Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • Bobbi
    Participant
    Post count: 1324

    (For those who are not familiar with the terminology, block and replace therapy involves taking a very large dose of ATD — to block the thyroid from producing much, if any, hormone — and then taking replacement hormone to bring the patient back to normal levels of hormone.)

    Hi, Steph:

    I doubt I can be of much help here. The only person who can tell you what to expect after six months is going to be the doctor who used the phrase. Does it mean that you can continue on it beyond six months if it works to control your hormone levels well? Does it mean you can travel? I have no idea, unfortunately. You might try keeping pen and tablet handy, and writing down questions as you think of them, and ask your doctor the next time you see her.

    I’m sorry to hear you may have to put off your planned trips. That has to be a huge disappointment.
    Best wishes,

    stephg
    Participant
    Post count: 13

    Hi Guys,

    I was diagnosed earlier this year with Graves disease. It was only later on in the year that I managed to see an endo. I had planned to go travelling in 2010 (mid year) for a year or so, but when I had my first endo apt she told me that would not be happening till at least 2011.The reason being because I have had such erratic swings in the past year, my conditon is not easily treated with anti thyroid meds. And basically I needed to take definitive treatment. (by way of surgery or RAI) I am only 25 so she said as a last ditch attempt she wanted to put me on Block and Replace therapy. Which I have been on nearly 2 months now. My T4 levels are finally in range:) And my Trab levels have shown a decrease which I am very happy with. I will be on this for six months (and if i have a relapse during the six months-i will be having a dose of RAI) Can anyone advise me as to what happens after the six months if I become balanced? My guess is that I am monitored and can hopefully go away still? But, if I need surgery or further treatment how long is the recovery period usually for patients? I am devastated I can not go travelling as it has been a long term plan and all of my friends have gone already (I was due to follow them). Obviously this has left me feeling so disheartened having to also deal with the monetary cost (I am from Ireland so meds and hospital are really expensive) and physical conditions of this disease. Any advice would be of great help.

    Thank You In Advance. Steph:)

    P.S: I love what you do on this BB- it is so helpful and the facilitators explain even the most complex issues so well!!

    stephg
    Participant
    Post count: 13

    Hi Bobbi,

    Thanks for your reply. I am pleased to say I saw my endo today and to my delight she believes that I will be able to travel by July 10. Because at this stage they will know if I am in remission or not. (I will be taken off meds and see how my body takes it!) Also, I am planning on going to Australia, and she said because it is Australia, I would be ok travelling ther as she can keep in touch with an endo via email etc (and its not the middle of nowhere so to speak;)). I just thought I would post this up because it is so good to see that Graves Disease (bad as it can be) really doesnt stop life from going on as usual…we just have to find different ways around how we live it <img decoding=” title=”Very Happy” /> And I really have to say I am so lucky I have such and open minded endo who is taking everything into account and not blocking me with a brickwall of her own opinion!!

    Q.Just wondering is block and replace therapy common for people with graves as I have not come across it here? I have found it to be fantastic so far as it has made me feel somewhat normal again!!! (Even if it is in its own way false;))

    Chow for now,

    Steph. x

    Kimberly
    Keymaster
    Post count: 4294

    Hi Steph – I have heard of two different scenarios referred to as "Block and Replace".

    The first one is what Bobbi mentioned — very high doses of ATDs are used to completely shut down thyroid hormone production, and then replacement therapy is used to achieve the desired thyroid hormone levels. I don’t think this strategy is used as much now, because of concern over the high dose of ATDs potentially causing liver issues or a reduced WBC count.

    I have heard the other version referred to as "Modified Block and Replace" or "Add-Back Therapy". This involves much smaller doses of ATDs and replacement hormone. I have seen this used in patients whose thyroid levels are headed into hypO territory, but the doc does not want to withdraw ATD therapy, in hopes of giving them a better chance at achieving remission.

    As for travel, you and your doctor will need to make the final decision. If you are severely hypER, travel is probably not a good idea. However, I can tell you that I am *not* in remission (I’m currently on ATDs) and I enjoyed the trip of a lifetime to Europe last summer! I would encourage you to carefully research travel insurance and purchase a package that covers pre-existing conditions. Also, be aware that when you purchase the travel insurance — and when you make the final payment on the trip — can impact whether you have coverage for a pre-existing condition. It’s best to do this research now, so you know your options.

    I had two different legs of my trip, that I purchased with two different vendors. I waited to purchase travel insurance on the more expensive package, until I made the final payment. I figured it wasn’t worth it to pay the travel insurance up front on my small initial deposit. HOWEVER, because I waited, I did not have coverage for pre-existing conditions (which was a bit scary) on that leg of the trip. Next time, I will get the travel insurance ASAP.

    Also, I don’t know if you will be travelling alone, but I was. I purchased a bracelet online where my medical info was engraved, as well as phone numbers for my doctor and parents. That gave me a little more peace of mind. (Now I try to remember to wear it when working out as well).

    stephg
    Participant
    Post count: 13

    Hi Kimberly,

    Yeah the endo did warn me about that before going ahead with the treatment. I have to get a full blood count the next couple of weeks. I think my therapy is the former one because i am on 40mg of neo-mercazole (methamozole i think it is also known as) and 75mg eltroxin alternating to 100mg every other day!! Although when I first saw the endo she put me on a really high dose of ATDS, then let me go really hypo and introduced me then to eltroxin! God hypo is so difficult, think i lost so much confidence (being tired, put on like 11lbs in about 3 months-shocking for someone just over 5ft tall;)) Thanks for your advice on the health insurance ill definitely start looking. Hopefully my current provider will do abroad for me. That bracelet is a great idea;) I wont be travelling alone ill be with my boyfriend and he certainly knows a lot about it at this stage. Did you have block and replace yourself?

    Steph:)

    Kimberly
    Keymaster
    Post count: 4294
    stephg wrote: Did you have block and replace yourself?

    Steph:)

    Hi Steph – No, I’m not doing B&R myself. I’ve been on Methimazole for two years, and I’m currently on 7.5 mg/day, which is keeping my levels in the "normal" range. I’m hoping I will be able to drop this down a bit when I go back in Feburary, as my levels are in the bottom half of "normal".

    I don’t know if remission is in the cards for me, as my TSI is still elevated after two years. But I would be happy if I could maintain my thyroid levels on a low dose of the Methimazole. This is quite the rollercoaster ride!

    stephg
    Participant
    Post count: 13

    Well, best of luck in february:) A rollercoaster indeed!!! Its a feast or famine too skinny or piling on the weight, no apetite of really hungry…

Viewing 7 posts - 1 through 7 (of 7 total)
  • You must be logged in to reply to this topic.