I have read so many articles/responses now and sometimes end up more confused than when I started....just as I think I’ve grasped something it all seems like sand slipping through my fingers. (Thanks to Tattybogle for her ability to put difficult things simply.).
At the moment I’m considering giving up on T3 (discovered I’m a poor converter and Endo suggested 100 mcg and 2 x 5mcg T3. Although I felt great at beginning because of palpitations (I which felt like my whole body was rocking!) I reduced to 1x 5mcg of T3 split in half but still getting mild palpitations which I find scary,and would like to try going back to the 150 mcg T4 which I was happily taking before a doctor picked up on my really low TSH alone.
TSH has been really low for 20 years (praise for NHS records online!). but FT4 and FT3 always within range. My own regular doc knew this but was not guided by TSH alone and more but how I felt and symptoms.
Another doctor insisted I was still overtreated ..I’d already gone down to 125mcg so I obligingly went down to 100 alternating with 125. My symptoms - feeling cold, hair loss, constipation etc got worse I.e. increasingly consistent with being hypo.
Private blood test showed low TSH but normal FT3 and FT4 but high reverse T3.
In May 2020 during lockdown I had a TIA , mini stroke, which had no serious long term effects but I do wonder if, ignoring TSH, and feeling hypo could have been avoided if on higher dose of Thyroxine. Being hypo, from what I’ve read can lead to higher cholesterol and blood pressure which were thought to be causes of the stroke. (I’d always had lower BP).
Any thoughts on whether to give up on T3 and return to higher T4 would be welcome and/or also how to deal with palpitations. Thanks in advance.
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Catseyes235
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Once you are on thyroid meds, TSH is pretty irrelevant - it's the actual thyroid hormones that matter most. And if you are a poor converter, you may need free T4 to go over-range to get a reasonable level of free T3. It's a high free T3 that is dangerous - and just because this is often accompanied by a very low TSH in people who are hypER and not on thyroid meds, it doesn't matter a jot if you are hypO and on thyroid meds - lots of us here have had a suppressed TSH for years
But, to keep everyone happy, I'd ask for a dexa bone scan, so you can see your bone health now and which can then be used as a helpful benchmark in the future. And ask the GP to test key nutrients - ferritin, folate, vit D and B12 - so you can see what need boosting.
It's a shame you didn't get on with lio - but it doesn't suit everyone. Overall, I'd say you are likely to be looking for good nutrients and for free T3 to be a good 60% or higher through range to feel properly well - and it's then a question of how much levo you need to get you there x
Hi thanks for your response. I’m very conscious of osteoporosis as two aunts had it badly and my oldest sister is very shrunken and had knee replacements. However I had a bone density scan a few years ago which proved ‘normal for my age ‘, never broken anything but do have ‘bad knees’ which I keep being told is ‘wear and tear ‘ (my knees have troubled me since ballet in my teens!) My diet is about the most varied of anyone I know and no longer have Omeprazole for acid reflux and bloating since changing to sourdough bread. No refined foods etc plenty of fruit, nuts and meat, liver when my body says it needs it. From what I’ve read Omeprazole and the like can also have an effect on conversion.
T3 has always been in the upper quarter of results despite low TSH.
Madness all is madness. My daughter, who has the Dio2 genetic variant and the Medichecks diagnosis suggested I’d benefit from T3 but 8 months later after an initial boost but with palpitations ...no matter how I spread then cut down the dose I still feel jittery with palpitations. Not 24/7 but enough to be worrying/ concerning.
Haha it’s annoying that it takes three weeks to get a phone consult unless urgent. I had one a week ago and never seem to say what I want but I did express my worries of being in hospital or getting older and having my dosage reduced because of my TSH! Maybe I should get a tattoo!
150 mcg T4 which I was happily taking before a doctor picked up on my really low TSH alone.
If you felt well on 150mcg T4 then there seems no reason to change the dose.
Fixation on TSH alone is the cause of many problems!
The TSH test was developed to diagnose hypothyroidism...not as a guide to dosing and relying on this is wrong.
TSH is a pituitary hormone, not a thyroid hormone
It responds to the level of hormones in the blood ( high hormones = low TSH : low hormones = high TSH) ..
But it does not distinguish between FT4 and FT3 which is why both Frees need to be tested.
TSH is the signal to the thyroid to produce more, or less, hormone.
But the body doesn't always respond according to text book detail and those differences are important ...
so each hormone needs to be considered individually.
As you know T4 is the storage hormone and to become active it must be converted to the active hormone T3.
In turn T3 must be transported to the nuclei of the cells before it becomes active
If this transportation doesn't happen then the T3 remains in the blood, does nothing to help the body, and is eventually metabolised and excreted.
This is fairly unusual, but it might help to understand the process!
The body is clever so thankfully, mostly this works well!
A problem can arise at the conversion stage....
Poor conversion is indicated by high FT4 with low FT3
A thyroid genetic test ( Dio2) can also show poor conversion by the presence of a polymorphism/ genetic variant.
Quite often poor conversion can be overcome by optimising vit D, vit B12, folate and ferritin...
All essential for thyroid functions.
It can also be improved by increasing the levothyroxine dose...
this can produce the additional T3 the body needs.
However, in some instances the body still cannot produce adequate T3 and exogenous T3 is required to make up the deficiency.
Meantime the pituitary is working to instruct the thyroid to overcome this and the signals it sends out (TSH) can be wrongly interpreted by doctors who look at TSH without also analysing the thyroid hormone levels which affect TSH level.
In the majority of case the patient will not be overmedicated so long as FT3 ( active hormone) remains within range...
no matter what the pituitary hormone TSH is indicating.
For info only , the rare exception is patients with thyroid hormone resistance who need a high T3 level
To quote diogenes...
TSH is a signal, not a driver.
Your previous doctor understood this
Your new arrival does not...and wrongly thinks you need less T4!
Reduced T4 has produced less T3 and you are now undermedicated and symptomatic.
The higher dose of T4/levo (which is lowering your TSH and causing no problems in your case other than unnecessary doctor's concern) had been providing the amount of T3 your body needs to function
The lower dose of T4 was not enough to instigate conversion to T3 so T4 remained (unconverted) in the blood...
The "surplus" T4 then metabolised to rT3 which showed in the labs as being high, but which is eventually excreted.
You became undermedicated and as you already know cholesterol level can then rise...
my cholesterol level dropped considerably, to normal, when I became correctly medicated.
My blood pressure also lowered.
I'm not medically qualified but in your shoes I'd be inclined to return to the higher dose of T4 which previously seemed effective.
Hopefully the palpitations will then cease.
T3 needs to be used with understanding ( I need high dose T3-only to function!) and I don't think this new doctor understood what he was dealing with
We now have more discussions about T3 which for some people is life saving ....but it must be correctly used, not just prescribed in the vague hope it might help!
If the body doesn't need/ like it it can signal this by causing symptoms
Before changing thyroid meds/doses look at iron levels, as adequate are imperative to make thyroid hormone meds work effectively, especially when we have other issues going on. A common side effect of taking thyroid hormone meds with low iron are palpations and feelings of jitteriness. Also the same can be said with cortisol issues.
Changing thyroid hormone meds/doses will not address possible iron or cortisol issues and could just make matters worse.
I also had a TIA several months back - crap isn't it 🤗.
Pre TIA I was a blood donor and had to give that up (so sad I wept when had to tell them). because of TIA but hadn’t for a while before due tiredness. Test for iron done before each donation. I did have a ferritin test and the only time it was abnormally low was I realised a few weeks after giving blood.
I did put it to my good doctor that it’s not as if my thyroid was growing back and he agreed. Should I ask for further tests and what are they? Apart from that one low ferritin test I have never ever been anaemic though certainly had enough tests in my twenties when I was hypo but knew nothing of thyroid but I was just dismissed (tired /neurotic woman!) until I was in a hyper phase then I was diagnosed as having Graves. Thanks for your response.
High RT3 won’t be helping, may take a while to clear and could be cause of your T3 intolerance but remember just because the meds aren’t working right it does not mean it is the meds per se, and it can be tricky finding the cause of the elevated RT3. If iron is good, I myself would be next looking at cortisol levels. The best test is a saliva stress test.
If you are a poor converter you will most likely need to medicate a little T3. You have tried halving a tablet but may be able to introduce T3 better in even small doses, ie some members have had to crush a 5mg tablet and take a “speck of dust’ dose off the tip of their finger several times a day.
I am donating blood post TIA but have heamochramotois. However, if you good iron levels & BP is ok, you could enquire about blood donation again if it’s something you would like to continue. If no-one will take responsibility write to your stroke consultant asking permission. However, I wouldn’t do this until thyroid meds are sorted as donating will stress your body further.
Two nephews and niece (siblings) have haemachromatosis but apparently blood drawn isn’t used! They won’t take blood as I’m on blood thinners since TIA. Hah family is a genetic conundrum. My brothers and now sister and I have macular degeneration while daughter, one brother and aunt had thyroid probs. The idea of messing with cortisol is daunting. I’m 72 and just want a quiet life going into my dotage!
‘have haemachromatosis but apparently blood drawn isn’t used!’Those are old reg and they certainly wouldn't waste resources if the drawn blood couldn't be used. In 2019 donation rules changed meaning we can donate our iron rich blood. We just have to be in maintenance.
You can also donate when medicating thyroid hormone, blood thinners, BP meds, but have to meet the usual criteria of not having recently travelled abroad, had multiple sex partners, etc. All criteria stipulated in link below.
“The idea of messing with cortisol is daunting”, yes I agree but taking a supplement to support improved cortisol levels/balance isn't exactly that 😊. Cortisol often become high when thyroid hormones become inadequate, and then may act as a barrier in getting meds working effectively.
Amazing - they must have changed then since 2018 when my niece talked of how they just got rid of it! Unfortunately you can’t give blood on blood thinners for obvious reasons! Shame.
It must depend which blood thinners are medicated because I donate whole blood on Plavix (clopidogrel) and there is even no waiting period, but I have to wait 14 days if wishing to donate platelets (which I can't as take Plavix daily).
It might be worth you checking out your meds cos you may be surprised 😊.
Yes I’m on Clopidogrel. I’m 72 this year so they may not be interested and I’d like to feel palpitation free. And have dosage settled. Useful info though thanks. Must ask but are you male as you donate platelets?!
I am female but not allowed to donate platelets as am blood group O negative, amongst other things. Both sexes can donate as there is hardly any physiological variation in the platelet count between male/female.
That's because of a guaranteed absence of antibodies in men's blood.
When women are pregnant a small amount of baby's blood can cross over into the mother’s blood stream that creates antibodies to protect her. This blood can not be used for platelet donation as can create a rare reaction with patients blood cells.
Then statistics show after pregnancy generally Mums get too tired to donate blood/platelets further or don't have the time until kids are grown up, as platelet donation takes much longer. Then the window for donating anything reduces because as you say the blood services aren’t always so keen to take blood from elderly people.
I couldn’t donate when in my 20’s because considered underweight! so I came back to it in my 50’s and was part of the interval study looking at shortening the time between donations. I was on 14 weeks but think too short an interval for me. 16-18 probably better. Men can be 12 weeks. As I’ve given blood before they might take me on again but they wouldn’t take it if started now. Looks like things have changed though in the last few years since I donated! I’m O positive btw.
Some thoughts , (not in any particular order, and with no particular conclusion !)
~if you do go back to Levo only , don't assume you will still need 150mcg. it was quite a while ago that you took 150mcg, things may have changed. eg . Try 125mcg again , then if it was definitely 'not enough' and you felt hypo , then perhaps try 137.5mcg for a while ?
~ do you have any blood results from 150mcgLevo ....125mcg Levo ?
~ do you have any blood results from 75levo /10mcg T3..... 100levo/10 T3 .... 100levo /5 T3 ?
(might help people give more relevant opinions on your next move)
~is your TSH still below range on the Levo /T3 combo ?
~ If fT4 and fT3 were in range on Levo only, and you felt well , and it was only the TSH that was the GP's 'issue'...then i can't see any reason for bothering with 'lower T4, +T3' ,if taking T3 gives you palpitations.
Before you commit to trying 'Levo only' again .. might it be an idea to reduce T3 even further to just 2.5mcg /day ? (i think i've heard of a few people on here who only need to take a really tiny amount, but i'm out of my depth on T3, never having taken it myself)
~Your 'high' reverseT3 could been high for lots of reasons , and if high fT4 was not the reason, then lowering T4 and adding T3 might not lower the rT3 anyway.
~ might it be an idea to try levo only by yourself (without involving endo?) ..just thinking it would be a shame to loose your (NHS?)T3 prescription and then have difficulty getting it back if you change your mind.
You’ve hit the nail on the head ...I don’t want to lose my T3 entitlement if I go back. I was last on 150 mcg I think about 2014 -16? Since on T3 I have tried reducing to 75mcg with four doses of T3 then back to 100 when didn’t feel good and after 6 weeks results pretty much the same. I’m definitely thinking of going back to 125 with the addition of 2.5 T3 for six weeks and see how I feel. 125 mcg T4 is what I’ve been on with consequent hypo symptoms but as I said to the endo it’s difficult to tell if the brain fog etc is just my age as you get used to bad circulation, falling hair, feeling cold. When I took T3 I realised I could feel so much better! Trouble is that the endo also said he’d like me to add in more T3 if possible and said in letter to doctors (despite his understanding of my frustration). he would like to see my TSH come up closer to 1. Yes it’s still v low on combo.
I used to take 150mcg from age 37 ~ 50 (my usual TSH between 0.04 - 0.2/ fT4 anywhere from 60% to 130% , no overmedication symptoms, found a few NHS fT3 results~ between 30-60% )
Then following menopause i became overmedicated on 150mcg ( symptoms of fine tremor, being really 'jumpy' , weight loss , bladder issues and some ?kidney pain, TSH lower than usual at 0.018)
So i then took 125mcg for 3 yrs . (symptoms improved, bloods similar to previous )
Then in 2019 ....i felt perfectly fine and was quite fit and active as long as i didn't overdo it , but my fT4 had apparently gone through the roof, so GP reduced to 112.5 , which wasn't great and i didn't feel fine anymore , and my ability to do my job went down the swanny , but 3 months later fT4 had gone even higher , so they told me i'd die! if i didn't reduce to 100, so eventually i did .... but 100mcg for 3 months caused Chronic constipation , Zero appetite , and rather dangerous Zombie brain (crossing road without a 'grown up' had become a challenge)... so despite the 'still too high' fT4 .. he agreed to put dose back up to 112.5 in 2020 saying he 'didn't want to make me unwell' and i subsequently improved quite a lot.
fT4 had gone from:
2018 TSH 0.046 / fT4 14.7 [7.9-14] 111% ......felt fine on 125mcg.
2019 ..........0.041 /..........20.5............... 206% felt fine on 125mcg. (but reduced to 112.5mcg)
2019...........0.097 /..........22.7.................242% felt naff on 112.5 (further reduced to 100mcg)
2020..........0.511 / ........19 .....................181% constipated/brain dead on 100mcg (back to 112.5)
2020 ....... 1.94/ ............16.6 ..................141% felt better again. and decided to stay on 112.5mcg
I've never felt as good again as i felt when i was on 125 , but a lot has a changed since then, once you loose your fitness/activity/work level it's hard to get it back ... and anyway i'm mostly retired since the reduction to 112.5mcg messed me up, so i'm less active anyway.
I have mostly been on 112.5mcg since then .
I did try a 2/3 month experiment back up to 118 ish, ( i felt well enough on 112.5, but had started to put a bit of weight on)...... but on balance , even though the weight went away , i didn't like the higher dose ,it gave me really tense calf muscles, and i stopped sleeping so well, so i recently put it back down to 112.5 ,and told myself to go for longer/ faster walks to make sure i can still fit in my favourite trousers.
I no longer think my GP has enough knowledge to have much of an input on what dose i take...as far as i'm concerned he just 'supplies my tablets'.
i've got big stockpile and i'll take what i decide to.
I've never seen an Endo ,and from what i read on here, i can't see any point .
If/ when i want to try something different, i won't be taking instructions from anybody about my dose (apart from people who actually use thyroid hormones themselves, or have done some actual 'thinking' about it )
So I reckon you should keep your T3 prescription (by hook or by crook), and your Levo prescription .. and try adjusting your dose in future based on what YOU think is the best advice.
We've both tried 'doing it their way' ..... you got a TIA and i ended up in early 'retirement'
How much more of a hash of it can we possible make by using our own brains to decide what to do next ?
Funny you mention menopause as I was on HRT and doing a degree in my early forties in 1990s and doing just fine. After my degree I had thyroid eye disease starting with double vision which required operations which eventually worked well but didn’t do any career prospects good being out of the job market for sometime as I lost all confidence in how I looked. I seem to remember doc at Uni saying my TSH was low and I should increase Thyroxine and I explained this was incorrect and he apologised! I just used to take the tablets - at night I think and get on with life but it’s really taken it toll as during 20s I was also doing a degree and gave up as I had a recurrence of what I came to recognise as hypo symptoms . Then went hyper which was diagnosed in ‘79, had RAI then left to go badly hypo and took a good while to recover. From 33 to 44 I think I had normality?! Blimey what a mess.. soldiered on though like you but retired at 66 as getting foggy brained and losing my oomph....guess that was after I decreased meds?. I regret not keeping a diary! Medical records don’t reveal much .. bit like joining the dots. My childhood records disappeared after leaving Scotland but I didn’t know this until asking to see my records in the 80’s. As a 60’s teenager I saw my doc about being too thin and sweating palms! You’d think the surgery would tell you! Anyway mustn’t rabbit on. I think the problem is it was seen as a disease of older women. Witches and bitches. I’ll shut up now as I could go on!
Btw it was the endo last year, who listened to my symptoms who suggested T3. Bad doc was very against. I was expecting to wait a year to see him but was only 2 weeks, He wasn’t quite on board with NDT though. Hopefully there’s change afoot in the world of hormones.
I’m in favour of tweaking meds for the experienced but if I was new to all this I’d find it rather perplexing. Let’s keep poking at the medical profession though as they shouldn’t sit back in ignorance!
* How does your endo think that increasing T3 is going to raise your TSH? (the endo also said he’d like me to add in more T3 if possible and said in letter to doctors (despite his understanding of my frustration). he would like to see my TSH come up closer to 1.) T3 lowers TSH more than T4. Is he perhaps a little confused???
* High cholesterol doesn't cause strokes, despite what doctors think.
* If your cholesterol is high, it probably means your FT3 is too low - there's an inverse relationship.
* If you stop taking the T3, won't that make your FT3 lower? If so, then cholesterol will rise.
High cholesterol can fur up arteries and thus lead to clots and stroke. Stroke unit at St George’s and then clinic said it was implicated. FT3 always been in higher range of range. I was previously taking 125 mcg T4 then reduced to 100 plus 2 x 5mcg Lio which I’ve now reduced to 1x 5mcg broken in half. Endo just wrote that he’d like to see my TSH come up ...maybe as a sop to the docs who don’t want me to be on T3 ...they are haggling about who pays for it!
I don't care how many doctors said it, it's not true. Cholesterol is in the arteries because it is nature's sticking plaster. The damage to the arterie is already done when the cholesterol comes along to cover up the wound. When the wound is healed, the cholesterol is absorbed into the cell walls, because that's what cell walls are made of, anyway. Having low cholesterol is far more dangerous for the heart because you don't get this sticking-plaster effect to heal the damage to the arteries.
I'm sure you know that doctors know very little about thyroid, and insist that the TSH tells them all they need to know, which we know is not true. Why would you think they know any more about cholesterol?
I would keep T3 the same and lower your T4 Levo. It may take a couple of weeks to feel the benefit. When my TSH suppressed I reduced my Levo and left my T3. My TSH came back into range just about and I felt much better. My TSH is currently 0.90(0.35-5.50) and my T3 and T4 levels are mid range. Bloods done not ingesting meds prior.
Thanks but did try that ..6 weeks but no change in palpitations and FT3 and FT4 still good. God it’s soo complex. So many different suggestions to think about! Did you get palpitations?
No I haven’t had palpitations at all. I’d get severely weak especially in my legs. It happens if I’m over or under medicated. I’m a poor converter also confirmed by blood results and a positive DIO2 gene test. If I’m over medicated my first sign is hunger followed a day or so later by dizziness and being irritable. It can go worse to weak legs and being very tired. What I do is get busier. I go on a long fast walk and that sorts it out. I even got myself a cross trainer that I go on if the weather is too bad to walk. I feel I need to use it up or burn it off sometimes. This doesn’t happen often but when it does I now know how to manage it. I feel it’s about balancing the thyroxine intake versus my energy expenditure. If you’re a poor converter I certainly would not think about stopping T3 as you said in your post. You’ll definitely be needing it. It’s just about finding your own personal level in conjunction with how active you are. I have noticed over time also that when my TSH is suppressed or near suppression that my white blood cell count is always abnormally low. Have you noticed this in your full blood count bloods at all.
Hi I’ve just had bloods done by my GP and my white cell count is very low, my TSH is is very suppressed 0.008both my T4 & T3 are right at the top of the levels on 100mcg & 0.625 T3 . I was thinking of reducing myT4 ( my Endocrinologist not concerned but I am - so going to slowly reduce as although on paper my results are good I’m not feeling great 😞
If it was me I’d start by reducing my T4. I think you’re right in slowly reducing it. That’s sensible. See how you feel after a couple of weeks. What we all strive for is feeling well. I reduce mine ever so slightly if I feel I’m going over or the other way is to energise yourself more. Burn off the thyroxine if you can by fast walking each day until you feel better. If I feel I’m heading towards suppressed TSH I go on a long walk next thing I feel fine. I feel it’s a fine line balancing the thyroxine you ingest versus the activity and energy levels. I hope whatever you try works out for you. Hormones are buggers to balance at times.
Thanks McPammy I’m due my endo blood tests on 22nd of this month so will see what the levels are.Last year as my levels were both on the high side my endo suggested we try a reduction to 75mcg and keep T3 the same and my levels dropped to T4 57 %& T3 & 36% through the range very quickly and I felt terrible so I think I will do it very slowly .
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