Forum Replies Created
-
AuthorPosts
-
in reply to: Hypo and Hyper at the same time…sigh #1183186
I switched to a different endo that my insurance would not cover so it cost me about $250 a visit but it WAS WORTH IT. She is a much better endo with a real background in thyroid issues. When I come to an office visit her first question is, and always has been, “how do you feel”? She always reads the levels in the context of how I am feeling as it should be (coming off RAI a couple of years ago).
No, you are not overreacting, if you want a second opinion and you have a rational basis for needing one (which it sounds like you do) then get it. I am glad I did and love my endo.
I rarely post, but I had to post a response to the question about dreams/sleep —- for me YES! About 8 week after RAI I went superhypo (TSH around 55) and started having crazy dreams — like hallucinations. Normally (and this is true now that I am leveled out) I sleep like a brick through the night, but that was not true between being superhypo and the about 4 months dosage adjustments to be leveled out.
Here’s the thing … I did all sorts of looking around on the net, read this forum daily, and searched it for info about Graves when I was going through this. I happen to be a man with Graves so I spent a lot of time looking for info about how men respond to treatment. Either way — in all my searching about Graves I never read anything about dreams or sleep after RAI/Surgery (I am sure it is there and I missed it). However, I did mention this to my endo (who is awesome) and she said that when someone is “frankly hypothyroid” it is not uncommon for them to have disrupted sleep and that, in fact, sleep can be used as a diagnostic criterion for hypo. That is the only time I have ever heard anyone mention it until I read your post.
Any, not any real “new” info here, but I wanted to at least post that you are not alone having sleep issues and at least one endo knows about a connection between sleep and hypo. I hope this helps a little bit. Certainly there is something in the med literature out this that I never found about this connection.
For me it was probably the worst part — I was exhausted because of being hypo and that was compounded by not being about to get good sleep during that period.
Take Care
GeostyvSo in these sorts of situations it is always congratulations — sort of, right? … I think I know the sense of relief you feel, as it was how I felt about two weeks ago. After having been on 125 mcg for two weeks I feel better than I’ve felt in years.
Good Luck! and enjoy the butterfly-shaped confetti!
geostyv
in reply to: Personal Experiences Going Hypo Post-RAI? #1176705I keep meaning to post the rest of my story but I keep getting side tracked and then see post like this or the one from AzGravesGuy last week and feel like I should jump in because I am going through the same thing, or at least went through it recently.
Where I am at …
I went hypO sometime between Dec 11 and Jan 2 after having RAI Oct 11. On Dec 11 labs said I was more hyPER than at any point before that and boy-o-boy did I feel like it. Then, around Christmas, I felt good and I started going back to the gym and was OK. On Jan 2 my labs showed slight hyPO but I misheard the nurse on the phone I thought I was normal so I went on thinking at least I was headed in the right direction.
During this time I did start to have HyPO symptoms, though. I was gaining weight, I was a bit constipated, and I was more fatigued than before. However, I was still going to the gym and work and otherwise having normal days, but with 2 hour naps in the afternoon. Interestingly, I was having paresthesia (tingling in my hands) when I would wake up and I was also having strange dreams. Turns out hyPO can mess with your brainwaves (delta and theta waves), apparently and affect not just how much sleep but apparently what goes on with your brain when you sleep. I would have to dig up the site where I read that and it may be bunk, but I can tell you my dreams were very different for at least two week compared to what I am used to experiencing and this is symptom of hypo that I haven’t really heard anyone talk to much about, other than that one site, so it may be unrelated.
Meanwhile I was going more and more hyPO and on Jan 22 had labs with .007 FreeT4 and a TSH of 54.3 — ding, ding, ding — we have a winner!!! Let the butterfly-shaped confetti fall.The day I had those labs and the day after were the worse. I was able to function, but I was eating a lot of sugar to do it. I taught a two-hour university seminar and apparently it was fine, but my wife says my affect was off that whole week. I remember thinking that I shouldn’t be driving because my reaction times were slower than I knew they should be and I remember being irritable. I would fixate on something a little annoying and get myself all up in a tizzy about it.
The day after the labs, when I got the numbers, they set me up with 125 mcg of synthroid and within a day or two I felt better. I had my first dose last Thursday and here is how I would describe the progression:
Wednesday — walking dead, but still able to function, like a bad flu (minus the fever and chills) — body aches and fatigued easy
Thursday — better but still body aches, cramps in some long muscles (legs and back), not 100%, still real flu-like, screaming headache
Friday — better still, was able to clean the house for about 20 mins at a time then rest and watch a Frasier rerun, then clean, then watch a Frasier rerun (yippie streaming Netflix:), didn’t feel like flu anymore, felt like I had been drinking a lot, like I had been on a real bender the night before, achy and tired, but OK
Saturday — still coming off the bender, but OK, took the dogs for a walk with my mother, got tired easily but felt OK
Sunday — now it is more just an ache in my lower back, like I worked out too hard
Monday — fine, really, but still a little tired, and I’ve built up the sick hours for this so I am going to use them, stayed home, more Frasier
Tuesday — about 75%, using some sick hours
Wednesday — back to work, did a full day, taught another seminar, fixed my mother’s thermostat after work, purposely let my wife mess up my sister-in-laws taxes while they worked on them at the kitchen table that night, then, with glee offered to get my sister-in-law a bigger refund if she would bring me a cookie home from work later in the week — H and R Geostyv to the rescue.Sister-in-Law happy with the refund
Wife annoyed I let her go on making a mistake — I explained that I am a sick little bear and clearly not in my right mind she has forgiven me, but I am sure payback is in offing
So those are my experiences of the last week. The only thing I would add and ask anyone who is still reading this is this — is it common to pee a lot after starting synthroid? Yesterday I was peeing every half hour on the half hour. I was watching the clock, this is no exaggeration. My constipation resolved itself within a day or two of starting synthroid, but I am not sure what to make of the peeing other than maybe some of the water weight post-RAI I gained is moving.
Lindsay, if you’re still reading all this (and how could you not, the prose is so gripping :)I would say too that my heart rate and blood pressure went way down within the last month, however, before that it went way up post-RAI but pre-hypO and my cardiologist actually upped the beta-blocker and was fairly concerned. The BP and HR going down was one of the first signs that things were moving the right direction. My cardiologist asked me to monitor my heart with one of those wrist heart rate/BP monitors that I bought at local discount giant, they are fairly inexpensive and more convenient than the typical blood pressure cuff.
Feel free to PM me if you want, otherwise that’s my story of “escape to hyPOthyroidism” — check it out, ma, I am sick that’s how I know I am better
geostyv
in reply to: Well, here goes! #1173567AZGravesGuy,
I’ve followed your post with great interests over the last few months. I’m a 37 year old man who had RAI October 11. So our timing is sort of along the same timeline. I have been much less diligent about posting my progress but I have kept up with the forum. What happened to me was not real consistent with what I had read about and might be something similar to what is happening to you.
Basically, after I had the RAI I felt pretty good. I still had some of the hyper symptoms (sweating, going to the toilet a lot) but the heart pounding was less of an issue (though I was still on beta blockers so that surely helped). By mid November I felt OK and my wife said I was much “lighter” than I had been before. I assumed I had missed the transient onset of HYPER symptoms post-RAI, consistent with the thyroxin dump.
Within a week or two later I was a wreck. By Thanksgiving my levels were back up. The endo palpated my thyroid, looked at my levels (which I had diligently done every 3 weeks) and said I had thyroiditis due to the the RAI. This was over a month from when I had the RAI. From Thanksgiving to Dec 11 my levels only went higher still. By mid-December I was a wreak again and we were (me, my wife, and the endo) starting to wonder if the RAI had worked.
Then it did. On January 2 I had labs that showed my lightly hypO with a low, but for-the-first-time-in-a-long-time-normal-TSH. I thought they said over the phone that my FreeT4 was 1.4 (normal on that scale) and imagine my surprise when I went to have another 3 week blood draw and asked for paper copies of my labs (which, I’ve discovered you should always do) and saw that it was actually 0.4 (hypO) on that scale and had misheard the nurse over the phone 20 days earlier.
Anyway, the labs taken on the 22 of January showed .007 FreeT4 and a TSH of 54.3. Yep, it worked alright and now I am on .125 synthriod.
I guess all I am saying is that there was a long time for me between the RAI and the “thyroid dump,” thyroiditis, and hyper feelings and, I too, had begun to contemplate whether the radiation therapy worked and if I would have to do it again or have surgery or just go nuts.
I know that you’ve been at all this longer than I have and all I can do is share my story, offer support, and suggest that, at least in my case, there was a month or so lag between RAI and hypER symptoms so maybe that is the case with you, too.
Wishing you, and others out there riding the Gravy Train, support and a return to good health.
Geostyv
in reply to: Life After RAI–adventures of radioactive man! #1174678Well, it has been five weeks since my RAI. I had my follow-up blood draw Tuesday and an appointment with the endo next week. I have been very tired and achy. Despite the scale at the gym saying I have lost a bit of weight, I feel very bloated. I haven’t been able to comfortably wear my wedding ring in the last week and have even bought some larger slacks for work. I just don’t feel good and energy seems to come and go.
This week I have even been having some palpitations and tremors, as though I was going back to being hypER. At night I have pounding heart rhythm, though I am still taking my betablockers. It is nothing I can’t handle, but still not great. Some of my work colleagues have started to notice that I look tried.
I seem to be bouncing between hypER and hypo. Yesterday at noon I was talking and talking and excited (my wife side I was bouncing off the walls) and then at 5:30 I came home and crashed. I haven’t been able to sleep well and woke up this morning achy.
There’s not a lot to say. I am working very hard and that may be contributing to my poor energy level. I don’t seem to be sweating, as much as I was before, so that is an improvement.
I don’t feel horrible, but I don’t feel good either.
The cat is still mean — he has no sympathy, but my wife does and that is great.
Can anyone tell me what is “normal” post-RAI hypo? I know that it varies a lot from person to person, but I am curious about anyone else’s experiences.
Thanks!
geostyvin reply to: Life After RAI–adventures of radioactive man! #1174677Bobbie,
Thanks for posting. That is exactly the kind of thing I wanted to know. Even before we scheduled my RAI we set up a post-6 week appointment. The endo said he wanted to get my TSH to 15 (not sure the range or units) so he would know the RAI and really worked. I have a good deal of confidence in him; he is engaged and compassionate. It is good to know that there shouldn’t be too much in the way of hypO cliff so long as I follow up with him — which I definitely plan to.
On the hypO front, I did go back to the gym for the first time since I had this done and lifted weights. The exercise felt good and I made a point not to over do it, but my endo said it would be OK. Overall, I feel pretty good!
Thanks for your reply.
Geostyvin reply to: Life After RAI–adventures of radioactive man! #1174675Hi Everyone,
Well, is has been just over two weeks since I did RAI. I have felt pretty good so far. I have a heart palpitation everyone once in a while and I am still taking my beta blockers, but on the whole I do feel better. Sort of peaceful in a way. There has been a lot of work stress in the last week and my wife has been suffering from peri-orbital cellulitus (sp?) so she has had to be home for a few days and I’ve had to juggle work to take her to the doctor. Her doc prescribed oxycodone today for pain, she is really hurting. Meanwhile we are in the middle of trying to get some of my mother’s property, which is in another state, through closing and sold. The RAI seems to be the least of my worries right now!
I guess if I could say if I feel bad at all it would be that I am a little tired and my knees and hips have been a little achey. Both these things could be stress and the changing seasons or they could be the hypo — who knows?
I am worried about the eventual cliff I will drive off where I will go hypO and not be able to function. There are a lot of people who depend on me being able to do my job and I worry about them. I teach and have a lot of students who paid a lot of tuition and there is no one to cover my subject if I am out for a day or two. I have administrative responsibilities, too. People at work who know have been understanding and maybe I am being dramatic. Still, work is a concern.
The cat is still evil — he has not been understanding.
On the whole feeling good and at peace with my decision.
geostyv
in reply to: Average mCi dose #1174795In one of the YouTube videos posted by GDATF from a conference a professor at UM Ann Arbor discussed a specific formula that was, i believe, a multiplier (.2, but I am not sure) x size of thyroid divided by percentage uptake. In other words, the lower your uptake the higher your dosage. I had a low uptake of about 30% and a small goiter so my dosage was 21.6mCr. If you had a small goiter and a high uptake you might have a lower dosage. It makes sense if you think about what the uptake is and what you are being given, i.e. iodine. This video is YouTube along with a few others posted by GDAFT.
So the average dosage is really a function of the average goiter and uptake — I think!
in reply to: Life After RAI–adventures of radioactive man! #1174668Well, it has been one week (with 15 mins.) since I took the magic pill. My wife’s “devil” cat is still out of the house, which is a bonus, but he’ll be back soon.
I felt OK on Tuesday. I had my last day off work and I did a lot of work in the yard — digging up plants, planting new plants, and generally getting the yard ready for fall. I worked hard and felt great.
The next day was my first day back to work and I felt lousy. I was fatigued and moody. I sweat through my clothes and was a little “jittery” all day. Nothing that was unmanageable but definitely not as good as I had felt the day before. I definitely feel like I am having a mix of symptoms — some hypER, like the thyroid dump, and some HypO.
I know my Free T4 (at the top of the normal range) was never that high since I was still subclinical so I wonder if that will make me go hypO faster or not. Any ideas?
That’s the update … mostly normal but definitely more fatigued than normal.
geostyv
in reply to: Life After RAI–adventures of radioactive man! #1174671Just checking in … it has been three days since my dose of radiation. I really don’t feel any different at all. I haven’t had any neck tenderness or any hyperthyroid symptoms, though I am still taking my beta-blocker.
I played 2.5 rounds of golf by myself. I walked 9 holes twice (2.5 miles each with 10 pound bag). I worked in the yard and then just tried to relax. I feel like myself. In short I am trying to enjoy the time off work because I know that the eventual hypO thyroid crash will come.
I have my dog home now. He was sent away for a few days but now is home – yippie!! I am still making sure to keep him sleeping on his pillow, a good 15 feet away from me. He is an old dog and likes sleeping so it works. My wife’s cat is still at her sister’s house and I hope that maybe he’ll find a new home there. He is a mean cat.
Hoping all is well with everyone!
geostyvThank to you both for your comments. I read the guidelines last July that were posted on this website and they were, without a doubt, the best, most informative things I’ve read about Graves’/hyperthyroidism. It was clear, easy to read, and very informative. I would like to thank this board for posting documents like these. I have been rereading it this morning and thinking that this is the frustrating part of the disease for me — I have Graves and Hashi antibodies, but I am lucky that it is not effecting me too much. However, the solution is just as drastic as if I were in very bad shape clinically. The endo says that this is a disease that is up and down and that I might go into spontaneous remission considering my labs, but that I will also be back — the genie stays in the bottle only so long.
My wife and I are both in professions where there is a premium on getting the “right” answer and we’ve both realized with this disease, and with the treatment opinions, there are no right answers. I guess that is the scary part. Once that pill goes past my lips Thursday there is no turning back — I don’t mind admitting being scared, and despite having devoted myself to knowing about as much as a lay person can about these conditions, being confused as well.
These forums have been the best source of information out there. I’ll keep everyone posted on my RAI journey, too.
-
AuthorPosts