Ok so I’m now into week 3 of now levo and 55 mcg T3.
I’m finding that the head pressure and slight dizziness (not at the same time!) that I would get when I was undermedicated before are happening sometimes. I’m also getting the thumping heart beats I would get before that seemed to go once I was on a higher dose.
I just checked my blood and it’s very slightly raised (137/70) but everything else is ok.
I don’t know what to do now.. stick it out for 6-8 weeks? Put some levo back in? Drop or raise T3?
Has anyone found that they needed to reduce T3 when they dropped levo? I feel almost like it clogged up my system... I know this sounds ridiculous but I feel.... lighter! More free moving! 🤷🏼♀️😂
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Murphysmum
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Did you raise your T3 when you dropped the Levo? Because at least some of the Levo will have been converting to T3 so if you didn’t, then you’ll effectively be on less hormone replacement than you were before.
And how are you on 55mcg? Are you splitting tablets? Are you taking it all in one go or in divided doses?
I wouldn't put the Levo back in...I would either leave it for now, or add a bit more T3. I know exactly what you mean about Levo 'clogging up your system'...it clogged mine for decades😕 It sounds from what you say that a slight increase in T3 may help. I haven't heard of anyone reducing T3 when stopping Levo altogether, but others may have some experience of this.
I just gradually increased the T3 until I felt consistently well, but of course we're all different. I know many members seem to do well on 75mcg of T3 only, but unfortunately, I need much more than that. I'm glad you're feeling 'lighter' and I think you're doing remarkably well to get this far👍 x
😂 Oh no, I wasn't...I knew exactly what you meant! I'm as thin as a stick and always have been, with or without a thyroid, and with or without T3, so it tends not to be my first thought. I understood what you were saying👍 x
Have you built up to 55mcg of T3 in less than 3 weeks? Seems a bit too quick? When I stopped Levo I was already on 20mcg of T3, had been for some time. I stopped to get adrenals right. Working with Dr P and my own GP at the time, it took me 18 months to get the adrenals right and the balance sorted. I had to stop and restart on several occasions.
I built up the T3 very slowly, adding in 5mcg every few weeks. (55mcg after 3 weeks seems to be too much too quickly to me? T3 has to be low and slow)
I did try to add in a small amount of T4 on several occasions, but each time the symptoms of Fibro, Cf and migraines returned, having gone in days of stopping. So eventually gave up and stuck with T3, plus the adrenal supplements and others - Co-Q10, Vitamin C/D/B and some Nutri Thryoid too.
The thing is, go by how you feel. If you think you are over medicating slow it down and drop back a little. Let your body get accustomed. I did have to restart from scratch a few times but I got there and have not looked back.
I’ve been on T3 since last March and have built up in 5 mcg increases roughly every 5 weeks since then.
I have been increasing one and decreasing the other but the last few increases I kind of forgot about the levo - don’t know why! So I was probably taking a wee bit too much and just stopped it.
My gut says I need more T3 but I’m a bit confused now. My long term struggle is really muscle weakness and I’m hoping this would be my “I’m cured” point when this goes!
My adrenals were fine when checked about two years ago and I supplement everything. I may addd in some Q10 though, haven’t taken her in a while.
Ah no worries. But it is a fine balancing act. I’m not sure just how accurate the adrenal testing is. My bloods showed ‘in range’ but was borderline. The Endo did a SST which he deemed to be ok. Then a private saliva test showed low at all 4 points across the day. And as Dr P said if low at one point will be low at others.
I think it is about the hypo impacting the adrenals, they have to work harder to support and hence get over worked themselves and start to impact, the inability of the adrenals to recover from stress or illness - we don’t always recover as quick as others might. I do find that even now, 10-13 years on, on T3/T3 only, that stress of any kind, or a virus or such can knock me sideways, which impacts on how the body processes medications and hence can end up with higher T3 for a while. To be honest I’ve never had the palpitations and such when gone higher, but only gone c 7. something. And I’m sure I read that if on T3 only might need to be a bit above range anyway.
I found the temperature test seemed to be in line with balancing things out, though only ever got back to 36.5/6. If I get to 37 I have a bug!
As far as T4 is concerned I don’t know why I can’t seem to take it, I have partial DIO2 and there are VDR and MTHFR and other genetics that might be impacting but I do feel that the adrenal state has a large part to play. But As no one looking may never know. Hey ho.
Again, wishing you the best of luck, I hope it all settles and you feel well again soon.
Yes, the same thing happened to me when I tried to add T4 in again...instant migraine and all other symptoms back with a vengeance. I think the T4 boat has finally sailed for me...never again! I'm fine on my T3 only, and after so many years of suffering with 'in range' results, I now go by how I feel, and I feel fine😊
Me too. 20 years to trying to make T4 work is enough, especially after 10 years of struggling undiagnosed, not to mention the problems growing up! Fine on T3 only for 10 years now. Can manage it. Can live.
Same here...except I've only been on it for about 3 years, and suffered for 25 on T4. I too had all the signs in my youth, but nobody joins the dots, unfortunately. I also get knocked sideways by any emotional or physiological stress...I guess that's just how it is now, but I mostly feel good. At last.
T4 made me ill....it took 20 years (possibly even a lifetime/genetic variants) of deteriorating health and advice from here to discover that!
Interesting that e&p stress knocks you sideways...I used to be the one who coped, but not so readily now. I may now need a little more T3!
I now take 150mcg T3 -only....and I'm still standing!
My FT3 is off the top of scale and FT4 and TSH are off the other end!
But... I have RTH and have learned that although the FT3 reading is high it's mainly "sloshing around" in the blood. with only part of the amount overcoming the thyroid hormone resistance and reaching into the cells where it's required/essential to keep us functioning. The body eventually expels the remainder from the blood.
I dose by how I feel, the body will soon signal over replacement!
Taking the step to larger doses can be quite scary until you become confident that you have chosen the right way forward.
Listen to your body....an old medic friend once advised!
Same for me, DD...I take 150mcg T3 only and have never felt over medicated. I only ever had strange heartbeats, etc. on T4...I never get them now. I actually went up to 200mcg, but didn't really feel any benefits, so I went back down. I did however, find I could manage on 125mcg during the very hottest part of the summer.
I agree with the 'sloshing around'...I used to worry about dosage, but as the ever helpful Hugh once said: 'the problem with the receptors can be for some people that only a limited amount of T3 can bind and adding extra T3 does not cause additional binding so does not cause over medication. It is therefore difficult to get the optimal dose as there's no point in taking a larger dose if it does not deliver benefits' this has been my experience exactly, and it put my mind at rest😊 I'm just so happy to feel better! I hope you are well too DD, and I wish you a very happy New Year!🎉 x
Has it gone high? Perhaps a virus? To be honest, I don't think I can remember where 'there' is now, or even if I would know if I got there! 😂 I do feel so much better though. I often think any residual bits may be down to the ageing process, as I must've aged quite a bit waiting for a genuine diagnosis...that of course, never came😕 x
Have you got Irish roots like me DD? Perhaps we both have an element of Wilsons Temperature Syndrome? I've always been cold and had slow metabolism. Ditto all the females in my maternal line, and there was a lot of them!😂 x
I'm 50/50 Scottish/English but with a mysterious gt grandfather who I cannot so far trace in my family research...if anyone knew, they never talked about him.
I would love him to have been Irish!
Growing up in a big old freezing cold house I always wore bed socks ...like Lora.
DD, I believe being Scottish counts too...as I understand it, the criteria is having ancestors that were subjected to dire levels of famine. I know this is the case in my family, as my mother never tired of telling me the awful stories that had been passed down😥
She also always maintained all our weird health problems were due to an 'Irish gene'...of course, I didn't take much notice at the time, but it seems she may have had a point😳 x
It's possible your gt grandfather may have been Irish if he's proving difficult to pin down...they often avoided or gave false information about themselves to the 'authorities' at the time. Church registers are sometimes a good place to look for info. Yes I am proud of all my Irish relatives too, although the genetic disposition is proving a bit of a nightmare😂 I hope you stay warm and well too x
You need to take it slowly and not be so impatient to be well ... this disease takes time to get your levels right .... I should know because 12 years later I am still not completely well.
I’m fairly certain that the funny heart beats, dizziness etc are because I need more, not less. These are symptoms I’ve had since the start.
Interestingly, the muscle fatigue and weakness, while not gone, has not become worse again as it usually does when I need an increase. I’m sure this is because I’ve dropped the levo, though time will tell if I’m right.
Onwards and upwards..... literally when it comes to dose!
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