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Severe Allergy To Methimizole, Don't Want Rai

Methimizole RAI

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#1 skellie10

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Posted 28 July 2013 - 09:33 AM

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Hello, I'm newly diagnosed, graves disease with positive TSH-receptor antibodies. My endo started me on methimizole and after two weeks I broke out in severe hives. I've stopped the meds and after 5 days still on steroids for the hives. The doctor wants to do the RAI now and I'm not feeling good about that. I've researched a lot but cannot find many options besides changing my diet and taking the whole holistic approach. I don't have a problem doing this but is it really effective? Overwhelmed!!! I don't know anybody that has had to go through anything like this.




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#2 cd3764

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Posted 28 July 2013 - 02:37 PM

Welcome!

 

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

 

Unfortunately, it's not uncommon for people to develop hives after being started on a too-high

dose of anti-thyroid drug - in your case, methimazole.

 

Do you know what your FreeT4 level was at the time you started meds?    It's a good idea to

maintain hard copies of your lab results anyway.    If you have a copy available, please also

share the reference ranges for the result (usually listed to the right on the lab report).

 

And, what dose were you taking?

 

Knowing the answers to these questions will tell us whether or not your starting dose

was appropriate.

 

If it was too high, the simplest approach is to re-start you on a lower dose.

 

Just so you know....worst-case, if you are truly allergic to methimazole, you could always

try PTU, the other anti-thyroid drug.

 

Methimazole and PTU are chemically different so it's highly unlikely someone will be allergic

to both.



#3 mmztcass

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Posted 28 July 2013 - 04:20 PM

skellie:

 

Welcome!

 

To echo what cd says, people often have reactions around the third week - plus or minus when the starting doses were likely too high.  

 

This happened to me as well when I first started out on the MMI (Methimazole) .

 

{{{hugs}}}



#4 skellie10

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Posted 28 July 2013 - 08:24 PM

I'm so happy that I found this and you responded!! My Free T4 was 1.4 (range 0.7-1.5). Started methimizole 10 mg twice a day. It was about two and a half weeks after that the hives started. Also I noticed about two weeks into the meds my symptoms started coming back, all symptoms just vanished on day four of starting the drug; does anything like that sound familiar? I'm definitely going to ask about PTU, it's good to know there is another option. My husband has been awesome through this. He's really helping me to change my diet, which has been horrible, sugar sugar caffeine and more sugar. One more question though, could what my diet was (very bad) be part of the reason my immune system flipped out? Hugs, Kellie



#5 cd3764

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Posted 29 July 2013 - 06:29 AM

Oh, hon - you should have never been started on methimazole!

 

Your FreeT4 level was in-range.     The hyperthyroidism treatment guidelines indicate that the patient

is to take the lowest possible dose that will maintain the FreeT4 level near the high end of the range,

regardless of TSH.

 

Well, your FreeT4 level at the tine you started 20mg methimazole was already near the high end of 

the range.   (for whatever it's worth, my FreeT4 level was 2.88  (range .76-1.7) when I started

methimazole and my dose was 10mg)

 

No wonder you had such a reaction - so very sorry!

 

I suspect your TSH was suppressed (below-range) and your doctor declared you hyper (many

make this mistake)    Suppressed TSH with in-range FreeT4 (and FreeT3) levels is called subclinical

hyperthyroidism and this is watched, not treated.

 

Now, you mention symptoms - would you kindly share just what they were?     Please know symptoms

can be deceiving, labs don't lie.    I doubt you are dealing with hyper symptoms because it's unlikely

you are hyper (you weren't hyper when you started meds and the methimazole most likely drove your

thyroid hormone levels down too low.    The "return" of symptoms you think you are experiencing  are

most likely newly-developed hyPO symptoms.   (Some hyper/hypo symptoms overlap - such as palps,

anxiety, fatigue, brain fog, etc.)

 

In addition, did you get a FreeT3 test?     It often looks like this on a lab report:   Tri-iodothyronine,

free, serum.

 

There's a chance you have a form of Graves' Disease called "T3 Thyrotoxicosis" in which the

patient has suppressed TSH, in-range FreeT4 and elevated FreeT3.    That is usually treated

with a beta-blocker.

 

Truly, you should not be on an anti-thyroid drug right now.....

 

Diet can be a contributing factor to the development of Graves' but it's usually the excess intake

of dietary iodine that is problematic (such as what might be in kelp supplements).     Here's some

info about triggers for thyroid disease:

 

http://elaine-moore....83/Default.aspx



#6 skellie10

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Posted 29 July 2013 - 07:48 AM

Oh WOW! CD3764!!! How interesting!! I think it's time for a new endo!?!? My symptoms: about a year ago it started with heat intolerant, really bad. Heat rash all over me. And this lasted throughout winter, summer rolls back around and it gets worse. I'm in Indiana so it gets pretty humid. Then heart palps, tremors in my hands, anxiety, nervousness (I wrote off as anxiety and popped xanax/klonopin prn). Had trouble sleeping, weight loss, hair thinning, and just general hyperness-all the time. Back in April I noticed a drastic change suddenly. I was exercising daily, religiously, and noticed my muscles ached most of the time, it was difficult to even get up and do anything and that's what sent me to the dr, I just knew something was wrong. Blood tests showed the thyroid numbers wacky but my liver enzymes were high as well. Blood tests: and these include the liver results, could it be related I don't know.
**11/10/12
Had some other issues last year (leaking from breasts/weird pregnancy symptoms-was not pregnant) and they checked my TSH and estrogen:
TSH - 1.56 (0.59-5.56)
Estrogen - 170.3 (156-350).
**6/11/13
T4 - 10.75 (4.50-11.70)
T3 - 9.4 (2.0-4.4)
TSH - 0.01 (0.30-5.00)
Liver that was high:
AST - 85 (11-32)
ALT - 80 (9-43)
**Retested 6/20/13
TSH - 0.01 (0.30-5.00)
T4 - 9.05 (4.50-11.70)
Didn't retest T3, why I don't know!
Liver ALT 82 (9-43)
Liver AST 56 (11-32)
**7/1/13
T3 - 4.2 (1.7-3.7)
T4 - 1.4 (0.7-1.5)
TSH - 0.05 (0.35-4.94)
Hepatic panel came back on this date all within normal range.
Hope you can make head to tales on all the numbers there. I also wanted to note that she did put me on Atenolol for the palps and tremors, has helped a lot! At the beginning of the year I had started on some new supplements: biotin (for the thinning hair) and raspberry keytones (trying to lose belly fat). I haven't looked into these yet for any effects they could have had on my problem now. I've been on glucosamine/chondrointin for my bad knees (loss of cartilage) for about two years now. By the way that stuff is amazing, if you have or know of anyone with joint problems. I swear by it, my pain level went from 6 and up to almost non existent after a year on these. Brand name-Osteo Bi-Flex. So....curious for anymore input you may have for me!! Thank you so much for shedding a whole new light on this for me, it has really, really helped!! Kellie



#7 skellie10

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Posted 29 July 2013 - 07:51 AM

By the way...after reading in the link you sent about the triggers, I do smoke. Hmmmm



#8 mmztcass

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Posted 29 July 2013 - 10:27 AM

Hi skellie:

 

This is really awful of your doctor to start you on the MMI when yoour Free T4 was in range.   :(   

 

As cd says, I do not see that your Free T3 (Triiodothyronine Free Serum) has been tested.  It looks like that you had a Total T3 done instead.  If the TT3 were to be used, I could see that this was high.  It may be likely that your FT3 would be high as well.  If that is the case your doctor should've been looking to see if instead that you have a T3 Thyrotoxicosis problem.  This means the T3 is high and it benefits from taking a beta blocker such as Propranolol or an Atenolol to lower it down.

 

The reason why the FT3 is preferred over the TT3 is that diet, hormones, etc. is not affected by the FT3 as it is with the TT3.  Too bad your doctor is not realizing this to check that out.  You may need to look for another doctor who understands this.  

 

{{{hugs}}}   :blink:



#9 cd3764

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Posted 29 July 2013 - 11:50 AM

Thanks for sharing your lab history.

 

Easy stuff first:   both hyperthyroidism and hypothyroidism can cause elevated liver enzymes....so can alcohol

intake, acetominophen intake and a host of other things.

 

I think you did have your FreeT3 level tested.....I say this because of the ranges you shared for your "T3" result.

 

(It would be helpful for you to make the distinction moving forward.    You see, the "plain" T4 & T3 tests measure

hormone that is bound to proteins, not usable by the body and often falsely elevated in women.   The "Free" tests

measure only usable hormone.    I can tell by the ranges that you posted for your 2013 T4 that this, too, is actually

a FreeT4 result.   Once again, based upon the ranges, I can tell that your earlier T4 results were indeed "plain"

T4 results)

 

Anyway, it's clear that your FreeT3 level was quite elevated in the past but, your FreeT4/T4 level has always been in-

range.

 

Since you tested positive for Graves' antibodies, it's clear that you have T3 Thyrotoxicosis.   Atenolol is a beta-blocker

but, Propranolol would be better for lowering the FreeT3 level.    

 

Besides addressing the cardiac issues that accompany hyperthyroidism, Propanolol actually interferes with T4/T3

conversion and can lower the FreeT3 level.     (T4 is our storage hormone and our bodies convert it to T3, the active

hormone)

 

The labs you posted from 2012 as well as the symptoms you've shared are an indication of mild hyPOthyroidism....this

often precedes the development of Graves'.

 

If you take steps to reduce your exposure to thyroid disease triggers, speak with your doctor about getting off methimazole

and switching to Propranolol,  you'll do much better.

 

Of course, it is prudent to continue getting labs every 4-6 wks. or so to stay on top of things.



#10 mmztcass

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Posted 29 July 2013 - 12:26 PM

Please find out for sure which type of T3 test was done.  I just looked up the lab values for the Free T3 and it is showing several different kinds depending on the lab company used. :huh: 

 

Good luck and {{{hugs}}}



#11 skellie10

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Posted 29 July 2013 - 08:31 PM

Thank you for clearing up the free t3 part for me, I didn't know there was a difference and explaining the difference between t3 & t4. My doc emailed me today mostly asking how my hives and itching were doing. She also mentioned that we could try PTU instead (she knows I'm not comfortable with the iodine procedure). Is PTU same as Propranolol?



#12 Decoy

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Posted 29 July 2013 - 08:45 PM

PTU is just another form of anti-thyroid medication which, by your labs you don't need. The beta-blocker Propranolol would more than likely be all that you need to get feeling back to normal.

 

Your doctor (just like mine) is trying to bring up the TSH level (this isn't going to happen with MMI or PTU). You might have to explain to her/him that this is not what is needed in your case. Yes it can be extremely awkward!!! but if you take the medicine PTU or MMI again you will end up hypo and really unhappy! Trust me I know!! I'm still trying to recover from hypo after being on the anti-thyroid meds when I didn't need to be on them! Silly doctors!



#13 mmztcass

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Posted 30 July 2013 - 10:53 AM

skellie:

 

It was explained that no ATD (antithyroid drug) of either the Methimazole, or Tapazole or anything else such as the PTU is needed when the Free T4 has been within the range from the start.  

 

Your doctor doesn't seem to be looking at the labs correctly and especially at the T3 Thyrotoxicosis to correctly diagnose the condition and give only a beta blocker of something either a Propranolol or Atenolol.

 

I suggest you look for another doctor to be diagnosed and medicated correctly according to how the Free Ts (both the 3 and 4) are doing.

 

{{{hugs}}}   :blink:



#14 skellie10

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Posted 30 July 2013 - 11:48 AM

Thank you all for helping me understand all of this, the difference in the meds and looking more in detail at my T3/4 levels. I'm going in next week to talk to her about propranolol, if she can't help me then I'll find another endo. Of all the research I've done I'm so happy I found this forum, all of your knowledge and experience has been a blessing to me. I'll send an update after my appointment. Thank you!!



#15 cd3764

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Posted 01 August 2013 - 09:46 AM

So you are armed with information, please take a look at the American Family Physician website info I'm sharing below.

It mirrors the treatment guidelines published by the AACE/ATA  (American Association of Clinical Endocrinologists/

American Thyroid Association) only it's written in "English" vs. doctorspeak.      

 

http://www.aafp.org/.../0815/p623.html

 

[font="arial, helvetica, sans-serif;"][color=rgb(0,0,0);font-size:12px;]Take a peek at the Treatment section....scroll down to the anti-thyroid drug section and then look at the section about [/color]methimazole[color=rgb(0,0,0);font-size:12px;]. [/color]

[color=rgb(0,0,0);font-size:12px;]You will see: [/color]

[color=rgb(0,0,0);font-size:12px;]"TSH levels may remain undetectable for months after the patient becomes euthyroid and should not be used to monitor the effects of therapy." [/color]

[color=rgb(0,0,0);font-size:12px;]Then take a peek at the section about [/color]PTU[color=rgb(0,0,0);font-size:12px;] and you'll see: [/color]

[color=rgb(0,0,0);font-size:12px;]"The goal is to keep the freeT4 level at the upper level of normal." [/color][/font]

 

 

Switching to PTU alone probably won't work for you since your FreeT4 level was already where it was supposed to

be before you even started treatment.

 

An alternate meds therapy for someone in your situation would be Block and Replace Therapy.  

 

The patient would take a small dose of anti-thyroid drug (usually either 5mg methimazole or 50mg PTU) which blocks

the production of thyroid hormones (both the T4 and T3).    The patient also takes a small dose of levothyroxine

(synthetic T4 preparation) in whatever dose is necessary to keep the FreeT4 level near the high end of the range.

 

Because Block and Replace Therapy incorporates the use of an anti-thyroid drug, it offers the benefit of immuno-

suppression (reduces antibody production).     Your doctor might be more receptive to this.



#16 skellie10

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Posted 05 August 2013 - 05:58 PM

I went back to my endo, notebook in hand, asked all my questions and talked about all I've researched. The reaction I got was "I'm the doctor here, I know what's best for you". She said I absolutely needed an anti-thyroid drug and that if I couldn't tolerate MMI I won't tolerate this PTU either. She only gave it to me to "make me happy" but ultimately I needed radioactive iodine and that "I'll obviously figure it out when my allergic reaction comes back"! HMMPH! I say!! So I'm on my mission looking for my new doc and I havent taken any of the PTU she rx'd. Adding something new....I've gained 8 pounds in 5 days and my right hand/wrist is hurting/numb just like classic carpel tunnel syndrome. Sound like I'm hyPO now?



#17 skellie10

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Posted 05 August 2013 - 06:03 PM

Oh no cd, I just now saw your last post about block and replace....wish I saw this before I saw the dr. That makes perfect sense in my situation, I'll be sure to speak about it with my new endo. Thanks!!



#18 Decoy

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Posted 06 August 2013 - 09:29 AM

Yes it sounds like you are hyPO. The weight gain and the carpel tunnel symptoms...

 

I don't think you'll even need block and replace (this might be my wishful thinking)

 

I'm going to pose a question to you because I think personally this has more to do with antibodies then we think. (read up on the affect cortisol has on the pituitary) Be real with yourself for a moment, how much stress are/were you under?

 

I still think your FT4 is over converting resulting in your high FT3 and propranolol on it's own would be sufficient to slow that down. Labs need to be done again to confirm this.

 

Your doc is a moron! Sorry to be so blunt but who would be so condescending to say, 'I'm the doctor here, I know what is best'. See if you can go to your GP and get the labs done. Then you are ready for Endo #2 (don't fret it seems to take us all a couple Endo's to find the one that knows what they are doing)

 

Keep us updated! :D







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