KimberlyOnline FacilitatorFebruary 2, 2016 at 11:05 amPost count: 4262
This thread is for patients to share their *personal experiences* with T4-only therapy and T3/T4 combination therapy. Please note that telling another patient which medication they *should* be on is considered giving medical advice. This is a direct violation of the guidelines for this forum, which every participant on this forum reviewed and accepted prior to making their first post. Violators may be subject to moderation, suspension, or removal.
The GDATF’s staff and the members of our Board of Directors are committed to providing credible, evidence-based information. We follow with interest all research related to T3/T4 combination therapy, in particular, the emerging theory that patients with a specific genetic type might be predisposed to doing better on combination therapy.
In the last five years that I have been here, the GDATF has received not one cent from any pharma company that manufactures thyroid hormone replacement products. The Foundation actually has recently submitted a grant application to one pharma company for funding that would allow us to produce a special patient newsletter. Before the application was submitted, the issue was reviewed by our Board of Directors, who determined that funding could only be accepted if the Pharma company would have ZERO influence over the content of the newsletter.
I hope to see a lively discussion here, but please be sure that all posts adhere to the GDATF’s guidelines, which you can find in the “announcements” section at the top of the forum.laura1701February 11, 2016 at 5:15 amPost count: 16
I never felt right on T4/Synthroid only, after my thyroidectomy in 2010. It was a struggle. I took every strength from 88mcg to 125mcg trying to find some semblance of normalcy. I always had high or over range FT4 levels, low FT3 levels and a nonexistent TSH. I got educated and asked to add T3 to my T4 meds. I started out with a HALF of a 1/4 grain Naturethroid tablet which amounts to 1.125mcg of T3 and 4.75mcg of T4. A very small amount of T3 because I just knew I would be sensitive to T3 at first. Cutting those little tablets was tricky, but well worth it! I also switched to Tirosint instead of Synthroid.
Over the past 2 years, I lowered my T4 replacement to 75 mcg of Tirosint and slowly upped my Naturethroid to 3 – 1/4 grain tablets per day. Remember the Naturethroid has T4 too. So my total daily T4 is actually a bit over 100mcg. My total daily T3 dose is 6.75mcg. I split the Naturethroid dose and take it 2 times a day. Now-I have a low to mid range FT4 level, a mid range FT3 level and a more normal TSH that falls within the low part of the range. The optimal place for me. I feel almost like my old self for the first time since I was diagnosed 6 years ago and had the thyroidectomy. If it weren’t for the TED problems I would be able to forget that I have Graves’ disease. I will never go back to Synthroid or T4 only replacement!Liz1967February 12, 2016 at 9:57 amPost count: 305
I am fine on generic levothyroxine. I was actually on a good dose that the surgeon had determined, but when switched to endo, she lowered it because she for some reason liked the TSH around 4. Now I use a nurse practitioner and have been stable at a good level for many months. I am consistent with drinking coffee and not using proton pump inhibitors like Nexium, etc., as well as the hour fasting after taking levothyroxine and no calcium for 4 hours after. I had considered Armour or T3 when I was a bit out of whack, but once I figured out how slowly my body responded to dose changes, I learned to be more patient, never an easy thing for me. I never felt terrible but I feel normal now, except for the eye disease related anxiety!beach45February 22, 2016 at 9:03 amPost count: 178
I am on T3 (Liothyronine) and T4 (Levothyroxine); that combo has helped me maintain pretty decent health; I have not lost weight yet I did not feel well on T4 (Synthroid or Levothyroxine) only and had a lot of problems; I have been on some supplements too which help me; I wonder too if my gut was absorbing nutrients and the thyroid hormone better that possibly the T4 alone would have worked better. I’m still a work in progress yet I know I have come a long way since May of 2012 when I had RAI; it was very up and down for me for 2 years prior on Methimazole as no doctor could get me stable. So even though I’m still not happy with the 30 lb weight gain, I can say I have many more good days of recent and I’m happy with incorporating some T3; I’ve listened to many thyroidless people on other sites and some do really well on T4 only and some seem to need T3; I also wonder too when they used less of the I-131 back when and did not destroy the entire thyroid gland if that makes a difference as some of those people I run into are on less T4 and don’t even need to add in some T3; I can only say right now what works for me; I’m also very fortunate my moderate TED actually improved as my thyroid eye doctor said the antibodies post RAI can be active 3-5 years; it may be 1-2 more years that I need to see him just to confirm that everything is good;I tried with T4 and doing everything right like waiting 4 hours from taking calcium or iron and waiting to eat yet that all didn’t make much of a difference! Interesting topic and thank you for bringing this up!LdduggerApril 30, 2016 at 6:01 pmPost count: 2
I was put on thyroid medication at numerous levels that never made me feel normal, and then my endocrinologist put me on the generic cytomel 10 mg in the morning along with my 88 mcg of levothyroxine. I had tried brand name vs generics and also a new liquid thyroid capsule that had not made a difference. This seemed to be good for about 2 years, but now I am back to being hyperthyroid. My endocrinologist has quit practice, so I am working with a PA who used to work for an endocrinologist as the GP in the practice stated she wasnt really good at endocrinology compared to the PA. We have tried to decrease the T3 to 5 mg daily. I immediately gained about 4 # in 2 weeks. Frustrating! My other issue was after being on birth control pills about 1 year I stopped them in February. This may have set me into this condition. Anyway, I was so tired before the T3 in the afternoons, it did seem to help. Im back to being tired. We are all works in progress. Pays to keep checking your thyroid and keep asking questions. This is a frustrating disease. I am also worried my TED has returned as my L eye started watering profusely in January. I have seen 2 opthalmolgists and am returning to my ocuplastic surgeon this coming week. I have had 2 surgeries on each eye as I was operating in the hot phase by a surgeon who did not understand this disease. This was how my TED started before (watering eyes).trlrunnerJune 5, 2016 at 5:24 pmPost count: 13
For me, a combo of T3 and T4 therapy has brought me back to a good quality of life. After being diagnosed with Graves in 2011, I did a year of methimazole, then RAI, started T4-only therapy a few months later. I puffed up to the heaviest weight I have ever been (I am slender and have been a long time endurance athlete) and I felt like I was wearing ankle weights on my arms and legs. Everything was so laborious. I felt incredibly poor. After trying several different T4 dosages, my doc added 10mcg T3 to a slightly lowered dose of T4. What a wonderful improvement! Then, in 2013 I had what was left of my radiated thyroid removed due to cancer. I have continued on the T3/T4 combo with an increase in the T3 to 15mcg daily. It is VERY important when starting/adding T3 to T4-only therapy to bring the T4 down to a mid-ish range to avoid hyper symptoms. Adding T3 when T4 levels are in the upper end of the range will only result in failure due to a person developing hyper symptoms. Adding T3 to T4 has been a life saver for me. I wish more doctors would listen to their patients who continue to feel poorly – rather than insisting on driving up their T4 levels to the upper range and thus exacerbate many people’s symptoms because a doc does not believe in using T3 – and at least allow a person to try some T3 supplementation. If a person does not respond well (after T4 levels are moderated, firstly), then it is easy to stop taking it. I have chosen to stay with synthetic medications rather than the natural, desicated animal thyroid that contain a combo of T3/T4 due to the fact that natural thyroid can artificially raise TG levels – the cancer marker – in some people. If I was not dealing with the cancer issue, I would certainly consider using a natural thyroid replacement. Also, many people – not all – do need to supplement their natural thyroid replacement with a small amount of T4.KimberlyOnline FacilitatorFebruary 8, 2017 at 10:48 amPost count: 4262connypieApril 2, 2017 at 6:03 pmPost count: 68
hi liz1967,i have a question.you mentionend something about proton pump inhibitors.did you mean you didnt take any for an hour after taking thyroid meds? or not taking proton pump inhibitors at all?Liz1967April 2, 2017 at 6:16 pmPost count: 305
Proton pump inhibitors interfere with absorption of levothyroxine no matter when they are taken as they decrease acidity in the stomach. You would require a higher dose of levothyroxine therefore if you are on long term PPIs. This can be maybe avoided by taking levothyroxine in a liquid form inside a gel cap (Tirosint) which is more expensive than plain generic levothyroxine.connypieApril 2, 2017 at 7:07 pmPost count: 68
Well,slap my Biscuits! I had an ulcer last year and was put on pantoprazole?in january he took me off and told me to take over the counter zantac.after a couple of weeks i doubled the dose because it wasnt working well.i felt worse and worse and went back to 1 pill and my neuro symptoms have improved a little.so, bad stomach=better neuro?hmm,wich one will i choose.sorry am being a little sarcastic here.ive been on proton pump meds off and on for years and if i dont take them i would eat antacids by the fistful.but always 4 hours after levo.Liz1967April 3, 2017 at 4:21 amPost count: 305
Pepcid does not seem to affect levothyroxine, it is an H2 inhibitor (antihistamine). Zantac is also not a PPI so either one if they work for you might be better than ppi.connypieApril 10, 2017 at 6:58 pmPost count: 68
hi liz, i had a call from my new pcp today.my lab results came back.wow.havent had any bloodwork done in a year.tsh is 9.2 .and my ldl is 218!!!!total cholesterol is 293.my vitamin d is 24.my tsh is usually in range,my cholesterol was a little high,but nowhere near this high.so he upped me to .175 synthroid from .112, put me on a statin and 2000 units of vitamin d plus calcium.i dont know where all this cholesterol comes from,didnt eat anything different,even ate less sweets and more veggies.im gonna take the new synthroid meds every other day with my old dose for a few weeks.i dont tolerate such big increases,gives me hyper symptoms for months afterwards.didnt tell the doc this,brainfog wouldnt let me think of it.,there should be an emoji with a cloud hanging over it for brainfog.lol.and all of this from taking a ulcer med.i even asked the pharmacist last week and was told as long as i took thyroid meds and ulcer meds 4 hours apart,i was fine.i still cant wrap my head around my ldl going from 103 to 218 in a year.and the weird thing is,ive been feeling a little better these last few weeks,not much,but a little better.dont want to know what my bloodwork would have been 2 month ago.now we do the waiting game and repeat bloodwork in 2 month and see what happens.Liz1967April 11, 2017 at 4:07 amPost count: 305
High TSH (hypothyroid) raises cholesterol levels. Increasing synthroid should help your cholesterol.
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