. Out of 3 drs, none totally agree, so hopefully number 4 will be the magic number. 

This is what I'd like to tell the endo ... not me lol  typos 

Hi Sophie

Update:

Saw the new Endo today. I have to cut the biotin for a week and have TSH/T3/T4 blood test to see where I'm at.

It was a good visit and encouraging. My nodules are smaller and he agreed with the others that I'm sub-clinical. He doesn't think I should be on meds. He'd rather monitor my levels. If my TSH and T's are normal, even if TSH is low, I'll cut the Methimazole and monitor, as I'm not symptomatic.

Because I have both antibodies, he and the other Endo are not sure if it's just a hot nodule or maybe Hashi's too. If it is, the nodule will burn out. Personally, I think the horrid bout of labrynthitis inflamed my thyroid and caused my problems. Hopefully, time will heal. He definitely doesn't recommend any drastic treatment at this point like surgery or RAI. Just monitor for now. 

Interesting, he's the second Endo to tell me anyone can have antibodies. Even someone without thyroid issues. So to me, that points to hot nodule, I would think. He said if I go off Methimazole and my numbers go way off, then it's definitely the hot nodule because if it's autoimmune I should go into some kind of remission after a year on Methimazole, even if the remission is not permanent. So confusing. When I went off Methimazole last summer for 6 weeks my TSH dove and T4 rose a bit so I'm inclined to think it's the nodule and I'll need to stay on low dose meds my entire life. But for sure, I'm going to take the meds only 3 times a week if I need them, as they make me feel tired and hypo.

So I'm a complicated case, per both Endos, but I really like this one. He took a long time explaining things and how the thyroid works and can be affected, etc. 

Hope you're well :-)

hugs

Jaye 

Hi Jaye,

Thanks for your note..i've been thinking about you.

You are an interesting little anomoly .  Your new endo sounds great.  He said exactly what my endo said before she found out that I don't have antibodies.  My endo said that so many people have the antibodies and just don't know it (would only find out if they had a thyroid issue), which is why having the scan was so important in my case.  And i've heard that after a year on methamazole (with the antibodies)  either it goes into remission (temp or perm, no guarantee of which) or you have to stay on the med for life or have surgery/RAI.  In my case if the methamazlole didn't work, the best choice was permanent removal of the thyroid because it would never be able to heal (like someone with the antibodies). It is confusing, but you appear to be in good hands and that's all that's important.

You need to ask if you do have Hashi if the problem could get worse over time and what should you do to try and prevent it (if that's possible).  Let me know when you get your test results.  

I thought you stopped taking Biotin after the news about it came out.  Change of heart???

*Big hugs*

Hi Sophie

Good to hear you're well!  I did stop biotin but only for TSH blood work, then started up again. Biotin doesn't have any effect on the thyroid, only the test because the TSH test is biotin based, so it doesn't pick up any TSH readings as Biotin in your body blocks TSH reading falsely. But it's safe to take. Without Biotin my TSH reading went from zero to .25. 

I'm happy to hear yet another Endo agrees on the antibodies. My TPO dropped dramatically last test and my TSI dropped a good amount, so hopefully I'm on the mend. My PCP thought I had Hashi's and that it takes a while for antibodies to drop. 

I hope to have blood results by end of next week or early following week. I'll let you know how I make out. I don't think they're sure if I really have Hashi's or if it's just the hot nodule. They call me complicated :-) There's a lot they don't know, unfortunately. 

How are you doing on Levo? Any side effects?  I had been on ArmourThyroid when I was hypothyroid with no side effects at all. I asked this Endo, if I did do RAI in the future, would he give me Armour. He said no, Levo bc T3 is hard to regulate with Armour. I said no to Levo as I've heard many negatives and said I'd only do it if he promised to give me Armour replacement. He smiled and agreed. So in your experience, is Levo acceptable?  Working good for you with no side effects? I might be open to RAI in the future if this doesn't resolve on its own or with Methimazole. 

huggies 

Jaye 

Hi Jaye,

I laugh when i read about your conversations with your Endo,you make comments/statements that I would make   My understanding about Hashi (from my endo and from a friend who has it), is that whether it is active or not, Hashi will show up on the antibody test.  You also have to be monitored because it can go from Hyper to Hypo and back again, so where you might be good for periods of time you can go back and forth.  I don't think the sore throat would trigger it, I think it just is what it is. Maybe coincidence they both happened at the same time. I think you might want answers to something that just doesn't have one

I'm on Synthroid versus the generic Levo.  It costs a little more but well worth it.  I take 88 mcg per day.  I tried Levo and didn't do well.  My acting endo explained that Synthroid  as opposed to the generic levo would be better if taken at 50 mcg as there is no dye in the pill and people such as myself (and probably you) react poorly to the dye in the various doses (eg. there is an 88 pill but because it has dye I don't do well - so I take 2 50's 5 days a week and 1 50 twice a week) to even out to approx 88 per day.  I thought it was crazy but it really does make a difference.  My endo also told me i could take it at night (4 hours after eating) or first thing in the morning (an hour before eating) whichever worked best for me. Mornings work best.  If I eat late, then it's a late night and it's easy just taking it first thing.  I have had no problem at all since starting the synthroid and i don't see my endo again until June.

My endo said the same thing about Armour being hard to regulate.  Right now, I'm happy where I'm at, blood tests have been really good, so i'm not going to mess with what's broken.  The mindset of having to take it everyday forever was a bit much to grasp at first but as all my anxiety left (a result of the surgery) to me it's just like taking another vitamin.

Hopefully you won't have to do anything but be open to all possibilities - everyone reacts differently to each drug (if i listened to everyone else i would still be sick and not trying anything) and your endo will work with you to get you on what's best.  Between the scan and the antibody test they should be able to figure out what's going on with you.  As my endo told me, whether you're in a hypo, hyper or normal state the antibody is still going to show positive if you have it. It won't not show up if you're doing well...if it's there, it's not going to hide.  I'll be waiting to hear your results. Write me anytime, I always enjoy hearing from you and writing back and forth.

hugs

Sophieanne

Hi Cecelo

Thanks for the reply.  My high is systolic. I seem to be yoyoing. I know I'm stressed now over it so I'm probably raising my own BP.  The other night it was 149/66, but earlier it had been 161/80. My normal stress high is no more than about 140/78 and I'm usually 128 - 130 / 70, so this is scary. And the more I worry, the higher it will be. So I started low dose diuretic and I feel better. High dose Methimazole made me feel so sick: incredible exhaustion and awful depression. On low dose, I don't have those issues, thank goodness, but I wouldn't be surprised if it raised my BP. Plus I'm on Augmenten for sinus, which might contribute. My TSH is taking forever to lift to normal. It was .25 which was close to low normal range of .35 but foolishly stopped med and TSH dove to .09. Back on med in 2 weeks it was .11.  I'm feeling it should be on the rise now, hopefully. Seeing new Endo on Jan. 9th. He's the one who told my daughter and I to stop Biotin prior to blood work as it interferes with TSH reading. I hope you're doing well.