[linzyyyy]

#1059676

I know the list of hypothyroid symptoms, I was just wondering if anyone could share their personal experiences about going hypo post-RAI.

I had 15mCi RAI 2 months ago, and now I’m just waiting around for my thyroid to die. I can tell the RAI has done a lot already (resting heart rate is WAY down, almost off beta blockers, anxiety is almost non-existant, etc.) I’m always noting the way I feel… if I get really cold I’m like THIS IS IT or if I’m tired, I’m like THIS IS IT. How did it feel when you went hypo?

Also, does everyone eventually go hypo after RAI (if it is successful)?

I get my next labs on Feb. 6th to see what’s going on. My doc and I are both excited to see the next number, since I feel so dramatically better than I did just a few weeks ago.

Thanks for any input.
Lindsay

[Kimberly]

#1176702

Hello – Hopefully, you will get some additional responses from others who have had RAI.

In general, though, the current practice with RAI is to give a “fully ablative dose”, meaning enough radiation to completely destroy the thyroid. So a “successful” treatment, yes, patients do end up hypothyroid. Then your doc will work with you to find a dose of replacement hormone that will get your levels stabilized again.

Hope this helps!

[gatorgirly]

#1176703

I had never been hypo before, so I didn’t really recognize any symptoms except severe eye problems. I was misdiagnosed with allergies and an eye infection before finally finding out it was TED and that I was hypo all in the same week. So pay attention to any changes – big or small – in your eyes, vision, etc.

By the way, this all happened six months/22 weeks after RAI. It took my thyroid a long time to take a hike but it finally did.

[snelsen]

#1176704

It is my experience that TED and being hypo are totally unrelated. People get TED when they have been euthyroid (normal levels,feeling great) for years and years..or months and months. Like anything else, coincidences occur.
Gatorgirly, have you and your docs also considered that the two are unrelated? There is not literature, I don’t think, relating being hypothyroid (which both instances in these two posts, is intentional) to TED. I’d thing the largest correlation one could make is that the incidence of TED is higher in Graves’ people than the general population. It I am entirely wrong in my thinking, knowledge and understanding, please send evidence based references on this topic.

From my own experience, being very cold, being constipated, and having other GI issues, and being unbelievably tired, were the hypo symptoms I had.

They went away with an increase in Synthroid. We had purposely been trying to decrease my Synthroid because my TSH was always suppressed, with accompanying T3 T4 changes. But this experiences, except for the hypo symptoms, is not similar to yours, different situations.
Shirley

[geostyv]

#1176705

I 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

[Kimberly]

#1176706

@geostyv – thanks for the update…and for the afternoon chuckle! Hope your wife’s payback isn’t too bad.

Hopefully, others will chime in here. I’m not familiar with the frequent urination issue, but patients *can* gain water weight while hypO, so your assumption would seem to make sense. This is worth checking out with your doc if it persists.

Take care!

[linzyyyy]

#1176707

@geostyv thanks for the post! I loved your story I hope you continue to feel better and better!

I had a random new endo appt today (I scheduled it 2 months ago when I was feeling insane and dying like 4 days after RAI) and he drew FT4 so I should find out the results tomorrow! Endo was knowledgable but kind of a jerk and his office gave me the heebiejeebies, it felt like a cell! Like put a picture on the wall or something! He seemed concerned that I haven’t gone hypo yet like maybe the RAI wasn’t going to work but I’m like come on dude look at my blood pressure and pulse! (Nurse said my pulse was 64 today.. I feel like that’s lower than my normal resting rate ever was even before graves started, whenever that was.)

I’ve been sick with a bad cold/sinus infection type thing this week which has sucked the life of me (being sick plus taking care of a sick 7month old and a 3 year old is like… Impossible.) but the cold stuff has gone away mostly and today I’ve been feeling cold, irritable and like I’m going to start crying for NO reason (cuckoo!) and just like blah. I hope I’m there so I can just get through this final leg of Synthroid dosing and maybe I won’t have to think about Graves’ EVERY. DAY. anymore.

Can’t wait for that butterfly shaped confetti moment!!! Lindsay

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