[gatorgirly]

#1059352

My endocrinologist’s office called this morning to tell me that my labs done at the end of August came back normal. My TSH is within normal range (1.66) for the first time ever since RAI. It was much higher six weeks earlier, but I don’t feel any different/better. I told the nurse that I would like to repeat the labs again in six weeks. I believe the lab results are correct, but I don’t trust that they will stay normal for the six months that the doctor wants me to wait until retesting or seeing him again. Is that irrational of me? Since being diagnosed with Graves back in February 2010, I’ve never gone more than two months without being tested – and that was only a few times – my usual was every six weeks since my levels tended to be all over the hyper world before RAI and all over the hypo world since.

The nurse kept going back and forth between the doctor and me on our 20-minute phone call this morning. My previous endocrinologist would have just picked up the phone. Actually, I wouldn’t have had this problem with my previous endo. I got a great vibe from this new endo at my appointment but since then, it’s been a nightmare trying to get anyone on the phone. My labs were drawn August 29 and I am just now getting the results today. That’s too long in my book, and that combined with the fact he refuses to retest me or see me for six months makes me think I need a new endo. He doesn’t even care that I’m undergoing major surgery in two weeks which could potentially alter my levels given the physical and psychological stress I’ll be under.

In the end, the nurse said she will mail me a lab slip with copies of all my labs since moving/switching to him, and I can have them done in six weeks and asked, “If they are still normal, will you be convinced?” Wow. It’s not a matter of being convinced. It’s the fact that they are normal for the first time ever and I still feel hypo. I was shocked actually, when she said they were normal. I don’t feel “normal.”

[beach45]

#1174241

Gatorgirly, I hear your dilemma.

I have gone through similar 28 months since start of Graves; almost 2 years on Methimazole and then now 4-1/2 months post RAI; not feeling normal.

I do know that my current endocrinologist told me as I ask a million questions, that once my levels are “balanced” post RAI which I had first week of May 2012, that I will move on to my internist to test me for future; I had been tested while on Methimazole and then post RAI every month (since November 2011) and as I just started Synthroid 3-4 weeks ago and I have been not been feeling well thus far;

Yet, once I am “balanced” which my endocrinologist said can take approximately 6 months to 1 year post RAI, I will not get tested as frequently; in fact he does treat patients every 2 months normally post RAI until the become balanced; then the time in between becomes greater yet I do not know if it would be every 3 months or every 6 months; I know someone post RAI for a few years who just got tested once balanced once a year.

I would think though if you request something and insurance covers it, there should be no problem with your request; I mean I know people who ask for specific blood tests or more frequent blood tests and get what they need; yet not everyone; depends on the doctor and situation.

It sounds like your former endocrinologist would be better to work with. I had an endocrinologist I loved and she left after 6 months working with her back in 2011 to go to another state and I believe if she had still been working with me, I’d not be in the boat I am in right now!

When I listen to what you say and about the surgery and being in range yet still not feeling well, I hear many others stories similar yet not just on this forum. I too got lab results too late after going seriously hypothyroid a few weeks post RAI and it was treated as being oh so casual like I should not be concerned.

I do believe in time we can feel “normal” if we are working with the right doctor; we definitely have to have a comfortable patient/doctor relationship; I am finding some people have a much easier time than others post RAI as in my case with thus far some difficulties and I am only getting there slowly from my own research and being my own health care advocate and stressing things to my doctor(s). It has not been easy; I am sorry you are going through this. Plus I am hearing for some even when balanced it does take a while to feel normal so I am still not sure about all this either and I am told post RAI to give it at least a year to see if I start feeling “normal” even with levels that are supposedly in range.

For me, if I could not get the current doctor to work with me with your concerns you mention, it’s your health, your life… it may not be a bad idea to consult with or move on to a new endo?… best of luck with all this…beach

[Kimberly]

#1174242

No, you are not being irrational! You *know* your body, and you *know* that you aren’t feeling your best, despite what the lab report says.

Is your doc looking at Free T4 and T3 in addition to TSH? Those numbers might be helpful in putting the puzzle pieces together.

Take care!

[Carito71]

#1174243

Hello gatorgirly,

I’m glad your numbers are finally in the normal range. It is very frustrating having to wait so long if you are not feeling well though. Why such a problem getting the labs done? If the insurance pays for it and we pay for the insurance, why are Drs not wanting to run the labs? It is so frustrating. I wonder if it is a power thing. We have heard this so so many times before: “we are all different”. So even if the #s are in the normal range if you are not feeling well, that should be looked at …. because we are all different. I would rather have my #s be a little bit off and feel well than have them be “normal” and feel sick. I’m so so sorry you are going through this situation. 6 months is a long time and anything can change in that amount of time in my opinion. Maybe you can work with your general Dr instead? I have to say that I like my new Endo but one thing that he said last time that I can’t get out of my head every time I think about my next appointment is that he told me that he was going to bring me in for an appointment in 4 weeks. I said “great … that sounds good”. But then he said “which is a lot sooner than I usually want to see people” and he said it in a tone I did not like. Almost as if he was doing me a favor. I like him but I’m still sick and if I need to be seen in 4 weeks, then let it be so. Why the mental game, right? So I hear you … and I hope that you can make arrangements to have your labs ran when they need to be.

I hope you start to feel well soon.

Caro

[VanIsleGal]

#1174244

I get my blood test results online within 2-4 hours of having them done, so I know they don’t take long to test. I don’t know why you waited so long? Can you have the results sent to you? For me, the antibody tests get sent to the mainland (Vancouver) and take 10 days to get results. In the 7 years I have had Graves’ I have always received my TSH, T3, T4 results same day.

Time for a new endocrinologist I think. I have read about and talked to many people not feeling well being hypo, even though they are on replacement hormone. Many of them say doctors aren’t listening to them in regards to how they are feeling. I hope you get back to feeling better soon!

[Bobbi]

#1174245

Please keep in mind, gatorgirly, that just getting to normal levels of hormone does not mean you necessarily feel your old self. We need to be at controlled normal levels of hormone for months in order for our bodies to heal properly from the problems created by too much, then too little, thyroid hormone. We need to regain muscle, muscle strength and stamina again and that takes some work.

I do hope your upcoming surgery goes well.

[gatorgirly]

#1174246

Thanks for all the support and responses. Bobbi, I guess I didn’t realize that – or I did, but didn’t think of it. I think I’ll wait the six weeks and if I feel OK (realizing I may still be laid up from OD), I’ll wait it out another few weeks. I won’t go longer than two months without having labs drawn. I’ll determine if a new endo is the right decision based on how my current endo handles the next set of labs, especially if they are “within normal range” but I don’t feel right.

VanIsleGal – the US is definitely slow in getting another done in the medical world, but my hospital/physicians/labs are all on different electronic health record systems, so nothing gets from one office to another without several faxes and phone calls. It’s annoying but considering how good my insurance is and that I pay nothing for labs, I can’t complain.

Carito – my plan is definitely to start working with my primary care physician once I am settled on a dose. I see her Friday for my pre-op physical, so I will mention this to her then.

Beach – unfortunately, my previous endo is in Florida. The only reason I no longer see him is because I moved to MA and he’s 1,500 miles away…and even if I did have labs sent to him and he oversaw my symptoms and dosage via phone/email (which he offered to do when I first moved and didn’t have insurance or an endo yet), my insurance would not cover it. I live paycheck to paycheck so I am limited to two endocrinology practices covered by my insurance within reasonable driving distance – my current endo and an endo practice within my primary care physician’s medical practice. That may be the route I go.

On an unrelated note, I fell down the stairs Saturday morning and thought it was no big deal until the pain became increasingly worse. I went to the doctor Monday afternoon and found out my coccyx (tailbone) is fractured in two places. One complete fracture, one large crack. I have been in bed on Percocet since then – not how I wanted to spend the two weeks before OD!

[beach45]

#1174247

Gatorgirly, now I remember as I’ve been forgetting of late you shared in past that you moved from FL to MA. I hope that all works out well for you moving forward with the doctors you have up there.

Sorry to hear you fractured your tailbone and hope you have a speedy recovery! Good luck on the upcoming surgery too!

I also like what Bobbi says about needing to be at controlled normal levels for months to start feeling right; I know my current endo said it can take a year. I’ve been so up and down first on antithyroid drugs and now post RAI with 3 weeks on Synthroid I do not know what normal may feel like!

Yet always good if we can find a doctor we work well with who listens.

Best of luck with everything!….beach

[snelsen]

#1174248

Gosh, gatogirly, what a bad break, but literally and figuratively! I am SO sorry.
As I recall, there is not much that can be done for that, is there? Except wait for time to pass? I imagine it is very uncomfortable to sit. You just never know when our life and health can be impacted.

I just had a “simple piece of cake surgery with the plan of lowering my upper eyelids. I am on post op day 7, totally uncomfortable and miserable with corneal abrasions in both eye, which are constantly irritated by the incisions (and maybe the sutures) on the inside of th eyelid. Lids are swollen, and I a miserable.

I hope all of us can meet some day. I am going to San Diego for the conference.
Shirley

[mvk]

#1174249

Gatorgirly,

I hope your pain subsides and you start feeling better soon. Bobbi, thank you for the comments about our “general” thyroid health and the timeline. My TSH was 72 a couple of weeks ago and I really was not feeling well at all. Endo wants my TSH at around “2”. I am 4 months post RAI. My endo increased my dosage of levothyroxine to .1 (from .025) so I’ve been on that dose for two weeks now. I can’t say I feel anywhere near “normal” but some days, like today, I question if I even know what that is at this point in my life. I feel somewhat better I guess. I may go draw labs next week if I don’t see any changes soon. I will say my digestive system is working better. I know that is an improvement!

mvk

[gatorgirly]

#1174250

I sure hope it’s not a year before I feel like myself again (thyroid-wise). I will see how I feel after surgery and determine if I can wait two months for labs.

Shirley – nothing but rest, ice, and painkillers…the latter of which I am not crazy about because I’ll be on them for at least a few days after my OD. I have a special coccyx cushion (they no longer use the doughnut cushion) but it is painful to sit or bend at all, let alone sit all day at work. So sorry to hear you are still feeling lousy. We are a sorry pair!

Unfortunately, with my OD exactly one month before the conference in San Diego, I don’t think I can hack it. Even if I’m fully recovered by then (wishful thinking), I won’t have any extra time off to use as our time off calendar is from July 1-June 30 and I have at least one, if not two, more eye surgeries up ahead in the next nine months.

[snelsen]

#1174251

in my experience, the OD was not painful, I took a couple pain pills. Hate them. I am convinced that I did not have any appreciable pain because I used cool packs on my eye almost continuously, AND I had my HOB elevated for almost a week. Makes for lousy sleeps, but you don’t sleep well, anyway. If the swelling gets away from you, I think that is when the pain is significant.
You’re right. You have several surgeries coming up on your dance card. As I have said many tmes on this forum, the strabismus surgery was marvelous.
I had some kind of complication with all the rest of’em. Including the upper eyelid surgeries, I am on post op day 6 now.

[Carito71]

#1174252

gatorgirly wrote:

On an unrelated note, I fell down the stairs Saturday morning and thought it was no big deal until the pain became increasingly worse. I went to the doctor Monday afternoon and found out my coccyx (tailbone) is fractured in two places. One complete fracture, one large crack. I have been in bed on Percocet since then – not how I wanted to spend the two weeks before OD!

Sorry to hear about this. I hope you feel better soon.

Caro

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