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Synthroid??? (Read 4292 times)
Britt
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Synthroid???
01/22/13 at 14:13:33
 
Hi everyone! So I've been fighting taking synthroid for three years now after having a bad reaction to Armour ( bio identical thyroid taken from pigs) it made me super edgy and weird feeling. The problem with this is that I was not in a good place when I started taking it. The dots had not been connected between my urticaria and fragrances etc. and I was having severe "panic attacks" all the time. But nonetheless, I still believe it made me feel icky. A couple weeks ago, after some bloodwork, my gp said it was time to go on synthroid (this time synthetic thyroid) but I am so nervous. New medications give me so much anxiety! So my question is.....can anybody give me any good or not so good experiences on synthroid?? In general, does it seem to be an agreeable medication for people with mast cell disorders? Any comments would be greatly appreciated!!!! Of course I've googled side effects from Synthroid and all I get is a bunch of horror stories. But my rational side says that people don't post about good experiences, only the bad?!?!?
Joan, I've tried to personal message you back, but for some reason I haven't been getting the option to pm lately  Huh
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BlueSkies
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Re: Synthroid???
Reply #1 - 01/22/13 at 16:01:16
 
Hi Brigitte,

PM is down for everyone today - and they are working on it!  

I take thyroid, and I have TMEP mastocytosis (cutaneous form, hope I spelled that right -it's late.)   I take the Armour thyroid, which works great for me.   I had problems with the syntheic ones, years ago.  No horror stories, just did not tolerate them well.   This is just my experience.   You can already see that I've reacted differently than you. (My impression is that reacting differently is the norm around here!   Smiley  )

I'm new at all of this, so I can't give you any general pros or cons about it.
Maybe someone else will have some more info.

Wish you well on getting this worked out,
BlueSkies
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Britt
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Re: Synthroid???
Reply #2 - 01/22/13 at 17:01:27
 
Thanks blueskies!!!! I'm wondering if I should try Armour again before going in synthroid. But as you said perfectly, different reactions do seem to be the norm! Trial and error. I dread the error though! My body is so fragile to erroneous experiments! I think all of us on here are in that same boat....anything has the ability to put us over the threshold!!! So I think, if I'm feeling well enough when I wake up tomorrow, I'll give the synthroid a shot! And if it's no beuno, maybe I'll try Armour again. As anxious as I am to try thyroid medication, I am equally as anxious to see how a higher level of thyroid will make me feel! Has Armour made you feel a lot better??
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Starflower
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Re: Synthroid???
Reply #3 - 01/23/13 at 01:04:38
 
I take Synthroid (the brand for consistency, not generics).  My TSH was so high when I was diagnosed with hypothyroidism... I had no choice but to take some kind of replacement hormone!  It doesn't seem to bother me... it's just replacing something my body can no longer make naturally.  I can't imagine why it would be a trigger, unless a mast cell patient had a problem with the dye and/or filler.  

I haven't tried Armour... for religious reasons, I don't consume anything that comes from pigs.  

Heather

ps - There ARE plenty of scary blogs about thyroid medications... but I suspect a lot of those people have other (undiagnosed) health issues going on and the medication is not the root cause of the problem.  Just my two cents.
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KatFromMD
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Re: Synthroid???
Reply #4 - 01/23/13 at 05:43:52
 
I've been on Synthroid steadily for about eight years now, and first took it over 20 years ago.  As Starflower said, whatever brand you start with (Synthroid or a generic), you need to stay with that brand, as each one is slightly different, so changing between manufacturers is like randomly taking a different dose.  My doctor only prescribes the name brand.

I have been generally stable on Synthroid and don't think I could function without it.  On the other hand, I have had a few times when I was either taking too much or too little, and didn't do well - but I could tell something was wrong and went back to the doctor for a dosage change.  In particular, when I was taking too much, it surprisingly caused debilitating menstrual pain over multiple days.  At that time I also dropped lots of weight despite excessive eating....clearly, I was just on too high a dosage.

What dosage are you taking?  What plans does your doctor have for monitoring your levels?  Have you considered going to an endocrinologist about this, rather than just a GP?  You really need to calibrate your dosage, and when first starting on it or changing your dosage, you should have bloodwork done regularly (I think mine was monthly).  I personally think with your reactions to medications it might even make sense for your doctor to give you samples of lower dosages and have you work your way up to the dosage they want you on.

If your thyroid levels are low, I do think it is worth the risk to try it out.  You may feel much better energy-wise.  I often get depression when my thyroid level is low, and the Synthroid helps tremendously with that.
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Britt
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Re: Synthroid???
Reply #5 - 01/23/13 at 08:57:37
 
Thanks for your responses. Over the past 3 years that they have been checking, my thyroid has been skating the line between lowest normal and slightly below normal (normal range being between 52-100+) I was tested in August and it was 47. And my last test from about 3 weeks ago was a 56. What are some of the most common side effects of low thyroid? and in turn some of the benefits of treated thyroid?? Is it normal for docs to treat normal/low thyroid? The doctor never really made it clear that I NEED to be on thyroid, but rather that I "try" it and see how I feel. He gave me 50 (mgs?) the white pills, and told me to cut them in half. But I know my body all too well, so after reading a lot about it, I realized that it is not uncommon to start at 12.5, so I cut the halves in half with a pill cutter (but I don't think they came out exact Sad. ) I know I've unloaded on you all about the plethora of medications I'm on, mostly psychiatric, (and some for the urticaria) so it just scares me to add another. I feel like a slave to medications. I'm on 4 psychiatric (all low dose) and it's scary because although they don't do a great job at making me feel better, I'm a scared to go off of them. I've tried lowering doses to start weening off at different times (at the doctors request), but I always feel like hell. I don't know if its withdrawal or be because I need to be on them. So I always start taking them again. I got on the majority of the meds 3 years ago when I was have non stop panic attacks. It was after the damage had been done and I was already on these meds that I began to realize that I was reacting severely to our laundry detergent and dryer sheets, and that the panic attacks/anxiety and irritability started right after laying new carpet throughout the house. Ugh!!!! Sorry to unload again. Has anyone else out there on the forum been through a similar roller coaster ride of medications???  Undecided I'm sorry again for writing in crisis mode. I just don't know where else to turn sometimes, and I feel like you all listen and are very knowledgable. Thanks for reading and posting!!!! One day I hope to have it at least somewhat dialed in and will in turn be able to help someone else!!!!
Update.....I took one of my half halves earlier today. I feel I a little funny, but I'm going to try and push through the strange feelings and hopefully they will go away once my body adjusts?!?!
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« Last Edit: 01/23/13 at 11:03:49 by Britt »  
 
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KatFromMD
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Re: Synthroid???
Reply #6 - 01/24/13 at 05:45:17
 
If your doc said to cut the pill, I'd guess that is fine, but you should take it first thing in the morning, and take it at the same time every day.  Also, to make sure you're getting a consistent dose, you should take it on an empty stomach and wait an hour (or at least a half hour if you're starving) before you eat, so that nothing interferes with absorption.

Some of the most noticeable symptoms of low thyroid are fatigue, lack of energy, trouble maintaining body temperature (generally always feeling cold), weight gain and depression.  I'm sure there are plenty of others, but I'm not thinking of them off the top of my head.  Thyroid hormone is basically like the gas pedal in your car.  If your body is making more of it, it's speeding up your system (metabolism).  If your body is making less, you just don't have enough juice.  When you supplement a low thyroid with synthetic hormone, you're just helping to rev the engine up a bit.  Like I said, one of the most obvious things it helps me with is depression, which I get pretty noticeably when my levels are low.  (A couple of times I've been through a number of antidepressants - that I NEVER tolerate well - only to find that what I really needed was thyroid meds.)

I do think you might want to see an endocrinologist, rather than just a GP.  I'm my experience, GPs just don't know enough about it to properly medicate you.  You should have, at minimum, both your T4 (thyroxine, the primary thyroid hormone) and TSH levels tested, because they form a feedback loop, and without both of them you don't really know what your body needs.  For instance, my thyroid levels don't normally dip all that low, but my TSH (Thyroid Stimulating Hormone) has been known to go very high.  In other words, my body feels that it needs more thyroid hormone, and it sends out TSH saying "make more, make more", but my body just barely ekes out enough to be in the normal range.  My body sends out more TSH "make more", but I can't make more.  This is an indication that I need thyroid supplementation, even if technically my T4 levels are in the normal range.  You need to know these levels, and have someone who knows how to interpret them, to really get the full picture of what's going on.

Unless your thyroid is seriously low, you don't HAVE to be on thyroid supplements.  For post-menopausal women, it is actually "normal" to have "low" thyroid, as the metabolism slows down.  However, you might feel better with some supplementation.  As I said before, the only side effects I ever had was when I was taking too much of the stuff.
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