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Why won't my meds work?

Hi all!- I've had hashimotos since the birth of my 1st child at 23. I am now 33 with 3 children. My dosage went up with each additional child. I weigh 152 (5'4) and was up to 275 mcgs of levo daily in May of this year. I was being treated by my GP. I finally decided that it seemed like a lot, and yet again, we were going to need to go up.... I thought it was time for an endo. She immediately said it was too much and that we will move to synthroid and never look back. She said the dosage really should correlate to your weight (for instance, she said i should not be on more than 150 and ideally would respond positively to 125). I was pretty happy about that! I thought it would be nice to diet and have it work, or not to lose half my hair volume in a matter of weeks, or not to feel a little "foggy" all of the time... i even gave up any drinking because just one drink and i was so exhausted-i guess because i started that way?- that I was completely useless and needed a nap. Needless to say, I was hopeful that some (or all) of that might go away! She started me high 175 mcgs of Synthroid in May. She thought that might actually make me hyper and asked me to be on the lookout for the classic hyper symptoms (which I'm very familiar with having been hyper for a period of time after each birth)- they never came. I thought maybe we had hit the nail on the head first time! I didn't really gain all the benefits I'd hoped (weight didn't move, still pretty tired, etc.) but I wasn't swollen all the time (sounds weird, i know, but i had been swollen all the time for years and just got used to it) and i did really feel less foggy! Well, results are in: TSH 23.5 (much higher than the 4.69 on 275 from May) and FreeT4 .86 (normal range). Has anyone had this issue? Meds just keep increasing and so does TSH? Does anyone have to take a large dosage (200 or more) of synthroid just to stay in normal range? Do you continue to see a year over year (or even month over month) increase in the dosage? I did not have T3 tested this time, but it was within normal range in May (1.04) My follow up is this Thursday, if anyone can think of any questions I should ask other than "uh, why isn't this working?" Please let me know! Also, is there anyone who has just found thyroid replacement ineffective no matter what you take? Thank you all so much in advance!! I really appreciate it! :)
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Avatar universal
Good info from Red Star.  Just wanted to add that if you are going to be requesting additional tests, I would also suggest Vitamin D, B12 and ferritin.  A deficiency in either can cause symptoms that mimic hypothyroidism.  Also, low D and Ferritin can adversely affect metabolism of thyroid hormone.  D needs to be about 55=60, B12 in the very upper end of its range, and ferritin should be about 70 minimum.
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1756321 tn?1547095325
Check the article out from the celiac disease website: Asymptomatic or Silent Celiac Disease.
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Avatar universal
I have not been tested for celiac, and she did mention that as a possibility if I wasn't doing well on Synthroid, but I don't feel like I have some of the pretty classic symptoms of celiac. Tummy gets messed up, but hypo can do that and I've never felt like I could point to a food doing it. But I haven't read up on celiac extensively, so I could be way off the mark. Like with everything, hypo shares similar symptoms.

I appreciate the feedback on the dosage. I would love to think I might have a little more energy. I had always just assumed that wasn't going to happen for me. I will push for free t3 and also discuss what you've said about the numbers that matter, and the ones that really kinda don't at this point. She did also mention possibly substituting with an additional med (I assume the T3 you spoke of), but she really has no numbers for a frame of reference at this point, not having tested.

I'll let you know how it goes tomorrow!
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Avatar universal
Yes, the lower you are in the FT3 and FT4 ranges, the more hypo you are.  Very few of us are comfortable in the bottom of either range.  

The argument has always been that the brand names (primarily Synthroid and Levoxyl) are much more consistent than generics.  This has largely been interpreted to mean that generic isn't as potent as brand name.  However, the two don't vary by as much as a 33%.  Typically, what we see is people having to change dose by maybe 12.5 mcg when switching from one to the other.  When I started seeing my endo, the first thing he did was switch me from generic to Levoxyl, same dose...endos tend to like brand names.  My labs actually went down, indicating that I wasn't getting as much useful meds from Levoxyl as I had from generic.  Absorption can always be an issue, and some people seem to absorb one brand or the other or generics better, probably having to do with the fillers in the tablets.  You do take your meds first thing in the morning, on an empty stomach and then don't eat or drink anything for 0.5-1.0 hour, correct?

Really, how much you take is irrelevant.  What your body doesn't absorb is simply flushed out.  Levo isn't a drug, it's the exact chemical your body would be making if it could.  In that respect, it's more like a water soluble vitamin than a drug.

It sounds like your hypo symptoms have never really gone away despite the high dose of meds.  That's a pretty good indicator that you might need T3 in your meds.  Unfortunately, this doctor isn't giving me that warm, fuzzy feeling when it comes to thyroid.  FT3 should be tested every time labs are drawn.  If she doesn't test FT3, she may also be reluctant to use T3 meds.  In your case, I'd certainly be chasing FT3 as a possible culprit.  Also, dropping your meds by as much as she did was not good.  As I said, we sometimes have to adjust a bit when switching, but 33% is ridiculous.  

Weight is really only used to determine an initial dose.  It gives a starting point.  Beyond that, we're all different, and many of us with vastly different weights are on the exact same dose.  It's all a matter of how your body processes the meds.  This also bothers me about this doctor.  She's trying to fit you into a numbers slot, and dosing thyroid meds is an art, not a matter of pigeon-holing you into proper numbers.  It all has to do with relief of symptoms, and that requires dosing to relieve them.  
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1756321 tn?1547095325
Have you been tested for Celiac disease yet?
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Avatar universal
Ok, so if I'm understanding correctly, the lower the Free T3 and 4, the more hypo you are- even if I'm range. That helps understand those numbers better!

She did actually explain why she thought the lower amount on Synthroid would be better, and it really did make sense- it just didn't end up working out the way she thought it would. She felt that such a high dosage of Levo, and the numbers still not fully controlled (based on the higher TSH), that Levo just wasn't absorbing and working effectively. She said amounts vary, but the higher end of the dosages are weight related. She felt that Synthroid was going to work effectively and therefore would require a much lower dose (150 at the most, she thought). She was worried that 175 on working mess would actually be too much, but alas..... It was not enough. She did say that if changing to Synthroid didn't help, there might be another underlying issue (some reason for malabsorbtion?)

As far as symptoms go, I guess I don't have much of a frame of reference. I've had thyroid issues since I was shortly out of my spring chicken years. I really attributed everything to motherhood and aging. I only was tested then because my hair was falling out so bad that I literally had a completely bald male pattern baldness- and I'm not a male. When the levels came back at 189, he made me do the test again because he had not seen those levels in someone my age, and was surprised I wasn't so exhausted that I passed out walking into the office with levels like that (apparently that's a real thing!) The results from 5 days later? 191- med time. Anyway, all of that is to say, I'm always tired, always. I always have fluctuating tummy issues, fluctuation headaches/migraines, fluctuating hair fullness, fluctuating sensitivities to Heat and cold (although generally cold) and I'm a naturally anxious person. I have always chalked it up to "getting older". People have always laughed and rolled their eyes, but it's really how my body has felt every day for years, achey, tired, and run down- things like the occasional dry eyes just never seemed like a big deal, I guess. I didn't notice any real changes, but I guess variations of exhaustion are just that.

Thank you again for your help and interest! I'm going to ask for a Free T3 and see what those numbers look like and ask if there's an underlying issue we should be thinking about instead of constantly fighting a symptom.
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Avatar universal
Thyroid test ranges are very flawed.  Based on where many of us found relief of symptoms, the whole bottom half of the FT3 and FT4 ranges should probably be considered hypo.  Furthermore, we all have our own personal sweet spot.  I may be perfectly happy with an FT4 of 0.86, while you may be hypo.  At 1.23, you feel good, but I'm hyper as can be.  We all have to find where we feel best.  

Your FT4 in May was on the higher side at 64% of range, and now it's very much on the low side at 14% of range.  Have you seen a return of hypo symptoms with that huge change in labs?  FT4 is definitely too low now, whether "in range" or not.

T4 is the "storage" form of the thyroid hormones.  It just kind of floats around in your bloodstream until your cells need thyroid hormone.  When they do, T4 is converted to T3, which is the "active" form of the hormones, the only form your cells can use.  So, testing FT3 is extremely important.  Many of us, especially once on thyroid meds, convert slowly.  If that's the case, you can keep dumping T4 meds into the bloodstream until the cows come home, and you are still going to feel hypo for lack of FT3.  

Also, TSH is a screening test, at best, for asymptomatic individuals.  Once on meds, it often becomes useless.  It's only useful as long as it inversely tracks FT3 and FT4, i.e. it goes up when FT3 and/or FT4 go down and vice versa.  TSH is a pituitary hormone and can be affected by any number of factors in the hypothalamus/pituitary/thyroid feedback loop.  For example, I have a pituitary issue, and my TSH hovers around 20.0 all the time.

I assume you were on generic levo before seeing your current doctor?  She switched you from 275 mcg levo to 175 mcg Synthroid and expected you to be hyper?  Did she explain that in any way?  It makes no sense at all to decrease meds by more than a third and expect you to go hyper.    

262.5 mcg is a big dose.  Very few of us take that much (perhaps very large people).  When you take that much just to keep your TSH in line, it's usually a sign that you don't convert well and need to add a direct source of T3 (Cytomel and generics or desiccated porcine thyroid, which has both T3 and T4 in it).  Of course, that's all guesswork with no FT3 to go by.

I'm really curious about your symptoms now.  You haven't seen major changes in symptoms with that huge drop?    
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Avatar universal
Sure thing! I know you guys get asked this same kind of question a lot. I really appreciate any feedback. I generally understand medical issues fairly well, but thyroid function, testing, ranges, medicine, etc is a little harder for me.

The May Tests and results (on 275 Levo)
TSH: 4.69 H Standard Range 0.36 - 3.74 m[IU]/L
THYROXINE FREE: 1.23 Standard Range 0.76 - 1.46 ng/dL
Total T3: 1.04 Standard Range 0.60 - 1.81

August results (on 175 Synthroid since May)
TSH: 23.50 H Standard Range 0.36 - 3.74 m[IU]/L
THYROXINE FREE: 0.86 Standard Range: 0.76 - 1.46 ng/dL

I do not see any test for Free T3 in my Test results, but they only date back to 2011. I can tell from the posts on here that I need to ask for that test. What if that is normal too? Is the TSH level a non-issue when measuring as long as Free T3 and Free 4 are within range? 23 is definitely not the highest I've been (was 189 when diagnosed) and while I don't seem to experience symptoms as strongly as some (everyone is different), I do struggle with energy, headaches, weight gain (or inability to lose) and hair loss, I'd still like to see those go! I also don't want a ton of medicine in my body if my body doesn't really need it.

I just received a call from the nurse who asked me to take a half pill, along with the 175, for the next 2 days until I see her Thursday to adjust. If the numbers are that simple, that means about a 262.5 dosage total. It just seems like a lot to me. If I'm only looking for Free T3 and Free T4, I'm wondering if the TSH even matters? Does it sound like I should be looking at something else along with my Thyroid?

Thanks again! I really do appreciate it!
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Avatar universal
Before I go into a lot of detail, please post the reference ranges for your FT3 and FT4.  Ranges vary lab to lab and have to come from your own lab report.  Also, is that specified as FREE T3 (FT3) or just T3?
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