Not on T3 only but yes I lost 12kg so similar amount of weight I I think, sorry I don’t do stones, when getting up to optimal on T4 and then adding in T3 I had to drop my dose a couple of times. Weight is now stable. 🤞
When I started out on T3 only, I got up to 225 mcg daily. Yes, I did start losing weight - there was a hell of a lot to lose! I stopped weighing myself when I got up to 130 kilos! Eventually got down to about 75 kilos and, for reasons that are explained on my profile, I stopped my thyroid hormone replacement completely.
After that, weight see-sawed. After six months started T3 again at a lower dose, worked up to 75 mcg and found that any more than that was too much. Weight continued to go up and down, but recently, I started losing weight again - all water-weight - and now find I only need 50 mcg. Go figure!
It all seems very random, and there's no guarantee of anything. Will I continue losing weight? Will 50 mcg T3 continue to be enough? No idea! I'll just have to wait and see what happens. I'm lucky I have a wardrobe that covers all eventualities! lol
I've started to build up a new wardrobe because I stupidly had a huge clear out some time ago after my weight had see-sawed for several years and then seemed stable. Everything is now about 2 sizes too big!!
I seem to be following a pattern similar to yours though I only reached 212.5mcg T3 when I first started T3-only!!
"No guarantee of anything" sums it up.....though I'm sure the powers-that-be could learn a few things!
I'm very grateful for all your excellent level headed advice over the years. You made my journey possible.
But I realise I didn't really answer your question - little bit tipsy earlier, been out on the town - such as it is!
Weight loss..... do we reduce T3-only dose?
Not automatically, no. Not like some doctors would like. I am very much anti dosing by weight. I know doctors think it makes their job easier but it isn't always easier for the patient!
You might feel you need to reduce it. But it should be up to you, not some gung-ho GP. Only you know how you feel, and being an adult, intelligent woman, you're quite capable of deciding if you should reduce or not.
I'm not convinced that my need to reduce has had anything much to do with my weight. I think it's more to do with my receptors becoming more receptive to T3. I don't need as much anymore because more is getting into the cells without force-feeding. I could be wrong, but... But I think of all those that reduce their dose because they've lost weight and promptly put that weight back on again! I think it's all a lot more complicated that those that lord it over us think.
I think this GP feels she had a victory because I said I'd reduce my T3 ....it suited me
She gave me a long spiel about the importance of TSH which was rubbish, but I said nothing because it would have gone against me. I think she sees me as a challenge because she failed at her last attempt!!
My weight loss had nothing to do with T3...it was minimal appetite after months of chronic sinusitis and a couple of eye ops.
It's all been a bit of a muddle, hopefully starting to settle down again...a night on the town sounds appealing!
Terrible night....7am and I've just taken the "missing" 25mcg T3!
GP was talking of reducing further to 60mcg but that isn't going to happen
My surgery were leaving me to self medicate until this GP got involved again after a test I knew nothing about
The sinusitis is dragging me down too....another GP told me I'd just have to tough it out....wait for ENT is a year. Already had it forabout 6 months before referral!!
...and my eyesight is now affected, Have had 2 cataract ops, a vitrectomy and 2 YAG laser treatments over the years. New specs have made things worse.....told to wait for 3 weeks for my brain to adjust. Hells bells!
I really don't recognise myself any more and I'm in bed most of the time
I've seen a few doctors, been to A& E twice in the last 6 months ....so what do they think? Anxiety!! Told them if it exists it's a consequence not the cause
I think this is all the result of damage from years, (possibly a lifetime) of low cellular T3 which diogenes once explained was difficult to reverse.
Sorry....just venting!!
Must go and get ready for our regular Sunday morning Skype get-together with the family at the other end of the country!
I'm really interested to read this. I've definitely done the weight gain, hoping the weight loss will happen at some point! T4 only doesn't feel right for me.
Anyway the question I wanted to ask was whether a 25% decrease in one jump wasn't quite a lot, especially with T3? It's a genuine question, not a judgement, I'm here to learn!
Sorry to hear you've been through the wars in the last few months & hope it improves soon
It sounds a lot but it depends on the circumstances. I've made similar changes before with no issues.
However I agreed to it (with GP!) in too much haste, I was feeling dreadful and not thinking clearly, but given I had no symptoms of over medication I have reverted meantime to 100mcg. I might review it when I feel better!
I really should have considered it more carefully so maybe not setting the best example....sorry!
Thank you for your kind words....I have to admit it's been difficult these last few months and my decision making has been less robust!
Don't you think it's a little soon to be feeling the effects? I don't know but this doesn't sound like a good time to be experimenting, to me. You've been through a lot recently and you're obviously still not well. And I sincerely doubt that it's because you're over-medicated!
Honestly, sometimes the rubbish that comes out of the mouths of doctors leaves you stunned! And you think never mind 7 years in med school, do you even have any common sense?!?
Yes, absolutely! I made a silly rash decision to reduce my T3 so going back to my 100mcg dose. I monitor almost daily and had no signs of overmedication....This bossy GP seems to think I'm killing myself slowly. She caught me at a weak moment. It's been fine for several years.
I agree not a good time to experiment.
I'm still convinced the flu/ covid booster was the genesis of this debacle....and said so.
The sinusitis is my main problem just now so I've now been given Fluticasone nasal drops ....the PIL makes it sound awful. I'm hesitating!!
GP is hypothyroid so thinks she knows it all.....and I'm old and a bit dim!! I wish she had stayed in her box!!
I'm aiming first to get my eyes/brain/ sight adjusted to the new specs....optom reckoned 2/3 weeks.... Grrrrr!! At the same time trying to cope with the sinusitis....no hope of ENT for about a year
Oh my goodness only just seen this Dippy Dame. You've lost weight because youre poorly and like you said not eating much. Does this GP need an eye test? And for that matter an IQ check? Why on earth is she leaping on your T3 after your long history? If you'd been well you would have e politely disagreed but she caught u when you're poorly and vulnerable.
Slowdragons right. Hope you've stuck with your usual dose?
Shame this GP didn't focus on helping your suffering. And escalated your referral!
Big hugs Dippydame hope you get seen sooner than currwntly anticipated. X
Had a telephone discussion with another GP this morning about lab results from an FT3 test they sprung on me recently. He said he couldn't understand the lab results so I said I'd explain.....basically I need high dose T3 to overcome thyroid hormone resistance.etc etc....you know the score!
And it's all in my bio for anyone interested.
He said that this was above his knowledge level (and I couldn't resist pointing out, also that of many medics) but he accepted that I knew what I was talking about so has left me in charge of my T3 as before.......well done Dr S!
The female GP who leapt onto my T3 has gone into the background! It's the second time she has tried to get me to reduce my T3!! She did catch me when I felt really rubbish and I didn't respond as I should have done which I regret.
But, yes, I have stuck with my usual dose.
I now have another miserable chronic uti flair, for which Dr S prescribed Cefalexin this morning. Hopefully that helps.
I've been on a health roller coaster for years and I can't help thinking that the genesis of it all has been years (a lifetime even!) of slowly reducing cellular T3, which (as our much missed advisor diogenes once explained to me) has caused damage and ill health.
High dose T3 turned things around.....yet I and those like me are often treated as oddities because of medical ignorance and because we don't tick the boxes on the doctor's computer screen!
Sorry that's a bit of an arrogant rant but I feel very strongly about the poor diagnoses and treatments meted out to thyroid patients.
Thank you so much for your kind words waveylines xx
Yay!!! So glad sensible Dr S listened!! Well done u for drumming up your resources to explain. They dont understand my ndt needs either. And we all know that ndt is seen, figuratively, as an inverted cross. Sigh. So I often feel I'm talking to a brick wall! Well I am....out in the cold now. Does that mean they'll leave me alone??
You did well despite feeling rubbish. Big hugs. Did Dr S offer to shake the nhs referral tree for you re your sinus issue?
Hi, I would like to let you know that I suffered with sinus infections for years and visited many specialists even had 3 surgical procedures and it turned out the crony sinusitis was allergy related..My allergy was mainly Yeast and other moulds . Basically they are all fungus.Lucky I had found this very clever immunologist you started treating me with the right medication plus strict diet not eating anything with yeast ore sugar and generally low carbohydrate foods. It made all the difference and eventually stopped me getting sinus infections.
Because it is not a common condition most Doctors ore ENT’S don’t even know about it. You could possibly test yourself by watching your reactions to certain foods. If I used to eat anything sweet I would get a mucus build up and sinus pain….fungus feeds on sugar …bread would bloat me also very sweet fruit.
I just thought I would mention it as it sounds so much like my experience.
Another GP has just given me Cetirizine.... "just in case it's an allergy".
The side effects listed in the leaflet sound scary so I'm plucking up courage to start them
I know that sounds like a real wimp but I've also got a difficult eyesight problem which is temporarily (I hope) causing dizziness and nausea... so being a bit cautious.
Have you used Cetirizine and how did it work out for you, please?
I use Cetricine every night but that’s just for dustmite allergy. Your GP should refer you for some allergy testing to find out which allergy it is .
Mine was to air borne mould called Aspergillus. It settles in your sinus caveties and makes you ill. It was cultured from my mucus…..mould allergies need antifungal medication.
Antibiotics don’t help. Doctors believe you only get this if your immune system is compromised but that is not true.
So you should really check for yeast and other moulds. Hope I don’t confuse you but perhaps mention it and you should have your eye checked as well , I don’t want to frighten you but your sinuses are very close to you eyes and it can have an affect…
Why do you think your cells became more receptive to T3? Just exposure, or other things you were doing?
I seem to go up a dress size every year atm and am sick of it. But don't feel different in any other way, no increasing fatigue for instance. So raising T3 might be an option (currently 68.25mcg, undetectable TSH). Of course there could be other factors, such as sex hormones, to be investigated.
Just exposure, I think. I haven't done anything else. Some of those receptors must have been shut down for such a long time. And the body needs to know that there will be a constant supply before it will open them up again.
No DD, don't! I've been slowly losing weight over the last 2 years and also likely reversed my fatty liver as my ALT'S have been normal for a year, all my cholesterols now normal, crp now in normal range and kidneys normal., I exercise, eat good and hardly drink alcohol. I can't do much more to be the healthiest I've been.
I truly thought that I'd start feeling overmedicated, and would have to reduce as now my liver is clean then I wouldn't have such an issue needing as much t3.
That's certainly not the case. I'm still increasing and feeling the best I've ever been.
If you're like me the weight loss has no bearing on how much t3 your body needs.
I don't even think dropping 5mcg would be ok. I know when I try it I feel dreadful the next day. I do this quite regular to see if a actually need to be on the dose I'm on, I always have to increase back up.
Don't be concerned, I'm perfectly capable of making the decision. My vitals are all good....tested last week. Heart perfectly fine....scanned recently.
It was lack of appetite/food that caused me to lose weight, not T3.
Maybe my wording wasn't the best but I was interested to hear of other's experiences re dosing by weight.
My gut feeling recently has been that I need less T3.....more T3 getting into the cells so slightly over replaced. So the GP's advice suited me. She did twitter on about TSH!!
They normally leave me to look after my thyroid medication but another GP included a thyroid test in a recent FBC which helped put the cat amongst the pigeons!!
The chronic sinusitis, and eye ops of the last 6 months have floored me recently and it was difficult to know what was causing what but I'm slowly surfacing again.
I have experience of dropping my dose from 200mcg to nil for 5 days then starting to build up from 50mcg....that was a doctor's advice!!!
I certainly wouldn't change my dose unless I felt my body needed it. An old medic friend used to say, "Listen to your body" which is how I dose on high dose T3-only
As greygoose says, "It's all very random".
I am surprised you're even attempting it.
Don't be, we are all very different and there are no set rules
I appreciate your concern but I've been dealing with a supraphysiological dose of T3-only for a long time....we are all different.
I have been on carbimazole for an overactive thyroid and went from 48 kilos to 54 kilos not happy so thinking of going off them can’t handle the excess weight as I only 4ft8
Does even mild sinusitis cause appetite issues DD? Mine has gone awol. I’m just not hungry, I’m trying to eat nuts, cheese and snacks but it’s not normal. Not really losing weight either. Can’t work out if it’s thyroid connected, I have Hashimotos or menopause depression. I think I’m not optimised on either treatment. I’m not absorbing HRT patches well and not getting the best nutrients for my thyroid though I do supplement. It’s hard when you just don’t feel hungry. I have mild sinusitis on and off especially like now as the pollen is starting. Thanks
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