Oh, one more thing, he did mention that I was going hypo fast and he was concerned my thyroid is crashing. So will keep ya posted.

Thanks so much! Will do and will ask on Monday when I see him. I'll do twice daily thru the weekend for now. Thanks so much for all the support. Yes, its only been about 6 or 7 weeks since the storm so I made a remarkable recovery.

Don't worry your thyroid isn't crashing, it's just docs putting people on high doses at first. Once you balance out and find the right dose to stay on for a maintenence dose you should be okay. I'm not too familiar with ptu dosing and such but you could probably do 100 mgs taken twice a day, 50 then 50 and take that for a week then go down to 50 altogether,taking 25 then 25. Can you split it like that? I don't know. I only know about Methimazole. Sometimes if you reduce too much you get symptoms. Maybe too what Mm says to stop for a few days then try the lowered dose. Your Ft4 is way low. At least your doc is lowering you, not keeping you at the same all this time.You might feel some transient hyper symptoms but this is normal and will pass as your body gets used to the new dose.

I agree with everyone and offer a few additional comments.

250-500mg of acetyl-l-carnitine per day helps greatly with transient hyPER symptoms.
Your heartrate issue could very well be a transient hyPER symptom which often occurs when ATD (PTU, in your case) doses are being reduced.

Elaine Moore, Graves' guru and author of several books including "Graves' Disease - A Practical Guide" recommends this.

I take it any time I'm reducing my dose....it definitely helps.

I know many doctors have the patient stop taking meds for a few days and then start up at a lower dose. Still, lowering your dose too much too fast can bring on symptoms.

100 mg daily could be the right dose for you - it's at the higher end of the average maintenance dose (which is usually 25mg PTU up to 100 mg PTU).

You definitely need to have your dose adjusted so your FT4 gets to mid-range, at least....that's the place most people feel best at. Once you get there, you can tweak your dose if you're still having symptoms.

Happy for you that your doctor is running the right labs. TSH is not a concern right now and could very well not be a concern for a few years - TSI, the Graves' antibody, works in lieu of TSH to stimulate the thyroid. The pituitary gland recognizes this and doesn't produce TSH. As long as you have Graves' antibodies, don't expect to see TSH...some docs get nuts about this. If your doc starts, let me know and I'll give you some resource links to read and share with your doctor.

The most important thing is to get that FT4 at a good place for you.

So happy things are settling down for you so quickly - you've had more than your fair share of a tough time already.

Keep posting - we'll stay with you every step of the way!

As cd says, I take the Acetyl L-Carnitine five days a week and break for two days. Definitely helpful in my case.

{{{hugs}}}

All I can say is thank you for all the support! I am so blessed to have found this support group. So I saw my endo today and he took me off my ptu for a couple days then I will be taking 1 tablet once daily for 3 weeks and then retested again. He did discuss my options for treatment and asked if I wanted to consider surgery, radioactive iodine, or to stay on a low dose of ptu. I chose to stay on the ptu for now. He is very supportive and I consider myself blessed to have this endo as my doc. He did say to take the propranolol as needed per my symptoms as I am transistioning thru the different doses of meds. So, we'll see how I feel in a couple days without any ptu. I'm a bit nervous but have confidence in what he said especially since another supporter mentioned that this a route of treatment to consider. Thanks so much! Will post labs in 3 weeks.

Great news from the endo's office!!!

Honestly, you might want to consider splitting your PTU dose - even if you have to buy a pill cutter.

You see, PTU has a very short half-life and only taking it once/day could cause you to have a swing in symptoms from hyPO right after taking it to hyPER as the dose wears off.

So many endos tell their patients there is no need to split the dose but the actual prescribing instructions mention this as well as online instructions. We on here have speculated that it's a compliance concern for the docs.

Since you were dividing the doses before and are dealing with the fluctuating heart rate, why not continue as you have been?

Most everyone on here splits their doses - I know it made a difference for me in how I felt overall.

PS if you think you'd like to try one of the other treatment options, I strongly suggest you thoroughly research each one - they are both permanent and will have life-long effects - not a decision to take lightly. We have plenty of resource links for information that we will gladly share with you if the time becomes appropriate.

All the best,

Carol

As cd says, I would continue taking the PTU several times a day. My Endo told me the same thing, that once I got down to such a wee doses, it shouldn't matter. Well, unfortunatey it mattered cause I swung hypER within a couple of weeks. Now the Endo knows better and started suggesting two divided doses. Well, two divided doses still doesn't work for me, so I continue with small wee doses of three times a day. I take 3.75 mg of MMI which is an equivalent to to PTU of 37.5 mg.

I would tell you that look how well you responded to PTU in such a short amount of time and say that if you did so well, there's no reason why not to continue taking ATD. Reseach and worry about other options for the future should the need arises. My Endo has long termed patients (including me) on ATD for 15+ years. For me, I've been on the MMI for over six years now.

{{{hugs}}} :-)

Thank you to all of you who have helped me thru this and given me very helpful advice. So after that last post, I was taken off the ptu for 3 days and started back on 50mg daily. And as advised, I got a pill cutter and divided my dose 25mg every 12 hours. After 2 days, I started having nightmares and feeling these bursts in my chest area so the endo's partner uped my dose to 50mg twice daily. Well, today after taking that dosage for 2 days, I started feeling dizzy. I called my endo and he said it could be becuz I'm so hypo and he wants me to lower my dose to the original plan of 50mg daily. He said to divide the dose and to hang in there. What do you think? I figured I would take 25mg every 8 hours for next 2 days then lower to 25mg twice daily. I just want to feel normal and stop feeling so frustrated! Any advice is appreciated!

The endo's partner should not have told you to change your dose without looking at your labs. He/she would have clearly noted that you are very hyPO.

I have had interruppted sleep with weird dreams when hyPO - very common symptoms - some of the dreams could be considered nightmares. I don't know what you mean by "bursts in your chest" but I can have a thumping/pounding heart (vs. fast heartrate) when hyPO....it's the weirdest feeling - very hard to describe.

Bottom line, your labs are hyPO, you've been having hyPO symptoms - there is no way you should be taking more PTU.

I'd stick with your endo's instructions and take your 50 mg PTU in two divided doses.....it will take some time for the symptoms to settle down.

The best thing you can do for yourself right now is to get regular labs.....make sure your FT4 is at mid-range, at least and try to stay there.

Most people feel best at mid-range FT4, at least.....once you "try" it for a few months, you can tweak your dose if you have hyPER or hyPO symptoms.

Any symptoms you get in the "neighborhood" of mid-range FT4 should be much milder than the extremes you've already experienced.

It will get better - I promise - and we'll be here for you every step of the way!

Thank you so much. The nightmares were the same ones I had eight before I had the storm. Feelings that I can't breathe. Its a horrible feeling. Snd then my anxiety kicks in. I will try my best to hang in there and take the 50 mg in two divided doses.

I wonder if for your your labs comes up too quickly and you're feeling every bit of the changes and are very senstitive to the symptoms...?

That's exactly what my endo said... That I'm so sensitive to the symptoms. Hearing it from someone else helps. Is it anything to be worried about? Or will it just pass?

Many people I've met through the forums have said that they didn't truly feel well until their levels were stable for awhile.

You have been at the extreme ends of the spectrum over a very short period of time - it's no wonder you've had such difficulty.

Anxiety is a common symptom for both hyPER and hyPO, unfortunately. I do believe those of us who are prone to anxiety (moi :) will experience that as a symptom.

Have you had a chance to read a little more about Graves' disease? Truly, it will help you understand more of what you're going through.

You will need to be proactive with your care to make sure you are being dosed properly so you maintain mid-range FT4, at least.
That's the level most people feel best - we dose to get there, see how it feels for a few months (getting stable). Then, the dose is tweaked if you're still having hyPO or hyPER symptoms.

Remember what I first mentioned above about stable levels? That's what you want to work towards - you can feel well and have Graves' disease but it will take a combination of effort between you and your doctor.

I'm sure you've read many magazine articles about taking responsibility for your health and being proactive with your care - those articles really apply for Graves' disease.

Hang in....you're on the right road - we'll help you stay there.

You have to remember hon you have been lowering and lowering your dose,and you were hypo most of the time. You are still feeling the effects of being on a high dose, as you get lower you should climb out of this "hypo hell" as some people call it. I never really had it this bad, I was always on a pretty small dose.It sounds like the doc is saying what we're saying though,so that's good, he gets it, it seems. Lowering like this is making your levels really fluctuate but you should feel better as the days go by, once you get stabilized.