[Ski]

#1062347

Hi there,

You are asking the right questions, and you seem to have already read a lot ~ that’s great!

As you mention, the time varies from patient to patient, so it’s hard to know for a certainty. The most important thing to know right now in your blood tests is your T4 level, the actual "main" thyroid hormone that’s running through your bloodstream, because your TSH levels will lag behind. It’s really usually ONLY at this level of treatment that T4 is an absolutely critical number to follow, because of the rapid changes that can happen. For some people it’s gradual, for others it’s sudden, and it’s hard to know who will follow either path, so it’s good to be thinking about this now.

The weight gain is something else that varies among patients, but typically we have lost muscle mass, and the tissue does return, which looks like weight gain but isn’t an emergency. Certainly, a slip into hypothyroidism can also create some weight gain, so a vigilant eye on your levels IS a good idea, especially now. Once levels normalize and stabilize, weight issues typically improve.

Most often we advise patients to keep a list of ALL potential hypo symptoms, and keep track of how often and how severely you are feeling any of them. Different patients experience different symptoms ~ we don’t see every potential symptom in every patient. If you discover that you are routinely feeling 4 or 5 or more classic hypo symptoms very severely, that can be a benchmark to use to go get your blood tested. Do speak with your doctor to see if they recommend any particular time lapsing between blood draws right now, because they have a handle on what your insurance coverage will "tolerate," for instance, so you can work together to get what you need and end up in the best possible position. Knowing sooner is always better, you need time to build back UP the thyroid hormone before you truly feel better from taking replacement hormone.

Once you’ve been confirmed hypothyroid and begun replacement hormone, THAT is when you need to wait at least 6 weeks between blood draws, otherwise it can be hard to zero in on that perfect spot for you. It seems like a long time, and just after you begin a new dose you usually feel up one day, down the next, for a couple of weeks, but then it levels out and you "skate through" to the six-week mark for tests. It is TRULY the best way to handle the process at that point. Remember that you’ll be feeling better all the time throughout, but it may be a while before you can say you have NO symptoms at all.

Let us know how it’s going!

[smj78]

#1018037

Hi there-
I was diagnosed with Graves Hyperthyroid in Dec 2010. I had RAI on Feb 3, 2011, after much aganizing. I thought this was the best option to get on the road to recovery and be able to have another baby.

I had blood work 3 weeks ago, so roughly 5 weeks after RAI. While my numbers were still in the Hyper range, my FT3 was lower than usual and I felt pretty good. I had puffy eyes that even seemed to dissapate.

Well my puffy eyes are back-which I understand that I may fluctuate through this process. What is most bothering me is that I am already gaining weight. I was up a couple pounds when I saw the endo 2 weeks ago, but no biggie. Now, only 2 weeks later and I am up 6 more pounds! I know this is not drastic, but I am afraid of it getting out of control and I am not even in hypO range yet. I have begun to write down everything I eat, I ordered the Thyroid Diet book, and have just today begun a light workout. This is very difficult for me. I am not vain, but I never had to struggle drastically with weight except for after having babies. I was not healthy by any means, but not overweight.

My question is: Is it normal to gain this quickly? How much is typical to gain? Any tips?

Question 2: When are people turning hypO after RAI? I know this can range and I am hearing 2,3, 4 months, but is this the standard?

Question 3: Will I know when I hit the hypO range or can it sneak up on people and not know for a while? I’m hearing you feel cold, weight gain, tired, but will I really know? I’m already gaining and am always tired since I was born.

I have another blood test in beginning of June, but that seems so far away. Maybe I’ll bump it up to mid-April. I’m just afraid that I will be sitting here hyPo and not even know it while I gain a ton and then struggle to hit normal.

[smj78]

#1062348

Thank you.

Just as a reference, as you asked about my FT4. The following are the numbers:
1/13=1.90 (.82-1.77)
1/31= 3.40
Had RAI 2/3/11, then
3/09=3.27

So, it has gone down slightly since RAI. Since it went up so drastically from 1/13 to 1/31, I wonder if it could go drastically low in just a few weeks.

Are headaches a symptom of hypO? I used to get headaches a lot years ago before any of this thyroid stuff happened. They seemed to stop once I had my boys. Now they are back again in full force. It starts in the crook of my neck/head and then shoots up. Maybe it’s just stress related.

I always feel a little better when I come on here. It’s like I feel hopeful one minute and then BAM, I’m worried about it again.

[gatorgirly]

#1062349

Smj, I also am having horrible headaches (5 weeks post RAI with labs in normal ranges last week, stopped PTU today, labs to be repeated again next week), along with a few other hypo symptoms. But the headaches are unbearable. Some days I have one when I wake up, and nothing helps – caffeine, food, more sleep, Advil… I’ve tried it all. I hope they go away once I’m on the hormone replacement and find a level that works for me. Headaches must be the most frustrating thing. They aren’t debilitating like migraines, but I feel miserable and just want to be in my bed, not writing articles at work. Hope you find some relief soon!

[mamabear]

#1062350

smj78, I’m 37 with 4 children. Ages; ds15 going on 16 in a week, ds8(just turned , and girls ages 4 & 6 going on 5 and 7 soon.
My oldest if from first marriage but has known my husband since he was an infant. We married when my son was 5 yrs old and we had no idea that I would wind up with Graves disease.

I see that your ID says 78, for a minute I’ll assume it is your year of birth. So I’ll assume you are about 30 and would like to start to have a family and are scared that time is running out. I will say this from the bottom of my heart and experience…. take time to heal. You will not do yourself or any baby any good if you are not well. Get your levels squared away first before you start to try for a baby.

If you don’t wait you will find yourself upset that you are not getting pregnant on your own. When your body is hyper/hypo it does weird things. My body would not produce good eggs when I was hyper, my estrogen levels were so poor. Ovulation happened but the egg that was produced was poor and wouldn’t take a sperm. I was on PTU and leveled off well very fast and was told to try but found out the poor quality was there. I wound up going to a Reproductive Endo(RE) and was able to conceive, then I figured it would take forever to have another so after I stopped breastfeeding baby at 5months started to try. No one said hey you have to wait at least 6months to try for another, i was on meds and injections and it stank. I did get pregnant when baby was 10 months old, we just had no clue it would happen and were hoping for twins so I didn’t have to continue to do medicines for it.
WIth having am 8 1/2 yr old, an 18month old and a newborn I figured I better hold off and see what happens. They were all a hand full.
Just when I thought I couldn’t take my youngest’s whining anymore, she happened to be my only girl…. I found out i was pregnant on my own!
It was scary and wonderful all at the same time. I have another girl from that and they are all great(the girls still whine tho).
It takes time…give yourself the enjoyment of feeling better before you delve into it.

[Ski]

#1062351

We aren’t qualified to evaluate your lab results, but as long as you can see whether you are above or below the normal range, you can see what the results point to. (Short primer on thyroid hormone levels: T4 and TSH operate as something of a counterbalance to each other. When T4 is high and TSH is low, that indicates hyPERthyroidism, and when T4 is low and TSH is high, that indicates hyPOthyroidism.) At this stage of treatment, as I mentioned, look at the T4 and see whether it indicates those values are in the hyper or hypo range. A recent blood test indicating high levels of T4 is pretty good evidence that you have NOT gone hypo yet, though you may feel hypo symptoms ~ that would be due to the rapid change in thyroid hormone levels, which would be an extremely rare occurrence "in the wild," if you will. Since our thyroid hormone levels typically move very slowly, our body views a radical, rapid shift in thyroid hormone levels as a life threatening event, and so LOTS of weird things start happening in our bodies, and each of us can react in different ways. For that reason, it’s hard to say "yes, this is related," or "no, this is not," but if symptoms continue PAST the point of normal, stable levels, then we typically suggest looking for other sources of the discomfort. Anything that is particularly frightening or could point to other issues (chest pains, for instance) should be investigated with a physician ASAP anyway, because it’s always better to be safe than sorry. If your headaches are debilitating and extremely severe, check in with a doctor to make sure there’s not something else going on.

Remember that thyroid hormone is literally the fuel for every cell to function ~ as a result, imbalance can affect us in just about any area of our body. At this stage of your treatment, it may be best to just EXPECT weird things to happen. ” title=”Very Happy” />

[smj78]

#1062352

gatorgirly-I will be really curious what your levels are next week since you are in normal range at 5weeks??? Is that only b/c you were also on PTU?

I have two children already. I fully understand the need to be healthy before having another. I would not even start until 6 months past RAI (given that I am stabilized). I’m trying not to be too optomistic about that though. Anyone who wants a child would understand the emotional yearning for one though, so it’s a little hard to just accept that I should wait and enjoy being healthy. Given that I say that, I know logically that I do not even want to try uselessly because my body won’t give me one or risk miscarriage. At this point, I’m focusing on today and weight, since this is what is going on symptom wise today.

Thanks for thoughts and ideas. I just got the Thyroid Diet book, so hopefully I will get some useful info there too.

[gatorgirly]

#1062353

I will let you know how my levels turn out when I get the results of my bloodwork, probably Friday or Monday. But yes, doctor thinks my levels were within normal ranges because I was still on PTU. However, before the RAI, even on very high doses of PTU, my levels were always still in "hyper range." I’ve posted here before that my endo has told me I’m the most severe case of Graves he has ever seen. So that’s fun!

I wish you the best with the weight loss. I’m also struggling with the weight gain and how to lose it. I’m forbidden to exercise or drink coffee or do anything that would otherwise increase my heart rate (resting it hovers just below 100), so I’m trying not to beat myself up about the weight gain until I can get back to the gym and back to my normal routine of working out every morning before work.

[ssomogye]

#1062354

i have some concerns about post RAI

My husband had RAI in june of 2010, now april 2011 he is hypo and taking synthroid to maintain. was wondering if there were any suggestions to deal with the graying hair(hes only 24), anger/mood swings (already taking anti-depressant), and especially the memory problems we plan on visiting a doctor the specializes in hormones but was wondering if anyone else had suggestions. please help!

[Kimberly]

#1062355

Hello – Hopefully, others who have had RAI will jump in here, but for starters, I would encourage your husband to start a symptom log that he can bring to his next appointment.

Also, I would encourage your husband to ask for hard copies of his labs at each appointment. Then he can make a note of whether his levels are too high, too low, or within “normal” ranges. The “normal” range for thyroid hormone levels is fairly wide, and some patients notice that they feel better at the top, middle, or bottom of the range.

By the way, one of the presenters at last year’s conference has a theory that thyroid issues in general (not just Graves’) are often connected with prematurely graying hair. This individual has picked up quite a bit of anecdotal evidence on this subject, but has not yet undertaken a full-blown research project. It will be interesting to see the results one day!

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