[WWWI2]

#1059527

This new endo I’m seeing want’s me to start on a low dose of Levothroid, I believe to help balance out the Methimazol. Anyone heard of this?

He seems to feel Methimazol is like a slow sledgehammer and that with the Levothroid he would be managing the levels a little more like with a scalple (my analogy not his)

Does this make sense? I don’t have my levels available, but I’m currently normal total T3 and low free T4 with normal TSH (.7).

I was diagnosed in August and have been on Methimazol for only a few months, during which my old doctor, dropped the methimazol levels to far and sent me hyper. Now getting near normalish (except t4 which is low). Still feeling like absolute crap tho. New doctor says that’s because I’ve been swinging so wildly over the last couple months. Hope that’s true.

[vanillasky]

#1175410

The treatment is called “block and replace.” When they thought I had Hashimotos/Hashitoxicosis, one endo I was seeing had suggested this.

I left his office with 50mcg Synthroid and Tapazole 10mg 2x a day. I have to be honest, I never tried it. I thought it was insane to put Synthroid into the body which was too high a dosage in my opinion, ( am 5’4″ weigh 95 pounds) and then kill it with Tapazole.

The theory behind it is that they feel the thyroid will become “Lazy” and only respond to the medication because if they make the thyroid lazy it would balance out and then you would be in normal range and feeling just perfect. I have to roll my eyes at that.

Not to knock it, he said he had some success with this treatment but I didn’t want to bother and now with Graves’ diagnosis, I am glad I didn’t. I think the last thing I needed with 50mcg of Synthroid. You could try it. It may help you. Hey, you never know!

Hope this explains at least what was told to me by the endo I was seeing in Buffalo NY at the time.

[Kimberly]

#1175411

Hello – This is actually a little different than traditional Block & Replace therapy, which involves using *large* doses of Anti-Thyroid Drugs to completely shut down thyroid production and taking replacement hormone to normalize thyroid hormone levels.

Traditional B&R is not commonly used in the U.S.. There was a study in Japan done where the results of B&R were highly successful – but these results haven’t been replicated here in the U.S. Also, there is concern that the higher doses of meds may be correlated with a higher rate of side effects, such as liver and white blood cell issues.

Instead, it seems like the option your doc is recommending is similar to what was mentioned by a presenter at our 2011 Boston conference. He noted that it can sometimes be easier to stabilize patients on Anti-Thyroid Drugs by giving the patient a consistent dose of ATDs, and then supplementing with thyroid hormone replacement – if needed – to make sure the patient doesn’t go hypO.

Hope this helps!

[WWWI2]

#1175412

Vanillasky, thank you for helping me get a better understanding of what this was about. I’m already down to 15 mg Methimazol and while I don’t remember the dosage of the Levo, it seems much lower than what you were given. From both doctors I’ve heard that methimazol is sometimes hard to stabalize on because the dose is in 5 mg increments which does not allow for much fine tuning. I hope whatever treatement you are receiving, is working for you

Kimberly

That is HUGELY helpful. Thank you! It actually makes a lot of sense to me. This doctor wants to be gentle with the increases and decreases as opposed to my other doctor who I’m guessing now just didn’t know what he was doing and as a result I ended up in a a world of hurt unnecessarily. It’s nice to know that there is a way to adjust and fine tune this.

It may or may not work, but it was not an option that I was really aware of prior to today. It makes me feel that at least this doctor is knowledgable about grave’s as he claims, keeps up with what’s going on. Your answers have made me feel more confidence with this doctor, something I never had with the last one, a gut feeling that I should have trusted.

For the first time since this whole thing started, I feel like if it is possible for me to stabalize this is my best shot. He does go on to say that there are some who just never do and then RAI or surgery may need to be considered. But I’m not doing the cart and horse thing just yet, at least not today.

Thanks SO much.

WWWI2

[Bobbi]

#1175413

I think it helps to understand that antibody levels rise and fall for no well-understood reason. And when these levels change, the amount of ATD we need changes. (If we do not have a thyroid any longer, the issue is moot.) The treatment plans need to keep us at a constant, CONTROLLED level of normal thyroid hormone. If tinkering with T4 makes it easier, why not? But I don’t understand why it would make it easier. If anyone’s doctor has explained this satisfactorily, I would be very interested in hearing it.

[WWWI2]

#1175414

I wish I could answer that question, but considering I initiated this post with questions, I’m probably not the best source lol. But for me, to be absolutely candid, I was really traumatised by the previous drop (20 mg to 10 mg) and duration and level of pain and feeling of being out of control and totally abandoned when I needed help, by my previous doctor, that for me, good reasoning or not, if I can avoid another drop of the methimazol in the near future and instead gently “tweek” my levels as needed, that works for me. I’m sure this is not my doctors reasoning, but for me I’m good with this. Only time will tell if this is truly effective.

[vanillasky]

#1175415

@Kimberly: can you explain the difference between what you are mentioning and block and replace?

I was never told anything different so I assumed it was the same.

The doctor that wanted to do this was from India and he said they had success there. I don’t know where he got the idea from but I didn’t want to try it.

[catstuart7]

#1175416

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

[Smashley1274]

#1175417

I also had a doctor in cny try this. And I did do what he had requested. Also I approved the rai and now am 20 lbs heavier, tired all the time, headaches, depressed, my palpitations are back, my night sweats, itching, bruising its all horrible and I am on a new endo and my levels are normal. It’s been almost two years since the rai and they’ve sent me to a gastro had an endoscope polyp removed and still with all the side effects and feelings they say I am fine and my levels are normal…wish I could have started again this sucks so def get as many opinions as you can…

[WWWI2]

#1175418

Since the August diagnosis, I went from severely hyper, to almost normal, back to hyper and now with a low t4, hypo, with occasional good days in between, because of the dosing strategy of a doctor I now believe knows little about treating Graves.

This morning I took the first levo…. and while I have minor tinnitus (which could be related to something else), and despite the fact that the doctor I saw yesterday said it will take up to 6-8 weeks for the levo to become fully effective, I have noticed some differences. Mainly, I’m getting glimpses of clarity, from the heavy cog fog I have been in for a while. My eyes are no longer red and oh so tired looking. They still look tired, but shine is returning.

I still don’t feel well, but it kind of feels like I got a small burst of something. Not sure what but I feel like there is possibility and hope. Part of it may be the placebo effect of having found a doctor who appears to grasp the intracacies of what my body is going thru, but I am thinking it’s more then that. It’s minor improvement and a lot remains to be seen, but my vision and my brain are noticably clearer.

I don’t want to offer false hope as this could just be some trick for all I know, but if this is an indication of what’s to come, I’m really good with this.

WWWI2

[WWWI2]

#1175419

catstuart7 wrote:

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

Catstuart,

That’s very helpful to know and gives me more ideas for my google searches. Thanks!

WWWI2

[WWWI2]

#1175420

Smashley1274 wrote:

I also had a doctor in cny try this. And I did do what he had requested. Also I approved the rai and now am 20 lbs heavier, tired all the time, headaches, depressed, my palpitations are back, my night sweats, itching, bruising its all horrible and I am on a new endo and my levels are normal. It’s been almost two years since the rai and they’ve sent me to a gastro had an endoscope polyp removed and still with all the side effects and feelings they say I am fine and my levels are normal…wish I could have started again this sucks so def get as many opinions as you can…

How did it go when you tried this? So you then went forward and had the RAI? Did you ever stabalize prior? For what it’s worth in the last month I have gained 10 lbs, which I am so not happy with. Do you think the RAI is responsible for how you feel? Have you talked with your doctor about levels, even when normal, may not be optimal for you? From what little I know, it sounds like your levels while normal, might be at either the higher or lower end. Will your doctor work with you?

[WWWI2]

#1175421

WWWI2 wrote:

catstuart7 wrote:

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

Catstuart,

That’s very helpful to know and gives me more ideas for my google searches. Thanks!

WWWI2

Excellent stuff Catstuart!

Found this http://www.nejm.org/doi/full/10.1056/NEJM199104043241403

Administration of Thyroxine in Treated Graves’ Disease — Effects on the Level of Antibodies to Thyroid-Stimulating Hormone Receptors and on the Risk of Recurrence of Hyperthyroidism….

I can’t substantiate the following and still trying to wrap my cog fogged brain around it but found this:

“Re: “Add Back” Thyroxine therapy improves rate of remission

If you understand what we think causes the TRab antibodies to be attracted to the TSH-Receptors, you can then see why Synthroid could indeed ward off the
return of TRab antibodies.

What we know: TSH binds to TSH-Receptors and stimulates them. During this usage, particles of these TSH-receptors can be “shed” and there is some evidence that
the shedding of these particles are what is often mistaken as “foreign” — and gets the TRab going.

So, by taking synthroid, you are reducing the activity on those TSH-Receptors (by keeping TSH activity to the low end) – which no doubt, slows down shedding
of TSHR particles too. And if you reduce the activity to those antigens, you are less likely to see an antibody reaction.

[Talley]

#1175422

Keep us informed of how this goes….I am particularly interested and if you see/feel success with this approach I’d love to know…

[Kimberly]

#1175423

@vanillasky – It’s basically degrees of the same process. With the traditional Block & Replace method, the goal is to use large doses of anti-thyroid drugs to *fully* shut down thyroid hormone production. Then the patient gets a *full* replacement dose, just like someone who was treated with total thyroidectomy or a fully ablative dose of RAI. With the other option, the doctor is tweaking a *small* dose of replacement hormone to keep the patient from going hypo. If you use the term “Block and Replace” with a U.S.-based doctor, they will likely assume you are talking about the full B&R option, and most are opposed to this.

@Bobbi – This approach seems to be backed more by individual doctors finding that it’s helpful, rather than by specific studies. Interestingly, this approach is more commonly used in children.

@WWWI2 – That particular study is a little different from the original Block & Replace study out of Japan, where the replacement hormone was introduced right away, rather than waiting. Surprisingly, both studies were out of Japan and both produced very high remission rates – but to my knowledge, neither approach has been successfully replicated outside of Japan. It would be interesting for researchers to find out what makes the Japanese such good candidates for remission on ATDs!

[Author]

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