Linking with the medication survey, can the πππ lucky few of you who are doing well, please reply to the following questions:
1. Dosing times and quantity taken.
2. If you have antibodies
3. If you had Total thyroidectomy
4. How long you've had hypothyroidism
Thanks peeps πππ
THANK YOU SO MUCH TO EVERYONE who has kindly taken the time to comment on and reply in so much detail to this post.
There have been many more replies than I anticipated.
It's been really interesting to read about the sheer diversity of regimes that have made the lucky few feel well - long may that continue for you all and let's hope that a few more of us can join you all in achieving a better level of wellness and quality of life.
GOOD LUCK TO EVERYONE ON THEIR JOURNEYS!
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woofa27
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THANK YOU SO MUCH for taking the trouble to reply - it's just really interesting seeing roughly what level is helping everyone and of course reassuring that some of you rediscovered health and wellness πππ
1. 75 mcg T3 mono-therapy. When I get up - and that can be any time from 2 am to 2pm.
2. Yes, TPOab and TgAB.
3. No.
4. Since I was about 8 years old, diagnosed at 55, I'm now 79.
Can I ask what the point of this is? The questions are very random and seem unlikely to be helpful in any way. Especially number 4. Because how can one possibly know? Most people will take that to mean when were they diagnosed, but it can start a long, long time before that - nearly 50 years for me! And it often starts long before symptoms become noticeable. How is this going to help you?
THANK YOU SO MUCH for taking the trouble to reply - it's just really interesting seeing roughly what level is helping everyone and of course reassuring that some of you rediscovered health and wellness πππ
But the thing is, we're all so different. And what helps one person won't necessarily help another. My dose would be much too high for a lot of people. I need it that high, and take it all at once because I have problems absorbing it into the cells. Not everybody has that problem.
I understand what you mean @greygoose but if you don't spend a lot of time on here, it's strangely quite reassuring to see in the replies quite how different we all are. Somehow that helps to see it's an individual journey and yet feel less alone at the same time π
Well, as long as the replies are taken in that spirit, that's fine. But if someone is attempting to draw some sort of definitive conclusions from these replies then they're doomed to failure. We are all so very, very different.
THANK YOU SO MUCH for taking the trouble to reply - it's just really interesting seeing roughly what level is helping everyone and of course reassuring that some of you rediscovered health and wellness πππ
THANK YOU SO MUCH for taking the trouble to reply - it's just really interesting seeing roughly what level is helping everyone and of course reassuring that some of you rediscovered health and wellness πππ
1) NHS supplied ... 5 days 100mcg Vencamil 2 days 150mcg +15mcg Roma, taken
3-6am (pee time)
2) Only raised TPO 63kU/l
3) No, just shrivelled I assume π€·ββοΈOrd's
4) At least 15-20 years (symptomatic after pregnancy) badly treated for 4 years with levo, correctly the last 2 when lio added, having found the forum, been enlightened and evolved from an Eeyore to Tigger π―
I'd say getting thyroid levels right is only half the story, you need to optimise vits and mins, balance sex hormones and be aware of your adrenal status making sure cortisol is in a good place
Indeed... never sure of the best way to present this as it's more of a 7 days 100mcg with an extra 50mcg Saturday and Wednesday along with a single daily dose of 15mcg Roma T3 π
TT for medullary thyroid cancer in 2016 A(while receiving chemo for lung cancer).
Take NP Thyroid (NDT) 60 mg 3x a day - when I wake up, sometime during the day and before bed. Sometimes skip one or two, sometimes take an extra depending how I feel β it seems to even out Feel best with FT4 in low 25% of range and FT3 in upper quarter of range
Was probably hypothyroid most of my adult life but never had any thyroid tests until several months after TT. Had low TSH with mid range FT4 and FT3 on levo, have undetectable TSH on NDT.
1 - Levo 100mcg plus Lio 20 mcg taking both at about 06:00 hrs daily.(Now only 2 weeks into this combination therapy and noticing the difference, albeit slight. Previously Levo 200mcg daily @ abt 06:00 hrs.)
1- Liothyronine 10mcg plus 75mcg levothyroxine both taken about 7am. Felt undermedicated when gp dropped me to this dose so privately but levothyroxine and take 100mcg every other day. Feel good with this dose in combination with improving my vitamin levels and taking magnesium
2- yes at time of diagnosis when TSH was 179 but not measured since. Assumed to be a rapid onset thyroiditis
Hello,I was diagnosed with graves disease in 2018.I had a total thyroidectomy in 2022 and am currently on 100mcg levothyroxine per day which I take in the middle of the night.
unfortunately I think most people who feel well are unlikely to take the time to post or may not be on this forum, but hoping you get lots of repliesβ¦. I feel wellβ¦
1. 100 micrograms every morning. I donβt worry about brand or timing with food. One day I might!
2. I have antibodies and nodules (or did do when diagnosed - not checked since)
3. No
4. around 20 years ago.
I was treated when I was borderline, and was only discovered due to blood test after being anaemic when trying to donate blood. Started on 50 and went up over time. Have been on 100 for most of the time.
1. Levothyroxine 175mcg M-F, 150 mcg Sa/Su. Taken at night 4 hrs after eating, or in am if have eaten late. Liothyronine 10mcg, 5mcg taken morning and evening.
2. Positive for antibodies
3. No.
4. Diagnosed 15 years ago after 2nd pregnancy, but suspect started during 1st pregnancy 2 years prior.
Feel very well.
Am confident that being gluten free, eating low carbohydrate diet, getting daily sunlight morning and afternoon, Vitamin D, B Complex, heme & magnesium, daily meditation and weight training are all as important as the medication.
I was diagnosed as hypothyroid with Hashimoto's disease in 2003. Antibodies strongly positive. TSH between 5 and 6 I think at diagnosis but strong symptoms and the lovely GP I had at the time started me on 25mcg levothyroxine. The dose increased over the years and I am now on 100mcg levothyroxine only, which I take when I wake up and wait between 40-60 min before having a coffee.
Latest results:
TSH < 0.01 (TSH been suppressed since starting levo therapy on any dose)
T4 23 (12-22)
T3 5 (3.1-6.8)
I had numerous discussions with GP and endos regarding my suppressed TSH, which I now ignore, as only this way I can feel well and have a quality of life that allows me to perform my work. I can also exercise 3 times a week (yoga and cardio) and walk around 4 miles each day.
I monitor my thyroid and vitamin levels once a year to check and adjust as necessary and just send the results to GP with a note 'no changes needed'.
Edited: Forgot to say, no thyroidectomy, but both my grandmother and my mother had Hashimoto's, so strong genetic link.
2) not currently pos for antibodies but I formerly was. It seems to vary over time.
3) no thyroidectomy at all
4) hypothyroid since 2003, after a bout of hyperthyroidism (misdiagnosed as Graves) that lasted a year and was treated with tapazole (methimazole).
Edited to add, I feel great now. Was on Levo only for a long time and was never ok. Once we started lio, yippee, much better, and best when off levo entirely. But everyone is different, It took years for us to get this tweaked right.
Iβve not had any positive antibodies in three years testing. Do have multi-modular goitre.
3. If you had Total thyroidectomy
No.
4. How long you've had hypothyroidism
7 years ago in my 3rd pregnancy the midwife commented on my bulging neck but nothing more was said. Certainly I never recovered my sleep post-natally, baby would be snoring and I was wide awake. Thatβs been my worst symptom and itβs been 7 years too. Goitre spotted by a f2f physio following a car accident during the pandemic. Started treatment privately July 2023 after exhausting NHS route.
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