A bit embarrassed. I need advice on what has just happened. Where have I made the mess?

[arTistapple]

Last night I had to go to A&E because my heart was racing. Most unpleasant. I have experienced this before when I thought (or was told) it was down to anxiety. Long long time before diagnosis. Well yes I was certainly anxious because I do have a heart problem and experienced a heart attack twenty years ago and the speed was way out of control.

Anyway I have only been self medicating T3 for a week so I am thinking in all likelihood this is the problem. Local endo (without seeing me) told GP to triturate up levo. I did not go ahead with this for months as I could see I was not converting well and wondered what was the point. So I stuck with the 100 mcg of levo for months. However usual story, I was getting nowhere. All symptoms either getting no better or worse. Every medic wants to look for something else that is wrong, where my sense is that if we could get to grips with the hypothyroidism a lot of improvement is still possible.

I gave in and took the increase in thyroxine. 125 mcg. Within days I was pretty ill. I know I am very responsive to medication. So missed a day and dropped it to 112.5 mcg. Things settled. I had arranged a private endo appointment which was cancelled on the day. I was so disappointed - I was holding out for that. Was offered another appointment that I could not make. So it’s weeks again until next appointment. It’s no good asking someone with hypothyroidism to think on their feet - at least I can’t.

The blood test in preparation showed TSH 0.43. T3 5 and T4 well over shot about 27 I think. I am in bed recovering but those test results are in a previous posting.

Although I told them in A&E that I thought I might be taking more thyroid medication than I should (re: the carry on mentioned above) and that the private test had shown T4 well out of range GUESS WHAT? They only measured TSH 0.44. She said she would try to get further results but with TSH being ok she was not confident the lab would do the others (T4, T3 not even a mention). And frankly after 4 hours I just wanted to get home. Whilst I think this is neglect (and aware of my own faux pas in all this) it also makes no sense - an argument for another day.

Maybe I was greedy. I was feeling better on the increase to 112.5mcg but aware to achieve the level of T3 that was helping, it was at the cost of too much T4.

So in my despondency I took it upon myself to start self medicating T3.

I dropped back the levo to 100 mcg.

For about five days I took 3.13 mcg 1 x per day. Fab

Then took 6.25 mcg since (about another 4 days) Why? Greedy?

I have (for me) been able to cook for my grandchildren, do a bit of tidying up but the first thing bad I noticed especially, was my muscles (which are always terrible) got worse. I put it down to doing more (which I was very happy about) but seemed to become even weaker, felt my back was not being supported at all. Return to not being able to get out of a chair, even worse difficulty getting upstairs etc.

Where have I c..ked this up please? And what should I do now to get me out of this mess?

[SlowDragon Administrator]

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Previous post shows you were on 100mcg Aristo and 12.5mcg Wockhardt

Wockhardt is not lactose free

Are you lactose intolerant

Presumably T3 is self sourced……Tiromel?

This isn’t lactose free

[arTistapple in reply to SlowDragon]

MyD might still be a bit short. My ferritin still high. Pretty sure not lactose intolerant but stopped the 25/12.5mcg anyway the day before starting the T3. All tested approx four weeks ago for the endo appt that did not happen. UniPharma 25mcg T3. I have not taken any meds today in case it happens again. However I know I can’t just stop altogether. Should I start just with my 100 mcg tomorrow? Endo appt now set up for middle January.

[Regenallotment Ambassador]

You poor thing this sounds awful and frightening. Sending hugs. I’ve no idea what you should do but I see the cavalry have already arrived. Wishing you a speedy recovery, 🦋💚🦋

[tattybogle]

I have no experience with T3 use other than what read on here,, but i'd say you already know the answer ... went too fast .. and got too greedy. Don't be embarrassed though because frankly, which one of us hasn't made the same mistake at some point ?. Mistakes are how we know what we know .

I reckon if you noticed slight improvement on 112.5 mcg Levo then you should have just sat with it at that dose and given it a few months to settle in and see if those improvements continued and then re-assessed with bloods in spring .

same with the added T3 ... i reckon you should have stuck with 3 for a few months to see what happened ... 3 might have been all you needed.

[arTistapple in reply to tattybogle]

Yes don’t know what I was thinking other than I might have been a bit high - excited. The T3 was not a Eureka moment, it was more subtle but I could sense it. I was wondering because it was so quick a result whether it might be placebo. And I could not believe that 3.13 mcg of T3 could make that much difference! Apart from the physicals I felt ‘normal’, whatever that means because it has been sooo long. As the 112.5 mcg took me so out of range……. I don’t want to sound like I am making excuses, I am happy with your agreement about being greedy. Reflecting I should have left it at the 100 mcg (to stop overshooting on T4) and the tiny amount of T3. Unless you really think otherwise, I will go back to the 100 mcg tomorrow and add the 3.13 mcg T3 again the day after. Thank you for being frank, I do appreciate it.

[tattybogle in reply to arTistapple]

yes .. i think that's what i'd do re-try 100mcg +3 . and if the heart problem re-appears and doesn't settle after a few days then i'd perhaps then lower the levo by a smidge to 87.5mcg .

but TBH i don't really know . as i've never taken T3 and i've never had my heart go silly on me. Must be pretty scary... and 'scared and despondant' is rarely where we make our best choices.

i'm fairly confident about advice on tweaking levo, much less so for advice on T3 /silly heart beats. but i do reckon the mantra "adjust by less than you think , and then wait a lot longer than you want to" is always a good one to follow .

[arTistapple in reply to tattybogle]

That is very sound advice and as you said earlier “which one of us hasn’t made the same mistake at some point”. Before this incident I thought I agreed. Afterwards I know it! It’s a big difference. I feel like ‘it’s another one to them’ and not in a good way. There really ought to be a lot more understanding and the capability of two way conversations between medics and their thyroid patients. I was in front of a doc who was really trying but it just was not on her page. It’s not even that she did not want to be helpful. Situations like that could be dealt with much more ‘lightly’ if there was a better standard of care. Did I really need to attend A&E - yes the way it’s all set up. Where else is there to go? It does not fall into the category of ‘minor injuries’ and because of the physicalness of the symptom it’s not a mental issue. I see my ‘mistake’ being repeated right here quite often. We are desperate to get well and we are often willing to pay the price. It’s just that ‘wait and see’ is not necessarily the price we actually see must be paid. Unfortunately with hypothyroidism, I find, we are not always in the best state of mind to fend for ourselves and with a medical service, unable to comprehend this very issue, it’s more difficult than it needs to be. At those moments we need some back up and I have yet to come across any medic who can supply it. Another thing I did find out - very important - was that before diagnosis and afterwards almost until now, I was willing to let my life go, it was just too depressing and too painful, too hard. However somewhere along the road I realise now I don’t want to let it go. Recently some simple things about living have become available again to me. Fighting is hard but somewhere, somehow there are glints of light. With the forum I no longer feel alone. I know it’s all a bit too touchy feely but thank you for being here.

[tattybogle in reply to arTistapple]

Thanks xx

if they spoke to us with a bit more seriousness when we are diagnosed about the issues we can expect to experience with hypothyroidism, about how many systems of the body and mind need thyroid hormone to function properly , how tricky fine tuning doses can be , and how bloody rough mentally and physically we might feel when it's not right , rather than making out that it's such an inconsequential issue that just means we might 'feel a bit tired' .. we wouldn't end up in these situations where we find ourselves in A&E purely as a result of trying to help ourselves function well enough to manage , when we have been left feeling that if WE don't do something about it for ourselves , nobody else will, and we're watching our life disappearing down the pan without any fight left in us .

i know a lot of my impatience and sometimes daft decisions in the past re. Levo dose changes has come directly from thinking that they didn't believe how bloody hard it was to function. and having the whole thing constantly belittled... if i'd had it explained to me by a genuinely concerned GP at diagnosis that thyroid hormones were very very important for everything and could be tricky to adjust correctly .. and needed to be done very carefully and how long i could expect it to take for a new dose to improve how i felt .. then i reckon i'd have been a damn sight more cautious and patient.

if it makes you feel less daft for going a bit too fast and crashing into the barriers .. i put my own dose up from 50 straight to 100 then 150 then 175 ish after i was diagnosed .. sending my fT4 up to 36 [13-26] GP sent me a letter saying "do not take more than 150" and when he later suggested i try 125mcg, i only tried it for 2 weeks before adamantly refusing to try it any longer because it was 'definitely too low' . I would have done it with much more caution and patience now i know 'how much i didn't know then' . So it's not just you.

I was more than willing to just let my life go a few yrs ago too , but now i quite like it again .. in fact this last year i even enjoyed it.

[arTistapple in reply to tattybogle]

On reading this today I cried for both of us and probably for all of us. Your thoughts align with my own. You are so right about our first proper introduction to our illness. Although we have been through shit before diagnosis, it’s nothing compared to what comes after. No information and lies and even subject to ridicule. (Ref: again the recent spat on Twitter between a patient and the BTA). It’s inhumane. I was able to watch this scenario at A&E with a bit of distance due to everything I had learned from the forum. Everyone’s experience. Everyone who has contributed to the forum that I have managed to read. I was there in A&E for myself but because I was more knowledgable, I saw what was going on so differently from usual. I was not expecting anything other than for them to save my life. I mean that in the best undramatic way. And there is the core of it. That’s what medics do. It’s the hero bit. It’s not the touchy feely stuff and until having hypothyroidism I always, entirely mistakenly, thought that was available through our medical system. It just is not there as a routine thing. Luckily some patients will experience this with decent GPs perhaps but I think that is exception that proves the rule. That’s why both we and the medics don’t understand what is going on dealing with us. Unless it’s myxoedema coma or a heart attack etc, it’s NOT going to be heroic. It’s not saving a life. It’s a quality of life issue and is it appears that’s not what they signed up for. I was dealt with properly, appropriately, when lives were to be saved. Other people’s lives. The corridors were full of patients on trolleys, although ambulances were able to relatively quickly drop people off. This was the night of the day of the nurses strike. No queues of ambulances. How small my problem must have seemed to the medics when they had tens of people on trolleys to attend to. No, the NHS is not that helpful for us. I would say they have no comprehension at all about the fact they are keeping us sick and they have no comprehension that helping us get well would/could improve things, even within the NHS itself, never mind the wider community. Again bringing us back to the forum. It is where our help is. Unfortunately sometimes we need immediate mental and/or physical support. Luckily, mostly that is not necessary but it is no criticism of the forum that it cannot be there at just that moment. It’s the nature of the set up. Where would we be without it?

[TiggerMe Ambassador in reply to arTistapple]

Wow. I feel bad for encouraging you 😟!

Sounds like a very sharp learning curve, maybe a great discovery... I do know what you mean about the sudden feel of normality when T3 kicks in but you have to remember it is fast acting, strong stuff and wears off within 6-8 hours as opposed to T4 which is a lingerer, why on earth they would get you to increase your T4 when you were already over the range is anyone's guess 🤯

Did you split the T3 am/pm when you added the extra bit?

I found T3 not only speeds things up a little but makes for a stronger more positive heartbeat which feels weird as we have become used to our weak/ slippery pulse as the chinese call it...

"a patient has a slower pulse (rate) that I feel at a deep level (depth) and it is slippery (quality). This indicates a condition of interior cold with dampness in the body, suggesting a deficiency "

100 T4 and 3.13 T3 and let things settle, that conga around the tree will have to wait a couple of days 🤗🤗could just be you have found your happy place 🙏

[arTistapple in reply to TiggerMe]

No Eeyore100. I can’t talk any more today but I have received nothing but support from you. Thank you.

[arTistapple in reply to TiggerMe]

That is a very interesting quote and observation about the strength of the pulse. The NHS medics only pay attention to the pulse when it is either very high or very low. The Chinese have a long history of their observations and application of their medicine. We could certainly use some of that knowledge in our system. I did bring rate of pulse up with the doc. By that time the pulse had reduced to 80 odd and considerably less pounding. In fact I was asked if I had been sporty when young, as it was a very healthy ecg. This I found a bit of a (can’t think of the word) as I have previously had a heart attack which I know shows up on ecgs. This was therefore a wee bit of a white lie, no doubt to give me some confidence but I am a wee bit long in the tooth for that. In saying that my heart had a very good workout and I think I take a wee bit of comfort in the fact that I did indeed survive the incident….. fingers crossed! Eeyore100 I find we are all trying to do our best on the forum, sometimes from a very low or dark place. I for one appreciate everyone who posts. We are all trying to help in the only way we know how!

[radd]

arTistapple,

Your previous labs that were taken on an unstable dose between 100/112.5/125mcg Levo show you to be overmedicated on Levo (as in you need less FT4 but higher FT3) and I agree you might benefit from the addition of a little T3 meds. 

 TSH 0.43. FT4 24.6 (12-22) 126%. FT3 5 (3.1-6.8) 51.35%

Because FT4 naturally drops for many when we introduce T3 meds people make the incorrect assumption to get FT4 levels as high as possible in preparation. However, because we are introducing T3 meds we don’t require such high FT4 levels and the suggestions for preparation are usually to reduce Levo dose unless FT4 levels are already low which yours aren't.  

You should not have introduced T3 meds until Levo dose was completely stabilised as it is now difficult to assess how much Levo reduction you need to address not only the over-range result but also the addition of T3. Therefore, if this were me I would reduce Levothyroxine dose to no higher than 75 or 87.5mcg , taking into account your inability to convert Levo and that after introducing T3 you want to be able to raise to perhaps 5mcg or even 10mcg over several weeks without the need to start reducing Levo again. Most hormones strive on stability/consistency even in circadian patterns or cycles (except stress hormones of course) and you can not keep changing or missing thyroid hormone doses, and especially do not want to be changing both T4 & T3 doses at the same time. 

After reducing Levo to 75-87.5mcg, I would introduce 2.5mcg T3 and if I felt ok, after two weeks raise another 2.5mcg . Hold this dose for a total of six weeks and perform thyroid testing to see where levels lie. Many only require thyroid hormone half to three quarters of the way through range and symptoms will often lag behind good biochemistry. It can be difficult to assess where our sweet spot is when still symptomatic but if you exceed your sweet spot thyroid hormones can become counter productive working against us and inducing even further hypo symptoms as you have found out with your over-range FT4 levels. 

Low and slow is the way to go …… especially after your previous med dose changes and hospital admission. Also remember no thyroid hormones will work effectively without adequate iron and nutrients. Good luck😊

[arTistapple in reply to radd]

Radd just to let you know I have received your answer. I am a bit done in just at the moment. I will reply to you tomorrow. I will give your post a thorough read tomorrow. Thank you so much.

[arTistapple in reply to radd]

radd this is a very full reply and frankly I think I really need to study it much more closely than my brain is allowing right at this moment. Thank you so much for thinking this out for me. There is so much in it. I should have guessed it would not be as simple a solution as I was hoping for. I really need more understanding and you are providing it. Whether I can take it in wholly at the moment, not sure but I will be on it. It’s been a horrible episode and I think it’s great that there was a good reason for it, not something out of the blue! I will answer your post yet again when I think I know what it all means.

[Hidden]

I’m so sorry you experienced this. In my case, racing heart is when I either raise my t3-containing meds too high fast and/or because of my adrenals being unsupported. If I were in your position I’d drop the dose back down to 3. 13 and remain there for much longer before going up. If still palps then I’d tested cortisol through saliva x

[arTistapple in reply to Hidden]

I may have panicked a bit due to previously having had a heart attack but the suddenness of the onset caught me by surprise. My last bit of T3 was at least 16 hours before onset. I thought I was ‘safe’. I thought T3 shelf life was too short for that to have happened. However I certainly did not take into enough account of my T4 situation - so many mistakes and misadventures around my recent behaviour and timing with that. I have to think a bit more about all the good info I have had posted to me. I have looked at adrenals but honestly the whole thing is a mystery to me still. I got what I thought was a good book and it seemed informative and then I began to notice and checked - the author made no reference to thyroid at all, not anywhere in the book. I admit I lost interest at that point but I have not ruled it out. But thank you so much for your experience and knowledge and passing it on to me. I have to work it all out now. At the moment I am a bit envious of the 80% who are apparently satisfied with their treatment!

[TiggerMe Ambassador in reply to arTistapple]

I think as a rough guide T3 has a half life of 6-8 hours which suggests the other half is lurking in your system for ??

[arTistapple in reply to TiggerMe]

Mmmmm. I honestly think I c..cked up with the T4 issues before even using the T3. So really I mucked up both. I am not half as clever as I wish for.

[TiggerMe Ambassador in reply to arTistapple]

History is full of triumphant, accidental scientific breakthroughs! Then they write a whole lot of words to qualify their happy accident/ breakthrough, and make it sound like they knew what they were doing!! 😱🤣 Then spend the rest of their careers trying to work out why!

Carry on being a kitchen scientist 🤗 we are after all unique little chemical combo's

[tattybogle in reply to arTistapple]

i'm prepared to bet that 50% of those are only satisfied because they have been re-assured their thyroid is fixed now and their 'other' problems are 'somethingelse'.

after all i more or less believed it for over a decade and thought i'd got (coincidental) CFS/ME as well , or was just a pretty useless example of a human being.

[Hidden in reply to arTistapple]

I don’t think 80% is remotely accurate… I think it’s much lower. The palps don’t happen to me after the T3 peaks, they can happen at any time during a raise (usually on day 9 or so) I think it’s to do with something that happens between T4 and T3. I understand you’re very shaken, I’m so sorry, it’s horrible. I’d go back to the 3mcg dose and then raise again in 2 weeks or so. If palps persist when you raise again then I’d look at adrenals. Weak adrenals often results when someone has been forced to exist on T4 meds only for a long time or not been diagnosed soon enough. Hope you feel better soon xx

[arTistapple in reply to Hidden]

I agree that 80% is wildly high too. Believe me I am having a complete rethink because I have no wish to repeat of those rapid heartbeats. I will be taking it carefully. It brings to mind those jackass medics who think we are ‘junkies’ for wanting a better standard of care. No-one would voluntarily or knowingly put themselves through that sort of overdose.

I definitely fit the “not been diagnosed soon enough”.

[arTistapple]

I just watched someone the other day who is very happy with her treatment, blow it with her ‘executive functioning’. It made me cringe on her behalf. People were either shocked or thought it was funny. She clearly was having difficulty and unable to shake it off as a joke. I wanted to tell her what it was but then I would have been undermining her confidence in her treatment and I just could not do it.

Yes what I call the ‘get out clause’ CFS/ME and no disrespect to anyone thinking that is their problem. There is a Star Trek quote that covers it, something about many stars out there unknown etc. I got that from that doc at A&E, you have reminded me. My muscle stuff could be ‘something else’. I just lose a bit of will to communicate when they don’t seem to know enough about hypothyroidism that weak muscles and painful muscles are much more likely to be due to that rather than anything else! If it walks like a duck ……. and I do sometimes.

[arTistapple]

Just been through my original posts about trying to move along. I can see more clearly now the excellent original advice from SeasideSusie . I think I did not/was not able to fully take on board her advice. I was still to some degree trying to respect medics advice. Her advice, if I had taken it, I might not have landed in this mess. Unfortunately I have now set myself back a bit. Less than four weeks now until my private endo appt and my bloods are likely to still be unstable!! Aargh! Much as I have reason to respect the endo, I will now be keeping SeasideSusie advice very high in my mind. Thank you everyone who has helped me out of the mess of my own making. I seem to have accrued quite a few over the months.