Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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Repost w/new labs*Hypo?or Remission?

scorpiogirl76
scorpiogirl76
Labs from July 30:

Free T3: 2.8 (range 2.0-4.4)
Free T4: 0.83 (range 0.82-1.77)
TSH: 0.492 (range 0.450-4.500)

July 8, 2010 Labs:
Free T4: 0.8 (range 0.8-1.8)
Total T3: 96 (range 76-181)
TSH: .39 (no reference or range available)

With labs on July 8: Stopped PTU for 2 days then took 12.5 MG once daily for two days then Lowered PTU to 12.5 mg odd days, 25 mg even days (alternating). Propranolol 5 mg (twice daily). A week later, lowered to 12.5 mg of PTU daily (divided twice daily) and Propranolol 5 MG once daily at night. Two weeks later PTU still 12.5 mg daily (divided twice daily) and discontinued Propranolol completely.

Okay, I'm stumped. Saturday, out of the clear blue sky, I started feeling really really bad... chest pains set in, pressure in my chest that came and went but heart rate was maintained and no palpitations, nausea, dizziness.... just felt terrible... absolutely no appetite... so I skipped my PTU dose that night and felt a little better later in the night... the chest pain had let up. Sunday morning I woke up to feeling horrible again without the chest pains... stomach hurt so bad.... bad cramps in stomach, left leg cramping up, and loose stools and a little bit of dizziness (TMI- sorry).

I am wondering if I should starting taking my PTU every OTHER day at 12.5 mg or if I should drop my morning dose daily and just take the night dose for next 3 weeks and lab again? What do you think? Do you think this could be remission?
dairytech
dairytech
Hannah has a very good point. Being hypo is not good. If you do go off meds and see if remission sticks it could take a while for your FT4 to come back up. I also think that a small amount of Synthroid or something similar would help bring you back up to at least mid range. I am one of those 20% who has gone hypo naturally and am taking 62.5 mg of Synthroid to keep my levels where they need to be...for me. I also was kept hypo for a year longer than I should have and it was a horrible year. This is something to think about and perhaps talk with your endo about. The sooner your out of hypo the better it will be for you. Big Hugs...Kathy
scorpiogirl76
scorpiogirl76
Thank you ladies! I will request a small dose of synthroid (25 mcg) if I'm not feeling much better by the end of this week.
bransnana
bransnana
Yes, good idea, then you can see how you feel on it.
dairytech
dairytech
It's really hard to get the docs to agree to this because they are so afraid of you going hyper again. They seem to prefer us to be hypo...its safer from there point of view...not ours. I started with 25 mg of synthroid and slowly worked myself up to 62.5 mg. Thats a very small and safe amount to start with. I read on Elaine's board that anything under 50 mg is not a large amount and its safe. Always use your lab results to gauge where your at and remember symptoms aren't always reliable but your lab result are. Big Hugs...Kathy
scorpiogirl76
scorpiogirl76
Thank you... I will "try" to get a rx from my endo if not feeling better by the end of the week. I skipped my PTU dose yesterday and the night before and I feel better already. Not alot better, but enough to finally function again. Still very tired but the stomach pains did let up a little and the cramps stopped. I will take my dose today of PTU 12.5 mg divided.... and continue every other day for now depending on how I feel. THANK YOU THANK YOU THANK YOU so much.
deleted_user
deleted_user
Yeah, I'm really not sure why they prefer us to be hypo rather than normal? I really get confused by it. I mean, shouldn't the aim be for normal thyroid levels? Why is hypo healthier than normal? Does anyone know? My endo used to tell me my thyroid levels were "perfect" when my FT4 was below range and I had fistfulls of hair falling out and excruciatingly debilitating whole body charlie-horses and a pounding heart palps that made me feel like I was going to die. It certainly didn't feel healthier.
I had to fight for about two years to get the script for levoxyl, but it made such a huge difference the last time I was overmedicated with methimazole that it was worth it. I got better from being overmedicated in half the time that it usually took me to get better from being overmedicated.
I hope you feel better, soon!
Big hugs,
Hannah
mmztcass
mmztcass
Hi Hannah:

Not sure why...? Just as it is bad to have a thyroid storm, it is bad to have a myxedema coma as well.

{{{hugs}}}
scorpiogirl76
scorpiogirl76
Okay, so it's been only about a week since deciding to alternate my days on PTU and off PTU. So, I don't know if I'm crazy, hallucinating this, or what but I feel like on the days I take the PTU, I feel absolutely HORRIBLE... worse... and every time I take the PTU, I get worse... I keep getting sharp sharp chest pains.... today is the worse.... I skipped my morning PTU dose for yesterday and only took the PM dose and chest pains set in last night... could this be due to the PTU? Or could it be due to needing a beta blocker again? I'm WAYY confused. What would happen if I just stopped my PTU all together? I don't know what to do. I left the endo a message so waiting to hear back. In the mean time, trying to stay calm and not get my anxiety up so high that I end up in the ER. My heart rate and blood pressure have been fine (heart rate in low to mid 60's). I feel short of breath every time I get this sharp chest pain... it comes and goes in spurts.
deleted_user
deleted_user
Hi,
I'm so sorry. :( When you are hypo, as you take anti-thyroid drugs you can keep going more hypo. The heart pounding is a hypo-symptom and when we are hypo, I'm not sure that a beta blocker will help, but you need to ask your doctor. Betablockers can lower FT3 values, so you need to get that level checked before you take one, otherwise you can go hypo with your FT3. Your total T3 looked low from your last labs, so I think you may just be uncomfortably hypothyroid and may need to stop taking PTU for awhile, until your FT4 increases up towards a more normal level. Ask your doctor, of course.
Big hugs!
Hannah
scorpiogirl76
scorpiogirl76
Thank you. My endo's office called back and I asked if I could stop the PTU all together or would I risk a thyroid storm or severe hyper thyroid again so I will be labbing tomorrow.... and should know something by Thursday! In the meantime, I will only take my PTU in a half dose of what I was taking on the days I take it until I know more. Just to be safe. If this is hypo... this sucks. I don't know which is worse... hypo or hyper.... both are awful... but hypo makes me not be able to function. At least hyper.... I was going going going.
dairytech
dairytech
Being hypo totally sucks. Except for the thyroid storm...I would take slightly hyper above slightly hypo any day. I felt just horrible with my levels at or below mid range. I think you are making a really good decision getting labs before making a change scorpio....good for you! Those who are an active partner with there docs and who take charge of there health...seem to do so much better dealing with Graves. Big Hugs...Kathy
scorpiogirl76
scorpiogirl76
Oh yeah, I would take "slightly" hyper any day over any hypo as being below my happy spot makes me not able to function day to day. Doing simple task such as checking the mail, dishes, laundry, making beds seem impossible hypo. My legs are feeling like jello beneath now..... like they are going to buckle at any moment.... not sure what it means... will see what labs say.... Praying I can stay out of ER the next couple days with these chest pains. Hoping it's just a reaction to being hypo. If labs show hypo, should I ask for some synthroid then?
mmztcass
mmztcass
Unfortunately for me to try to be slightly hypER results in my having anxiety/panic attacks. So I guess I'm the opposite of you ladies, I'd rather be slightly hypO. :-)
deleted_user
deleted_user
MM and i seem to have horrible anxiety & depression when im hypo ..So really goes to show that we really all are different w/ our levels..Hope all works out well i def will say a prayer ur in remission!
deleted_user
deleted_user
Graves' is so hard. When I was hyper, I had muscle weakness, tremors and insomnia that would last for days. The muscle tremors are what made me head in to the doctor. I was worried that I was getting MS or something. I guess it hits women in their thirties the same as Graves'. I was relieved that it was not MS. My heart would race, but not pound. So weird. I don't remember feeling pain, just very weak.
Hypo was always very painful for me, and it would make it very difficult to do normal things. I would get instant, searing charley horses whenever I tried to move, and had to quit watching my sisters' kids (two sisters with 10 kids between the two, I was the main care giver for over a decade) due to slow responses and forgetting stuff like macaroni on the stove until it burnt, etc. Very scary!! Hypo sucked. I hope you feel better, soon!
Yes, I'd ask for a small script of synthroid or levoxyl from your doctor and you may be able to take it at the same time as you take your PTU. This approach to treating Graves' is called "Block and replace therapy" and you get the replacement therapy along with the blocking benefits of anti-thyroid drug. There are several on here who have tried it and are doing well.
Take care,
Hannah