[Kimberly]

#1061073

Hello – Hopefully, you will hear from others who have had RAI, but at our most recent conference, one presenter mentioned that every 6 weeks was a good timeframe for adjusting thyroid hormone replacement. So if you continue to feel unwell, perhaps your doctor’s office can at least get you in a couple of weeks sooner.

Take care — and keep us posted on how you are doing!

[Bobbi]

#1061074

The hormone replacement HAS kicked in, Renee. Whether or not it is sufficient is another issue. But it starts to work immediately. Any of the hormone that isn’t utilized immediately is stored. It has a half-life of about a week, so there tends to be a build-up over time, which accomodates varying needs for the hormone.

As to why you need to wait. The best of the hormone tests — i.e. the one that can detect the smallest levels of hormone — is for TSH, which comes from the pituitary gland. This is the "thermostat," if you will for the thyroid. If the pituitary detects too low a level of thyroid hormone, it raises the amount , to allow for that "average" to catch up. So, sometimes, we have to be patient, feeling less than well, to wait the required time. But it is important to wait. If you go in too frequently, you can go onto a hormonal roller coaster. If the amount of TSH doesn’t accurately reflect your real thyroid levels, you would be given the wrong amount of replacement hormone, and perhaps go hyper again. And then need to take less, etc. etc. Waiting minimizes the chance that your blood work doesn’t accurate reflect what is going on.

Also. Getting onto replacement hormone does NOT mean that you will instantly feel well again, even if the initial dose is absolutely correct. Why? Because over the months you were hyperthyroid, there was damage to body systems that weren’t working properly. You lost muscle, for example, which doesn’t return overnight, and which must be strengthened once it returns. You need time AT normal levels of hormone, in order for your body to heal. You didn’t get sick overnight, and you won’t get well overnight, either. But do plan on getting well again. The majority of time, we do get well again.

[ReneeE]

#1017814

Hello all –

I had RAI on 4/22. Blood work after 8 weeks (6/16) showed I was not yet hypo, TSH was rising but T3/4 were in normal range still. This correlated with how I was feeling too, I felt pretty okay. The only apparent side effects I have had to the RAI was weak nails, dry skin and some increased hair loss. Nothing major. And lighter than normal menstrual cycles.

Two weeks later, around July 1 I started in with quite a bit of joint pain and general fatigue. Then 12 weeks (7/15) post-RAI I was showing up hypo. FT3 = 2.0 (2.2-40), FT4 = .7 (.8-1.5) and TSH = 40.8 (0.358-3.74). So the doc started me on 75 mcg of levothyroxine on 7/19, basically last week.

So I have only been on the meds for nine days. The doc told me I wouldn’t feel any significant change for a week or two. But the past two days I have been feeling significantly worse – extreme fatigue, winded trying to do much of anything, but stairs are super difficult. Walking the dogs is quite the task since we live in a hilly neighborhood. Very hard to do much of anything at work, lack of concentration.

The doc didn’t want to see me for another 8 weeks (about six weeks away now). Hopefully the hormone kicks in here soon, six more weeks of this is going to be hard.

How long did it take for most of you to start feeling good again after starting on the levo? Is there anything I can do in the meantime to feel better? I am thinking I need a good massage. ” title=”Smile” /> And some encouragement…hubby is out of town this week so feeling like this is making it harder to keep it all together this week. Just want to curl up on the couch and have a good cry but I need to go walk the dogs…

Thanks
Renee

[susan]

#1061075

Hi Renee,
I have a very similar situation as you do and I have been on Synthroid for about three weeks. Only side effects is the weight gain that comes when I breathe in and out! ” title=”Wink” /> As well as the occational bouts of dizziness. I switched doctors and found this endcronologist that was honest and upfront. I had no problem with the last endo I had , but to him I was a patient first and a person second. This new endo asked me questions about the person I am and I instantly felt better. This disease needs to have the emotional component addressed by the physicians involved.
The new endo upped my dosage from 75mg to 100 mg and wants to see me in one month not six weeks.I will start that dose tomorrow. All this has taken a large weight( unfortunately not literally) off my shoulders; not feeling insignificant and unheard. This message board helps a lot. I also found a very good book called "The Thyroid Diet" by a hypo patient, Mary Shomom, that was also very straightforweard and real. Now I just have to stick with it.
The important thing to do is to empower yourself with knowledge and supportive people/professionals. Also if walking the dogs is all you can muster now then that is fine. Give yourself a break.
Good luck,
Susan

[melissa]

#1061076

Hi Susan,

I was so relieved to hear you say that you changed endos because you felt insignificant and unheard. That’s exactly how I feel about my endo, but I’ve been telling myself that I’m just being silly.

I was diagnosed with GD in May and have seen my endo once. I was put on methimazole and was on it for about 6 weeks when a physical with my GP showed that my liver enzymes were elevated so my endo did call me and told me to stop the meds–she recommended RAI and said that having to take one pill a day for hypothyroidism was a reasonable trade-off. I told her I needed to think about it and she said that was fine and told me to call her if I felt ‘jittery’ and she’d prescribe a beta blocker for me. She also asked me to come in and get a blood test at her office so she would have a record of my bloodwork. This was on July 14th–When I went to get my blood drawn there was no order for labwork (which didn’t make me feel great), but they got one and I was able to get my bloodwork done. I called her triage line the next day and asked for a prescription for a beta blocker since we were heading on vacation for a week and my pulse was moving up and I was starting to feel sypmtoms again. The nurse called me two days later and asked if my endo had told me that they had ordered a prescription for me at my drugstore–my endo hadn’t. I called before I left for vacation to see if I could talk to my endo about the RAI–I have a lot of questions, but she was at the hospital that week and the nurse said she’d have her call me. No call. I called again today, but my endo’s on vacation. She did send me a note with a labwork order stating that I should get my bloodwork done again to check my liver enzyme levels in the next two weeks and a note restating that I should do the RAI and that it was a reasonable trade-off.

I liked my endo when I talked to her, but I do feel like ‘just a patient’ like you said. My daughter has had GD for almost 4 years and her endo is the chief pediatric endocrinologist at Duke–he gave me his email at our first appointment and encourages me to email him any time I need to even though he’s super busy. He listened to my GD story and encouraged me to get the RAI aknowledging that there are some downsides to it. I told him about some of the problems I was having with my endo and he encouraged me to get her email to bypass the ‘gatekeepers’, but when I asked the nurse if I could correspond with my endo through email she said the best way was for her to call me.

I don’t think I’m asking too much to have my endo sit down with me and explain the RAI procedure and how she will treat me after the RAI–I want to hear the up and down sides, not just platitudes about how it’s a reasonable trade-off. Given how I’ve been treated so far by this office, I’m worried about their responsiveness after the procedure.

Sorry for the long post, but I’ve been struggling with this and was in tears this morning feeling frustrated, but silly for feeling that way at the same time. My Mom is going through chemo for a very aggressive uterine cancer and I’m whining about a minor procedure…..

Thanks for listening,

Melissa

[Kimberly]

#1061077

Hi Melissa – I’m so sorry to hear that your mom is dealing with cancer. Fortunately, Graves’ isn’t as serious as cancer, but a procedure like RAI *is* a life-changer – and you deserve to have all of your questions answered before moving forward. If this endo isn’t willing to help you go through the pros and cons, perhaps getting a second opinion would help.

Here’s an article from Dr. David Cooper on the three treatment options for Graves’ that might be of interest. (You will need to click your browser’s “back” button to return to the boards after viewing the article).

http://www.ngdf.org/cms/modules/files/u … 586097.pdf

You might also do a search on this site for RAI or “Radioactive Iodine” to read some first-hand experiences from patients who have been treated with RAI.

Take care!

[susan]

#1061078

Dear Renee,
So sorry to hear about your mom. You both need to be there for each other. I will say in hindsight I rushed into RAi because the other two options were not made to sound appealing to me. (My old endo) I also was told afterwards is just a pill every day for the rest of your life and yes you will gain weight and thats it. I wasn’t told that sometimes I am so tired I must lay down or fall down(like today) or that the dizziness is weird and unexpected. I try really hard not to think of this disease as life altering but in reality it is. It is very slowly dawning on me.
As far as doctors are concerned I have had enough interactions with them to say that they are there to work for you and with you and if they don’t appeal to you on a level that satisfies you and meets your needs, there are many others out there that will. I asked an endo once about a blood test and the response i got was "That is for me to worry about , not you!." I left his practice. No hard feellings- he simply gave me the wrong answer. you must advocate for your own health. Be assertive -no need to be aggressive. From your story your best resource sounds like your daughter’s endo.
I also got very overwhelming from reading all the information available on GD and Hypo and had to step back from it all and just live my life. Every individual is different and their situation is different. Take care of yourself.
Bye,
Susan

[melissa]

#1061079

Thank you both for your kindness and advice. I really appreciate it. I’ll keep you posted.

Melissa

[Author]

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