28 days in t3 medication: 20 mg a day taken in... - Thyroid UK

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28 days in t3 medication

Jump1 profile image
41 Replies

20 mg a day taken in morning hour before breakfast.

Improvements:

Lips not peeling.

Eyelids not drooping as much.

Feel slightly warmer.

Bruises on legs pretty much gone except for 1 or 2.

Not as constipated. Bowel movements more regular and less lumpy and pelletty.

Have a bit more energy.

No change:

Hair still pouring out of my head at a shocking rate. No improvement there. Desperate for improvement on this.

Nails still ridged weak dry slow growing. Poor condition.

Swelling in hands and feet still happening and face eyelid in morning.

Update several days after this post. I am starting to sweat again like i used to. Have hardly sweat in 2 years. I used to sweat at the drop of a hat from young age. Now starting to sweat again. I have increased my dosage this past 4 days to.25.mg

20mg in morning at 6am. 5 mg at 8pm at night.

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Jump1
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shaws profile image
shawsAdministrator

I am glad you have had improvements in symptoms. 20mcg is a starting dose so your doctor should increase it by 5mcg every two weeks. You should also check pulse/temp as well. The aim is to be symptom-free and relief of symptoms. Your minerals/vitamins also have to be at an optimum.

I am not medically qualified and take T3 only myself.

Jump1 profile image
Jump1 in reply to shaws

Thanks. Private gp gave me 6 month trial of it. My own nhs gps(i moved to new ones) all said ni treatment. Should i contact him and ask him if i should increase it? I thought i should do most of the trial before arranging appt with him or at least 4 months of it. Did you have hair loss? It is devastating. All minerals and vitamins are optimum. Have been working on those for 2 years they were pretty much fine except for ferritin to begin with. What do you check your pulse with

shaws profile image
shawsAdministrator in reply to Jump1

I had worse than hair loss - I developed alopecia areata, so completely bald and it has happened three separate times in the last six years. If we have one autoimmune disease we can develop others. I have three at present and hope I don't get any more. :)

I comfort myself because one of my friends who had been complaining for quite a number of years of symptoms consulted doctor(s) and even saw 'private' doctors too, but 'finally' got diagnosed with sarcoma, got married and was buried all within nine weeks .

If you are paying privately he just cannot give you six months prescription and let you get on with it. You should be monitored.

Do you leave one hour after T3 (with one full glass of water) before you have your breakfast? I have read that we should start on a dose of T3 or NDT and every 2 weeks add a small dose (usually a quarter tablet) until symptom free.

I am not medically qualified but hope you begin to feel better soon.

Jump1 profile image
Jump1 in reply to shaws

I am going to get private bloods to monitor. And contact him with the updates. Ideally i would have loved nhs to say yes this is your problem but they refuse to even listen to what my symptoms are. I had to go to south of ireland. One of the derms i saw said it could be alopecia areata the diffuse kind. Its not stopped and is so weak. I take the t3 tablet at 6am in morning not with anyhing. Amd dont eat anything until 7am. I am up at 6 every morning for work except for weekend. Soŕry to hear that about your friend.

I am going to sound really bad now but this disease has made me every day wish i wasnt here anymore especailly wit the hair.

How much t3 do you take? Did it resolve your hair problems? What other diseases do you have?

shaws profile image
shawsAdministrator in reply to Jump1

After my post yesterday, this morning I have had signs that Alopecia is returning. Mine seems to have some cycle, i.e begins in Feb (this time end of April) so going gluten-free has given me two months longer with hair than previously.

I have also consulted with dermatologist and injections into my scalp (husband was there and refuses to let me have more as it was too painful for him to watch. Hair began to grow back and then the cycle began.

However, not everyone will have my experience and hair grows back for many when their meds are optimal. Mine is optimum but hasn't made a difference. There is a difference between thinning hair and Alopecia.

Don't despair and give it time for your hair follicles to recover. It does make you feel very vulnerable but there are some good wigs and if people don't know you they would not guess. You can try them on at home and return if they don't suit.

Jump1 profile image
Jump1 in reply to shaws

Very sorry to hear that shaws. Devastating.

Baobabs profile image
Baobabs in reply to shaws

Sorry to gate crash this post. So 20mgs of T3 is a starter dose? What is a usual average type dose please?

SlowDragon profile image
SlowDragonAdministrator in reply to Baobabs

No many many people start on 5mcg, slowly increasing in 5mcg steps

Retesting after 6 weeks

It's extremely easy to over shoot

Many only need 10mcg, 15mcg or 20mcg, often as split dose, when also taking Levothyroxine as well

Baobabs profile image
Baobabs in reply to SlowDragon

Thank you

Baobabs profile image
Baobabs in reply to SlowDragon

Shaws has stated that 20mgs is a starter dose in response to jump1. I only wish to have an idea to see if it is reasonable to ask for an increase on my next Endo appointment.

shaws profile image
shawsAdministrator in reply to Baobabs

25mcg (world) 20mcg UK. If you've been taking 100mcg of levothyroxine before and want to switch over to T3, you can take 25mcg T3 alone or 20mcg (depending on the tablets). However, some prefer to start gradually and take half tablet of T3 and every two weeks increase by 1/4. Always take pulse and temp before you begin and if you feel either is going to high, drop to previous dose. Ideally you should have normal temp and pulse. Of course you want relief of all symptoms so be guided by these too.

SilverAvocado profile image
SilverAvocado in reply to Baobabs

With no T4 to supplement,I'd say about 50mcg is considered a complete replacement dose.

Its important to consider T4 alongside T3, as the total dose is the T4 plus the T3.

Baobabs profile image
Baobabs in reply to SilverAvocado

Thanks for that BUT I still don't understand why my Endo wants me to take T4 also? I thought T3 was meant to be made from it but if the T3 is going directly into the body why not miss out the middle man so to speak? T4 meds have never ever made any difference to the way I feel.

SilverAvocado profile image
SilverAvocado in reply to Baobabs

Endos often believe myths of different kinds :p

I believe the thinking is that T4 will allow your body to smooth out any peaks and troughs by regulating conversion to T3 - this is what would happen in a person with a healthy thyroid.

Baobabs profile image
Baobabs in reply to SilverAvocado

Oh I see, much appreciate this information.

Baobabs profile image
Baobabs in reply to SilverAvocado

You know my FT3 and FT4 levels are worse now than they were when I was diagnosed with Hashi's prior to taking any meds !!!!!!

SilverAvocado profile image
SilverAvocado in reply to Baobabs

I've had a quick look back at your recrnt summary post. Your dose is just far too low for you, still. Its the equivalent of about 100-125mcg of T4, which is not a high dose, and your blood tests are very low.

I'd say you just need to retest and increase every 6 weeks till you get your freeT3 up to the top (or alleviation of symptoms - that's more important). Unfortunately you will have to compromise with doctors and may not get that :(

Baobabs profile image
Baobabs in reply to SilverAvocado

Much appreciated! When I was on 75mgs of Levo only my FT4 was well over range and my FT3 was 5.8 with upper range being 6.8. I really felt no better than before I began meds a year earlier, that's why I pursued T3. With my last results my Endo said she was pleased I felt better on T3, recommended to up my Levo 12.5 mgs from 25mgs despite my saying I felt better but not good and still symptomatic.

Baobabs profile image
Baobabs in reply to SilverAvocado

I live and work in Saudi and so do not rely on NHS political intrigue to secure my T3 meds! My Endo does get nervous about a tsh of 1 or lower.

shaws profile image
shawsAdministrator in reply to Baobabs

They are under the apprehension that we will have heart attacks or osteo if TSH is 1 or lower or suppressed. Patients who have thyroid cancer have to have a suppressed TSH and I doubt they develop either of the above and are probably symptom-free if on an optimum dose.

shaws profile image
shawsAdministrator in reply to Baobabs

Many take combination doses, i.e. T4 with T3. Usually T3 is in a lower dose to the T4 and they have found a great benefit.

There is always rumours that abound about T3 but I have found it suits me best. Everyone is different and Endos have been told to only prescribe T4 in the UK. Some private ones will prescribe T3 but it has now become so expensive and outwith the range of ordinary people.

Baobabs profile image
Baobabs in reply to shaws

Many thanks again. I felt no better on T4 only and feel a little better on 25 mgs of T3, the whole dose almost immediately and felt no ill effects from it.. My most recent results of both FT3 and 4 were not in the top quarter of the range, T4 very low. I have since had an increase in Levo by 12.5mgs but still feel the same. I think I need an increase in something?

humanbean profile image
humanbean

Hair falling out could be low iron and/or ferritin.

Congrats on getting some improvements with T3.

Jump1 profile image
Jump1 in reply to humanbean

Thanks human bean. No iron ferritin not my problem. My ferritin levels were lower than what they are for now for years before this began and my hair was perfect. Ferritin is above 70 last time checked

SlowDragon profile image
SlowDragonAdministrator in reply to Jump1

What about zinc?

I expect you have read this

thyroidpharmacist.com/artic...

Jump1 profile image
Jump1 in reply to SlowDragon

Zinc is sound. At one point dr thought i may have roo much.

Baobabs profile image
Baobabs in reply to Jump1

In a way it is very annoying for you that supplementation does not appear to be the answer!

Jump1 profile image
Jump1 in reply to Baobabs

It is devastating. All my vitmains are sound and have been for 2 years. Zinc iron ferritin b12 the lot.

Baobabs profile image
Baobabs in reply to Jump1

My apologies Jump1 if I appeared to underestimate your distress. I know how devastated I was when I could see the shape of my scalp through my hair. Quickly, through this forum I found a possible answer in ferritin. My hope and faith in this resolve endured a very long time, however, I have seen results. This is not the case for you but you are determined and obviously doing everything you can to improve your situation. I truly hope you find an answer soon and wish you all the best in the future. Your situation clearly highlights the unrelenting complexity of thyroid disease.

Jump1 profile image
Jump1 in reply to Baobabs

I never thought you did i know everyonw on here suffers from this.

shaws profile image
shawsAdministrator in reply to Baobabs

One person, to comfort me, said 'but you have a lovely shaped skull! Jump1

Jump1 profile image
Jump1 in reply to shaws

I dont know whether i would have taken that in a good way. Seems quite flippant. Even though they prob werent

Trinitytx profile image
Trinitytx

My derm who specializes in hair loss says it can take 6 mos for hair to stop falling after you're optimal. I can relate as I have over 50% diffuse loss and I don't know if i should be increasing or decreasing or adding in T3. You can see my latest post and we can compare. If you feel better on T3, maybe it will just take another couple of months to see improvements in hair (as awful as that is to wait) :(

Jump1 profile image
Jump1 in reply to Trinitytx

Hi trinity. I have alot more than 50 percent loss. 2 years solid hair loss 100s a day. Ive got to point were i no longer brush my hair. Nust tie it back. Will read your post. I have to say t3 has made me feel warmer energy aches and pains bruises iimproved bowels eyelids. So def seeing improvement. Tho they arent my worst symptom. I could live all them if i could have my hair. 3 derms all said telogen one said to.me it could also be alopecia areata. Said hair should grow back. That was a year ago.

SilverAvocado profile image
SilverAvocado

You need to see a blood test to get some guidance on whether this is the right dose for you. The continuing symptoms sound like you need an increase.

I definitely wouldn't want to hang around for 4 months on a low dose! You needed it adjusted every 6 weeks or so. Especially if you're paying!

Jump1 profile image
Jump1 in reply to SilverAvocado

Hi i am 29 days in on 20mg. Ill wait until 6 weeks in 42 days and test with blood test. I took a 5mg of it last night on earlier peoplrs suggestion about symptoms and increase dose to see what it would do so thatd 25mg yesterday and today. 20mg at 6am and 5mg at 8.30pm Fingers were hardly swollen today at all. Will see what it does tmw. Will try it for another 2 nights and go back to 20 mg dose after that to see if fingers swell or not. It is ridiculous that i have to go private to even been acknowledged i have real symptoms that are caused by this illness when my results are up and down. More up than normal. Never in my life did i ever go near a gp until this started. They should be takin me seriously and saying we will put you on a trial. I was lucky i found a good gp in ireland who acknolwedged what was wrong with me and is willing to prescribe.

SilverAvocado profile image
SilverAvocado in reply to Jump1

Sounds good! I am very cautious and have always waited 6 weeks and had a test, but you don't really need to, and can increase by symptoms instead.

Jump1 profile image
Jump1 in reply to SilverAvocado

Better safe than sorry i think. Will def blood test

Jump1 profile image
Jump1

33 days in and i think my nail ridges are improving on my fingers. They def look like not as prominent. Still very bad hairloss and finer hair. Still got swelling in fingers and arms and prob legs too. Its amazing how you dont notice the swelling creep on your arms with this disease. But arms lower arms arent as thin as they were before all this started. Figers still swell intermittently.

Ive remebered 2 dreams this past week. Cant remember when i last dreamt and remebered it. Its good.

Hashi-Monster profile image
Hashi-Monster

I’m so glad your symptoms are improving... fingers crossed that your hair follows suit 🤞

Jump1 profile image
Jump1

Thank you Missimal it is the one symptom i cannot cope with.

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