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...
Hello everyone! I have to say that without this forum/support group... I don't think I could have kept my sanity thru this journey. Well, my labs are in again.... and they don't look good. Advice please!!!! I saw my endo today regarding the labs... and he decided to INCREASE my Ptu and add a beta blocker... I'm so upset. I know I am still early in this lovely Graves journey but I just want to be "normal" again...whatever that means. I was really hoping for an early remission or hopes of my levels finding their "happy" place already. I am posting my last 3 labs just to give an idea of where i've been with my levels (they are also posted in my journal- my entire journey is). What would cause my levels to increase so much? I've been having shakes in my hands the last week so he suggested the atenolol (however, I was on propranol in the past so I don't understand the change in beta blockers). He said I am definitely going hyper again and suggested increasing my PTU to 50 mg... however, I decided 37.5 mg might be better since I was at my best when I took this dose. I am wondering if my increase in levels could be attributed to the amount of stress i've had in the last month (it's been horrible)... my grandmother passed and then there were other family issues that have followed... and it has taken a toll on me and laid heavily on my heart and soul. Or could it be my diet... I am slowly started to eat "real" foods again... I was only eating plain rice and soups for the most part thru mid January... I'm so frustrated and of course, my anxiety doesn't help cuz I worry about another thyroid storm... someone please share some ADVICE with me!!! I'm in desperate need of hope here!
Labs from December 17, 2009:
Free T3, 503 range 230-420
Free T4, 1.3 range 0.8-1.8
Took 37.5 mg of PTU daily in divided doses of 12.5 mg at 9 am daily and 25 mg at 6 pm daily. Felt the best I'd felt since this journey began.
Labs from January 12, 2010:
Free T3, 438 range 230-420
Free T4, 1.1 range 0.8-1.8
PTU lowered to 25 mg daily (12.5 mg in am and 12.5 mg in pm). No beta blocker. (Just Propranolol as needed)
February 23, 2010 Labs
Free T3, 545 (range 230-420)
Free T4, 1.5 (range 0,8-1.8)
PTU increased to 50 mg daily and atenolol 25 mg daily added. (However, taking 37.5 mg of PTU instead).
Labs from December 17, 2009:
Free T3, 503 range 230-420
Free T4, 1.3 range 0.8-1.8
Took 37.5 mg of PTU daily in divided doses of 12.5 mg at 9 am daily and 25 mg at 6 pm daily. Felt the best I'd felt since this journey began.
Labs from January 12, 2010:
Free T3, 438 range 230-420
Free T4, 1.1 range 0.8-1.8
PTU lowered to 25 mg daily (12.5 mg in am and 12.5 mg in pm). No beta blocker. (Just Propranolol as needed)
February 23, 2010 Labs
Free T3, 545 (range 230-420)
Free T4, 1.5 (range 0,8-1.8)
PTU increased to 50 mg daily and atenolol 25 mg daily added. (However, taking 37.5 mg of PTU instead).
I am so sorry about the stresses and sadness that you have been going through. Big hugs!!!
How are you feeling, physically?
I have seen labs like yours before. Please know that I am not a doctor so I'm just going to tell you what I have seen on these forrums. Please read up on the posts by Applebobby. He had the same funky thing happen.
Your FT4 looks fine and has been in range each time. Your FT3 is high, and it seems to be consistently out of range from December until now. It looks like you may be experiencing something called "T3 toxicosis" and it doesn't feel very good. I'm so sorry. :(
When people have come on here with T3 toxicosis, the same thing keeps happening. Their doctors increase their antithyroid meds and their FT4 responds well, usually dropping down, often so low that they start to feel hypo, but their FT3 doesn't respond as quickly, so they can feel both hypo due to their low FT4 from the ATD increase and hyper due to the fact that they are still converting too much FT3. No fun!!!
Doctors are starting to treat T3 toxicosis using beta blockers, which are supposed to help lower the FT3 level, so hopefully it will help you feel better, but be sure to keep an eye on how you are feeling with your PTU dose increase. 25mg of PTU is not that much, but you responded pretty well in January and had a drop, so be sure to ask for labs more often, and especially if you start to feel yucky.
DIetary changes can be helpful, and I found that limiting my dietary iodine helped me feel loads better!
I hope you feel better, soon!
Big hugs,
Hannah
btw, my brother had radioactive iodine and he seems to be way more well adjusted all around than me.... but then again, my sister had a thyroidectomy in the early 80s and is way more well adjusted than me too... maybe it's just me... haha hang in there! xo
Most definitely, stress can cause an increase in our thyroid hormone levels.
Please realize you do NOT have to have RAI - your treatment choice is your treatment choice and if your doctor will not respect that, then it's time for a new doctor. And, if you opt out of RAI, you certainly do NOT need an uptake scan - why expose yourself to unecessary radiation?
While I'm sorry that you've had to deal with hyPER symptoms, you have many reasons for them right now. Dose decreases can bring on transient hyPER symptoms....so can certain foods and definitely, so can stress.
I think it's good the doc changed your beta-blocker. I've read that Atenolol is better at lower FreeT3 levels, which is something you need to do. Please take it regularly.
Now, your FreeT4 isn't in a "bad" place but it is in a place at which some people would not feel well. Since you felt great when it was 1.3 (mid-range!! :), it makes sense to increase your dose somewhat.
By the way, I've read Elaine Moore tell people that slightly over-range levels (like your FreeT3 in December) can be perfectly fine as long as the person isn't having symptoms.
It truly is all about finding YOUR best place within the ranges.
I think you are EXACTLY on track with your decision to take 37.5mg PTU.
You are honing in on your maintenance dose.
Please keep the faith - I think you're making great progress :)
PS Lucky for everyone on this board (including this "old-timer") to have koob16 on board. I just learned some new stuff about beta-blockers :)
Thanks again everyone!
Big hugs!
Also as Hannah pointed out...eating more foods that are called goitrogens can make a big difference in how you feel. It made a full 2 point difference for me. Foods like broccoli, cauliflower, cabbage etc. You can google it. This in combination with your small dose increase could be all you need... Big Hugs...Kathy
Glad we were able to help you feel better. I truly believe you are on the right track now with your decision to take 37.5mg.
I see merit in Kathy's comments about possibly keeping your dose at 25mg since the .2 change in your FreeT4 isn't significant at all - Elaine Moore tells us that a .3 change in levels is considered normal.
I think that's where Hannah was at with her thoughts about T3 Thyrotoxicosis and, in that situation, beta-blockers can effectively lower FreeT3.
Some peeps advise taking the beta-blocker at a different time than the ATD......I took mine at the same time and was fine.
Now, I had a resting heart rate of 89 when I started the beta-blocker (in my case, extended-release Propranolol) and my BP was normal.
My heart rate went down to maybe 80 and my BP stayed the same so, the best I can offer you is the suggestion that you monitor both to make sure the beta-blocker is doing right by you.
At the end of the day, once we have an understanding of Graves', we need to do what makes the most sense to us and what we feel our bodies need.
I definitely do NOT agree with your doc's recommendation of 50mg and you seem comfortable with the idea of 37.5mg.
Slow and steady does win the Graves' race and, I think that, after this dose adjustment, you should get a true idea of what your maintenance dose should be.....either 37.5mg or 25mg.
Since you are comfortable with the thought of taking 37.5mg, I think you should take the 37.5mg PTU and the beta-blocker (it's not that high of a dose).....continue to avoid iodine, etc. and see how everything pans out by the time of your next set of labs....just be sure to lab within 4 wks.
Everything just might fall into place :)
Are you keeping an eye on your diet as well? Remember what foods/drinks that trigger you off and stress that can set you off, okay?
I find that no matter how 'perfect' my diet can be, I still cannot have the 'triggers' that sets me off. Otherwise I'm back to square one again.
{{{hugs}}}
Thank you everyone!
I wish I could each and every one of you who has crossed my path in this support group.... you are have been a BIG part of my journey and my survival with Graves.
Hugs.
You sound VERY much on the right track. I suspect that, as things settle down for you, 25mg could be appropriate again for you.
Truly, as we heal from this disease, we will need decreasingly lower doses to maintain our "best place" within the thyroid hormone levels.
And, just in case I didn't share this with you already or you haven't read it before, you might want to read this
http://elaine-moore.com/MyArticles/GravesDisease/WhatstheRushinTreatingGravesDisease/tabid/169/Default.aspx
I think the only reason a person would ABSOLUTELY have to have RAI would be due to them not being able to take ATD's or not being able to have surgery.
Don't let your doc bully you (believe you me, I know how that feels....I went through it with endo #1....and again with endo #2)
PS you really want to lab every 4 wks. until you can maintain your levels at the same dose for at least 3 months. And, if you are headed towards remission, you will most likely need to reduce your dose by that 3-month mark :) Then, you'd need to start labbing every 4 wks. again :) (I've been in remission since early Oct. 09 and, for the first time, am going 8 wks. between labs and that's only 'cuz my appointment got cancelled due to the 2 ft. of snow that just fell :)
hugs back atcha!
Changing my diet really helped me a lot! It really, really helped my eyes. I have pictures up on my profile for friends to see, if you want to take a peek. Some of us Gravesian's are really sensitive to chemicals and foods. I have to avoid Dairy, egg yolks, bakery items (I'm avoiding gluten) and processed deli meats, seafood, fish and red dyes and sources of cadmium like cigarette smoke, rice and lettuces. I am in remission and am feeling really good, but I'm having to stick to my diet pretty strictly.
One issue with T3 toxicosis (normal FT4, High FT3) is that our other organs (liver, etc) are also responsible for converting our t4 to t3, so its not just the thyroid that is responsible for the conversion.
So from what we have been seeing on here and some other boards, so far, is that even after thyroid ablation, when people are put on their T4 replacement, they can still end up with their FT3 going uncomfortably high and they can end up still not feeling that great (back in the same boat where they began their journey). Many have been left hypo, trying to control their FT3 by keeping their FT4 too low.
Please know, I am not a doctor and am not trying to convince you of one treatment over another. I'm just telling you what I have observed. Everyone is different, and maybe these cases that have been seen on there are new, and ablation may work very well for treating high T3 over time? I'm not sure, but I hope so!!! In the meantime, I think it is vitally important for your best health to have your doctor get your FT3 and FT4 in normal-comfortable levels that make you feel great, BEFORE you commit to ablation, because ablation of your thyroid may not be a quick fix for a person who shows consistently high FT3 levels like you have.
So, it is really important that your doctor can show that he/she can get both your FT4 and your FT3 in good ranges now, before ablation.
Take care and big hugs!!!
Hannah
Hannah- I already eliminated all the same foods as you pretty much, I don't eat seafood (never have liked it), I've eliminated dairy, caffeine, chocolate, salt (with and without iodine), egg yolks (every now and I then I have 1 egg with 2 egg whites- but only organic, grain fed hens), all red dyes (i wont eat anything or drink anything with red dye), any processed foods (i eliminated all BOXED foods and fast foods), and I tried gluten free for a month but it didn't make any difference on my labs (although I don't eat breads or pastas either).
I am hoping! and praying! We all know how this Graves journey can take us for loop in life.
I have been reading that some people have to go to extremes in order to feel better, and one lady on another forum even had to re-home her pets. Someone else had to move away from her apartment due to her smoking neighbor, and one guy had to sell his home and move to an area without as many molds. Autoimmune stuff really sucks! I was wondering if my chemical sensitivities would go away if I ablated my thyroid, but there are some people on here who have ablated and are still very sensitive, so I guess I'm just going to keep doing what I'm doing and hope I stay in remission. I hope they find a good cure for this stuff, soon!
Take care and big hugs!
Hannah