I either need to increase my Levo after being ‘dumped’ by an endo who appeared to me, was going to treat me with T3. OR I need to introduce T3 myself.
My question is if I was going to try to shortcut this and get onto to T3, what level of T3 would ‘replace’ the ‘lost’ Levo?
I initially dropped Levo from 100 mcg to 75mcg in preparation and when I got the news of no treatment, I re-increased it to 81.25mcg. It’s not working for me.
The decision is mine. I am not asking anyone to take responsibility for what I do. I just need an idea of how much T3 could initially either fill that gap or at least be a starting point to get there.
Thank you in advance for doing my thinking for me!
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Its not possible to say how much T3 will fill the T4 gap. Its all very individual depending on absorption and how your body uses the hormones. Besides, noone goes onto their final dose right away, best to work up slowly in maximum 5mcg dose increments.
I'm assuming that vitamins have been checked fairly recently and all are optimal.
Thanks for replying. I was about to retest but I am honestly wondering “Why bother?” Six weeks only ago, due to jumping through hoops for this endo prescription, my T4 dropped to 17.6 (12-22) I wanted it to drop because it was previously running at 21.9 I think. Too high for too long and symptoms were gradually worsening. My T3 is now 3.3 (3.1-6.8). That tiny drop has worsened the tachycardias whilst at the same time my resting heart rate is a max of 55 whilst awake and I am sure it’s lower than that during sleep, which is bringing on the tachycardias. TSH increased sharply to 5.19. My Vits etc all looked good. My diabetic markers have improved.
However!?!
Tachycardias and coronary spasm are happening more often. Just going back to the previous regime is not making much sense to me. It seems courage is required from myself but … I have managed to cock things up a few times attempting T3.
I feel under pressure to make a move myself (symptoms are bad) but fear from before is with me, as well as fear from this time.
It’s quite clear any and all support from medics is entirely absent. It’s ridiculous in our civilised society we can’t get the treatment and confidence from our medics.
Pretty much a place many of us feel rather too often.
It looks like you've decided to delay this decision. Perhaps you should keep a few notes on your current symptoms so you know what to expect once you do add T3 and now what symptoms might be coming from where?
Teva is the only brand making 12.5mcgs at the moment. You could try that or cut a 25mcg tablet in 2 and take every other day.
I think last time you added T3 you didnt drop Levo? Next time adding T3 be sure FT4 is around 80% or less.
Thanks Jaydee. I feel better just having made the decision - even though it’s not the final decision. I just wish it did not have to be so blooming stressful. It’s so unnecessary.
Noted your advice. Yes I went in all guns blazing when I attempted T3 first time. I was thinking ‘magic bullet’, I admit it. I know so much more now and I hope it stands me in good stead for my future attempt at T3!
I now realise how nervous doctors are around ‘heart’ patients. It’s obviously at pretty much the top of their agenda. However often their ignorance makes them blind. It’s a great pity they are not truly thinking thyroid issues, when heart symptoms are in evidence.
Endocrinology is so disrespected it seems to me but most especially by doctors. Heart patients are not even being given a bite of the cherry it to benefit fully from TH treatment. If only they could take hypothyroidism truly seriously, it has the potential to solve so many problems for them as well as us!
I was feeling pretty vulnerable today. Your quick reply (what the hell were you doing at that time of night?) helped enormously.
(what the hell were you doing at that time of night?) 😂
That was unusual for me but I do need to get myself back on my no processed foods diet! The difference in me when I eat right is unbelievable but I struggle to stick to eating well recently.
I am a member of that club too Jaydee. I must admit this little scenario I have been involved in has had the biggest effect on disciplining myself re: food. I don’t recommend anyone to go this far to test how bloody awful one can indeed feel.
If you add in a little T3 it is likely to push your fT4 a little lower, when you last added T3 what was your T4 dose? I thought 100mcg was best for you and only went too high when you tried 106.25mcg?
I seem to remember 2.5mcg T3 was comfortable for you last time so I'd start there
Thanks TiggerMe. I have had a very bad day yesterday followed by another bad night. I have come to the conclusion (new post just added) to try another 6.25mcgs Levo until I get this ‘appeal’ done. This means trying to get some 12.5mcgs prescribed.
Without 12.5mcg, this is creating lots of problems of its own, splitting the Levo tablets which are so crumbly and messing up dosing.
I need steadying at the moment and restarting T3 seems too risky right now. I just don’t think this major decision should be made under the circumstances I feel under.
However when I feel better I agree with your suggestion wholeheartedly.
🤗 I just feel that better is only going to be achieved by raising your fT3, have they actually started manufacturing 12.5mcg?? Why are you avoiding going back to 100mcg?
I just fear they are going to keep you suffering and not be much use to you ☹️
I'm more inclined to say treat yourself and find wellness to then continue your fight
I am not avoiding 100mcg, I just know i needed a ‘ramp’ to get me back there.
I have now hit the buffers with the NHS. The endo’s suggestion at the consultation did seem ‘radical’. Honestly I am getting a little suspicious of the why behind that. I was keen to put myself in his hands (his research paper described my heart symptoms almost to perfection) but I live in one of the NO T3 hotspots of the UK. Was I being set up to fail, one way or another? Seems a bit far fetched perhaps but lots of thyroid skullduggery originates from this area. Why would he jeopardise his own research for anything political? I think I know the answer to that, so no need to comment.
He seemed so content to prescribe T3 at the consultation (although there are no T3 prescriptions recorded in this area) possibly knowing even then there was no chance of that happening.
I would love to be wrong, hence my appeal.
It’s ironic to me that they could not diagnose hypothyroidism (or indeed anything they could do anything about) 25 + years ago and now they still can’t prescribe TH to help what their lack of knowledge failed me back then. Now it’s ‘too late’ to prescribe the very thing to help (IMO plus the opinion of the research) because my situation is basically beyond TH help - in their opinion.
What a bloody mess but as usual it’s the patients picking up the pieces.
I would take heart that the Heart Chap knew you needed T3 so has given you the green light to add even if the ridiculous politics in your area are so against it, do you still have some T3 in stock?
Yes I do have it and it’s still well within date. Yes he knows I am the perfect candidate, I am sure. I am literally offering myself as a case study to confirm his own research. However still a mountain to climb.
I know I am ‘crapping out’ but I still feel I have a major point to make before taking it entirely in my own hands. I know I am both cowardly and over trusting in the ‘system but I am getting there - if this does not kill me first!
I am also going to do a coaching session with Paul Robinson. I feel I will get my a..e into gear better now having made this ‘delaying’ decision.
Probably a total waste of time if you asked, but is there any chance you could get them to prescribe liquid levo for you? It would at least give you accurate T4 dosing without getting confused splitting tablets.
I have been a human pin-cushion the past few years with vaccinations due to becoming an official pensioner, and even waiting 4 weeks and more after having had one, may be the reason my blood results started getting rather stranger than usual. I expect that you likely will be getting a flu and covid vaccination when Winter approaches. If you are adding in T3 or changing your T4 dose, it would be best not to end up doing either at the same time as a future vaccination. This may upset your readings too much, and something you should maybe bear in mind?
Tossing up the idea of vaccinations again right now. Every blooming year and it just comes round and round. The same decisions/negotiations with self (a very hypo thing I have found) procrastinations! That alone is exhausting.
As to the liquid, I will keep that in mind. ‘It’ might settle but that’s good advice. Thank you.
Why are you so afraid of T3 when you clearly need it? .
It is no more dangerous than many medications commonly used so long as it is used with understanding.
I once said this to a medic who just quietly smiled and nodded
Most medics don't understand T3 which is madness, it is an essential hormone which if deficient can in extremis, be life threatening.
Without T3 I would likely be dead now....and that is on a high dose!
We are all different yet medics try to treat us with the same protocol....like machines. Not like the widely differening beings with widely differing needs that we humans are!
The late Dr John Lowe a T3 expert took up to 175mcg T3 daily for decades....that would kill some people!!.
The folowing should be of interest and may give you confidence
If our body needs T3 then we need to add it, and the dose we take depends not on lab results or spurious theories but on what our body needs to function.....be that a tiny dose or a supraphysiological one!
I knew I had to take a leap of face and titrate T3....I turned out to be at the more extreme end of need.
You may need only a tiny amount but you won't know unless you try
Maybe try going back to 75mcg T4 and start very slowly adding T3 in 1.25 mcg doses...depending on tablet size that may. initially be just a few crumbs gathered on a moist finger tip, but it will slowly introduce T3 which you can increase to 2.5mcg after 2 weeks. It won't be a smooth journey but you need to ride it out. You can continue to slowly increase by 2.5mcg 2 weeks until you begin to improve
Sadly there is no quick fix, it took me well over a year to reach a therapeutic dose but I'm an extreme case with a form of Thyroid Hormone Resistance....it may take you only a few months, weeks even!
This is only a suggestion based on personal experience but you need to start somewhere and procrastinating is only increasing your misery. Clearly the advice you are being given isn't working...time for a change?
Only you can decide what you put in your body.....but listen to your body and try to understand what it's asking for.
I agree with TiggerMe ....
I'm more inclined to say treat yourself and find wellness to then continue your fight
Dippy I do understand what you are saying. It’s some undertow of fear not just of T3. It’s something about the utter helplessness from sources I was led to believe were going to be helpful in my life. I was born pretty much at the beginning of the NHS. Where I was brought up, it was God and untouchable. Unfortunately I have had quite a few ‘scrapes’ with the NHS but I still find it difficult to shake off this business of holding two opposing views at the same time. I know there is a proper word for that but I can’t recall it.
I do feel a bit ridiculous with my stance and I do want to progress. It’s a case of dotting all my 👁️s and crossing all my tees.
But believe it or not I shuffle closer all the time. I just want to know I understand as many issues as possible - because if ……
I'm 79 and have watched the NHS in all it's guises....until it is now broken and I've pretty much lost confidence in it's ability to perform as it once did.
As for treating hypothyroidism....a lost cause! Just check the posts here, and they are most likely a drop in the ocean of suffering.
I think we've tried to help you dot and cross the relevant letters ....and to understand
Sometimes we just need to break free from the shackles of the past and take a courageous step forward into a better place. Wandering in circles over old ground won't achieve that I'm afraid
So, you have two choices as I see it....you go forward on the same old bumpy route or you turn onto a new road and have an adventure that could take you to a better place
I did it....so it's not impossible!
Sorry if I sound like an old bossy boots....but sometimes we just need a nudge with the toe of someone elses boot!!
A number of years ago a very experienced and much trusted member here gave me that nudge forward which I will always be grateful for.
Her words were straightforward...." If you don't try, you will never know".
The MHRA (Medicines and Healthcare products Regulatory Agency ) or its predecessors started keeping records of side effects from prescribed drugs (and a few supplements too) back in 1967. The ability to record side effects wasn't used much until the NHS decided that computers were useful, so early data is very sparse.
Between 1967 and this year there were ZERO deaths from taking T3 recorded in the MHRA side effects database. There were only about 23 deaths blamed on Levo in the same time period.
T3 simply isn't dangerous in the types of doses the average patient is very likely to take it.
The fear stems from the idiot 'professionals' we have to deal with who spread nonsense as they have a very poor understanding of what T3 actually does and just how important it is 😳
Yes. I am getting this from two departments now. Getting ‘panic’ from cardiology - pure gaslighting and complete ‘no confidence’ in their own knowledge endos. I don’t want to say even on here, what I am putting into my ‘appeal’ in case anyone is reading this who might actually recognise me (yourself excluded of course). Malaise from mucking about with my doses etc etc. Other stresses too. It’s an f…ing nightmare.
No and I can do that myself as per your other suggestion. The 2.5mcg thingy. I am concerned about my ‘degree’ of lying. My conscience is a pain in the butt. If getting them to prescribe it is a success, I have other plans in the back of my mind. In the meantime trying to shake off this defeatism. I am not defeated but it’s always too close.
I know there are other pathways. Very important. You guys are great.
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3 miscarriages, TSH levels all over the place, doctor doesn't have a clue. Please help - so fed up now.
Annoyed😡
T4. Reasons for needing it.
TSH levels all over the place.
Thyroid Bloods All over the Place
