[catsmum]

#1018489

Hi everyone,
Sorry we haven’t been online for a few months, things have been hectic.
Wanted to give you an update on Cat.
She ended block & replace last november & went into remission however things are going downhill again.
Her levels have been gradually increasing with each bloold test but remaied within ‘normal’ limits despite her symptoms reoccuring. In the last few weeks Cat’s goitre has reappeared & enlarged again and her symptoms are now all back. Had bloods done last week & should get results this week.
Despite all of this, Cat has just completed her first year at University & we are so proud of her.

[Ski]

#1065210

Thanks for the update, we’ve missed you! Sorry to hear the symptoms are returning, this is not an easy path for anyone, is it? Let us know how things progress from here, and give Cat our love!

[catsmum]

#1065211

Thanks, Ski.
You are right, it’s not an easy road we travel. Cat due to get test results on wednesday & we are sure she’s hyper again so likely to need treatment. She is trying to decide which option she’d go for, RAI or thyroidectomy. She seems to be veering toward surgery as she can’t face the thought of being quarenteened (hmmm…not sure I spelled that right…) during the summer as she’s home from Uni & wants to spend time with her friends. I’d rather she had the RAI than surgery ‘cos I’m her mom & don’t want her going under the knfe. So as you can see, not an easy decision.
If anyone has had RAI or thyroidectomy in the UK recently maybe they can let us know what is involved after the treatment – what precautions need to be taken etc. It would be good to hear of the experience of others. Maybe that would help put our minds at rest.

[prknight]

#1065212

Please explain to me her treatment before she did the block and replacement. My endo took me off my methimazole recently and mentioned this form of treatment. What is she taking?
How long has she had Graves? Just curious.

Thanks!

[snelsen]

#1065213

Hi catsmum!
There have been some very recent posts re thyroidectomy, plus the decision making experienced to make that decision, rather than RAI. I think you and Cat will find them very helpful. There are some pros and cons to both, some of them simply personal preference. I had a thyroidectomy, would make the same decision again. RAI did not interest me.I was 24.
I lived in England a couple years (though in Seattle now.) The most important thing @ choosing a thyroidectomy is to choose a surgeon who does them on a regular basis. If you talk with the endocrinologist, plus asking your primary care doc to ‘ask around," for some choices, you (and she) will be fine. My personal reason was that I did not want to deal with the bouncing around of levels after RAI. Read the posts of the recent thyroidectomy experience. i can’t recall her name at this moment, but it has the word "Yikes!" in the title!
shirley

[mamabear]

#1065214

viewtopic.php?f=3&t=40874&p=111286&hilit=yikes&sid=49a515a25f7e31adbd756eb6b3b282e2#p111230

The above is the post nelson is talking about. I think posters name is lhc11

Glad to see you back. Can she try methimazole ?

Hugs

[catsmum]

#1065215

Thanks, guys, I’ll check those posts out now.
prknight – Cat simply went to her doctor as she was feeling unwell then her bloods showed her thyroid hormones were off the scale. She was immediately started on betablockers along with carbimazole. Once she went hypo they began the block & replace of carbimazole & levothyroxine for 7 months. She didn’t tolerate it too well to it, although her levels went down into ‘the normal range’. She was really fatigued all the time. She also developed a goitre & ultrasound showed nodules, one was pretty large so they did needle biopsies. Thankfully that was benign but it is apparently very rare for GD patients also have multinodular goitres, or so we were told.
After 7 months the block & replace was stopped & she has had bloods done every 3 months since We’ve notived her symptoms increasing and her fT3 & fT4 have been going up too, although still in the ‘normal range’. Her goitre has reappeared & all her symtpoms are back. We get blood tests back tomorrow so will see what happens then.

[Allison]

#1065216

HI,

I just had The RAI done on June 3rd. I live here in the US but I also have a multinodular goiter. I started on a beta blocker and didn’t have any problems with the RAI treatment I had to stay away from people for 2 to 3 days that is when you are most as risk with it. I have a 2 year old daughter, I stayed away from her for 4 days and then was careful with my contact with her for a week. I go back to see my Endo on July 15. I have had no complications from the RAI I had very little throat discomfort, I would do it again if I had the choice.

[catsmum]

#1065217

Thanks, Allison.
It’s reassuring that you got through RAI with little problem.
Cat saw the endo nurse today and her blood tests show little change in fT3, fT4 & TSH levels, which are still within the ‘normal’ range despite all of her hyper symptoms returning. Her goitre has increased insize so it’s possible that the nodules are growing but the thyroind isn’t overactive. Yet again we are being told to ‘wait & see’ which is so frustrating.

[Corinne]

#1065218

Hi,
I also recently had RAI, about 8wks ago now. I am not much older than your daugther, by the sounds of things. I am 24. I highly recommend the RAI. I had 5 days off of work after RAI, and was told to avoid extended contact with people, so not sleeping in the same bed or riding in the same car for hours, but I could sit and watch movies with my husband all day (and thats what we did). He just sat on the other sofa as me. So, she doesn’t have to be completely away from friends and family (with some exceptions, pregnant women, children, etc). Of course if your doctors recommend otherwise, then listen, but mine said that what I did was fine (5ft was my approximate distance from others…really thats not so far). Especially if thats the only reason she is feeling unsure of RAI, tell her its totally bearable. I had no side effects, and for me I felt better quickly. WIthin like 4-5 wks I started feeling more motivated and had more energy and my jitteryness went down drastically. By 8 wks (just posted about this!) I was hypo and now just started my replacement! I think thats rather fast, I know surgery is faster, but compared to how long I have felt crappy 8wks feels like a handful of days. I was too scared to do the surgery, much more invasive (not that the doctor gave me that option) so I can understand your worries about that as her mom. Plus, whichever you choose it will take time to find a good-for-you replacement hormone dose, so they are equal in that aspect. I hope you guys reach a decision you feel comfortable with, and soon, so that she can feel certain she is on her way to feeling much better!
-Corinne

[catsmum]

#1065219

Thanks for that. I’ll pass it onto Cat (she’s 19 by the way). I think it will reassure her alot.
We saw the endo nurse yesterday but despite all her symptoms she’s still in the ‘normal’ range so they are refusing to discuss treatment at the minute. Just a case of sit & wait again.
W x

[catsmum]

#1065220

Update;

Cat had her bllod work redone at the clinic & her TSH has dropped significantly in 2 weeks (still in norml range, just). Waiting to speak to endo on monday to see what the next steps are. We knew things weren’t right as all her symptoms have returned & goitre has enlarged yet the doctors don’t do anything as her levels are in this magical ‘normal’ range – obviously normal for her is not in that range. When will doctors realise that everyone is different & people don’t always fit the standard ‘normal’. We know our own bodies & can tell when all is not right. They need to listen to the patient & not rely soley on the stats.
Ok, rant over.

[Julie3588]

#1065221

Hello,

I had RAI done almost exactly a year ago, at 21. I had gone on ATDs in the past and had a short remission but ultimately relapsed. After the RAI, I only had to refrain from close contact for 3 days. I was actually told that it was fine to go out to dinner for my sister’s birthday the next night as long as I stayed 1m away from everyone. After 3 days I was able to hug and after 4 days, kiss. I had no throat discomfort and was told to take a double dose of my beta blocker for the 7 days following the treatment to minimize symptoms. The only negative was that after the small dose I was given for the uptake scan, I felt very nauseous and ended up vomiting a bit. I do not think this is very common though. I made sure to eat lightly before the actual dose and felt fine afterward. I would choose RAI again if I needed to. It seemed a lot less invasive than surgery and I didn’t want to spend the rest of my life going in and of remission on ATDs. It’s been a year and I’m still trying to get my levels right on Synthroid. Hopefully your daughter can make a decision she is happy with. It can be hard to make a decision at this age that will affect you for the rest of your life. She’s very lucky to have such a caring and informed mom, mine is the same way and it helps so much. Best of luck!

-Julie

[Allison]

#1065222

Hi Everyone,

I am doing well. I just saw my endocrinologist Dr Hao. The first set of Lab results after having RAI are as follows.

Free T3: 7.90 reference 2.2 – 4.1 pg/mL
Free T4: 2.90 reference 0.85 – 1.71 ng/dL
TSH: <0.02 reference 0.27 – 4.20 uIU/mL

My results just before the RAI treatment were:

Free T3: 4.86 reference 2.77 – 5.27 pg/mL
Free T4: 1.15 reference 0.78 – 2.19 ng/dL
TSH: <0.003 reference 0.465 – 4.680 uIU/mL

I continue to have no problems. It seems like everything is still the same as before. I am still on Propranolol 20mg twice daily. My next visit with Dr. Hao is in September.

Allison

[Bobbi]

#1065223

Catsmum: I recently had an issue with hyperthyroid symptoms. My dose of replacement hormone had been raised two months earlier, and I had mildly hyper symptoms the whole time I was on it. The most annoying aspect of it was that I could not sleep at night. When my blood work came back as "normal" — at the lower end of normal. I told my endocrinologist that I wanted a lower dose of replacement, and she was willing to try it. Two months later, feeling terrific, I had to have another blood test (just to check) and while the work was still in the normal range, it was even more towards the hyper end of things than the previous test had been! So my dose was lowered again. Apparently my first blood test was done too soon to actually "register" how hyper the dose was making me.

I relate that episode to you, Catsmum, because I think your daughter knows hyper symptoms, and she should be diligent about talking with her doctor about them. "Normal" is a RANGE, not a specific point on a chart. Some of us experience hyper symptoms — verifiably hyper symptoms– while still in that normal range, albeit at the near end of things. You might have your daughter start keeping a log of things like resting pulse rate, number of bowel movements a day, any annoying tremors in her hands, sleep patterns, etc. Doctors unfortunately need specific "data" rather than subjective commentary. But if your daughter can document symptoms, the doctor needs to listen. Even subclinical hyperthyroidism has been shown to cause bone loss and muscle wasting. Sometimes we are wrong, and the problem is something different with similar symptoms. But we DO know what hyper feels like, and our information needs to be given credible consideration.

[Author]

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