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Old 11-19-2011, 11:55 AM   #1
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Question Long term treatment options for Hyperthyroidism/Graves?

Hello all, I'm looking for information regarding alternative treatments for hyperthyroidism. I was diagnosed with it in May this year. I've been told this is because of graves' disease. I've been taking Carbimazole since; at first it was 40mg a day then upped to 60mg a month ago. I was also taking propanalol but have since stopped taking these, as they didn't agree with me.

I had an appointment with the endo the other day and he wanted to know if I had thought about long-term treatments. Up to that point I was under the impression that the Carbimazole would level out my hormones and I could just stop taking them, end of.

He was pushing surgery but said radioactive iodine was an alternative. I don't like the idea of either to be honest because, as I understand it, they will both make me Hypo for the rest of my life. I really don't feel that ill and think it's such a drastic way to go for something that doesn't bother me that much. I don't have any up to date bloods but in August they were;

TSH - <0.02 mlU/L
Free T4 - >100 pmol/L
Free T3 - >50 pmol/L

The other day the endo told me the T3 & T4 were still twice as high as they should be but didn't give me the exact numbers. When I first got diagnosed it was because of a goiter. Other symptoms included; hand tremor, fast heart rate (110+bpm), muscle weakness, light periods, got tired very quickly after walking, low weight, increased appetite and problems sleeping. Now everything is fine really, I still get tired quickly, my heart rate is 100bpm and my weight is still a little low (bmi 17.6) but it's not ruining my life.

Is there a way I can just keep it ticking over? It doesn't matter to me that it's slightly overactive because I barely feel it to be honest. I'm in the UK and am a 26 year old if it matters. Sorry to go on and on just wanted to make sure I put everything in. Any help will be very much appreciated.

Sam
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Old 11-19-2011, 02:36 PM   #2
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Re: Long term treatment options for Hyperthyroidism/Graves?

Welcome!

Sorry for the reason you're here but, glad you found us.

People can safely take anti-thyroid drugs for life, if necessary. Endo Dr. Alan Rubin confirms this in his book "Thyroid for Dummies".

You are wise to want to avoid a permanent treatment - it's completely unecessary. 80-90% of Graves' patients go into remission if they are allowed to take meds until their body indicates that remission is happening (vs. arbitrary timeframe on meds)

RAI is contraindicated for Graves' since it can cause or exacerbate TED. In addition, it can make our disease course worse since the treatment itself causes a flood of antibodies to be released....and they continue to be released as the thyroid dies off. In fact, antibody production increases as a result of the treatment. Well, antibody production is what got us sick in the first place.

Now, your levels were quite elevated back in August but, 40 mg should have brought them back into range by now.

60mg is an extremely high dose. Usually, by this time after diagnosis, patients need a dose reduction, not an increase.

It's not uncommon for doctors to improperly medicate thyroid patients - and it happens at both ends of the spectrum - with both hyperthyroidism and hypothyroidism.

It will be to your benefit to maintain hard copies of your labs records and learn how to interpret them.

If you'd like to post your most recent results here, we can help you interpret them and let you know whether or not your current dose is appropriate. Please be sure to include the reference range for each result since ranges vary from lab to lab and your result can only be properly interpreted within the context of your lab's ranges.

Also, have you been dividing your dose? There are reasons to do so that will benefit you and I'll gladly explain them once we know what's doing.

I'm glad you're feeling good right now - let's keep it that way.
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Last edited by sammy64; 11-19-2011 at 02:38 PM.

 
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Old 11-19-2011, 10:27 PM   #3
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Re: Long term treatment options for Hyperthyroidism/Graves?

Thanks for the speedy reply and warm welcome

Iím pretty annoyed now because my endo said the Carbimazole Iím taking canít be taken for more than a year, which seems to be a flat out lie. Doesnít inspire confidence does it. I didnít really like him anyway, I found him quite patronizing and rude. Getting blood results are a nightmare. I straight out asked him a few times for the specific numbers and he just chuckled and said ďyou wonít know what they meanĒ. Iíll certainly be getting a different endo after this. Anyway, I know my blood results get posted to my GP so Iíll get them off him. Is there anything else I need to be keeping records of or is it just the bloods?

When you say 80-90% of people go into remission, is that permanent or does it come back? Also could it swing from hyper to hypo? I only ask because when I spoke to my endo he said that the chances of it just going away were one in a million. Then again, he is a lying toe rag.

Iím not sure if the dose is too high or not, I know Iím still not in range so maybe he wants me there faster, who knows. I take 3x 20mg in the morning in one go.

Thanks for the help.

Sam
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Old 11-20-2011, 08:14 AM   #4
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Re: Long term treatment options for Hyperthyroidism/Graves?

Happy to help. Thyroid forum members helped me so much that I'm here to pay that forward.

Your endo sounds like my first 3 endos. The remission rate is well-documented.

Clueless doctors are the ones that often make remission difficult for the patient. I just don't understand why some doctors give us a limited amount of time to take anti-thyroid drugs and then want us to have a permanent treatment.

Do they do that for patients dealing with blood pressure issues? And, then, if BP isn't controlled with meds, do they suggest removing the heart? Same concept with diabetics.

The thyroid is a vital gland - it's the victim of an antibody attack. Why remove a vital gland when meds can help heal it as well as the immune system? (anti-thyroid drugs lower antibodies)

Remission can be permanent as long as the patient isn't exposed to the triggers that caused the disease in the first place (excessive stress, hormonal changes as those that occur in pregnancy and menopause, etc.) Remember, remission means absence of disease, not a cure.

If a person comes out of remission, another, shorter round of anti-thyroid drugs is all that is usually necessary.

20% of Graves' patients go hypo after remission. (that's where I'm at) Sometimes the hypothyroidism is temporary...sometimes it's permanent.

Now, many Graves' patients go hypo because our doctors overmedicate us with anti-thyroid drugs. That's why it's so important to monitor our blood levels and be proactive with our care.

While my information comes from a variety of sources (thyroid textbooks, books written by endos, medical journal articles as well as information shared on thyroid forums over the past 4+ years), one of the best resources for information about Graves' is a book called "Graves' Disease - A Practical Guide".

Now that you've confirmed your dosing schedule, I advise you to change it. What I am suggesting to you is listed in the prescribing information for methimazole (carbimazole metabolizes into methimazole)

I suggest that you divide your dose into at least 2/day.

You see, methimazole has a 6-8 hour half-life. This means that half of the dose is used up withing 6-8 hours of taking it.....and the entire dose is used up within 12-16 hours of taking it.

When we do once daily dosing, our thyroid hormone levels drop a lot after taking the dose....and they start to rise once the dose starts to wear off. Then, our bodies are on their own for the 12-16 hours there are no meds the system.

Dividing the dose provides for more even "coverage" and more steady thyroid hormone levels. Steady thyroid hormone levels feel better and they bode best for healing.

Doctors don't make things easy for thyroid patients but, it is entirely possible to heal from Graves' and feel good in the process.
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Old 11-20-2011, 08:40 AM   #5
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Re: Long term treatment options for Hyperthyroidism/Graves?

Raw goitrogens are definitely effective at lowering thyroid hormone levels.

I didn't want to mention them just yet only because we don't know what Sam's actual thyroid hormone levels are right now.

You see, her doctor mentioned that here T3 & T4 were twice as high as they "should be"...and the "should be" concerns me.

Based upon the clueless doctors we've all come across, there's a chance he's saying that because her TSH is still suppressed (as it REALLY should be, thanks to the Graves' antibodies)

I also have concerns that, with the very high dose increase, her levels will plummet quickly.

The highest dose a knowledgeable doctor prescribes is 30mg. It will take a little longer for levels to go back into range but, it protects the patient from side effects as well as the unpleasant experience of thyroid hormone levels moving a lot.

If her FreeT4 and FreeT3 levels are still over-range, then, yes, increasing the consumption of goitrogens would help.

If a person wanted to reduce the dose of anti-thyroid drugs he/she needs once levels get back into range, he/she could maintain the higher level of goitrogen consumption but, it would be very important to be consistent with it for obvious reasons.
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Old 11-20-2011, 08:44 AM   #6
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Re: Long term treatment options for Hyperthyroidism/Graves?

Nice to meet you, Sam. I can't help you nearly as much as Sammy can, so I defer to her on all things hyperthyroid. Please pardon me for going around you for the moment to ask her a question on your behalf.

Sammy, would Sam benefit from increasing raw goitrogens in her diet, since her thyroid levels are still so excessive despite a high dose of anti-thyroid? Or would that be too imprecise a method to really help much?

 
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Old 11-20-2011, 10:52 AM   #7
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Re: Long term treatment options for Hyperthyroidism/Graves?

You know, I posted a lengthy reply and came back here because I realized I didn't thank Midwest1 for her input. She obviously understands the negative implications of goitrogens for hyPOthyroid people and how they might positively affect those dealing with hyPERthyroidism.

Consistency is very important to a sense of well-being when a person has thyroid disease. The thyroid produces hormone on an as-needed basis for every body system.

When our thyroids are sick, meds are trying to help the thyroid regulate the production of thyroid hormone.....a stable dose of meds can do just so much.

So, the more consistent we are with the various aspects of our life - sleep, foods we eat, activity level - the more stable our thyroid hormone levels will be.

Stable thyroid hormone levels feel really good....

And, more importantly, when a patient has Graves' Disease, maintaining stable thyroid hormone levels helps minimize antibody production.

Anyhooo, I'm not seeing my most recent post here right now so, I might be back....
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Last edited by sammy64; 11-20-2011 at 11:10 AM.

 
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Old 11-20-2011, 11:02 AM   #8
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Re: Long term treatment options for Hyperthyroidism/Graves?

Well, it looks like my response to Midwest1's great question didn't make it on here.

YES! Increasing the consumption of goitrogens can definitely help a hyperthyroid person.

It would be imprecise only if the patient wasn't consistent with the level of daily consumption.

Since I explained the reasons for consistency when I came back to thank Midwest1 for her insightful question, I won't repeat it here.

I usually suggest increasing consumption of goitrogens to people dealing with hyperthyroidism.

Since SO many doctors misinterpret Graves' patients' blood test results, I did not have confidence in the comments Sam's doctor made about her levels.

Throw in the fact that the huge increase to 60mg could drastically lower Sam's levels in a very short time and, I was too leary to make the suggestion without seeing her most recent labs.
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Last edited by sammy64; 11-20-2011 at 11:03 AM.

 
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Old 11-24-2011, 07:45 AM   #9
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Re: Long term treatment options for Hyperthyroidism/Graves?

Thanks for all the helpful information Sammy. Sorry I havenít been back to reply for the last few days Iíve been doing some reading. I tried to get in touch with my GP about changing endos and getting my blood results but heís away on holiday until Monday.

I donít really want to mess around with my dose until I know what my levels are. Although my endo is a tool heís still a doctor so I hope there is a good reason why the Carbimazole dose is so high. I will however take your advice and split it into 2 separate does, 30mg in the morning and 30mg in the evening.

It certainly seems carrying on with the tablets is my best option at present, I can always opt for the surgery later on if needed, canít do much once itís gone.

Iíve seen the book ďGraves' Disease - A Practical GuideĒ mentioned on another forum so Iíll check with my local bookshop when Iím next in town.

The raw goitrogens idea is interesting although eating raw broccoli and cauliflower doesnít sound great. Is there any way you can cook them while keeping the good stuff?

Also, I wonder if you can help me with something else. Iíve started getting really bad muscle cramps since upping my dose from 40 to 60mg. The endo said it was because I had been inactive for a long period (I had) and suddenly starting being active again had caused it. I used to walk a lot but started getting so out of breath so I stopped doing it. They come from nowhere, I can be making a cup of tea and Iíll get a jolt of pain through my arm. Theyíre fairly regular, maybe 2 to 3 times a day. Do you know what causes these and how I can make them stop?

 
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Old 11-24-2011, 08:43 AM   #10
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Re: Long term treatment options for Hyperthyroidism/Graves?

Happy to help. Thyroid forum members helped me so much that I'm here to pay that forward. Doctor often don't medicate properly for Graves' and, without learning what I did, I wouldn't have a thyroid right now and be miserably hypo.

Glad to hear you're dividing the dose and also to hear you'll be getting the book. It is, by far, the best reference book for Graves' that's out there.

Goitrogens do need to be eaten raw to be effective....maybe you could find some food items on the list that are appealing to you. You would need to eat 1.5 cups/day every day for them to effectively lower your levels.

And, quite honestly, until you know just what your levels are, I don't think I'd be inclined to start eating more goitrogens.

Hate to tell you this but, I think your dose increase has already affected you negatively. That is a HUGE dose increase for an anti-thyroid drug and, I must tell you that, after participating on thyroid forums (including one devoted to Graves') for over 4 years, you are the first person to be prescribed such a high dose.

The issues you are having can associated with too-low thyroid hormone levels. Since anti-thyroid drugs are so effective, your levels probably weren't that bad when your doctor increased your dose....and now you are feeling the effects of a insanely high dose.

I sure hope you can get your lab results soon and post them here.

For whatever it's worth, the author of the book I recommended has a wonderful online course about Graves'/hyperthyroidism. There's a section on anti-thyroid drugs that describes the proper manner in which you should be medicated. You'd have to search for it since we're limited on here in regards to what we can link.
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Last edited by sammy64; 11-24-2011 at 08:47 AM.

 
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Old 11-24-2011, 02:53 PM   #11
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Re: Long term treatment options for Hyperthyroidism/Graves?

Thanks Sammy, it'll probably be tuesday or wednesday when I get to see my GP so I'll come back and post my results then.

Sam xxx

 
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Old 11-26-2011, 06:23 PM   #12
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Re: Long term treatment options for Hyperthyroidism/Graves?

Sorry, I wasn't planning on posting again until I had my full blood results but I got a letter from the endo today which has stressed me out a bit. It reads;

"Your thyroid blood tests are steadily improving with a recent free T4 25.6. I therefore recommend that you arrange with (my GP) for a regular prescription of Levothyoxine in a dose of 75mcg daily. This should be taken on a regular basis along with the Carbimazole. You should aim to start this new treatment in around two weeks time."

I understand Levothyroxine is T4, which I thought the Carbimazole was supposed to be lowering, so why should I take extra? Also should I stop taking the Carbimazole for a bit if I'm on the brink of Hypo? I suspect it will take at least a month or 2 to be referred to a different endo and I don't want to be making myself worse while waiting.

Sam
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Old 11-27-2011, 05:02 AM   #13
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Re: Long term treatment options for Hyperthyroidism/Graves?

Actually, if your endo didn't have you taking such an insanely high dose of carbimazole, adding levothyroxine is one of the best things a doctor can do for a Graves' patient.

This meds regimen is called Block and Replace Therapy and it has many benefits. Obviously, by taking carbimazole, you are blocking the production of thyroid hormone but, you are also getting some action against antibody production. By replacing the hormone that is being blocked with levothyroxine, you are (hopefully) prevented from going hypo. This meds regimen actually lets the thyroid rest a bit which can expedite healing.

However, in Block and Replace Therapy the most common doses are 5mg carbimazole and 50mcg levothyroxine.

Moving forward from there, the carbimazole dose would be slowly reduced as necessary to maintain the FreeT4 level towards the higher end of the range.

And, if the ranges for your FreeT4 level are the most common 10-20 or 12-24, you can see that your level is thisclose to being in range.

I think that your endo believes your FreeT4 level will be in-range within two weeks. If you are still taking 60mcg carbimazole and continue taking it for another two weeks, I fear you will be quite hypothyroid by then - the med works that fast.

As soon as the FreeT4 level gets in-range, that's when it's time to switch to a maintenance dose - the most common doses being 2.5 - 10mg.

If there is any way you could talk to your GP about this, maybe he/she will be the voice of reason.
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Last edited by sammy64; 11-27-2011 at 05:14 AM.

 
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Old 11-27-2011, 08:45 AM   #14
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Re: Long term treatment options for Hyperthyroidism/Graves?

Thanks again Sammie, you really are a special lady spending so much time answering my questions. I'll speak to my G.P and let you know how it goes.

Sam

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Old 11-27-2011, 11:57 AM   #15
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Re: Long term treatment options for Hyperthyroidism/Graves?

Hi Sam

I'm happy to help. I dealt with a succession of 2 clueless endos when I was taking anti-thyroid drugs and I suffered under their care.

Thyroid forum members helped me a lot and, by the time I met with endo #3, I had researched extensively and knew to fight her dosing recommendations.

I'm here to pay that help forward.

Please keep in touch on here....I'll gladly help you throughout your Graves' journey for as long as you'd like company

Best, Sammy
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Last edited by sammy64; 11-27-2011 at 12:06 PM.

 
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