[VanIsleGal July 23, 2012 at 8:03 pm Post count: 66]

#1172997

I am in your situation too! I don’t know if I should choose RAI or surgery. I saw my surgeon today.

Keep us posted and I hope whatever you chose goes well! xoxo

[VanIsleGal July 23, 2012 at 9:00 pm Post count: 66]

#1172998

Thanks for this Kimberly! I will have a look too!

[kararoot September 17, 2012 at 10:09 am Post count: 4]

#1172999

Hi all – so an update on me:
I took that month I was given and saw an integrative medicine MD, who took me off gluten and added supplements like Vitamin D and Omega-3 and multi-vitamin – the regular stuff. And I called my endo to see if I could drop the Methimazole to 5 mg – which she agreed to. The gluten-free thing was not a welcome suggestion (as I love to bake and LOVE bread!) but she assured me that we were experimenting and I was glad to be addressing the impact on the thyroid AS WELL as approaching Graves’ as an autoimmune condition. Since so many people have gluten sensitivity that exacerbates autoimmune conditions, it was worth a shot. I also added more regular exercise and really working on saying “no” more- not to let myself get too stressed out and overwhelmed, with breathing and relaxation exercises to support this. I’ve also read about the stress connection with Graves’ – as with many autoimmune responses.

Long story short- I went in a month later and my enzymes were normal. Not only that, but my T4 was in the normal range, so the meds were working at the lower dosage, and I have been given the go-ahead by my endo to continue this track – anti-thyroid meds for a year with complimentary approaches to maintaining health, in the hopes that I will be in the 30% that achieve remission. As this was what I was hoping for, I am thrilled. I also recognize that at some point I may face the decision between RAI and surgery again, but for now, I am happy to be where I am – not to mention feeling better than I have in over a year with the symptoms like insomnia, fatigue, palpitations, etc. GONE. (I even stopped atenolol!)

The other part of the update is I decided before switching endos to try to talk with mine about our relationship and the comment she made. I told her I needed to bring up something that was bothering me and then reminded her that as she left our previous appointment, she had said, “Since you know so much, why don’t you come up with the treatment plan.” I told her that really bothered me, that I needed her to be the expert and I needed to have a voice about my own body and hoped that we could work together. I felt she heard me, and she said she supported her patients doing research and the truth was that she was mitigating risk when she was pushing RAI and that I, in fact, DID come up with the treatment plan and it was working, so that was good. I felt after we talked that there is a mutual respect (maybe born from that conversation itself) that allows me to say something again if I need to but also feel I can keep working with her.

(I’m also hoping – since noticing no difference one way or another- that the gluten thing is a fluke and while might be a problem for some, isn’t MY problem, particularly. But, since things are so stable right now, I am continuing GF, for a little while at least).

Mostly- I read a TON and hunted down the support I needed, and have felt more empowered about my own health and wellness, and more aware of my body’s needs -(learning to pay attention to symptoms and needs) – than I have in my whole life. I am grateful for the struggle the last 4 months have been because they’ve taught me to be proactive about my health and medical care, and to trust my instincts and take risks, speak up, and to pace myself. I learned I can be as healthy as I am able and work for my own well-being. What a lesson to learn!

All in all – happy update.

[pdaz September 17, 2012 at 11:00 pm Post count: 2]

#1173000

Hi K
I am on the same boat.

I started on Methimazole 30mg per day 5-weeks back.

Now last week my FT4 and FT3 were right at borderline elevated.
Very slightly above the upper range.

But my Liver Enzymes have gone very high. Results from Sept 14th are below:

AST 79 Range — 0 – 37
ALT 217 Range — 15 – 65

It was slightly elevated before starting on Methimazole.

Two weeks back my Lipase was also slightly elevated.

But I feel quite normal though.

My endo doctor thinks that I should stop Methimazole completely for a week.

I think I should be on 5 or 10mg and see how it goes. Any suggestions?

[KimberlyOnline Facilitator September 18, 2012 at 3:06 pm Post count: 4294]

#1173001

@kararoot – Thanks for sharing your story! This is a great illustration as to how vital the communication process is between doctors and patients…and that sometimes a little effort on the patient’s part can help erase misunderstandings and preserve an otherwise productive relationship.

@pdaz – Hello and welcome! We are fellow patients on this board, not doctors, so it’s not appropriate for us to make dosing recommendations. If you are concerned, though, I would suggest going back to your doctor to ask questions. We’ve actually had cases reported here where a doctor changed his/her mind after a patient went back and asked for the reasons behind a specific dosing recommendation. However, it’s absolutely critical that this decision needs to be made in conjunction with your doctor.

[adenure September 18, 2012 at 4:38 pm Post count: 491]

#1173002

pdaz,

I would really monitor your liver enzymes carefully. Mine were elevated 8 times the normal amount within 7 weeks of taking just 5 mg a day. Not a common thing obviously, but it happens. I didn’t have any symptoms and felt normal as well- no fever, no jaundice, no sore throat. So, it was quite the surprise! I was told to stop methimazole that day which I did. My liver enzymes returned to normal and the ultrasound (abdominal of the liver) came back fine as well. I ended up choosing surgery as there is a study that show that people who have issues with one medication (liver problems) will have a 50% chance of having the same type of issue on the other medication as well (PTU or methimazole). Definitely communicate with your doctor, but I would stop the methimazole for a week like he suggested and then retest your enzymes. 3 days after I stopped methimazole, my doctor had me do another round of liver testing and my numbers had come down (not normal at that point, but heading in the right direction). As others have said before, you can live without your thyroid, you can’t live without your liver. Take care!

[kararoot September 18, 2012 at 4:48 pm Post count: 4]

#1173003

I think you should ask your doctor if you can reduce your dosage. Mine told me later that given my earlier hives, and the current elevated liver enzymes (which had been only slightly elevated before I went on Methimazole) she had to think about the risks and didn’t want to make a fairly healthy woman in her 30s sick from a medication she prescribed. But she gave me a month to see if they would drop, and she said, “You came up with this treatment plan, and I it worked. I am glad!” If my enzymes had been super high or elevated over two cycles of blood draws (6-8 weeks) we probably could not have tried that strategy.
It certainly can’t hurt to ask!

[PSylo September 18, 2012 at 5:47 pm Post count: 6]

#1173004

Could you explain further , what you mean by eye concerns. Did you have the eye issues prior to the surgery?

I currently have the eye issues and am trying to understand and learn as much as I can.

Thanks so much
Pam

[pdaz September 19, 2012 at 7:13 pm Post count: 2]

#1173005

Thank you all.

sorry to hijack this thread.

My Liver enzymes were borderline elevated before starting on Methimazole.

After 5-weeks, my T3 and T4 have come down to slightly elevated at this point and I feel great.

But the Liv enzymes are in between 3-4 times elevated. Completely stopping Methimazole would shoot the T3 and T4 back up and it can go dramatically up.

So I decided to reduce from 30mg to 10mg and test the Liv enzymes after a week. If there is no downward trend then I have to unfortunately stop Methimazole and look for other options.

Meanwhile I am looking for alternate natural solutions.
I have already controlled my diet to home-cooked and vegetarian diet.

Would appreciate any pointer/suggestions – anything is welcome

[KimberlyOnline Facilitator September 20, 2012 at 9:03 am Post count: 4294]

#1173006

@pdaz – I would strongly suggest talking to your doctor on this issue before deviating from his/her recommendation.

If you review the “Treatment Options” thread in the announcements section of this forum, you can find the latest guidance on treatment of hyperthyroidism. If you pull up that document and do a search for “liver”, you can see the latest recommendations on baseline testing and if/when to stop the meds.

Also, that “Treatment Options” thread has some info about alternative therapies — unfortunately, at this time, there are no other options that have been proven to be both safe and effective in the treatment of hyperthyroidism.

Finally, you might want to remove your e-mail from the above post, as spammers often “troll” message boards like this one and grab any visible e-mail addresses. You can send a private message to another poster by viewing one of their posts and clicking on the PM icon that appears underneath their screen name. The system will “ping” whatever e-mail address the other person used to sign up to let them know that they have a private message waiting. (You have to be logged in to the system in order to view your private messages).

Take care!

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