[amosmcd August 7, 2013 at 9:16 pm Post count: 231]

#1180522

Hi, Sue–
I used to work for a medical insurance company way back in the early 80’s, so I know how picky they can be. I also don’t get intimidated by them denying stuff. So that’s why I’m shrugging this off so easily. I thought that if the doc okayed it, they would allow it, but guess not. I think if this had happened last week I would have blown a gasket!! Thanks for being angry for me!

I got a lot of yard work done. Need to water my potted plants but tired now. But I gotta do it. It won’t take long. Hopefully wearing myself out will help me sleep tonight!

I hope my energy stays up there til this weekend–I have more stuff to do in the garden.

Amy

[amosmcd August 11, 2013 at 2:37 pm Post count: 231]

#1180523

Well, my energy level has dropped again, starting Thursday. Now back to feeling sluggish. Not feeling too anxious–I think the Atenolol has helped with that. Yesterday I went into the city with my son and we didn’t get there until almost 3pm because I was moving so slow. Lasted about 3 hours. I felt really wiped and it seemed like everything was kind of glowy. Not sure why that was. I’m starting to cut back on the Atenolol. I was up to 37.5mg a day, now going back to 25mg to see what happens. Maybe with the drop in Levothyroxine I don’t need as much, and that’s why I’m feeling sluggish. It’s all a guessing game.

I did go for a 2 mile walk yesterday with my son after we got home, just to feel like I did something useful. Started falling asleep in my recliner at 9pm, went to bed, and then couldn’t fall asleep until after midnight. Didn’t get out of bed until 12:30pm. I do not call this living life. It’s pathetic.

I am just trying to hang in there until things get smoothed out. Which I know won’t happen for weeks if not months. Okay, enough whining. It’s 2:30pm, and I need to get dressed and do something.

Amy

[SueAndHerZoo August 11, 2013 at 4:01 pm Post count: 439]

#1180524

Yoohoooo – can I throw some of your own words back at you?

“Patience is over-rated. I think a good scream and crying helps more than trying for Zen moments, when your thyroid levels are not yet stable.”

So don’t apologize or feel bad for what you consider “whining”. You’re not whining, you’re sharing and it’s so very helpful to others. PLEASE remember that. Us other TT patients want and need to hear what the experiences of others are and we can support and learn from each other.

Isn’t it odd that it seems to disappoint worse when we have a bad day after having a few good ones? When we feel consistently yucky it’s one thing but when we start to see a light at the end of the tunnel and then the light dims again, it hurts twice as bad. It really shakes our faith and confidence and makes it harder to keep a positive attitude.

But you had a good run and you WILL have more, and then they will run together into your new, healthy and happy lfe. What doesn’t kill us makes us stronger…. we’re going to be damned strong troopers!
Sue

[KimberlyOnline Facilitator August 12, 2013 at 10:44 am Post count: 4294]

#1180525

@Amy and Sue – Wishing you both all the best…and hoping that this rollercoaster ride finally lets up as you settle into a “new normal”!

[Raspberry August 12, 2013 at 1:50 pm Post count: 273]

#1180526

amosmcd wrote:

TSH 0.823 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 0.88 (0.57-1.25)

Actually these are still low-ish thyroid numbers – only your TSH sinking looks hyper and that could be due to antibody activity alone. It’s likely the increased atenolol that’s helped with your symptoms. There’s an official document somewhere that says that doctors should determine dosages (of methimazole or replacement) by the FT4 and FT3 not the TSH for Graves’ patients. Being hypo, even slightly can cause sleep problems and palpitations, it does for me. I don’t start feeling even slightly decent until my FT4 is above 1.1 . Please consider that the reduction of your levo may be the exact wrong thing to have happened and look into a second opinion if you are still feeling bad. Most people with no thyroid at all, full TT, are on higher doses than 50mcg. I’m sorry all this is so rough for you and hope you and your doctors can work out a dosing scheme that works for you soon.

[SueAndHerZoo August 12, 2013 at 4:19 pm Post count: 439]

#1180527

Hi there.
I was just re-reading this thread to try and keep up with all the Levo dose changes you’ve been through. I kinda hope I’m reading it wrong but it seems like you have been on three different doses in just a matter of 2-3 weeks??????

I think you started at 75, then they raised it to 88, and then, instead of dropping back down in a small increment, they plummeted you down to 50 mcg????

Lord knows I’m very new to this end of the disease (been hyper for years and just recently had TT) but none of those numbers seem to make sense. 75 mcg is fairly low so I could understand the change to 88, but then to drop way down to 50? For someone who has no thyroid????

Today was my first day back at work and I was chatting with a female co-worker (I just found out she has been hypo since giving birth a few years ago) and even though she has her thyroid, she’s on 112 mcg per day.

I hate that you still feel crappy and it scares me that you seem to be on low doses but what REALLY bothers me is how quickly they change your dose. Aren’t we supposed to give each new level about 6 weeks?

Sorry to probably confuse and sadden you more, but I really feel uncomfortable with the treatment you’re receiving.

Any chance you can see an entirely new endo and start fresh?
Sue

[KimberlyOnline Facilitator August 13, 2013 at 11:30 am Post count: 4294]

#1180528

Everyone’s situation is a little different, so I think the important factor is whether you have confidence that your doc is taking your concerns seriously and doing the right thing to move you towards getting labs stabilized. Certainly the preferred situation is to wait several weeks before making a dosage change on replacement hormone (since it takes time for the meds to build up in the body), but as I recall, Amy was feeling really unwell, which led to the dosing changes.

[amosmcd August 14, 2013 at 7:41 pm Post count: 231]

#1180529

hi, Raspberry, Sue and Kimberly!

I’m feeling better on the 50mcg. I did have to start cutting back on the Atenolol because I was getting a little dizzy when standing up and my BP was getting too low. (84/50). So I’m on 12.5mg of Atenolol at night only. Still not feeling a ton of energy, but the palpitations are better. I get my labs drawn on Monday. I’ve always understood that dosing should not be based on TSH, but I was having problems and my FT 3 & FT 4 had not significantly changed since before surgery. I was feeling great before surgery. Only my TSH has been changing. So my endo is trying I think to treat the symptoms rather than the numbers. I was really hard to control on ATDs, lots of swings up and down for months before I finally settled down. Now it’s like I’m starting that whole process over. Very frustrating. I feel like I’m driving some of the changes by advocating for myself when I’m feeling crappy. I would hope my endo would over-rule me if she felt I was being incorrect, but she’s open to my input. I see her on the 27th of Sept but hopefully if my labs are whacky still and I’m still not feeling good, she will talk to me on the phone before that.

I’ve been on 4 doses of Levo since surgery. started at 100mcg post-op. Was hyper on that, so dropped to 75mcg. On that the longest and felt bad at that dose, so I was upped to 88mcg, which gave me major anxiety, palpitations and elevated HR. The on-call doc dropped me to 50mcg and it was decided Ill stay on that until my next lab results. I’m not thrilled with the huge drops of 25mcg at a time, and I will talk about that. It was understandable this last time when I felt so bad, but now wonder if going from 100mcg to 88mcg would have been easier. It’s hard to second guess this now. I have a hunch I might be one of those patients who needs to alternate dosages on different days.

I am so happy that you all care enough to worry about me. It’s made me feel so much less alone going through this.

Amy

[amosmcd August 30, 2013 at 8:18 pm Post count: 231]

#1180530

Hello again! Today it’s been exactly 4 months since my TT. What a rollercoaster I’ve been on! Here are my labs drawn this past Monday:

TSH: 7.531 (0.34-5.40)
FT3: 2.5 (2.2-4.3)
FT4: 0.69 (0.57-1.25)

I’d been on 50mcgs of Levothyroxine for 3 weeks. I did feel good for a few days off and on, but mostly did not feel great. However, it was much better than feel bad AND feeling hyper. Still, I’ve been very draggy, very unmotivated, hard to wake up in the morning, not sleeping well, and starting to get heart palpitations (which I’d never had being hypo before, but I’ve never been this hypo!)

So now my endo wants me back up to 75mcg where I did not feel good, but is having me start out at 62.5mcg (half of a 125mcg tablet) until I see her on 9/27, which I was really happy to hear. I would have refused to just up right to 75mcg from 50 after so many hard swings on my labs. I’ve had to miss a couple days of work because I felt so exhausted. I just started on the 62.5mcg this morning. It took til yesterday to hear back from the endo’s office.

I would have thought that 4 months out I would be feeling a lot better than this, still so far from how good I felt before surgery, but I’ve accepted it will just take me quite a while to find my sweet spot on the meds. I’m actually glad my labs are now so whacked out, because it matches more with how I feel. Before they weren’t so far (aside from the TSH) from where I was pre-op. I’m much more willing to go longer between lab tests if I have smaller dose changes than when I had the bigger changes. I want to give my body time to adjust, and obviously it has not liked the big changes.

My weight has remained the same, although I’ve gained a big of fat and since I’m not walking as much as I use to, I’m sure I’ve lost muscle mass. I’m still skinny, so I’m not complaining, but I’d prefer to have muscle over fat! I signed up for a 5K to walk with a friend, which I could easily do but now it will be a challenge. I’ve only been walking 2 miles at a time these days.

My brain is not functioning well. Cognitively I feel really snowed. I know it’s a combination of menopause and thyroid, and I’m sure it will get better eventually. I’ve been forcing myself to get out of the house and do things on my days off or else I’d just sit around and nap all day. Tomorrow evening I’m going to a sports bar with my brother to watch the UW Huskies beat the crap out of Boise State (since they beat us last year) and the next day I’m going to a minor league baseball game with my oldest son. I took Labor Day off so I can rest that day. The weekend before I went kayaking with my brother and to another baseball game with a friend. Trying to have a life.

My incision is healing really well. The swelling is 95 percent gone, and it’s just a thin pink line. I still can’t sing, but it doesn’t bother me.

So I’m trying to be positive, even though it’s hard right now. The son who’s going to the baseball game with me has been very depressed (he’s on the autism spectrum) and I’ve been trying to get him help, and at times it’s overwhelming, but it helps take my mind off of myself. He’s on a new anti-depressant so I’m hoping he’ll feel better soon. I get help from my younger son (they both still live at home) so that helps.

That’s my update and I’ll update again after I seen my endo at the end of Sept.

Amy

[Gabe August 31, 2013 at 5:57 am Post count: 182]

#1180531

Hi Amy. At least your labs are matching how you feel. Hopefully the smaller dose changes will help you find your ideal dose. I really hope things turnaround for you soon. I also wonder if my general bad feelings at times are more related to the menopause then the thyroid or maybe the combination of both is to blame. It just sucks either way.

Keep getting outside and enjoying what’s left of the good weather.

Hugs,

Karen

[SueAndHerZoo August 31, 2013 at 10:30 am Post count: 439]

#1180532

Hi Amy…. so glad you updated because I’ve been wondering and thinking about you.

It is really good news (amazing how we can find things to celebrate in what other people would think are negative things) that your labs are now more closely matching how you feel. Validation is always a wonderful thing.

Congratulations on your positive attitude and your determination to get on with your life in spite of the way you feel. That is incredibly hard to do so I really applaud you for that.

Perhaps the worst is behind you and the good stuff will start to happen soon. Long overdue, right?

Stay in touch.
Sue

[KimberlyOnline Facilitator September 3, 2013 at 7:50 am Post count: 4294]

#1180533

Hi Amy – Wow, that must be really difficult to try and get you son the help that he needs when *you* aren’t feeling well yourself! Hope that you see some relief from this dosage change…and that you both enjoyed a bit of a break at the baseball game this weekend!

[amosmcd September 27, 2013 at 9:28 pm Post count: 231]

#1180534

Well, it’s been 5 months since my TT. Things are getting a little better. I’m still hypo with my TSH a little above 7, although it’s dropped a little since the last set of labs. T3 and T4 need to come up a little. I definitely feel hypo. Not a lot of energy, feeling cold, heart palpitations off and on. Really hard to get out of bed in the mornings. I’m on 62.5mcg of Levothyroxine, and even though I felt crappy before on 75mcg of Levo, I obviously have to increase my dose.

My endo and I both believe that a lot of my previous issues with dose changes were because they were too much at once. So this is just a 12.5mcg increase. I feel like my body is finally leveling out and the labs are more a match to how I’m feeling. I’m fine now with waiting 4 weeks between lab draws instead of 3. This is going to be a slow process for me, but I have finally developed patience. I would like to have more energy, but I’m at least not freaking out about it like I was earlier in my recovery.

I’ve signed up for another 5K walk at the end of October, and plan to do one every month to motivate me to keep walking. The Blerch is alive and well, unfortunately.

Oh, I forgot to mention that I’ve started gaining more weight, which I don’t like. It’s only a few pounds, but I’ve been feeling really hungry lately and especially craving carbs. I’m at a perfect weight right now and want to stay where I am. Hopefully bumping up my Levo dose will help with that. I do look less gaunt than I was when I hit bottom with my weight loss a year ago, so I’m sure I’m healthier. I’m also supposed to get a Dexascan this month since I’m now slender and post-menopausal. My gyn recommended it and my endo just ordered it. Hopefully my bones are healthy.

That’s it for now. Again, I’ll probably not be here on the forum too often in the near future, but hopefully I’ll get back here before my next endo apt and labs.

Amy

[SueAndHerZoo September 28, 2013 at 9:56 am Post count: 439]

#1180535

Sorry – I asked for an update on you in your other post before I realized you already provided one here. Thank you for that.

I think you and your doc are correct that the previous problems were largely due to too severe dose changes, too fast. Hopefully these more gradual modifications will show positive results.

I, for example, dropped from 125 to 112 about 2.5 weeks ago and I am definitely feeling the difference, and not in a GOOD way. Even though I have LOWERED the Levothyroxine, I have been very anxious and antsy for the past week…. hate it! But from what I’ve read on this forum, any change in meds, in either direction, will cause fluctuations and not necessarily in the direction we would have expected. I thought I’d be calmer with a lower dose, not MORE anxious! Hopefully next week things will settle down and level out.

Stop by when you can, but I understand why you can’t. Just know we’ll be thinking about you.
Sue

[ChristinaDe September 30, 2013 at 3:55 am Post count: 115]

#1180536

Dose changes can be a little rough for me too. I always feel worse for a couple of weeks, even when going in the right direction – and usually don’t feel a complete end to the physical & mood symptoms for 3 or 4 weeks. I think that’s about how long it takes my body to level off from the change. MOVING levels for me are a bit more difficult than WRONG levels. But once they stop moving, then I stabilize. Hopefully I just passed through my last Synthroid increase. Stable always feels so much better. Stable & correct even more incredible!

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