TO UPDATE, I HAVE BEEN IN TOUCH WITH AN ENDO FROM THE LIST AND AS MY ENDO ALREADY PRESCRIBES T3 ONLY THERAPY FOR ME (long story) HE MADE IT CLEAR THAT I WAS ALREADY GETTING THE BEST I PROBABLY COULD OUT OF AN NHS GP. SO NO NEED TO PAY PRIVATELY. Depressing to know no more nuanced help from anyone, but I was grateful for his honesty and clarity.
as previously discussed I am on t3 only and my tsh has gone from suppressed 0.01 to 7.86 over the last few years. After the most recent result I have tried to raise my T3 only dose from 55mcg split over 3 doses to 60mcg. But after a couple of days my heart started to feel odd (I have ME and this is a symptom of my ME so really hard to differentiate cause and effect but I do go into atrial fibrilliation every few months too).
Feeling concerned that I was about to go A fib I stopped all T3 doses to let things settle.
Now this has happened before, when i used to be on t4/t3 therapy years ago before I went t3 only a new GP slashed all my meds and took away my T3, and I experienced what I experienced yesterday. There is this point after a sudden reduction where my energy improves and some of my ME symptoms retreat. But it doesn’t last for long and if I don’t remediate everything spirals downwards significantly (brain fog, thumping loud heart, become very slow) and when I do remediate even at a lower dose the ME symptoms just re emerge.
The ME remerges whatever I do, but I find it curious that there is this 12 hour period where in free fall I hit the sweet spot I can never find at any other time. Does anyone else have this experience or recognise this feeling and if so what do you think the mechanism is, what is going on?
I am waiting for a new panel of blood tests with vitamins etc, but am considering consulting a private doctor from the thyroid UK list. I don’t suppose they will be any more knowledgable or helpful than my NHS endo (bearing in mind he prescribes me t3 only and gives me blood tests when I ask) because I am more complicated than someone who thinks they are hypo when their tsh is not ‘demonstrating the fact’.
I wondered if anyone had any experiences with any of the listed private doctors, GP a or endo that was more than simply being allowed to try t4 or t3 or NDT, but someone who unpicked a slightly more complex scenario as I have going on? Please would you PM me anything you would like to share if that is the case? Thank you
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Yes many people have reported this effect and depending on medication the duration of effect can vary - T3 has a short half life of about a day and T4 a considerably longer half life of 6-7 days. Some people on T4 or combo get an extended effect before crashing but the accounts I have read have suggested it is not something they would recommend.
The fact your TSH has risen while on the same dose of T3 is surprising, but as you say there is other stuff going on. Hopefully someone more knowledgeable than I may be able to shed some light on what is going on.
Thank you, yes it has definitely surprised me and baffles me, but we’ll see what my other bloods are doing. I just wish I could find a knowledgeable doctor worth paying big bucks to. I know when I worked with and experienced ME nutritionist for a couple of years it was so lovely to hand all responsibility over to someone with more experience and knowledge than me after battling for years to make progress alone.
“I just wish I could find a knowledgable doctor worth paying the big bucks to”. Sulamaye that is absolutely spot on. I like your description very much of your experience with the up/down/sweet spot/no sweet spot found by no deliberation. It’s so familiar. It’s so frustrating. Where could we find such a driven type of doctoring to get to the bottom of this for us? Does such a being exist? When we see our eminent endocrinologists dragging their feet even to entertain some of the best research undertaken and not even collecting the basic information, it will take a very special individual to overcome everything lacking. I am so looking forward to diogenes book coming out. That guy was prepared to ‘look’. His like is very unusual. I am very interested in your observations.
Yes exactly. I found Paul Robinson’s help in setting up CT3 treatment very helpful, but it did cure my ME, but was the most effective approach I could get for my hypothyroidism with ME. I wonder whether now that I have done so much healing in addressing various areas of my ME - killing pathogens, remediating the house for mould, raising my cortisol, nutrition etc - whether all of this requires some different approach for the hypothyroidism. I just don’t know what it is, everytime I have tried reintroducing T4 in any form I get a kick back.
I am just in the process of reading Paul Robinsons books (all of them) right now. It’s not exactly easy reading but I think I am understanding. Dr. Myhill too. She is tough and I am trying to respond to her too. I find it difficult to entirely come to terms with her guidance, she says she does not do business (my words not hers) with people who won’t address diet, I am certainly working on it. This is very difficult even although I have been very aware of diet. It’s not like I am a complete novice. Between her and SlowDragon I have been becoming more and more GF and although not ‘there’ yet, I admit I feel distinctly better on many levels.
I think diogenes announced the ebooks existence about a year ago. (Timelines are not my forte) I hope someone in Thyroid Uk is keeping tabs on its publishing date. I think there will be lots of interest.
As for what your main post is about p, frankly I just don’t have the experience or knowledge to help but as I say I am very interested in your issues and where they cross with mine.
Love the fine tuning idea eeyore1957 has brought up similar. Maybe for most people it would be of very little interest but I too am interested.
I know that is your view and not only am I grateful for this incredible piece of info, I have no problem with what you say. It’s getting there that is the issue. Organisation is not my forte and this requires organisation. There is a behavioural thing too that kicks in, which is proving useful in my Pavlov’s dog reaction. If I eat gluten I now recognise the difference in how I feel, I feel much better on days when I manage complete GF. Getting there. Thank you again for the excellent advice.
I did go ketogenic and gluten free for several years it is very challenging when you live as part of a family and I have completely switched my thinking and now am more interested in the gut microbiome and the work that Zoe does in promoting science proven excellent nutrition. They do podcasts which address lots of stuff, the biggest problem with keto is the limitation of plants and yet what we now know is the the larger the range of plant based foods in your diet and fermented foods the more diverse your gut microbiome and the more diverse your gut microbiome the more the body is supported in being healthy from the enzymes and chemical reactions different gut bacteria initiate.
I have a load of emails saved on Zoe. I need to get time to read them. Something else I found useful that someone put up on the Forum info from an Ozzie doctor. Unfortunately I can’t find it again because I wanted to try out more of their observations. Drinking lots of fluid does not help constipation! Well I have been thinking that it does for years. There are lots of ‘systems’ out there saying drink more water. Well it may not work for everyone but drinking less is definitely helping me. I feel like my micro biome is benefiting greatly from just drinking less water (and I always filter it) too. It’s so odd but ….. there you go. Washing it away with too much fluid?
I listen to the Zoe podcasts as the easiest way to keep up, but as I am sure you are aware adding in 30 or more plant based foods from herbs to whole grains and not eating ultra processed foods are considered the most beneficial foundations to good health.
Yes that’s what I aim for but it’s a generalisation. I don’t calculate it. Excuse my ignorance but the 30 based plant foods - in one day? Over a week? Or again is this what you must integrate into your diet over all? Or just during the experimental period? Sorry I could go and find the answer for myself!!
Reread your initial post. Just querying. Do you have a diagnosis of Atrial Fibrillation? I have an odd heart condition (IMHO purely due to hypothyroidism). It has symptoms which sometimes feels like AF but then I get other symptoms too, which definitely don’t fit. Mostly no rhyme or reason (other than exercise which I have had to put on hold for a bit, otherwise I can’t get anything else done - like good food) but hypo I have found is definitely the Great Pretender. I have an appointment soon with cardiology to get an update on this condition because I am a poor converter and I need T3. I have had it for about 25 years and experienced a heart attack about twenty years ago. I won’t say any more here but just wondered if you had an official diagnosis of AF.
30 plants a week minimum, but daily would be good. I also make my own sauerkraut and fermented ginger beer (instead of kombucha) and have kefir daily too.
Yes I have a fib diagnosed too. Heart problems started with my ME, loud heart, staggered beats at times, other known hypo symptoms and POTs so tachycardia when standing too long, often found in ME, but you know Afib when you get it if you know what it is. It is like a badly coordinated horses galloping through your chest. My heart goes up to 180 -200 bpm and it is banging away in the most disjointed and irregular way, sometimes even the ecg can't identify the bpm they are so out of kilter. The first time it went on for 4 days until the hospital administered some IV meds, but since then I have come close to having electric shock on chest to stabilise but thankfully it has flipped back into sinus at the last minute. No doubt frightened. I have found that I can feel it start to warn me, just slow but short stabs of irregular beat and I find if I stop my t3 in time and let things settle it can ward it off, but I have also had episodes when t3 not very high dose, maybe 50 rather than 60 mcg split into 3 doses and when my tsh is high and the myth is from endo that it is more likely in tsh suppressed t3 treatment.
If your heart races on standing or when been standing for a bit or just randomly goes high then cycles down again you may find you have POTs.
Oh dear it’s like all things hypo. Never quite cleanly cut one way or the other. My husband has AFib but there are apparently a good number of ‘types’. He was unaware that he had it, although he wondered a couple of times if he was suffering from anxiety. He is the most laid back person I know. He passed out a few times and he was unaware of that too! He is huge and I had to catch him. Scary. He has been fine on his meds now for years so fingers crossed. My situation is a lot less clear - especially to medics it seems. One gave a diagnosis (not hypo then Ha! But now) and every other medic turns up their nose because they haven’t heard of it! My thyroid symptoms are also greeted with a sense of disbelief, like so many of us. Yours sounds even more entangled than mine. Hypo seems to be whole bunch of symptoms (often encompassing ME etc) but Low T3 does seem to cover all that. Or does it?
If they won’t even listen to us how can we move on?
I am going to read the rest of your replies, you seem to have a good few now.
I also want to supply you with a well recommended endo, (I have not yet consulted but a number of forumites have separately endorsed him) who seems to be much more interested and sharp and much more knowledgable than any other I have come across so far. I am keeping him in my back pocket for when I have seen the cardiologist for an update. Check your PMs.
Thank you I will check out my PMs. I eventually got an atypical POTs diagnosis after a table tilt assessment. I have to say I was diagnosed hypothyroid for nearly 20 years before I experienced any of these problems and my ME started post my third major abdominal surgery, and after some very heavy duty and prolonged antibiotics both IV and oral due to repeated infections, operations and septaecemia.
My hypo symptoms used to be putting weight on, dry skin and hair falling out. Relatively straight forward. If only...
Hi there, I can't offer much help, but I definitely recognise the 'sweet spot' you mention. I guess it makes sense if we each have our own 'ideal' ft4/ft3/tsh/reverse t3 balance point, when our cells our adequately supplied, and there's sufficient in the bloodstream to supply more. With a functioning thyroid, pituitary etc that balance would be constantly monitored and adjusted. Meanwhile, here we are trying to find that balance point by dosing once or twice a day! Maybe, one day, when the thyroid is fully understood we'll have a diabetes-type monitor which constantly measures and adjusts dosage perfectly!.... The more I read, the more complex it seems to be. Sorry I can't offer practical help x
This is what my consultant says, there is a reason for it, at first he diagnosed me with cfs, but he wrote, low t3 syndrome. So yeah, it was and is all thyroid for me.
I wouldn't be stopping all your meds at tsh of 7 and with feeling exhausted. Your body is rebalancing so you are experiencing moments of feeling well, soon to be followed by feelings of being even more hypo. I've been there, done that. It doesn't mean that there was a sweet spot somewhere after reduction, your DIO conversions are changing, protecting also the plasma t3. This is very complex.Your heart may feel weird when increasing t3 with such tsh.
You could also potentially have another issue like low cortisol, your tsh would climb as your meds wouldn't be properly utilised by cells. That would also make it harder to tolerate thyroid meds.
Thanks don’t worry I didn’t stop full stop, i just knew I needed to stop the build up of t3 before my heart went into atrial fibrillation which I have expereince of and is dangerous and I don’t want to be shocked back into sinus rhythm.
my cortisol is the best it has been in over 9 years, all optimal, so it isn’t that.
But yes I wish i knew how to fine tune what is going on. I can’t increase T3 for the reasons above, cortisol is not a problem, yet my tsh is going up. This is a condundrum.
I understand and you do know your symptoms more than anybody on here or any doctor.If cortisol is good, then something is interfering greatly. I do wonder what the level of t3 is.
I unfortunately don't know any doctor who is that thorough 😞
I think at some point in my past pathogens and mould interfered with my body’s ability to function, and perhaps it is that still, but it seems strange that as my ME symptoms have improved overall (eg many have been reduced or are even gone after addressing pathogens) my tsh has been doing something that indicates a problem. The body is so complex and the western medical model so limiting…
Yes 😀 he's one of the good doctors, we have this saying in Poland "nothing is lost in nature", meaning, there is always a reason as to why something happens. Yes I'm chronically fatigued, yes, my cells are not producing ATP energy. Why? Well not enough t3. Why? Etc etc 😀
I think this is the key problem with how ME has been described in the press etc and the very reason so many of us in the ME community absolutely loathe the term CFS because this is not the root of ME it is one symptom and one symptoms alone and has been for me, once I got past the complete inability to move which was nothing like fatigue, the least of my worries. I started with about 20 symptoms and I do get very fed up of having to defend the diagnosis of ME in a thyroid forum because when your life has been stolen from you and you have worked your way through every possible thyroid treatment, plus many many other approaches to supporting the body in healing and yet 13 years later you still live in a glass cage then you KNOW that this illness is not untreated or even poorly treated hypothyroid. The whole body is a system and the system is fundamentally dysregulated and yes for some people this is 2 dimensional, they are undiagnosed or wrongly treated hypo, but for the majority of us with ME it is multidimensional, everyone has a different entry into the illness, very variable diverse symptoms, and different exits out. And the fact that I live with someone who had ME for 16 years and fully recovered but has never been treated for hypothyroidism clearly proves that ME is not the same thing.
some people will be wrongly diagnosed with ME and find their ‘cure’ from hypo treatment, and oh how I wish it were that simple for me and for 100s of thousands of other people across the world.
Sorry if i am being irritable, but I can see there are 17 notifications and I can now guess they will be endless people putting in their two penny worth about ME when they truly don’t know what they are talking about and should LISTEN to ME patients, just like hypothyroid patients want to be listened to and properly understood.
Yes, I think people are daft not to consider their thyroid, even if it is simply part of the picture and not the whole thing. There are some core symptoms of ME post exertional malaise (PEM) is the core one and here it is the word malaise which is important, not fatigue. To me fatigue is what you get when you become a parent, I think a lot of people with chronic fatigue and no additional symptoms are labelled as CFS ME by ignorant or lazy doctors.
I have now come to understand that many of my symptoms were caused by the body trying to get rid of pathogens. I once had septaecemia and nearly died and the malaise and the sickness I felt as the IV antibiotics were pumped through my body was very similar to many of the symptoms I had in the early years of my ME. I think it’s like chemo, the detox system is overwhelmed by trying to rid toxin and OMG does it make you feel like you are dying. So grateful that I rarely get that these days.
It's more a hypothesis than an answer. Killing off pathogens in's a slow and controlled way definitely moved me forward, I would just like to be completely recovered though, where my life is not still dictated to having to return to bed several times a day to mitigate the other symptoms. But I really don't think that is likely to happen after 13 years of throwing everything at this condition. The balance between acceptance and being proactive is a tricky one.
But it's not a single symptom, it is a cluster of many many symptoms plenty of which are not thyroid symptoms. So the key part of any research is what causes these symptoms, especially bearing in mind many people recover, like my partner who had it for 16 years, with NO thyroid medication. Or like Jennifer Brea who made the film 'restless' recovered after an operation on her neck rectified pressure which was being placed on nerves (i can't remember the exact details) which created her condition.
I'm not sure how you differentiate between a symptom and a condition, something has to cause a symptom, especially up to 20 symptoms, and surely that is the condition? Anxiety is not a disease, is it a symptom or a condition in its own right? Anxiety is no doubt caused by many different physiological problems, so what is anxiety a symptom of? I should think it varies from person to person from poor gut microbiome to female hormone imbalances, or are the female hormone imbalances a symptom of the cortisol being used up by the anxiety because cortisol is a precursor hormone for amongst many things progesterone?
What ever you want to call it, whatever the 'condition' of ME, whatever the no doubt various causes the majority of ME is not caused by a thyroid problem, the thyroid problem, if it exists in an ME patient and it clearly doesn't in plenty, is a symptom of the under lying condition.
Inflammation is mentioned in the paper, as we know inflammation is implicated in long covid, so many with ME have the final straw or trigger as a virus. Covid may trigger thyroid dysfunction in many people, but it will also create many other symptoms that have nothing to do with thyroid issues such as clots on the lungs.
I don't know what ME is, I do know we all have a unique entry into it, and for the lucky few a unique exit from it, and that we don't all share the same symptoms. What I do know is that full ME with a full range of symptoms - not just people with 'chronic fatigue' - is not an untreated or poorly treated thyroid condition, because if it was my partner would not have recovered with out thyroid treatment and I would have recovered in 2015 when I started learning more about my 20 year hypothyroid state and started exploring different ways of addressing it. I also know that if people don't listen to ME patients with open ears and don't investigate ME from a physiological position we will never untangle this complex and life shattering condition and be able to have a better chance of people like me making a recovery.
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With PMS however, they haven't identified the cause of the hormone imbalance. That is the true answer to the problem, but in the meantime they treat the cause of the symptoms with hormones, but do not know or treat what causes it.
The biggest problem for ME has not been people insisting it is undiagnosed hypothyroidism, but the psychiatric system insisting it is a psychosomatic condition. That is what has really held back any research into what is happening, there are still many psychiatrists who insist it still is of the mind, despite the change to NICE guidelines for ME. I also think it being labelled CFS has held us back because anyone who has no first hand experience of this condition assume that anyone with chronic fatigue has CFS (hence so many misdiagnosis when a GP diagnose it simply because a person is have chronic fatigue, but no other symptoms, if there are no other symptoms but fatigue then it is not ME) and also they assume that fatigue is the main symptom. There are symptoms far worse than fatigue, and i didn't experience fatigue for years, I experienced an almost inability to move, and that gradually lessened to fatigue. What many people don't understand is that fatigue can be pushed through, or rest will mitigate fatigue, but PEM can not be pushed through and doing so increases all symptoms and all suffering, usually with a delayed effect the hypothesis being that mitochondrial function is impaired, and the Krebs cycle of energy production is malfunctioning. Something that showed for me when my mitochondria was tested.
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Has anyone used a private GP to get prescription after NHS GP has refused?
Private GP or functional medicine doctor? Anyone have experience?
Awaiting medichecks results but worried about my GP's reaction about a private test...
Just got Hashimotos diagnosis from private endo
