[NLBatten]

#1058972

Hi guys. DX w/ Graves 2/21/12. RAI 2/24/12. First labs 3/23/12 showed still hyPER (TSH <.008). Wasn't set to test again until 5/9 - 5/23 (6 to 8 weeks). Dr. said no need to see her again for 1 year. Just take labs when she says and she will communicate thru email (which frankly seemed odd to me). Last week or so not feeling well. Low pulse (60), Nails splitting and peeling, dry hair, dry skin, 8 lb weight gain in 8 days, cold intolerable, joint aches. (None of these except the weight gain are normal for me.) I knew those were clearly signs of Hypo so I started trying to get in touch with dr on Monday night. I sent an email as that seemed how she wanted to communicate. No response so I sent another email Tuesday night. Finally a response from a nurse at 4:30 on Wednesday but I missed the call and she said to return the call but to a different dr? I was very confused. I called that dr but they had no idea why I would call them and kept asking who told me to call them? I sent another email saying I must talk to someone. I am leaving Saturday to go to Hawaii for 8 days. Regardless of whether she thought I would be hypo by now or not, I knew I was. I went to my GP today for a different follow up and she had seen my email so she ran the thyroid panel for me. TSH is 7.8. YEP I knew it! Don’t remember T3 and T4 numbers but both said LOW from lab range. Thursday morning nurse from Endo dr did call at 9 a.m. saying endo hadn’t seen results but would review and call me. I stressed the importance as I was going out of town and NEEDED Synthroid. It is now 6:20 p.m. Thursday afternoon and still no call and no script at the pharmacy. I sent another email and I guess I will just show up at the dr office tomorrow afternoon and stay in the lobby until they see me if they have not called by then. So my questions are: 1) Am I overreacting that they haven’t called me back? I have been very irritable so maybe this shouldn’t be that big of a deal.
2) If not and this happened to you, would you consider finding another endo after I return from vacation and before we get into the “finding the sweet spot” game with this doc?
3) If I cannot manage to get Synthroid before I leave, am I going to be ok until I can get back? Will I just be uncomfortable or is it dangerous (especially given 4 airplane flights 2 of which are 6 hours long).

Did I mention I had a severe kidney stone attack Sunday night? Yep still have those and one is attempting to move according to the xray (that dr saw me right away).

Somebody talk me down here. I’m am unreasonably upset, right? Dr does sometimes work late. I have gotten emails from her before as late as 10 pm.

PS – For Newbies, I have learned this. LISTEN TO YOUR BODY. I knew beyond a shadow of a doubt I was HYPO but only from what I had read on this board. My dr. did not tell me what to watch for or when to call her. (I even told her I would be going to Hawaii and wondered if I needed to check before then. She said no.) If you don’t feel right, call them regardless of what the test says. My levels changed that much in 3 short weeks and had I not learned all I could from these boards, I could have been very miserable and VERY hypo by the time it was caught in 3 more weeks (especially given how high it is already).

Thanks all! As always I really appreciate your insight!

Nancy

[snelsen]

#1171288

Nancy,,,,!!!!
1. No, not at all! You are reasonable and you are correct with your concern
2. Maybe yes, consider seeing another endo. If you like this one, have a VERY FRANK discussion about this experience. You need to be heard with a concerned response. This super bad office stuff, and it takes a second to pull up the results on the computer. Wait till you return from Hawaii.

3. I suggest you ask your GP to write an RX for you if you dont hear from the endo If you do not have a satisfactory and concerned response by tomorrow,
Call the gp before he leaves tomorrow Friday ask to hane him her call it in to pharmacy for you.

I agree with you about your concerns (sure you are hypo. It is as hard as being hyper.). Of course we are not doctors, have to say that.

Kidney stone…..did you pass it or did they “fix” it by blasting it?

[NLBatten]

#1171289

Thank you for validating my concerns! It is 3:30 a.m and I cannot sleep so I checked my email and dr emailed at 11:00 p.m. She says start 150 mg Synthroid and has called in script – thank goodness! OK, but she says no need to follow up for labs for 6 to 8 weeks. Does that seem right? Does it take that long for the Synthroid to work or should I be looking for someone who wants to check labs more often in the beginning until we get the dosage right?

Re the kidney stone, I have had 3 “blastings” since last June. Believe it or not they are getting better. Started out with 20mm stone on the left and 15mm on the right. Been pretty quiet for 6 months but because I am going out of town, of course they will rear their ugly heads. So good news is I am down to 9mm on the left and 4mm on the right. The 4mm is actually moving into the ureter tube and trying to pass. She said I can pass a 4mm and if I do pass this one then my right kidney will finally be clean. I will have to have the 9mm on the left blasted in a couple of months, but she needs me to lose weight first. Blasting doesn’t work when you are really heavy (and I am classified by the dreaded words – morbidly obese). I explained losing weight while trying to thyroid stable is going to be next to impossible. She said lets wait a couple of months and see what happens. We want to catch it before it grows to large but no anestesia with unstable thyroid (if possible). In the meantime, I am armed with pain meds and a copy of the xray to take with me to Hawaii in case something goes wrong and I cannot handle the pain. (I have done it so long, I think I can probably manage it if it comes up again. Haven’t had any real pain since Sunday.)

Thank you again! I know I am crazy sometimes, but I agree this is a little out of control. Thank goodness my other dr saw that I was requesting blood test or we would be too late to figure it out before I leave town.

[Bobbi]

#1171290

I realize that with the difficulty getting in touch with your doctor that you are feeling less than confidant with him/her. Nevertheless, it is STANDARD for us to have to wait a minimum of six to eight weeks before checking our blood levels again. My endo prefers that I wait three months, if possible. The reason for this is that it takes at least that long for the TSH levels to catch up with changing thyroid hormone levels. And it is the TSH that our doctors still pay the most attention to. If we do not wait that period of time, what can happen is that you could go on a hormonal roller coaster. The scenario is something like this: we go hypo, we get an (estimated) dose of replacement hormone, we feel symptoms that tell us we are still hypo but we do not wait the eight weeks, and we get ourselves tested, and, yes, the test still shows hypo, so the doctor raises the dose. Then, a month in, we’re feeling distinctly hyper, so we go in, and yes, indeed we are hyper. So, lower the dose again. We still feel hyper a month later, go in…..dose gets lowered…. I’ve been there. Done that. Have the moldy T-shirt. It happened once, early after my RAI. It is much, much better to wait out the symptoms for the eight weeks to be sure that the test results accurately convey reality. The TSH is a type of running average of our actual thyroid hormone levels. And while it makes sense, from a layman’s point of view, to look at the actual levels of thyroid hormone, rather than a lagging running average, there is a very good reason for watching the TSH: The test for TSH is much better at this point in time than the test for actual thyroid hormone levels. It measures smaller amounts of it, accurately. And, apparently thyroid levels themselves can fluctuate up and down more quickly, so the view “over time” which TSH gives helps to protect us from going hyper, hypo, hyper and hypo over and over again.

Another thing I will tell you is that the level of hypo that you have so far experienced is not even close to dangerous. I could feel you panicking. And it is preferable to catch hypo early, rather than to let it drag on. But thyroid cancer patients have to go SEVERELY hypo periodically (or at least they used to) in order for them to have certain tests to make sure their cancer is still gone. Their TSH numbers are astronomical compared to ours when they are going through this testing. (And I cannot imagine how they must feel during this time.) I mention this only to reassure you that having a TSH of 7.8 is not something to panic about. And your doctor’s reaction to it was not irrational. So, even if you feel that the dose of replacement you are on may be too low, even if you continue to feel hypo symptoms, try to wait it out calmly. I do understand that this is hard to do. But in the long run,you will get regulated to the replacement hormone quicker, and that is a good objective.

Be sure to talk with you pharmacist about the best way to take the replacement hormone. It does matter.

[NLBatten]

#1171291

Thank you very much Bobbi. That is exactly what I needed to hear. I just couldn’t get a grasp for how quick this stuff changed and since my TSH changed from <.008 prior to RAI to 7.8 only 7 weeks after RAI, waiting 6 to 8 weeks to check it again seemed strange, but I would much rather avoid the rollercoaster to which you speak. I knew I was a little panicky and frankly I get that way about a lot of things especially when I am going to be away from home for a week. I still think the dr's office needs to work on their communication skills and I may at least ask around about endo referrals, but promise to ride it out 8 weeks. Since it's my first time taking any thyroid hormone replacement, I just hope Synthroid is the right one for me and it works for me. If not, I will worry about that in 8 weeks.

Re appropriate timing of med, dr said in the morning with water at least 1 hour prior to anything else – food, drink, supplements, etc. I will definitely get pharmacists thoughts on that as well. I hadn’t thought of that so great idea.

Sincerely thanks. I really needed to hear that perspective.

Wish me luck in Hawaii and that those stupid kidney stones stay right where they are and remain quiet until I get back!

[Bobbi]

#1171292

I hope you have a fabulous time in Hawaii.

[Author]

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