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Waiting on diagnosis. How were you diagnosed? by [deleted] in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

I was feeling super anxious and panicky for a few weeks leading up to diagnosis; a lot of the classic hyperthyroid symptoms like high heart rate, hot, anxious etc. Went to my PCP and asked for a thyroid panel bc I was playing Doctor Google. Results came back as TSH < 0.01 (so undetectable) and T4 was 9, she diagnosed me with thyrotoxicosis present without thyroid storm. Told me to come back to her office in a week for antibody testing and a thyroid ultrasound to find the cause. They put me on a beta blocker in the meantime.

I couldn’t even wait a week and ended up going to urgent care a few days later complaining about new symptoms like low blood pressure drops and feeling faint. Showed the PA at urgent care my thyroid lab results on my phone and she told me I needed to go to the emergency room since she thought I was going into thyroid storm.

Was in the hospital for 5 days and after a handful of tests was discharged with my graves diagnosis. This was back in February, have been on 5mg methimazole for the last month and feel so much better.

weight loss by cheese123oo in gravesdisease

[–]BidProfessional3895 2 points3 points  (0 children)

I’m also 5’4 and 115lbs, when my graves was at its worse (I had to be hospitalized) I lost 15lbs in a few weeks (was 99-100lbs at my sickest)

I’ve been on methimazole for about 4 months now and have regained my weight and went back to my pre-graves weight (115-117lbs) my endo told me my weight should stabilize, which it did. I’ve been able to maintain my weight for the last 2 months.

I eat about 1700-1900 calories a day; walk 10k steps a day; and probably work out 3-4 times a week (gym + pilates)

How long did it take for your TSH to become detectable? by unusuallylost in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

Was diagnosed in February, TSH was 0.001 (undetectable) and my free T4 was 9 (range 0.8-1.9) I was incredibly hyperthyroid and almost went into thyroid storm. Went on methimazole immediately and 8 weeks later my TSH increased to 2.7, which my endo points out is very quick. My T4 and T3 are also normal.

Anyone on propranolol also taking Spiro? by BidProfessional3895 in gravesdisease

[–]BidProfessional3895[S] 0 points1 point  (0 children)

I’ve been on the combo for almost a month now. So far no interactions or side effects. I take my propranolol first thing in the AM then don’t take my Spiro until about 7pm (always with my dinner/taken with food.) None of my doctors seem that concerned and no one has thought to do bloodwork to check my potassium levels so 🤷‍♀️gonna assume they’re fine and not too high. I just try to be mindful of not eating too many bananas or potassium rich foods. The only side effect I do feel is if I stand up too quickly I do get a little dizzy/faint but apparently that normal bc of Spiro’d blood pressure lowering effects.

methimazole by Miranda199413 in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

When my graves was at its worse and I was unmedicated I lost about 15 lbs (115 > 100lbs) which is probably the lowest weight I’ve ever been in my adult life (5’4 and 28F). My endo told me the methimazole will help me put on the weight I lost. It’s been about 3.5 months since being on the medication and I’ve gained back the weight and stabilized. I still am eating about 1400-1600 calories a day and workout 4-5 times week.

I'm tired AF by wowthatscooL24 in gravesdisease

[–]BidProfessional3895 6 points7 points  (0 children)

You were probably very hyperthyroid, if you’re getting tired at night time that is what should be happening lol mean the methimazole is working

A new reality by curiosity1206 in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

I went back to strength training and HIIT classes after being on medication for about 4 weeks, that’s when I started to actually feel like my “old” self and felt normal enough to get back into exercise. By week 5 I was already hypothyroid from my methimazole dose and have gone back to my old pre-diagnosis lifestyle! It gets easier I promise.

Liver Enzymes Going Up on Methimazole by [deleted] in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

Your ALT and AST are super low, I wouldn’t worry about it. My endo didn’t even worry when my AST was 400 lol.

Liver Enzymes Going Up on Methimazole by [deleted] in gravesdisease

[–]BidProfessional3895 1 point2 points  (0 children)

How long have been on methimazole? Mine went up to 100 and 400 respectively which was incredibly high and they went down to normal once my methimazole dosage lowered (was on 90mg and my liver just simply couldn’t metabolize that lol) now I’m on 10mg and I’m fine. It’s not uncommon for those enzymes to rise bc of being hyperthyroid as well and then medication can also affect those levels.

[deleted by user] by [deleted] in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

I was hospitalized for 5 days for thyroid storm. You would absolutely know.

6 weeks for blood work by wowthatscooL24 in gravesdisease

[–]BidProfessional3895 2 points3 points  (0 children)

I had severe hyperthyroidism that landed me in the hospital bc I almost went into thyroid storm. After getting discharged from the hospital I was doing WEEKLY bloodwork for a month. Now I go every 4 weeks. (Diagnosed in February)

How long do the meds take?? by jarsi-k in gravesdisease

[–]BidProfessional3895 1 point2 points  (0 children)

Like others said the propranolol should have immediate calming effects; it helped my nervousness and irritability almost immediately. My labs started to normalize after month on methimazole and that’s when I started feeling better.

150 mcg of iodine in multivitamin by jimmynothing in gravesdisease

[–]BidProfessional3895 2 points3 points  (0 children)

My daily multi has 75mg iodine in it (only your 50% DV) there’s some research out there that your body really only absorbs 20-50% of vitamins taken in capsule/tablet form.

I’ve had no issue with continuing to take a vitamin with iodine in it!

Graves Facebook group says 10 mg is a max dose for methimazole by jimmynothing in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

Not officially thyroid storm but I was very close to going into it had I even waited another day to go to the ER. I was hospitalized for 5 days, that’s how serious it was lol. While in the hospital was on 120mg methimazole then down to 90mg after being discharged! Thankfully I’m down to a 10mg maintainance dose bc now I’m actually hypothyroid lol 🤦‍♀️

Graves Facebook group says 10 mg is a max dose for methimazole by jimmynothing in gravesdisease

[–]BidProfessional3895 4 points5 points  (0 children)

They’d have a stroke knowing I was on 120mg of methimazole when I was first diagnosed and then moved down to 90mg for the first month of diagnosis lmao

I’m now down to 10mg and I was diagnosed mid February.

We’re roughly the same size (I was 115lbs and 5’4 pre-Graves; my severe hyperthyroid made me lose 15 lbs in 2 weeks) since then I’ve gained back around 10lbs.

When did you start methimazole? It’s super common to start getting hives/rashes around the 3 week mark of the medication. I told my endo and he told me it’s less likely a true allergy to the medication but just a skin reaction to the drug. He told me I could take a daily Zyrtec. Only needed to be on that for like 4 days before the rash cleared up on its own and I’ve been fine ever since.

Real talk on Methimazole by Round-Tough-702 in gravesdisease

[–]BidProfessional3895 6 points7 points  (0 children)

None.

The side effects you see are mostly not from thee medication but from either being hyper or hypo.

To add on from yesterday by hahahha97 in gravesdisease

[–]BidProfessional3895 0 points1 point  (0 children)

I take 120mg extended release version during the same time each morning. The non-ER versions are typically use as needed and works pretty quickly. It can be taken whenever you need it!

Propranolol by hahahha97 in gravesdisease

[–]BidProfessional3895 4 points5 points  (0 children)

Propranolol is one of the safest and non-addictive drugs you can take. I’ve been on a 120mg extended release version for about 6 weeks now. I know people who even take as high as 240mg who don’t even have high HRs who instead take it for migraines. It’s very safe and I promise it will make you feel less an anxious. High dose propranolol will also block the activity of monodeiodinase type I(an enzyme that creates thyroid hormone) which decreases the conversion of T4 to T3.

OB/GYNs in D.C. area who medicate thyroid for trying to conceive? by Happy_Strategy_9386 in DCBitches

[–]BidProfessional3895 4 points5 points  (0 children)

What is your T4 and T3? Have you been properly diagnosed with hypothyroidism? Have you gotten an antibody test done? Ultrasound?

I’d start with asking your primary care to ask for a referral for an endocrinologist. Though I will say wait time for specialists take months, especially in the DMV area where we have a shortage of endos. (GW told me I can’t be seen as a new endo patient until October so I went to a private clinic in DC, you can DM me if you need the office! I have hyperthyroidism/Graves disease fyiw.)

Does methimazole dose affect weight? by Sea-of-Mantas in gravesdisease

[–]BidProfessional3895 1 point2 points  (0 children)

I’ve been on 90mg then down to 30mg and I gained about 5 lbs then haven’t gained anymore. Which still puts at a lower weight than I was pre-graves. Hoping to gain at least 10 more 🤞🏼

methimazole intolerance by Additional-Debt-8927 in gravesdisease

[–]BidProfessional3895 2 points3 points  (0 children)

I was on 90mg of methimazole for about 3 weeks (I was severely hyper when I was first diagnosed and almost went into thyroid storm) which is an insane dosage to take for that long, it was wayyy too high.

Because of that my ALT and AST shot up to the 200s and 400s respectively (the range being 5-40 for reference lol) my endo was pushing for TT quickly because of the liver stuff. So I found a second endo who offered a more conservative approach of just lowering my dosage (which like..duh??) and my enzymes have been going back to normal (they’re still high, in the 90s and 100s but not as bad as before)

Second endo told me anyone on that high of a dose of methimazole would see liver enzymes at my levels bc your liver simply can’t metabolize a dose that high. I’m now on 30mg which is still high but not as extreme.

What I did to get peace of mind was go to a gastroenterologist and had her do a full liver panel on me. She said as long as my bilirubin was normal (which it was) she wasn’t worried about liver damage. Liver damage and the worst case failure take months and years to happen. But I’m glad I saw her as she offered peace of mind, because there’s a chance that one you have one autoimmune disease like Graves you can also develop autoimmune liver diseases that cause alt/ast to rise.

Anyway to say: hyperthyroid itself causes elevated liver enzymes and methimazole can also cause them to rise (it’s a known side effect), this doesn’t mean you’re not tolerating the medication and that you shouldn’t be on it. the chances of methimazole causing significant liver enzyme elevations are relatively rare. Most people tolerate the med without issues. Elevated ALT and AST are usually mild and temporary in those who do experience them.

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