WWWI2September 8, 2013 at 5:12 pmPost count: 137
Long story, short. Diagnosed with Graves’ August 2012, put on meds, lots of ups and downs (hyper, hypo, hyper). I was put on a block and replace protocol and changed doctors. She dropped my meds in July 2013. Have been in remission for 1.5 months.
2 weeks ago, symptoms started to get bad again, severe insomnia, heat intolerance, anxiety yada yada yada..and felt just plain awful. So I got my labs done and my doc says “great news, your still in the normal range”. My labs are as follows:
TSH = 0.75 MIU/L Normal range 0.40-4.50
Total T3 = 128 NG/DL Norml Range = 76-181
Free T4 = 1.0 NG/DL Normal Range = 0.8-1.8
But a month ago they were…
August 9, 2013
My TSH was 1.19
Total T3 was 105 NG/DL 76-181
No T4 results provided
She doesn’t want to put me on Methimazol until she see’s where my levels go but I’m absolutely miserable and don’t know what to do. I’ve increased the atenolol, am taking OTC sleeping pills and hydroxyzine for the anxiety. I’m at my wits end, sleeping 3 hours a night.
She admits that this isn’t in my head and the levels could explain my symptoms, but wants me to wait at least another month for levels to be tested.
What do I do now? considering my levels I can’t believe how badly I feel.
Thanks for any input.
also I always thought TSH followed the T4 and T3 level meaning T3 and T4 start to increase and TSH then decreases after a time. but my tsh seems to be ahead or right with my T4 and T3 is that common?SueAndHerZooSeptember 8, 2013 at 9:05 pmPost count: 439
Sorry you’re feeling lousy. I don’t have any advice for you (except maybe to shop around for a new endo in case yours continues to make you suffer longer than necessary).
I had a TT on July 16 and have had my ups and down for the past 8 weeks but lately I’ve felt good most of the time. However, I’m feeling hyper symptoms creeping back in and it depresses the hell out of me. I was so relieved to get rid of those nasty symptoms and I’m already reminded how miserable they can make you.
I’m going to have blood drawn tomorrow (even though I’m not due for over another week) and hope I don’t have to argue with my endo to let me change my dosage. And I fear pretty much what you’re experiencing…. having the levels be within “normal” range and having the doc tell me to ride it out. Easier said than done. Life would be much easier for us patients if our doctors had some first hand experience with Graves. I’m not wishing them ill, but they just have no idea what this can do to our lives and “waiting it out” is sometimes enough to make you jump off a bridge.
Hang in there…. hope you get relief soon.
SueWWWI2September 9, 2013 at 7:33 amPost count: 137
Sue – Thank you for your kind word of support. It sounds like you have a lot to deal with. I’m glad you are getting your levels done sooner rather than later. Are you thinking it’s med levels? Did they remove the whole thyroid or just part? The good news is that if you were feeling relatively well at some point after surgery, the odds are in your favor that you will again. And yes these are nasty symptoms and I understand oh so well about the jumping off a bridge desire.
I’m glad the surgery is over for you but am also aware that doesn’t mean the challenges are over. I really hope thing resolve for you quickly and you can get back to your life, with minimal if any symptoms at all. Thanks again for responding. This process can be very long and very lonely and someone simply saying “me too” means a whole lot.
WWWISueAndHerZooSeptember 9, 2013 at 8:22 amPost count: 439
Hi there, me again.
I got up this morning (REALLY struggled to get out of bed because it wasn’t a good night’s sleep – welcome back, hyper-ness!) and proceeded to go about my morning routine to get out of the house. I was like a furnace and was miserable trying to get dressed. Even with the AC blowing directly on me I felt like I needed another shower. I can’t believe I lived like that for so long because I was so distraught with it today even though I know (or at least hope) it’s temporary. What a miserable way to try to function! My digestive tract also reminded me that things were going too fast, and my anxiety symptoms are in full gear.
I headed to the lab and found that, unfortunately, Connecticut is not one of the states where the lab will provide blood results directly to the patient so I guess I’m at the doc’s mercy to call me in a few days. I certainly hope he’s not on vacation!
Regarding what you can do to make your “riding it out” easier, do you have any anti-anxiety meds you can take for the time being? Or beta blockers? It’s miserable enough we have to go through this but to not have anything to turn to for a little relief is s helpless / hopeless feeling.
I’m still going to call a new endo today to see about meeting her in the near future. It would be nice to know how liberal or conservative she is in regards to listening to symptoms rather than just numbers.
Hope you’re doing OK today…. keep us posted or feel free to PM me or e-mail me.
SueWWWI2September 9, 2013 at 9:35 amPost count: 137
Sue – As you mentioned about liberal vs conservative, I think she’ll work with me (hope at least) but I’m a little more hesitant now. I don’t think she’s wrong, but there appears to be so much wiggle room in the levels that this get’s really tricky.
It’s funny that you mention about being so distraught after just a day of this when you lived with it for so long. I had the exact same thought today and was questioning why I’m responding so strongly after only a couple weeks. I don’t know why this is, but it does make me feel better knowing that my response is not extraordinary.
I’ve mentioned in other posts early on that after 10 years prescribed Ativan and, I spent a very, very long time tapering off of the drug. I wasn’t told it was addictive and I was told it was easy to get off of, both of which were untrue. In fact, I finally finished the taper around the same time I was taken off the antithryoids. As a result, I won’t/can’t take benzo’s (valium, Ativan, Xanax etc) or z-drugs (ambien and her sisters). Although she did offer me ambien.
I take atenolol (beta blocker) for tachychardia, Hydroxizine (antihistamine – Yes I know I’m not supposed to with Graves, but sometimes we have to make choices) for agitation and anxiety and Unisom (yes, another antihistamine) for sleep, but dos not help much except to help me fall asleep.
My current endo will usually call within 24 hours with results (my 2nd endo gave himself a 2 week span to report levels, which is one reason he’s not my current endo). Does your endo wait longer than that to reach out to you?
I really hope they call quickly and can offer solutions to your situation. It is miserable, I’m so sorry after going thru TT to feel you are back to square one (your not but I’m guessing that’s how it feels)
Thanks again for responding. You have really helped me normalize this situation
WWWIHarpySeptember 10, 2013 at 4:27 amPost count: 184
IMO your treatment was pulled too soon, did you have any antibody testing done?
Good to hear you have a better Endo to work with, but as these things go there will be some give and take, try to see if you can get Thyroid Receptor AB’s tested these will confirm if you are heading back to hyper land and maybe you can get treatment sooner rather than later.
TSH (Thyrotropin aka Thyroxine Stimulating Hormone) is produced by the pituitary gland and is the one that tells the thyroid to produce T4 (Thyroxine), so TSH levels precede T3 & T4 levels.
It goes back at least one more step to TRH (Thyrotropin releasing hormone) which is released by the hypothalmus to stimulate pituitary to produce TSH, signalling before this is likely in the CNS (Central Nervous system), various inputs from the body report their status with thyroid hormones and then the hypothalmus responds.
We know antibodies are active in thyroid and pituitary, but don’t really know what there role is, IMO they are a back up system because body cannot respond through normal means for whatever reason, but we do know that they do subside with extended treatment (medical & personal health improvements).
Some, though very few have succesful remission within two years or less, but most will require longer treatment times, in my partners case it was 5 years to get TSH to return to normal and we are into year 7 now and she has been weaning down meds for 18 months.
If you can begin to forge a supporting relationship with your new endo and look towards a longer term treatment protocol, find your sweet spot on the meds and let your body do the healing, this would be good, don’t be too pushy, but don’t be a pushover so there is a balancing act as in any relationship.
Wishing you well.WWWI2September 12, 2013 at 5:14 pmPost count: 137
Thank you for such an informative response. I have just emailed my doctor with regards to the TRab test. Based on my symptoms, things are not getting better. I hope she agrees to the test and even more, based on the results will allow me to begin treatment again sooner rather than later.
I’m finding it really hard to navigate this process with medical professionals. I think she’s a very reasonable human being but without sounding overly dramatic, I’m in pretty good distress and to “sit and wait” feels very unkind. My gut says she may not know what to do for me which is why she offered me Ambien and want’s me to wait instead of just starting treatment again and that really scares me. She’s my 3rd endo and I’m beginning to believe that the problem may be that I have expectations that while reasonable, aren’t realistic based on the current knowledgebase of most endos. I’m just afraid that it’s only going to get worse from here.
Enough about that. Thank you for the response and just maybe, your prompting me to prompt her for the TRab will get me further than I am at the moment. I really appreciate that.
WWWI2KimberlyOnline FacilitatorSeptember 13, 2013 at 1:38 pmPost count: 4279
Hello – If your doctor isn’t taking your concerns seriously, then a second opinion could certainly be helpful. Obviously, we’re not docs here, but I can see how your current physician would be reluctant to start another round of Methimazole with Free T4 so close to the bottom end of the “normal” range. Your symptoms are clearly affecting your quality of life and you deserve a provider who will help you get to the bottom of what is going on – but you definitely don’t want to swing hypO, either!WWWI2September 17, 2013 at 4:21 pmPost count: 137
I wasn’t paying attention to the fact that the T4 was on the low end of normal since my symptoms seem to point to hyperT. thanks for pointing that out (although after googling that now I’m worried about my pituitary gland lol). I get tests in another two weeks and not to borrow trouble, but what the heck would it mean if both my TSH and my T4 continue to dip? Also she’s doing a total T3, not a free T3. Is that problematic?
WWWIKimberlyOnline FacilitatorSeptember 18, 2013 at 3:33 pmPost count: 4279WWWI2 wrote:I get tests in another two weeks and not to borrow trouble, but what the heck would it mean if both my TSH and my T4 continue to dip? Also she’s doing a total T3, not a free T3. Is that problematic?
I suspect this is different for every patient, so your doc would be in the best place to offer an educated opinion. In some cases, TSH can be an “early warning indicator” of overt hyperthyroidism; in other cases, the feedback loop that would normally cause TSH to increase stops working for a period of time (which is particularly common early in treatment).
The latest medical guidance says that tests for Free T3 have not been as “widely validated” as tests for Free T4, and therefore many practices use Total T3. I assume that comment means that it just hasn’t been subjected to testing as rigorous as what has been done for Free T4.
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