[AzGravesGuy March 27, 2013 at 6:55 pm Post count: 160]

#1173588

I have been dropped to 5mg methimazole twice a day and 25mg atenolol twice a day. Cutting pills in half as I type. Bloodwork recheck in 2 weeks or sooner if I start to feel symptomatic of hyper again.

Hope this works, even if just for a few weeks….I will take whatever calm I can get. Update as soon as something or nothing happens.

[KimberlyOnline Facilitator March 28, 2013 at 11:08 am Post count: 4294]

#1173589

Hope this finally gets you off the hyper/hypo rollercoaster!

Going forward, you might ask your doc about a different prescription so that you don’t have to split pills. Methimazole comes in 5 mg and I believe that atenolol comes in 25 mg. (Although it’s possible you might have some cost savings from splitting the larger doses…your pharmacist should be able to help you price this out).

Take care!

[AzGravesGuy April 1, 2013 at 8:38 am Post count: 160]

#1173590

Well something has changed.

The last week has been filled with disturbing dreams, each night the dreams star a person from my past (i.e. high school classmates, my first boss, old friends, etc.). The dreams are not friendly, fun, or remotely entertaining. I wake up feeling unrested and troubled.

Today it was a struggle to get out of bed. Malaise is the best term I can use besides depressed. I am not sad, just feel completely drained before my day even begins. Maybe I need a venti quad latte. Lol! (I live caffeine free, except for green tea, so that is a bad idea.)

I had a great weekend. Productive and fun. I did not over exert myself.

For anyone that has been officially hypo….is this what it feels like? I have no desire to do anything. It isn’t a lazy feeling, just exhausted at the idea of doing anything. I have obligations today and I want to cancel them all. I feel overwhelmed by nothing.

Could my RAI be a late bloomer? Lol! I know this is wishful thinking as I just developed a plan to get my TT done this year. But if this is the case, hoooooray! I still have a palpable thyroid so whatever is happening, the gland itself is still there. Maybe I overshot the higher dose methimazole, as I have only been on a reduced dose for 6 days or so. Whatever this is, it sucks.

I go for bloodwork next Monday. Still on 5mg methimazole 2x a day and 25mg atenolol 2x a day.

Kimberly, I split the pills because I have bottles of a few hundred of each. There was a big savings buying them 500 at a time. They are scored already. I just follow the line and they snap easily. My MD has a pharmacy in his office so they ordered full bottles for me and stuck a label on them. Huge savings!

[KimberlyOnline Facilitator April 1, 2013 at 11:12 am Post count: 4294]

#1173591

Oh, no…so sorry to hear about this latest issue! Hopefully, the bloodwork will give you a clearer picture of what is going on.

I hear patients complain of vivid dreams more often when hypER vs. hypO, but it will be interesting to see if others will chime in with different experiences.

If you aren’t getting restful sleep at night, certainly that can carry over into how you feel the rest of the day.

Wishing you all the best – hope that this is only a temporary setback!

[Raspberry April 1, 2013 at 4:24 pm Post count: 273]

#1173592

So sorry AZGravesguy! That sounds rather miserable. I can describe my hypo symptoms if it is of aid. Brain fog, overwhelmed to the point of tears over anything that is wrong, feeling unable to cope, spontaneous joint pain – that’s the key one, constipated, and feeling cold. I’m feeling better these days though not sure where I stand. All the symptoms came on when my TSH went above only 2.0 when it got up to 3.0 it was at its worst I just described. Nightmares for me have tended more to be hyper or betablocker related. I hope you feel better soon!

[vanillasky April 1, 2013 at 4:59 pm Post count: 339]

#1173593

Feeling hyp0? Hmm………..can’t remember when that happened. it’s been a few years but I had a TSH of 14.0 and was so tired, couldn’t get out of bed. Felt like a coma to me. Hair loss, kinda chilly, but aside from gaining all the weight I lost during hyper, that was it.

Karen

[ChristinaDe April 1, 2013 at 8:24 pm Post count: 115]

#1173594

Hypo for me? TSH almost 14. (After a late, but expected, post-op plunge.)

Cold (the kind you feel when you’re getting IV fluid)
Weak muscles & painful joints – very painful at times
Lethargic & unmotivated
Nightmares that are as crazy as those I had while on ATDs & beta blockers!
Instant 3 or 4 lb weight gain, all in my belly
Hair falling out a little quicker
Facial puffiness
Skin & hair dry – almost overnight

I have avoided naps, and I still do things, but I seem to pay for it when I do (with increased muscle & joint pain). Amazingly, my mood & cognition seem pretty unaffected (which were my chief issues when I was hyper).

I’m 5 days into an increase in my synthroid dose & I swear that I can already feel a mild difference!

[Naisly April 1, 2013 at 8:51 pm Post count: 143]

#1173595

Just to add – Symptoms are related to FT3&4 not TSH. Mainly FT3 since FT4 is a storage hormone. If it was TSH then people with .01 TSH and normal FT’s would be extremely hyper feeling and probably end up in a thyroid storm, and I with a TSH of 78 would have been in a coma.

FT3 is the active hormone your body uses in metabolism. And why people with no thyroid will have many complaints relating to hypo symptoms, and why there is currently controversy regarding adding FT3 along with FT4 to your supplements.

This is again why it is important for your doctor to test for FT3/FT4 and not rely on TSH only. The idea is to watch your levels along with your symptoms and dose medication accordingly.

[Raspberry April 1, 2013 at 9:00 pm Post count: 273]

#1173596

I don’t think the TSH is useless if it’s already clearly become operational again. If it is still falsely suppressed by the Graves antibodies yeah we don’t want to pay attention to it. But it’s been helpful for me over the years to see that TSH 2 and over equals real hypo symptoms unless the Graves is very active and falsely suppressing it. I’ve heard some people shoot for 1.0. For me in terms of Free T4 hypo starts to happen at 1.2 and lower – 0.7 is hell.

[ChristinaDe April 1, 2013 at 9:18 pm Post count: 115]

#1173597

It’s all very confusing. I actually had a thyroid storm w/ normal FT4/3 and a TSH of .01!

Now I have hypo symptoms w/ a TSH near 14 and a normal FT4/3. My FT4/3 has never moved out of normal range; my symptoms have always followed my TSH around. I guess I’m a freak case. In any event, we test all sorts of things…but we treat off my symptoms which closely align w/ my TSH. If we waited for my FT4/3 to go out of whack, I’d still be sick as a dog.

I once heard an MD lecture on this very topic. In its hyper state it’s called subclinical hyperthyroidism & the symptoms can be just as severe (or sometimes even more so) as those of overt hyperthyroidism. Depends on the patient. There is a hypo version as well.

Another interesting thing I learned along the way is that how symptomatic or sick a person is may not be in direct alignment with their numbers. For example, someone may have horrific hyper symptoms w/ a TSH of .03 and normal FTs, while another person feels no symptoms w/a TSH .01 and abnormal FTs. Just more evidence that thyroid patients can’t be treated on labs alone. So much about this disease just depends on the person.

[Naisly April 1, 2013 at 9:34 pm Post count: 143]

#1173598

If you haven’t read what I wrote here have a look:
http://gdatf.org/forum/topic/43090/

It might help.

[KimberlyOnline Facilitator April 2, 2013 at 11:21 am Post count: 4294]

#1173599

@ChristinaDe – Yes, definitely true that patients will experience different symptoms, even with the same lab levels. I know a local patient who feels best when her labs are hypo – although, of course, her doctor won’t let her stay there! Finding a doc who will both consider symptoms *and* labs in making dosing decisions is critical.

[AzGravesGuy April 10, 2013 at 5:40 pm Post count: 160]

#1173600

2 weeks have passed on the lower dosage of 5mg methimazole 2x a day and the results are in:

My tsh is now 36.43H (.45-4.5) 2 weeks ago it was .6!

FT4 is now .4L (.8-1.7) 2 weeks ago it was .5L

FT3 is now 1.9L (2.0-4. 2 weeks ago it was 2.0

I just got the results in an email, of course right after my MD’s hours ended, so I have to sit and stew until tomorrow. I will not be taking methimazole tonight or tomorrow morning.

This now explains everything I have felt in the last week, aside from the strep I contracted. Lol! The malaise, the brain fog, the obscene tinnitus, the graphic nightmares, the chills that “aren’t” strep related…..I guess….

Could it really be? Could my RAI just have been a late bloomer? Now I am struggling to palpate my thyroid. There is remarkably less tissue there.

Could I really be close to entering the second act of the Graves’ Experience?

I am glad I use a “cash lab” to get my levels checked so frequently. If I had to wait 90 days for insurance to allow this, who knows how overly hypo I could have been. I encourage everyone that feels symptomatic and has insurance restricting their bloodwork timing to investigate cash labs. They are a welcome resource for those of us without insurance (like me) and anyone who is impatient but can feel there is something definately different.

I will update with what happens next tomorrow! Whooohooo!

[Momof5 April 10, 2013 at 8:32 pm Post count: 118]

#1173601

Wow. That would be wonderful news for you after the crazy emotional roller coaster ride you’ve taken! Praying for you.

[AzGravesGuy April 11, 2013 at 9:57 am Post count: 160]

#1173602

Thanks Carrie, I appreciate your support!

I spoke to my dr today. My skepticism of actually being hypO was met with cautious agreement. He even said there is a slim chance I might actually be euthyroid without the methimazole, since my free levels are so close to normal range.

I am off the methimazole and atenolol for another 2 weeks, then more bloodwork to see if history repeats itself and I rebound hyper.

I feel good though, mostly because the weight has been lifted from the back of my mind that this cycle was never going to end…..and it may not just yet, but a massive gain has been made and that gives me a sense of calm. Hopefully I will continue to move forward this time instead of having a relapse.

As I see it, the Graves’ experience with RAI is a 3 act performance.
Act 1, hyper.
Act 2, hypo.
Act 3, regulated.

Whether real or ATD induced, Act 2 is a welcome change, especially with summer coming. All of the hypo symptoms are tolerable so far. Annoying, but tolerable. Lol!

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