Vit ,ferritin, b12 etc, were requested on this recent blood test but havent come through. whether they will come through a little later or the labs decided bo to do them??
I am GF and SI B12 every other day. I take D3 ,(sublingual and the Bvits rec by you.
What do you suppose re the Levo? Did I read once that taking T3 brings the Levo down in tests?
For me ft4 would be too low. Even my new endo said they like both ft4 and Ft3 to be half way through range on Combo.
However if you increase levo then Ft3 will go over range. You would need to decrease lio by 5mcg to then increase levo by 25mcg. And I don't know if that will do you any good.
That's interesting. there was me thinking when I was trialled on the T3, that that's it someone handing me my life back! Maybe after all the trials and researching re the thyroid that my illness/chronic fatigue isnt down to my thyroid. Maybe there is something else going on.
And thinking about introducing the T3, is it making and difference? I've still got very little energy. Just 2 years ago, I had 2 jobs, I felt so different to now. It really is a bit of a puzzle 🤔
Yes I am getting there thank you. I am currently going through dose changes to get my ft4 up. I started out on 50mcg levo and 20mcg lio from the endo. I really didn't need my levo reduced and I only needed a smaller dose of lio si I didn't feel great ft4 was 10 and Ft3 6.4. I am now almost at 125mcg levo and 10mcg lio and vhope that this will sort out my last symptoms. I am getting my live back.
It is early days for you so hang in there. I have been on Combo for a year!
You have put the incorrect range for FT4 so I have taken these from your other post:
May 20 Levo 100 daily
TSH 0..06 (0.3 - 4.5)
T4 16.4 (10.0 - 22.0)
Sept 20 after change from end May. T3 10 MLS and T4 75 mls. daily
TSH 0.13 (0.3 - 4.5)
T4 10.1 (10.0 - 22.0)
T3 6.2 (3.1 - 6.8)
I did change the T4 back to 100 for 3 weeks in June but the changed to 75 for 8 weeks prior to Sep b.test.
The biggest mistake was reducing your Levo when T3 was added. I know this is what endos tend to do but your FT3 was only 53.33% through range. It really is only necessary to reduce Lelvo when FT4 is at the top of the range (or over range) because taking T3 is going to lower FT4 anyway.
By reducing your Levo to 75ml your FT4 has plummeted to 0.83% through the range, caused by a combination of lowering Levo and the effect of adding T3. No wonder you are bed bound with chronic fatigue.
Some people are fine with a low FT4 when on T3/Levo combination, but many need FT4 a decent way through range.
With your current results I would say the balance of Levo/T3 is not right for you, you need more Levo to bring your FT4 up in range, possibly go back to 100ml, and slightly less FT3.
Why did you change back to 100ml Levo for 3 weeks then change back to 75ml?
I went back to 75 so that the blood result would reflect the dose Mr endo suggested. instead of going by my own instinct, and folks on here, doh!
Thanks so much for all your advice and correction 😘
Absolutely helpfull as usual.
So I will put the Levo up to 100 and then maybe get a test after 6 weeks or should I reduce the Lio by 5 to 5 say in 3 weeks? As well as upping the Levo to 100 straight away? then test in 6 weeks.
Thing is, if I'm a poor converter, do you think the extra 25 Levo would bring the T3 too high if I dont reduce the Lio? T3,
Increasing Levo first will very likely take your FT3 over range.
I would reduce T3 first, initially I would reduce to 5ml, it has a shorter half life than Levo so you could wait 2 weeks then increase Levo. Give it 6-8 weeks and check your levels. Your FT4 should have increased. I can't guess what will happen to your FT3. Reducing T3 should reduce your FT3, but the extra Levo might increase your FT3 depending on how much natural conversion you have but I wouldn't expect it to be any higher than it currently is. The results of your next test should give you an idea of what the next step is.
It's fine tuning that's needed and it can take a lot of tweaking over quite a long time to find the perfect blend of both hormones where you feel optimally medicated.
Thank you, I hear you and will do what you are suggesting.
Time and patience to get better. I feel like I have spent my life always rushing. In a way it feels quite liberating to stop and listen to people with knowledge and experience before blundering my way along.
In response to my email to him with my latest blood results, he has asked me to up my Levo to 100 MLS daily.
Didnt mention the Lio, so I assume that is to stay at 10 MLS daily.
He has brought my next tele consult forward to the 13th Oct.
Sorry to bamboozle you but I'm still not quite clear 😉 If I were to take the 100 Levo, and continue with 10 MLS Lio, how would that differ, (long term) to, reducing to 5ml Lio and then starting 100 MLS of Levo I two weeks.
Just that I am concerned if I reduce Lio to 5 MLS today and only take 75 MLS Levo for two weeks, that I will become even worse over the next two weeks.
As I said, we can only change one thing at a time.
Your endo has decided to increase your Levo to bring your FT4 up, which it needs.
By increasing your Levo your FT4 level will rise and very likely your FT3 level will rise as well, which may take your FT3 over range. This is why I suggested reducing your Lio first, it would bring your FT3 down before adding the extra Levo and give room for the increase in FT3 that the extra Levo is likely to cause.
But do it your endo's way and see what happens. It's essential that you retest before your next consulation so that you can discuss the changes to your levels that increasing your Levo has made.
If I do that and then find my T3 is too high with the next test in October, do you think I may find myself in the situation where my T3 is too high and my Endo suggests taking me off the T3, and take Levo only.
do you think I may find myself in the situation where my T3 is too high and my Endo suggests taking me off the T3, and take Levo only.
Who knows. But you can refuse to come off it completely, just say you're happy to trial a reduction due to over range FT3 but not to come off it altogether.
Finding the right balance when on combination T4/T3 hormone replacement takes a lot of tweaking over what can be a considerably long time.
You can't really compare. It's horses for courses.
Some people only need T4 and do very, very well on it. You wont generally find them here, they're off enjoying life.
If you convert T4 (the inactive/storage hormone) into T3 (the active hormone that every cell in our body needs) efficiently then you will do well on T4 and wont need T3.
If your body doesn't convert T4 into T3 well enough then FT3 stays low and it's low T3 that causes symptoms. Those of us who don't convert well enough tend to need T3 in addition to T4.
So it's all down to the individual, there is no one size fits all.
Excellant advice for you smilinhjane. 😊😊 Ive always thought its the tortoise that wins this race......so one change at a time & wait for a few weeks for the effect to fully kick in. Its difficutl to say whether theres something else going on. The effects of the correct dose/combination of thyroid treatment can be dramatic. Too high as well as too low can cause extreme fatigue. Has your endo checked your adrenals?
Im also on b12 injections and these days I have to half the vial and inject twice daily......Ive no idea why that frequency but it works. How often are your B12 jabs?
Yes you can test adrenals -the saliva test is good because it looks at a picture over 24hrs.
However its best to alter one thing at a time as otherwise you dont know whats doing what - can be confusing!! Been there done that!
How often do you have B12 jabs? You might find the B12d.org a useful sight to look at. They have an online diagnostic assessment you can do - free. Although some symptoms overlap with hypothyroidism others are distinctly different so I found their assessment tool useful especially as it alerted me to symptoms I didn't realise were related..
Thanks wavylines. I SI every other day Atm. I will have a look at B12.org again . It is so hard to tell with so many overlapling symptoms what is down to what. 🤔
Yes it is hard but some of b12 def symptoms are different, in particular the neuro ones such as pins and needles, tremors, numbness, double vision , others like incontinence are also not linked to hypothyroidism. I am unusual needing so much b12 to keep symptoms away so dont be swayed by that. Alternate days is a frequent level.
I was also diagnosed with CFS before I finally got treatment for my thyroid. If it were me Id treat the thyroid first as its a known established fact with that level of TSH. You really need the full panel doing but the nhs wont do it to check how well you convert. So get your TSH under one then do a full panel if you still feel rubbish and you are on a tight budget.
My CFS nhs consultant has never rescinded the diagnosis stating the hypothyroidism is a consequence of CFS......I dont believe him. I was misdiagnosed.
I was diognosed with depression, ME and some other things 30 years ago after giving birth to my son. I was almost into a mixadeama coma before it was realised that I had post partum thyroiditis.
We have really got to be proactive in our own health 🤔
You may also find you, and many of us on this list, are magnesium deficient. google "google scholar" the read subclinical magnesium defiency; ... produces a lot of nasty symptoms including fatigue. paper is by Dinicolantonio et al. many of us may notice we have some of the listed problems.
I love how things crop up on this forum just as I’m thinking about them! I’ve just been googling magnesium all morning! Umming and ahhing if I have magnesium deficiency.
I have yet again woken with a numb left check. I have NOT been good with vitamin supplements lately and as I’m due a thyroid test that be just left them for now till I get my test. I’ll get them back in into my routine and if I still get this numb face then I’ll add a magnesium test too.
The last time my face was numb was 2018/2019. I thought maybe Bell’s palsy but it’s never been that severe. My forearms go numb and hurt too, as if they’re waking up from being numb. Not exactly pins and needles and not as bad as the previous 10yrs when I’d wake every morning unable to hold a cuppa till my hubby massaged them.
I’ll get them back in into my routine and if I still get this numb face then I’ll add a magnesium test too.
Testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.
A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test.
As others have said I’d increase Levo. If you’re a poor convertor I doubt it’ll push your T3 over range. I don’t understand why it’s good to have a higher FT4 but I just know it works for me. I’m on T3/4 combo. My t4 sits around 60% and my T3 around 90%
Do you have Hashimotis? I have a tiny slither of the gland left after 30 years of AI attack.
I have reached a stage after 2 years of been unwell of not able to do much at all, in bed most if the time. I am at a loss to understand it. Going from being super busy, two jobs.
Will speak to my endo, (hopefully) this week. I wonder whether most people would fare better with T3 only?
It's said by some who study on the sidelines that most UAT ends up in the Hashi courtyard, apart from removal or clear injury.
Mine is, I've assumed, due to freaky high Arsenic levels which I found using Hair analysis. Finally, after years, my GP got me a useful non endo secondary specialist on this and the T3 worked well.
Arsenic is a major problem in some parts of the world. Bangladesh being a prime location - and parts of the USA, Chile, Argentina (and elsewhere). There's a little map on this link - though it is probably over-simplified:
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
I took T4-only, 88 mcg, for 28 years straight, even though I always had cold hands & feet and very low temperatures. When I was young(er) I felt I was bulletproof, and when I say young I mean 45; I'm now 75. My T4 went bad when I was 73 and in Europe, where they don't add sugar and sweetners, like sucralose (worse than sugar) to your food, I believe this greatly contributed to the fact that I wasn't converting the T4, as I had in the past. Anyway, I was a professional boxer for 10 years and kept up workouts for all the years I have been alive, until the T4 problem escalated to the point I was forced to get an endo and got T3 prescribed. I started at 50 T-4 & 30 T-3 & felt good but kept going as my endo prescribed 75 mcg T4 and 20 T3, then 100 mcg T-4 and the same 20 mcg's of T-3. The time line was 2 years. In other words, I stayed on 50T-4 & 30 mcgs T-3 for nine months, then nine months on 75 mcg's of T-4 & 20 mcg's of T-3, then 100 T-4 & the same 20 mcg's of T3 for just 45 days when it went bad, totally, and I couldn't take any T-4, as it was not converting (from what little I could tell, as taking T3 skewers the results, obviously) I had had 4 teeth pulled and, at first, I blamed that but that has now been 3 months ago and my thyroid must take some (if not all) of the blame. I just cannot understand why the T4 will no longer convert? Or? I am at a loss but I have about given up and get headaches regularly, just after taking a T-3 pill (usually 10 mcg or 7.5 mcg with 50 mcg T-4 (a 100 mcg pill cut in half) I want to try NDT but if I can't convert T-4 I can't so I keep taking the 50 T-4 even though it may be the cause of the headaches. I am sick of taking them and if I stop taking the T4 & the headaches disappear, I will quit the T-4 altogether. The problem is I also have a face full of sweat when I take the T3 (3 doses, every 8 hours) only and, besides the sweats, I get (very) slight palipations, just more reminders which make me feel like I (must) have to take some T-4 just to see that I can and thereby keep open a possible try of NDT (the only other thyroid medication treatment I haven't tried. You know, if I didn't know better, I'd swear that there are many more than just you, smilingjane, that have run amouk on thyroid medication after app. 30 years straight? I still have a functioning thyroid so I am always feeling like I never should have took ANY thyroid pills but here I am; as usual, a day late and a dollar short! Peace be upon us all in these troubling times.
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T3+T4 combo
T3/T4/TSH testing after starting T3
Started T3 in Oct 2012 - received my recent blood tests and I'm disappointed that my levels aren't as good as I'd hoped.
Recent blood test after starting t3 advise please
Recent results - T3 / T4
