(however i also had ?covid first week in april , and have not really been feeling right since).
Amazingly, i'm not constipated , have not put any weight on , and am still surprisingly functional (ish).... but i think it's probably time i did something about the disappearing fT3 , and 'more levo' does not seem like a very clever idea.
I think my TSH is gradually going up (despite very high fT4) as a result of my fT3 gradually going down. So conversion is getting worse over last few yrs for whatever reason ?
So... i'm ? intending to add a little T3 to my levo, (am not concerned about GP response if T3 lowers TSH as they are used to mine being very low anyway so unlikely to meddle with my levo (and i certainly don't want their 'advice') but as i ensure i get prescribed more than i take i have plenty of leeway even if they do interfere at some point).
am intending to start with just 2.5mcg for few days, then 2.5mcg/ 50 levo in morning and 2.5mcg/ 37.5 levo at bedtime... and see how it goes from there.
Thinking of keeping Levo at 87.5mcg/ day (not reducing from it's current 91%)
folate range looks like 11 (3-25) ish (Monitor My Health ,silly graph, will look properly tomorrow )
Don't know how i got to be 58 ..... that's nearly 60 for heavens sake ... must have happened when i wasn't paying attention .
you know what's really ironic ? ... now that i have finally got the sort of results that make it relatively easy to ask for NHS endo referral /NHS T3 trial .. i can't think of anything that would be worse for my health than asking a GP to refer me to an endo and have either of them involved in any changes to my thyroid hormones.
You wait! I seem somehow to be 61! How the heck did that happen? I hate realising how old I am. I’ve lost the last 10 years to this crap, I need to get better fast now before I lose hope. I still think I’m 40.
Mum lives with me now. Dad died just before Covid at the end of 2019 and I have finished clearing their house for sale at auction just this week. It has been a huge sobering experience. I feel my own mortality very much right now.
I really want to get over that feeling and get motivated again about something. I want ambition back in my life, not just this daily round of caring and throwing away a lifetime, part of which was mine.
Amen to all of that... house going will hopefully be a weight off your mind , not that that makes the rest of it any easier , but it might make some mental space you can use for 'you' . hope so.
I’ve had the sort of results that make it easy to ask for an Endo referral for several years. Several months ago, my GP’s referral was rejected by Endo who stated there is a blanket ban on liothyronine prescriptions in this county and, if symptomatic on Levothyroxine, must be due to something else. Currently trialling introduction of self sourced T3 alongside Levo - to good effect. Once further along the process, I intend to tackle endo’s response - with both barrels
This breaks my heart! I was under the mental health crisis team for depression (having tried virtually every antidepressant out there) and put on liothyronine; within 5 days I felt (almost) normal emotionally. Obviously it took longer for my body to feel better, but think of the suffering these experts inflict on people.
I’m exactly the same. I was under medicated for at least 10 years according to the Endocrinologist I managed to get referred to. He had a graph on his screen with all my previous results since having partial Thyroidectomy 29 years ago. I actually thought I was dying I felt so ill. My GP just kept telling me I was depressed or having panic attacks. I eventually started a T3 trial last December & I started to feel human again. I still have a way to go but once feeling up to it will tackle our practice although it will be a waste of time.
when i first came here and half heartedly wondered about a trial of T3 , i found my NHS area had a total ban on prescribing T3 trials for any 'new' patients, (those who were already on it could continue)...... this policy was under review,... so i waited.... and now they do allow trials for new patients , (but that still doesn't mean i'd get offered it without allowing them to make me ill and mess my life up first).
I can't risk allowing the Muppets to play God with my prescriptions, i need my job, and i've had enough gaslighting already so i really don't need to listen to anymore ill informed bollocks, it's bad for my self esteem .
"do it first, and ask permission later" has been my modus operandi since i was about 4 . This forum is the best safety net ..... NHS route feels like the opposite.. far too risky.
I'd love to know,the percentage of people who feel well just on Levo, I know the problem is a subjective one and I know many of us here on HU are often more complex cases, but I'd love to know.
We're told Levo is the panacea for all hypo related problems but we also know its BS. I cant help wondering if people on Levo who dont feel great are just resigned to it as they dont know there are alternatives out there, put feeling dire down to ageing, stress or hormones. Or are gaslit by doctors trying to tell them they are depressed or anxious.
I was on just Levo from 1981 after thyroidectomy. Was out straight on to 200mcg levo(!) but after 2 weeks stopped threatening to put a brick thru my kitchen window! I just got on with life. I've no other health issues. No complex issues! Never had blood tests for years but felt ok with that large dose. When finally had blood tests was told 'all ok' but know my T4 was at the top end of the scale. So I move house@68, new drs surgery+they start messing with levo cos of suppressed TSH! My health goes down the pan. I find this forum. Private test with MMH shows I don't convert well@all so no wonder I needed such a high dose to function. I'm 5'6" +10st 7lbs but when I was running daily I was 9st+still on 200mcg of levo. My ignorance was not bliss+from help here am now on T4/T3 combo@age 75!!!
I think that unless one has an exceptional doctor, or Endo then most people just struggle on. Until they discover a forum like this and realise it doesnt have to be that way.
Intriguing. I have never felt any significant lasting real benefit from TH. When I was on 25 mcg and then to 50 mcg there was a short but important increase in my heart rate and a slight but noticeable ‘ease’ there. Further increases have been fraught with grades of awfulness. Whilst T3 (short lived due to symptoms) has provided some lasting clarity re: brain fog, I still feel ‘wrong’.
I will be very interested in your progress. I saw your request for a source of T3 without prescription and wondered if you were following this route.
Also scratching my head over you being able to hold down a job recently. Could this have something to do with this serious change from your usual TH routine?
Anyway I wish us both good luck in our new ventures!
Thanks arTistapple....good idea , but i don't think it's job related ~the first test with T3 @24% was taken the week before i started the job .and i'd already had a few TSH's over 1 that had surprised me ...... so i suspect it's probably been going down for a few yrs already .
am quite surprised to find that it's not my high fT4 that kept my TSH low , i always assumed it was, but clearly not.
Well just as an aside not taking T3 does actually in my own case, keep my TSH at what would be considered ‘normal/fine’ levels. On the basis of TSH alone I definitely look as if I am on the right road! I was under the impression (wrongly it seems) that T4 would drag up my T3 levels. So now I am looking at reducing my high T4 by dropping Levo a bit and re-introducing T3. Similar to yourself.
How on Earth do we think even an interested GP can manage a hypo patient within the guidelines, goodness knows? Then (in my case without seeing me nearly two years ago) NHS Endo just replied, in brief to my GP, titrate her Levo. If this is the quality of our treatment by an eminent endo - no wonder so many of us are in a hell of a mess. No wonder so many of us are fearful.
Muhhh .. if it was really cheap i'd be more tempted, but folk seem to need to take quite a lot of it ... but am definitely interested in NDT , prepared to give that a go if i don't get on with T3 but thought i'd have a go with T3 first , as if i don't need much it's going to be cheaper and easier to get consistent type that won't disappear/change as soon as i decide i like it.
NDT brands disappearing / and potential for lack of consistency when manufacturers change what they use have put me off a bit.
Hmm yeah trying to do a little math 5mcg T3 from M = 30(ish)p a day, consult with Roseway and T3 prescription for 3 months seems to be around £120, self sourced T3 likely the cheapest route often postage charges make it worth ordering a reasonable amount but then when you ideally want to trial the options it's hard to know which route to take🤷♀️(shrugging)
I'd suggest it's worth a punt getting an NHS Endo referral as you might strike lucky or you can just walk away.... your figures show you are in need of T3 so a strong case for a trial
I'm pretty sure i could get a NHS trial (eventually) ....thing is i've carefully cultivated the current situation at GP's ~ they pay my weird thyroid results no attention ... they think i take 112, they prescribe 125 cos someone somewhere can't add up, and i've trained them to leave my bleeping dose alone if they want a quiet life and to ignore my numbers if they can't make sense of them ....... and since i've done this , i take whatever dose i think is best and have stayed relatively functional for the last 3/4yrs as a result , hence i never go to see them anymore and they have no reason to start paying any attention ... everyone is now much happier.
last time i let them get involved in 2019, it really messed my life up, big time .
asking for a referral would almost certainly bugger up this nice little ' ignore the scary numbers and just sign the repeat prescription' arrangement .... i don't want to risk it.
so for now at least , i think i prefer to stay 'under the radar'
I totally understand your concerns and have had a similar journey but I felt so aggrieved at the years of sub healthy treatment I'd received I wanted to force them to acknowledge my need for T3... I did get the referral with similar numbers to yours and have secured T3 on the NHS also we've come to an understanding like yours with the Endo who no longer bothers to make a fuss about 0.05 TSH and is happy if my T3 & 4 are within range and I've just been given the blood test request to be done in a years time... so I do as I please in between as I know how to get the 'right' results.
It just pushes my buttons that they brush us aside unless we really give them a hard time and fight for what we need 😡 also the thought of having to have the T3 conversation if hospitalised 😕also resent the thought of having to pay for it for the next 30+ years
The fact that your area has gone from a blanket ban to allowing trials suggests a change of thinking?
You have all the knowledge to get what you need out of them and like you say they have happily ignored your low TSH for years so that is unlikely to trip you up
I've tried all of them, Levo mono, NDT, NDT and a bit of Levo and now T4/ T3 combo. Like you I had concerns about the high price of NDT, availability and batch inconsistencies. I liked NDT and if it had been cheaper and easier to source I think I would have continued. I used Thyroid S, must admit I have never tried Metavive.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
For brain and nervous system health and prevention of disease in older adults, serum vitamin B12 levels should be maintained near or above 1000 pg/ml."
Folate is recommended to be at least half way through range
Ferritin:
Optimal ferritin level for thyroid function is 90-110ug/L
Your numbers above are a tad vague
Ferritin 73 (aiming for 100+)
My old maths teacher would have asked....
73 what? Elephants?
You're right you need to work on the nutrients which are essential to support thyroid function/ conversion.
Your plan....
am intending to start with just 2.5mcg for few days, then 2.5mcg/ 50 levo in morning and 2.5mcg/ 37.5 levo at bedtime... and see how it goes from there.
Have you been splitting T4....sorry maybe missed that!
Do you mean you intend to start with 2.5mcg T3-only for a few days...then move to 2.5mcg twice a day with levo
I only split/ titrated my dose early on for a few months but it didn't work....later realised splitting doesn't work with RTH.
So, I don't have a lot of experience with splitting however I might suggest the following as a gentle initiation of T3
Your plan involves far too much T3 to begin with....you will be in danger of overwhelming your system with 5mcg a day especially since your FT3 has been so low. I always suggest it's like putting high octane racing fuel in the tank of an old Mini....trouble!
I would start by adding one dose of 2.5mcg T3 ( probably the morning dose ....but up to you) to your levo for a couple of weeks then add the 2nd daily dose of 2.5mcg to the second daily dose.....then hold that for 2 weeks and see how that feels.
That's 6 weeks....so I would test at that point ( or wait another 2 weeks if you prefer) to see how levels are doing. Your FT4 and TSH will have dropped a bit. Monitor any symptoms carefully then review your dose.....post the new labs.
It's a long, slow ( boring!) process but think tortoise and hare!!
With those labs an endo should prescribe T3, if you rely on NHS and quietly self medicate T3 you will have difficult questions to answer re your labs and you'll end up tweaking your doses before NHS tests to try to achieve acceptable results....tricky.
So I suggest you speak to an endo ( yes I know....been there in a former life!!!) or come clean with your GP.
Or just take control now!
Thankfully my GPs accept my off-piste high dose T3 protocol and leave me to get on with it.
Either way decisions are difficult....I took the bloody minded route!!
Just my thoughts tatty, I'm sure others will have other suggestions.
yes , you could be right about 5mcg being too much to start , given how low my fT3 is.
(no , i meant '2.5mcg with my levo' for a few days to see what it felt like .... then 2 x 2.5 with my levo if my head didn't explode .... yes i have been splitting levo for years)
so maybe i'll follow your 'slower' suggestion ( when in doubt 'slower' seems the smarter option)
Re. the high fT4, I lowered to 87.5mcg to check if lowering fT4 would improve conversion a little ... it should in theory , but it hasn't, i got way less T3 ...and even though fT4 is 91% i daren't lower levo any more while TSH is saying 5 and while fT3 is already so low .... (never thought i'd see a TSH of 5 on my results ... am quite shocked)
RE. endo referral ... i know what you mean ~ these latest labs are a 'shoe in' for an NHS trial ,and it seems a shame to not use such a good hand of cards, but see my reply to Tigger ......due to previous history , TSH as low as 0.04 ish on annual bloods isn't going to cause problems with levo prescription even if i don't come clean about using T3 just yet ..if the subject comes up i just give em a paddington stare and remind them how i'll they made me by meddling previously and they shut up and sign the prescription.
Not totally made my mind up how to proceed re. NHS , but i'm extremely reluctant to get them more involved at the moment... my gut feeling is 'don't stick your head over the parapet'
As you know a high FT4 suggests an overactive thyroid or overmedication but you seem to have something else going on....but you've sussed that one! But what!
The risks of high FT4 are too considerable to ignore....including cancer and dementia....yes I'm just an old witch!!!
This seems like an odd question cos I'm sure you must have checked your TPO and Tg antibodies for Hashi's..... they can cause inflammation and cause the thyroid to 'leak' hormone into the bloodstream...... slow burning cause of raised FT4 maybe?
Your FT4 has slightly fluctuated over time and is now falling.....
Hashi's can begin very slowly and may take months or even years for the condition to be detected, or so I once read.
Do you have a family history of thyroid disease?
How you checked out celiac disease?
Are you taking kelp in any form?
Something must be inflaming your thyroid
I'm not in a position to push NHS thyroid treatment....they nearly killed me with wrong diagnosis and treatment until I grabbed the rudder and swung round in another direction....so I fully understand you need to control this
I think your plan to ( very slowly) add T3 has most traction...it should lower the FT4....don't worry about TSH...but you know my stance on TSH!! .....mine went AWOL years ago!
And check those possibly "slow burning" antibodies if you haven't already ..
Elephants....I see Boris J has been given a family of large wooden elephants for his birthday....hope he remembers they never forget!
definitely autoimmune TPOab >3000 [0-50]at diagnosis 21 yrs ago ,
195 [0-50] in 2016:
i added them to this test out of curiosity .... now 101 [0-34].
but.....
..... if the excess T4 is coming from thyroid damage/ dumping then (i think ?) i'd expect fT3 to also be highish ... so i don't know if 'thyroid dumping due to damage ' is a reasonable explanation for high fT4 in isolation, or not.
(i'd like an ultrasound just out of curiosity to see if it's now 'a raisin' which is probably the only way to rule it out ) .
had endoscopy and biopsies in 2016.. definitely negative for coeliac, definitely not taking iodine in any form (apart from some crispy fried seaweed from the chinese once in a blue moon ~which is probably cabbage anyway.
The very high fT4 levels i've had in the last 4 yrs 'ought' to lead to some overmedicated symptoms you'd think , but they don't seem to .
these results are from when i WAS actually overmedicated with clear symptoms in 2016:
TSH 0.018
fT4 119% ('the muppets' didn't test my fT3 )
but ...... from 2018 until now i've had MUCH higher fT4's than 119% without any sign of overmedication: So when i was overmedicated in 2016 it must have been high fT3 causing the symptoms , not high fT4.
I'm really not fussed what my TSH is .. but i'd rather not run fT4 this high for much longer even though it clearly isn't causing overmedication ( i say this because TSH is now 5.3).
The only thing that explains the TSH and the fT3 is if i've gradually stopped converting the T4 to T3 as well as i used to.
Going round in circles here.... but the high FT4 is likely impairing conversion....but something is missing
Ultrasound ...good idea...see what's in there... but something is producing all that T4 so I doubt it's "a thy-raisin"!
But I agree you need to lower that FT4
I wonder if covid has played some nasty trick....my younger son's thyroid function seems to have declined since 2,maybe more, bouts of covid and he's now had to give up work
This is a helluva hard read, beyond my aged grey matter now but it might throw a light in dark corners....maybe you've read it.
In the meantime I'd be inclined to reduce T4 before adding T3 as you planned....but very slowly...because the bottom line is that the cells need adequate T3 as you know.
I'm clearly no expert....just have the curiosity of the proverbial cat....and we know how that ended!!!
Hi there sorry you are having trouble after being stable for a while - my input would be - not sure how bad your Covid episode was but it can disrupt the thyroid process I read - have you tried Vitamin C to help the body after being unwell ?
yes , getting 'whatever it was' very shortly after lowering the dose to 87.5mcg has thrown a bit of a spanner into my careful observations... very hard to know if ?covid made things worse or if it's just the dose reduction., but it is a distinct possibility cos covid definitely has the potential to mess with thyroid, but as my T3 results were already going south before i got it, i'm pretty sure ?covid is not the only cause .
Whatever it was, it was nasty , went to my chest and took weeks to go .
Does non-thyroidal illness not lowerT3?? Think you had some kind of eye/eyelid problem fairly recently, then your Covid, chest thing, cough thing? All of this might lower T3?
Your readings at the moment look really similar( I think) to McPammy's before she started T3, and you know how successful that was for her! Bodes well. I get a bit mixed up understanding McPammy's path. I think she said on the forum recently that before she started T3 her TSH was 5.37 (0.35-5.5), FT4 14.2 (7.86-14.4), 96.94% on 75mcg T4 and did not have an FT3 result. She also said when her FT4 was top of the range on 75 mcg T4 she was only converting T3 at a very poor 8%. I'm a bit mixed up exactly what she did, but think when she dropped T4 to 68 mcg and on 10 mcg T3 felt wonderful. I think she felt wonderful with Tsh just over the bottom of the range, and FT4 38.84% and FT3 52.17%. Might be useful to know as you continue your journey and try to introduce T3, as if her success story is FT4 38.84%, with FT3 52.17%, it is different from what most people seem to have success with.
Because zinc, and selenium are so important for conversion it might be worth testing zinc, selenium and copper?? When I was nearly toxic with over-range selenium , my conversion was excellent and folate, B12, Vit D and ferritin absolutely bang on where I wanted them. Zinc was too low, but came up as selenium went down.( My normal selenium is up-regulated and over range) Selenium might help you optimise folate,ferritin ,Vit D and B12, IF you test low for it.
I seem to have the opposite of McPammy but similar as I had FT3 top of the range and Ft4 at the bottom and below. Most recently a dose reduction in T4 of 9 mcg, dropped my FT4 30 % and FT3 was at 40.54%. I have a suspicion that my particular brand of liquid levo has been sub potent as the local warehouse has PURGED it, though the Newcastle Alliance warehouse still supplies it in that area. It might be my thyroid., but the levo might be sub potent. Is there any chance that your levothyroxine has been dodgy????Red Apple was sure sometime ago that her Accord???T4 was sub potent. Could you have been using sub potent batches later than her because you had stockpiled??
Very interested to see how you get on with T3 when you introduce it, as I too have just started T4/T3 combo. Best of luck with it. I hope it is transformative for you , in a good way.
Interesting thought about my latest results being similar to McPammy 's , yes it does bode well. It's weird finding myself in the land of 'high' TSH , after 20 yrs of 0.05 ish .
very interesting thought about testing selenium ( and zinc copper ) i take a Vid D supplement most days that also contains Selenium 155% RDA selenium, Copper 100% RDA and zinc 150% RDA and have been taking it for about 3 yrs on and off.... but have never tested those levels.... i should look into that..
i rotate my stockpile carefully . so not out of date , but i do take Accord 50's and i know helvella and SD had an issue with them ...... mmmm. (don't think sub potency is the issue here though, because my fT4 levels are so high) .
My TSH last blood check was 1.09 (0.35-5.50). I don’t feel that’s a high TSH myself. I feel it’s more like normal for a healthy person. I’m getting my bloods done again next Tuesday 2nd July. It’ll be interesting what my results will be then.
.... which is the same sort of 'high TSH' territory i am surprised to find myself in .
TSH 5.3 [0.27-4.2]
fT4 21. [112-22]
fT3 3.6 [3.1-6.8]
(i'm 'surprised' because for many yrs i've had high end/ over-rage fT4 with low TSH but last few yrs my fT4 keeps going stupidly over range despite several dose reductions,,, and ,for whatever reason, my fT3 is also falling ,,,, it used to be around 40-60% )
re adding T3 ~ did you start T3 with (5mcg x 2) straight away ?
and if so did it give you any problems , or did you start with a smaller dose
I think I'm intending to add just 2.5 or 3mcg for a couple of wks, then if all ok go to 2 doses a day , and see how that feels for a few wks ..... haven't done it yet ~ still mulling over my options.
I started with 5mcg t3 twice a day 8hrs apart. It worked so well! Ive not changed that routine. I did increase my T3 to 5mcg three times a day but that was a mistake as I went over medicated. I did a blood test at that point so now I know what over T3 level feels like. It was over the level and TSH had gone suppressed. That feeling was sudden loss of energy and feeling very heavy. As soon as I reverted back to twice a day I was full of energy again. I just followed my private only endocrinologists directions and it all worked out well. I do split my T4 now also which feels better as there are no spikes. For some reason I can’t deal with spikes in thyroxine. I’m all still good with my levels. I just keep to my routine and watch my vitamins too. Next week I’ll be getting a whole host of blood tests and a b12 injection. I’ll see how that turns out and how I’m feeling.
I’d go for 5mcg twice a day 8hrs apart. You’ll know by 6 or 7 days how it’s effecting you. You can always pull back. You might be surprised how good you’ll feel. I certainly was in a very good way. T3 brings a smile to my face also like a mood drug too.
I know how that feels. T3 acts very quickly unlike T4. So you’ll know pretty soon which ever way you chose to administer the t3. I followed my private only endocrinologist advise. I take Thybon Henning and have tried other brands. I feel Thybon is the best for me.
Reading your post with interest & hope you get it resolved. I too am preparing to approach my GP with a query re adding a trial small dose of T3 just trying to work out the percentage so I can make my case.
Really interesting to see your changing pattern in bloods.
If it were me I’d try it and see. But you already decided that I think.
I’d also start slower/lower as DD suggested depending on the source of T3. Some are like rocket fuel and you feel all weird and hot which isn’t great at work when under pressure.
I have a suspicion that covid does a longer number on us thyroid is than others. I was diagnosed after covid and each bout (3 so far) has left me lower and lower taking around 12 weeks to feel close normal (but still a bit shit) again. I noticed a big uptick in antibodies and CRP and all that inflammation impacts.
I still haven’t asked the GP, just gone diy, I avoid all contact where possible. To be fair they do too. I must have ‘do not poke dragon’ on my notes. lol.
lol .... reckon i've probably got D.N.P.dragon on mine too.
yes , the slowlier the better methinks ..will probably sit and look at it for a week lol
I'll be off line next week, laptop is going in to I.T hospital to have a lobotomy .... and apparently there's man coming to do some phone line / cable /router muckaboutery
I just wanted to tag on and say I was so happy to read this, Tatty!
We joined the forum about the same time (I've had a few name changes for various reasons) and I'm so glad to see you're starting T3. Am v. excited for you.
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Thank-U Seabird 
New results help - trying to find correct dosage after overmedication
Do u all think i need t3? Will i be able to tolerate levo with a little t3?
t3 starting dose? 
