After going gluten free a year ago (I was found to be EXTREMELY gluten sensitive) I have had some really bad symptoms on and off. Finally Sept 1 I had a doc tell me to try cutting back on meds blood shows hyper and I had all classic hyper symptoms. Since Sept I reduced from 75mcg Levo + 20mcg Cytomel all the way down to just 50mcg Levo.
So now I have been on 50mcg Levo for just a month. My TSH dropped from 6.43 to 2.23 in just 33 days all the while on 50mcg Levo. With each drop in medicine I have a hypo phase (TSH jumps back up) and then after about 4 - 6 seeks when the "hyper" symptoms creep back in (fast pulse, frequent bowel movements, anxious, high pulse pressure). Seeing doc today and asking if I can reduce further. I have read a number of medical reports that going gluten free (if extremely sensitive as I am) can help absorb so much more med you can reduce it by average of 50% and I've read a few cases where Hashi's actually went into remission. In this last year my TPO antibody tests (3 of them) have been normal and I had a single nodule on my thyroid which has disappeared.
Any thoughts? My vitamins/nutrients, etc. (B12, D, Folate, etc.) are all pretty good.
I'm uncertain about the "gluten-free-increased-absorption" connection, but that seems more than possible.
I just wanted to congratulate you on, not only needing less replacement hormone, but specifically on the awareness to recognize it and the patience to persevere through the semi-roller coaster process of reducing your dosage.
I, too, have experienced over medication at 75mcg levo-only, and even 50mcg +5mcg liothyronine.
I've continually reduced, over a three-month period, having taken nothing for two weeks, recently.
As it turns out, "nothing" might be slightly too little. 😆
But going forward, my plan is an extremely gradual titration; a "less is more" approach, you might say.
I have come to respect the potency of these hormones, whether porcine or synthetic, and I believe there is no substitute for a fine tuned awareness and sensitivity to symptoms.
Roxanaleah, Thank you! It has been a struggle - over the last year my blood tests have not always really shown the overmedication and I've had a couple doctors want me to take MORE meds - not less. I was in horrible shape in Aug (extreme weakness, high pulse, anxious, loose bowels, head pressure) then FINALLY in September a doc suggested I start reducing meds. The unbearable fatigue/weakness is all but gone. I still have rapid pulse, weird on and off head pressure, high pulse pressure (pulse pressure is the top blood pressure number minus bottom blood pressure number like 120 - 80 = 40. 40 is your pulse pressure.) I discovered that a "high" or also called "wide" pulse pressure indicates hyper or Thyrotoxicosis. Mine runs 50+. Also read the old fashioned wy to know if you need to reduce Thyroid meds is to multiply your pulse pressure x pulse. If close to 3200 reduce your meds by half. For someone like me as I am reducing meds my bloods are up and down as my body tries to adjust - this little formula has been very helpful! Doc said no harm to keep reducing slowly and I will watch for the pulse pressure to come down. You can google it and easily find many medical references to high pulse pressure and hyperthyroidism. My pulse pressure being high is proof I am overmedicated even if my bloods don't always show it (no other health issues at all only thyroid).
There are medical reports that show gluten free can definitely require thyroid med reduction - average of 50% reduction. See these:
I have read a couple of your Replies re Pulse Pressure with interest. Have you considered doing a Post about it so more people can read it ? It could make an interesting discussion ... Thanks for the info ... 😊
Marz I want to see how the next couple weeks ago as I stepped down to 25 MCG Levothyroxine with my doctor's consent. It has been about a week since I dropped from 50 to 25 MCG and interestingly the pulse pressure x pulse has crept down and so has my pulse pressure. With this drop to 25mcg I had a few days where I felt kind of tired and fatigued but today actually feel pretty good. So yes I'll do a new post once I see this is valid for me but anyone is welcome to share the information not saying it's exactly precise or the "answer" for those of us trying to figure out if they're overmedicated and blood tests dont really show it - but can't hurt to try and see what your numbers are!
It's certainly possible for being gluten free to enable a reduction in meds. Doesn't seem to always work that way, but certainly can do.
A TSH of 6.43 going down to 2.23 with a reduction in hormone replacement is very unusual. It's definitely not the 'standard way' I'd expect these things to work. But a lot of us are not standard and don't react in the expected way with thyroid treatment.
You haven't given enough specific detail about doses, timings and test results to say much more than that. If you make a new post listing every dose you've been on, the test results and symptoms, as well as the history of how you were diagnosed in the first place there might be more to figure out.
The only thing to consider is that with Hashimotos there are often ups and downs. Your thyroid is slowly being nibbled away, so overall the thyroid function will be getting worse. But that during this process extra hormone can be dumped into the blood stream, giving a spike in thyroid hormone. If you're prone to these it adds an extra layer of difficulty to interpreting changes in test results.
SilverA, thank you for your reply. My blood tests have not really correlated to my symptoms until I was on 50mcg for a while and those 3 results (posted above) really showed how my Thyroid was kicking in. I started the reduction Sept 1 (pretty quickly went from 75mcg Levothyroxine + 20mcg Cytomel all the way down to just 50mcg Levothyroxine. I dropped to 50mcg on Oct 14. One month later on Nov 14 my TSH jumped to 6.43 (not surprising with the reduction). But what did surprise us was as I stayed steady on 50mcg of Levothyroxine my TSA dropped to 3.75 on Dec 5 and then dropped again to 2.2 on Dec 17. Interestingly some hyper symptoms started to creep back in (head pressure, anxious, a little weakness) which tells me my body his the saturation point again. Just yesterday doc agreed for me to drop to 25 and see what happens. Look at my reply above for interesting info on pulse pressure - something I just recently learned.
There are medical reports that show gluten free can definitely require thyroid med reduction - average of 50% reduction. See these (also listed in my reply above):
It sounds like you're not able to stay on one dose for 6 weeks in order to get accurate blood tests, so in that case take them with a bit of a grain of salt. In my experience things are very up and down for the first few weeks on a new dose, an reducing is going to be a slower change than increasing, because you're also waiting for the hormone to wash out of your body. So you can't rely on them if they're not taken completely perfectly. Symptoms are more important than blood tests, anyway, though.
Definitely being gluten free can reduce the need for thyroid hormone. The advice for you is really the same as for anyone, be careful, go as slow as you can. Because you're 'breaking the rules' be extra careful, but that doesn't mean you shouldn't do it. I break the rules myself, but I just go super slow and take good notes, which it sounds like you're doing.
If TPO reach zero and TSH low with reducing thyroid meds does that mean you can get to the point where Hashimoto can go into remission? I’ve read you can reverse auto immune diseases with dietary changes.
In general, if you've had one positive result for Hashimoto's, then you'll always have it. Antibodies can go up and down any time, so it's possible to have false negative results that show low antibodies, but they just happen to be low that day, and will eventually pop back up, and in the long term you've always got Hashimoto's.
Also Hashimoto's permanently damages your thyroid, so over time your thyroid function will slowly reduce.
However, various things can reduce the amount of antibodies, improve your body's effectiveness at using thyroid hormone, and improve your health generally. This is a bit of a roll of the dice, as Hashimoto's can vary a lot in how much trouble it gives different people, and in how much improvement they get from things like going gluten or dairy free, and getting vitamin levels optimal.
Something like 80% of Hashimoto's sufferers will feel improvement being gluten free, and something like 20% of people being dairy free. This will enable some people to reduce their tablets by a bit, but most importantly it can smooth out the ups and downs of flares, by keeping antibodies lower. Very very rarely people describe themselves as being completely in remission from Hashimoto's, and stop taking their hormone altogether.
Hi Polly - yes that is what I read as well but not sure. I know once you have Hashi it's lifelong but I do read/believe diet can impact the need for meds and perhaps even help with remission. The jury is still out!
Let’s hope it can go into remission. Failing that lowered amount of replacement. Btw I did my pulse pressure and it was 2400 so I’m not over replaced like I thought I might be. Shame. Do you have adrenal fatigue too Sunny?
Polly I do not have adrenal fatigue did the saliva test and was told the adrenals are perfect. Will be stepping down my meds and fingers crossed I don't launch into hypo. Doctor appointment yesterday went well and after looking at everything doctor said no reason at all I can't continue reducing meds I'm already on such a low dose. He just said to let him know if hypo symptoms get to be too bad. Glad you got to test your pulse pressure times pulse. Mine is well over 3200 but fingers crossed that number starts to come down. Other than this dang thyroid I'm healthy as a horse so thinking it has to be from months of overmedication. Time will tell!
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Trying to get better but desperate
Topiramate and Levothyroxine.
On Block and Replace - can I have both hyper and hypo symptoms?
TSH higher after Levothyroxine
