If your meds are working, please share your dosing regime and if you have antibodies with the rest of us - thankyou 😀😀😀

[woofa27]

Linking with the medication survey, can the 🍀🍀🍀 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 😍😍😍

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!

[YazzzM]

1) armour thyroid 1 and half grains daily (morning 1 grain, 2pm 1/2 grain)

2) positive for antibodies

3) no

4) 17 years

[woofa27 in reply to YazzzM]

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 👍😍😘

[greygoose]

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?

[woofa27 in reply to greygoose]

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 👍😍😘

[greygoose in reply to woofa27]

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.

[HotelHurricaine in reply to greygoose]

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 😊

[greygoose in reply to HotelHurricaine]

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.

[SlowDragon Administrator]

Very well

1. Dosing times and quantity taken.

Levothyroxine

112.5mcg 4 days per week & 125mcg 3 days per week.

Always same brand….Vencamil - lactose free

Levothyroxine taken at bedtime - 11pm

T3 - 20mcg as 4 x 5mcg doses.

Approx every 6 hours - 6am, 11am, 5pm and 11pm

Always Teva - lactose free

BOTH prescribed on NHS

2. If you have antibodies

Yes both TPO and TG …..highest levels ever seen by endocrinologist at diagnosis 30 plus years ago

Absolutely strictly gluten free since 2016

Absolutely strictly dairy free since 2022

Significant levels of vitamin supplements

TPO now within range

TG almost within range

3. If you had Total thyroidectomy

No

4. How long you've had hypothyroidism

Diagnosed 30 years ago

Symptoms at least 10-15 years prior

Age 65

More on my profile

[woofa27 in reply to SlowDragon]

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 👍😍😘

[Katarina60]

1. Two grains of NDT at 5.20am (Circadian T3 Method)

2. Yes, Hashimto's Disease

3. No

4. Diagnosed about 15 years ago but suspect the problem arose during pregnancy more than 40 years ago.

[woofa27 in reply to Katarina60]

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 👍😍😘

[Regenallotment Ambassador]

1. 6am 100mcg Vencamil Levo 5mcg Thybon Henning Lio and 10pm 5 mcg Thybon Henning Lio.

2. Yes TPO around 142 when I’m good health over 400 when I have cold/flu etc.

3. No had scans but all benign/small

4. Diagnosed 2021 but symptomatic from 2014, had post partum in 2002 and 2004 swung about unmedicated in between and from the age of 14 or so.

[Calliopia]

I take 50 mcg levo in the morning and 60 mcg lio split into three doses 6am 12 noon and 6 pm daily. I feel very well on this. No antibodies ever found

[TiggerMe Ambassador]

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 🤷‍♀️Ord'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 🐯

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

[SlowDragon Administrator in reply to TiggerMe]

TiggerMe

presumably you mean

5 days at 100mcg Vencamil 2 days at 150mcg Vencamil per week

15mcg Roma T3 per day

[TiggerMe Ambassador in reply to SlowDragon]

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 🙃

[Poniesrfun]

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 — 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.

Patti in AZ

[Eccleston]

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.)

2 - No

3 - No

4 - 37 years

[Sambing1]

1. Between 2am & 4am. 75mcg levo 4x week & 50mcg levo 3x week (I weigh between 60kg & 65kg... fluctuation, if that's relevant)

2. Yep

3. Nope

4. Since I was about 30 (first test) untreated until age 46 (47.5 now)

[59Blue]

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

3- No

4- 15 years

[RockyPath]

NP Thyroid 90 mg morning and SPS Thyroid-S 60 mg at 4 pm

Clear of antibodies after numerous tests

Thyroid gland is intact

hypothyroid 14 years (long delay for dx 🙄)

The questions may be random but they do shed some light on the broad range of solutions people have to survive. Thanks for asking.

[Cavapoochonowner]

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.

[Agitator23]

1. 112.5 mcg Levothyroxine. Once a day in morning - three days 125 and four days 100.

2. No antibodies

3. No thyroidectomy

4. Looking back probably more than twenty years but only diagnosed this year.

[Ruby1]

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 replies…. I feel well…

1. 100 micrograms every morning. I don’t 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.

[HotelHurricaine]

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.

[Tina_Maria]

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.

[Britomartis29]

1) liothyronine only, 50 mcg (down from 75 mcg)

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.

Thanks, woofa, these are interesting to read!

[Lottyplum]

Levo&T3 6am; T3 late afternoon;

Positive for antibodies

Thyroidectomy 1981

At least 47 years since symptom began

[Insomania]

I feel pretty well atm!

1. Dosing times and quantity taken.

1.5 grain NDT Armour taken in one dose 7am

2. If you have antibodies

I’ve 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. That’s been my worst symptom and it’s 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.

[bantam12]

125mcg Levo in the morning with or without food

No idea if I still have antibodies

Partial thyroidectomy + RAI many years later

Graves for 50+ years, Hypo for 25 years