Viewing 11 posts - 1 through 11 (of 11 total)
  • Author
    Posts
  • SueAndHerZoo
    Post count: 439

    Hi there old-timers and newcomers. I’m sitting here in shock this morning because I had blood drawn a few days ago and saw the results online last night. My TSH has more than tripled in 6 months! I’m wracking my brain to think of what has changed in that time to cause this drastic rise and am really coming up with nothing. So I have to wonder…… does taking Levothyroxine (instead of Synthroid) really have that much potential for fluctuating doses each time you refill your prescription? Could THAT be what’s caused this spike? I have a call in to the doc and of course he’ll want to see me and of course I’ll have to wait a week or two to get in, so I’m trying to do my homework in the meantime.

    Obviously we’re going to need to adjust my dosage but I’m wondering if I should also insist that while we’re doing that we should also start me on Synthroid (instead of Levothyroxine) so that when we DO find a good TSH level again, maybe I can KEEP IT THERE.

    Would manufacturers really have that much inconsistency in their product? Or can you think of anything else that would cause me to triple my numbers like that?

    I’m stumped. And since I logged on here I notice a lot of new posts and people so I’m off to go see if I can offer any assistance to those while I ponder my latest challenge.

    Hang on tight – the rollercoaster is taking off again!
    Sue

    Liz1967
    Post count: 305

    I use generic levothyroxine made by Lannett. It is actually more bioavailable than Synthroid. The bioavailability is different by manufacturer but remains consistent within the manufacturer. The lab making the generic is listed on your prescription bottle so if the manufacturer has not changed, it should be consistent. You have as much chance of name brand being inconsistent as you do generic due to some kind of manufacturing error. In fact, in 2013 Synthroid had two recalls due to incorrect product labeling, leaving some people taking a higher dose. Tirosint, which is liquid levothyroxine in a gel cap, is supposed to help with absorption issues. As to why you are suddenly hypo, no clue. I always wonder if thyroid remnants are left after TT producing some hormone and they eventually die, similar to after RAI, leaving you more hypo but that is pure conjecture. Being hypo is miserable.

    SueAndHerZoo
    Post count: 439

    Thanks, Liz.
    I have searched all the fine print on my Levo bottle and have never found what looks to be a manufacturer but I will search again when I go home for lunch, and if that doesn’t work, I will take the bottle to the pharmacy and ask them to find it. However, even if I know who the manufacturer is, I can’t control who fills my prescription when I call in a refill, can I? I always assumed I was at the mercy of whatever supplier the pharmacy was going with that year or that month.

    Hypo isn’t fun, but it’s still not as bad as being HYPER, at least for me.
    Sue

    Liz1967
    Post count: 305

    I have used Kroger pharmacy and the manufacturer has never changed in three years. Costco uses a different manufacturer and Walgreens also uses Lannett and has for years. I check the bottle each time I get a refill just in case. Should ask your pharmacy if they notify people of manufacturer change as it does matter. The difference between manufacturers is slight, has to be within government regulations, but some people are sensitive.

    SueAndHerZoo
    Post count: 439

    Actually I did ask my pharmacy to please notify me if they ever change manufacturers and they assured me they would, but do I trust that? Nah. I’m sure it’s not on the top of their priority list and the way staff changes and how busy they always are, I’m not counting on that. We have to watch out for ourselves to I will go search my pill container again with a magnifying glass.

    However, I doubt a manufacturer change could cause THIS MUCH of a rise in TSH….. something else must be going on. But what?!?!?! What I wouldn’t give for some consistency in this old bod of mine! :rolleyes:
    Sue

    Kimberly
    Online Facilitator
    Post count: 4260

    Hello – Agree with Liz1967 that a change in manufacturer would be something to research. Some states require the pharmacist to tell you if the manufacturer changes, while others do not. I would also let your pharmacist know about this issue just so he/she can be on the alert in case other patients report a similar issue.

    With my pharmacy, the manufacturer is noted via a 3-letter code somewhere on the label.

    Hope that you can get some relief soon!

    P.S. Another thought – absorption would be another issue to consider, as I recall that you have a co-existing condition. A visit to that doc might also be worth your while. Tirosint comes in a gel capsule, which is supposed to provide better absorption. The downside is that a lot of insurers aren’t yet providing coverage for this med.

    SueAndHerZoo
    Post count: 439

    Hi Kimberly.
    OK, I think I saw a 3-letter code but didn’t know what it was. Unfortunately I have thrown away my old bottles so no way of knowing if the manufacturer has changed but I can certainly keep an eye on future bottles. However, even if the pharmacy DOES change manufacturers, what can I do about it? If that’s what they are providing that particular month I don’t imagine I have much choice, that’s why I was asking about switching to Synthroid to avoid future inconsistencies.

    Yes, there are co-existing conditions, and I’ve gone through my medical history since April to try to pinpoint any changes. I DID start taking a colitis med again in June, but I have since weaned down to almost nothing so I would think my TSH would also be coming down, not up. I know the TSH is slow to catch up with it’s reporting, but I’ve never had my TSH climb like this from the colitis med before. Go ahead and say it – it’s just old age and my body is changing! 😆

    I’m waiting for a call back from my endo and am going to ask him to write me a script for the next higher dosage which I will then alternate with my present dose. I hate increasing or decreasing my dosage too quickly – I am always symptomatic during the transition.

    I’ve made some dietary and fitness changes in the past 6 weeks but even those shouldn’t have caused the rapid increase in TSH and, even if those did, I will have to adjust the meds accordingly because these are dietary and fitness changes that I can and will be keeping.
    Sue

    emmtee
    Post count: 148

    I go to CVS, and the manufacturer of my levothyroxine is Mylan. I found the name on the back side of the label, right underneath the box where it describes the tablets, and it’s in the smallest print imaginable. I almost need a magnifying glass to read it. On the prescription paperwork, the manufacturer is listed right underneath the name of the drug in the same tiny print.

    I’m pretty sure that my pharmacy hasn’t changed manufacturers in the 10 months I’ve been on it, because the appearance is exactly the same. It’s pretty distinctive – a tiny oblong pill in a shade of lilac that hasn’t changed. I know that many manufacturers (including Mylan) have different colors for the different dosages. The colors seem to be chosen to match the colors that Synthroid uses. The shape and markings are completely different, though.

    Kimberly
    Online Facilitator
    Post count: 4260
    SueAndHerZoo wrote:
    However, even if the pharmacy DOES change manufacturers, what can I do about it? If that’s what they are providing that particular month I don’t imagine I have much choice, that’s why I was asking about switching to Synthroid to avoid future inconsistencies.

    You are right in that I don’t think a pharmacy would let you request a specific manufacturer. However, if you find out there *is* a change in manufacturer, most doctors will recommend getting follow up labs done a few weeks after starting with the new manufacturer to see if the dose needs to be tweaked. And if your pharmacy is constantly hopping all over the place with manufacturers, yes, that would be a good reason to switch over to a brand name!

    SueAndHerZoo
    Post count: 439

    OK, the doc’s assistant called back and said the doc agrees – your dosage need adjusting so he wants you to start taking 88 mcg. 6 times a week and 75 mcg. only once a week (instead of twice like I’ve been doing). I commented that that is a really, REALLY tiny change and that I thought I needed to do more than that. She said that since my TSH was just slightly over the high end of normal that we didn’t need to change it much. I told her that even though it’s only a bit away from “normal”, it’s FAR off from where I felt my best (a TSH of about 1.5). I had been doing some calculations and suggested to her that I would like to do alternating days of 88 and 100 mcg. which would put me at 94mcg. a day (10 more a day than I’m taking now). She said she would go discuss it with the doc and call me back. I asked her to also run by him the idea of switching me over to Synthroid instead of generic and she said she would. 10 minutes later she called back, said he agreed with my dosing suggestions and that he liked the idea of switching to Synthroid. I guess I should be very grateful that I have an endo who actually LISTENS to what I want, huh?

    Of course it wasn’t really that simple because then the pharmacy contacted me, said it was “too soon” to refill my prescription, I explained it was a CHANGE, not a refill, then they called back again and said the insurance company won’t pay for the brand name unless the doctor himself calls them, etc. By that time the doc’s office was closed but I’ll continue that battle Monday morning.

    So I’m strapping myself in for the upcoming 6 weeks of roller-coaster riding because I know from years of experience that whenever I change doses I go through a myriad of symptoms until the TSH settles in again. My only hope is that since I am technically hypo the symptoms won’t be as bad as before because I’ve always been HYPER, never tried a dose change when I was hypo.

    Thanks for the support and comments – as always, much appreciated. :)
    Sue

    snelsen
    Post count: 1909

    In my experience, I always get a written RX for Synthroid, and request the end write “Synthroid only.” It worked pretty well for me in the same circumstance you had. Unrelated to your circumstance right now, I always look at, and read the bottle before I take it from Pharmacy, including looking at the pills. This is always an issue, or can be.

Viewing 11 posts - 1 through 11 (of 11 total)
  • You must be logged in to reply to this topic.