I have been on T3 only now for around 10 weeks after previously being on T4 for 17 yrs, and then T3/T4 for a short while.
Despite being given the go ahead by my endo (but then discharged), and prescribed by my GP (who knows nothing), I am pretty much alone in this. I am using online support groups and books to get info.
I am just puzzled re the equivalence issue and how much eventually I should be taking. I was on 100mcg T4, and T3 is supposed to be equivalent I was told to about 3x a T4 dose. However I see on Dr Myhill's site she says it's equivalent to 5 x which I am a bit surprised by...
(see paragraph on Some People Only feel Well using Pure T3). She mentions Tertroxine though so maybe that's a different kind of T3? (slow release?)
Anyway, to get to the point..... I am now up to 40mcg of T3 which is equivalent to at least 120mcg. How do I know when to stop adding it in? My BP and temp are not normal yet as far as I can see ..... at least not all the time. They are up and down at the moment to be honest. Also my symptoms are no better. I have a diagnosis of CFS and I feel now that it's not just about the thyroid and adrenals (I am doing the circadian dose of T3 to help the latter).... though I am prepared to keep trying for a bit longer.
I have asked Paul Robinson on another board and he says the thinks I am still hypothyroid and to keep going, but I am unsure how long to keep going for. In his book and Dr Myhill seem to think that you would feel better long before this!
Any thoughts on this would be gratefully listened to.
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Agapanthus
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Any equivalence between T4 and T3 is a rough estimate based on what some other people found. Yes - there is some science behind it as well, but those differences between people keep being all too important. Yes - it helps to give you some idea of what to expect. But you need what you need regardless of any arithmetic.
The Summary of Product Characteristics for Liothyronine in the UK (Mercury Pharma) says this:
Adults: Starting dose of 10 or 20 micrograms every 8 hours, increasing after one week, if necessary, to the usual recommended daily dose of 60 micrograms in two or three divided doses.
So, on that basis, 40 micrograms is indeed quite possibly not enough. Quite possible you are still hypothyroid. And some people need very much greater doses.
A few years ago liothyronine was sold under the branding Tertroxin, but then that was changed so it is now officially a generic product called Liothyronine. However, the actual tablets did not a change at all. You can see that on the SPC linked above.
There is no other licensed oral liothyronine product in the UK.
Everyone differs in their particular dose which makes them feel well.
When taking thyroid gland hormone replacements, the question 'Am I on enough' should be 'How do I feel'. If you don't feel you have reached optimum, you should increase your dose gradually. If you feel overstimulated, you just miss the next day's dose and return to the previous one. This is a link which may be helpful - you can also see how high a dose can be for a particular person. Dr Lowe has also two excerpts:-
First, the belief that timed-released T3 is of any advantage over plain T3 (such as Cytomel) is simply false. My understanding of the processing and action of T3 in the body leaves me without a plausible explanation of how timed-release T3 might be superior. Some physicians have told me that timed-released T3 ". . . avoids the cardiac arrhythmias caused by plain T3." My response is that I've done hundreds of series of ECGs on patients taking plain T3, but I've never seen such arrhythmias. (See "Important Issues") The argument that the use of timed-release T3 avoids arrhythmias is a theoretical notion without objective substantiation (there are no studies that show this!
and
And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.
Are you sure that you were on the right dose of T4? 100 mcg is quite a small dose, and you still have symptoms, CFS is a bunch of hypo symptoms that haven't been resolved, so maybe 100 wasn't enough for you.
The important thing is how you feel. If you don't feel good, add more. If you feel fine, stop there. After all, when your thyroid was working it didn't work out how much T3 is equal to how much T4, it just pumped out what you needed to live well.
T3 to T4 equivalence is just a rough guide. It's not an exact science. And if you have trouble converting T4 to T3, then it's pretty meaningless. Don't worry, you'll know if you start to go over.
Thank you all for your replies. Very much appreciated!
I think I am just concerned as I am doing it alone, but not sure at which time the GP is going to maybe call me to account over the rising dosage, and it's helpful to have that info from emc Rod, so I will print that out and have it to hand if she queries it.
I know that some people on thyroid forums consider that CFS is JUST 'a bunch of hypo symptoms', and of course CFS is just a bunch of symptoms it's true, but I am not at all convinced that they are all to do with the thyroid. I think it's a lot more complex than that (having spent the last few years looking at ME/CFS research before I even ended up on thyroid forums.) I think it's entirely likely that there are people diagnosed with CFS who do in fact have unresolved thyroid issues. However if it were that simple I don't think that they would still be spending millions on research for ME/CFS.
That said, I will continue for now with T3 increasing the dose and see how things progress for me, since yes, it is quite possible that for now I am hypothyroid still.
Me too Agapanthus, years later... still with no medic listening and still symptomatic with... I hope, over this time, you've found some solutions? Best wishes xx
Thank you for replying LindaC. Things have certainly moved on in 4 years - sadly not for the better at the moment. I did get up to 55mcg with my T3, and felt pretty stable on it, and even felt better last year until an Endo hauled me in and ticked me off for being on too much and was worried about my suppressed TSH and said I had made myself hyperthyroid. I wasn't too worried until he sent me for a DEXA scan and found I had osteoporosis. Still trying to work my way forward from this one, but have shifted to NDT in the meantime.....(and not feeling that great so far on it).
Wow Agapanthus - yes, a lot can happen in 4 years. Sorry to hear that - I had a DEXA scan in 2015 (at my request due to an awful endo) and that was fine BUT my Beta Crosslaps were waaayyy to high (apparently a precursor to bone issues) - he didn't even tell me about that; clearly the DEXA I'd requested 'stole his thunder'. They're like children... not men, not doctors I've dropped my own T3 from 62.5 to 50 mcg but I've started to add in some Armour - I took that for 2 1/2 years and did wall on it but was too concerned to go beyond 2 Grains daily... wish I had. Hope you do well on NDT, I'm thinking of going back very gradually. Take care and be well... I remain appalled at endocrinology specifically and GP's in general - there are good ones out there but many of us just don't get to see them. xx
I was really interested in your reply LindaC as I don't come across many others in my situation. Could I ask how long you have been on the T3 only (ie until recently when you reintroduced NDT)? I guess I am wondering because 4 years seems quick to have developed the osteoporosis for myself, if the heel test result of -1.1 is to be believed when I began the T3 (especially as I do know that my Vit D levels were good at the time).
Also I was very interested in the Beta Crosslaps blood test which I did not know of until now! I have been researching the urine bone turnover test as I was looking for a test I could do more frequently than the DEXA to see if I am improving or not. Incidentally, I have met one person who was on NDT for a long while (about 13 years I think) and she has developed osteoporosis, although she is small boned, so that could be the reason - but just to be aware that it doesn't protect everyone!
Now I am on the NDT (I am on 3.5 grains incidentally), I feel more as I did on T4 only, so not feeling too good sadly. My stamina is poor again, and I get a lot of muscle pain if I do much physical exercise, which of course isn't good then re the osteoporosis. I feel as if I may go back to the T3 perhaps, but on a lower dose. I did drop from 55mcg to 45mcg for a few months, and was Okish on that, but when I dropped to 40mcg I had a lot of pain (excruciating in fact).
As you say, it's hard to find a good Endocrinologist. I travelled a long way to find the first one who agreed for me to take T3, but left it to my GP to monitor and she didn't mind my suppressed TSH, but look where I have ended up. The 2nd Endo 4 years later just freaked out about the TSH, but in fact was OK about me being T3 only. He then left his job leaving me without support, and I have been thinking it out for myself until now, but I would like to see a new one now, though I may live to regret that!
So glad to have found this post having just embarked on the " go it alone " route of T3 only medication. I'm not converting T4 to active T3 and instead am making high rT3 which is blocking T3 from getting where it needs to be. I am doing it sensibly and keeping records of Temperature, Blood pressure, Pulse etc ( so far on 25mcg T3 ) and those readings have and still are on the LOW side. My blood sugars levels have come into normal range for first time in YEARS !! So delighted at that, and I suspect my cholesterol levels will also follow suit. ...I don't think I'm on optimal level just yet but am going slowly, will stay as I am for another week then up dose by half a tablet ( 12.5mcg ) while all while monitoring BP etc. I feel saddened and angry that I am in this position of 1st having to pay privately for full panel of blood tests. (£500) and then buy all testing equipment and finally to buy T3 from abroad as Pharmaceutical company's charged the NHS £900 for 100 T3 tablets and so have now been withdrawn. Therefore can charge what they like to private sector with charges via private prescription I've heard of sums of £500 for one month of tablets !!! Scandalous when same tablets can be bought over counter in Turkey for £1.20 per 100 tablets ( without prescription ) !!!! .... Of course it's risky buying abroad so another risk for ourselves in order to be well !!!
I hope it goes well for you Romany. I am sorry that you are having to buy your own and pay for all your own tests. Actually T3 hasn't yet been withdrawn overall, but it now seems like a postcode lottery depending on your CCG.
At the moment I still get T3, but I have had to be reviewed and have been pressured to change from T3 only to T4/T3 on the grounds that I have developed osteoporosis, and due to T3 only causing TSH suppression, they suspect mine of being caused by the 4 years on T3 only. No one knows for sure of course and while I was on it, my BP, Temp and Pulse were normal and monitored by me. I am on my first week of 25 mcg T4 with 35mcg T3 and not feeling too good already!
I never did all the private blood tests so I have no idea if I had high Reverse T3 or not or what the reason was for not feeling so good on T4. Now I am back on it, I am not sure how my story will go now.....
Right Agapanthus, I'll stay on here for now in case anyone else sees this all too familiar tale and I'll do a full one in a few days... just in case something else 'clicks' for you or anyone else.
I couldn't tolerate Levothyroxine at all in Feb 2010 and by April was using Armour Thyroid - too scared to take it up to my 'sweet spot', I stuck at 2 Grains because my GP would send off bloods and the lab would refuse to test so I never knew where I was. By Dec 2012 I was feeling not so good and had long since been told that I'd likely need T3 alone so I began then.
It was Jan 2015 when I again began to feel ill - I'm still taking T3 alone but have reduced it by 20% and added a very small amount of Armour back in.
Long story, which I'll get done, but I asked again to see an endo in Jan 2015 - got to see one at end June - who was determined that I shouldn't be taking 'that rubbish' (T3) - and ran a Beta Crosslaps test (no doubt to scare me and if that had been his genuine motive, then fine = no, this department is Anti-T3, Anti-NDT). As it happens, I had asked my GP for a DEXA scan and was able to report to him that it was all fine... only to see that my Beta Crosslaps had an asterisk next to it (NO ranges were provided to me!) but the DEXA spoke for itself that no bone issues. I later, fifteen months after, discovered that the * meant my result was seriously elevated (i.e. up to 0.5 was top of the range and mine was 1.35) yet neither the endo nor the GP saw fit to tell me those figures (my elevated figure being a possible consequence of Paget's bone disease which my Grandfather died with!) - I'm still needing to deal with all of this crap! There are research papers that say there is no supporting evidence that T3 leads to heart issues or osteoporosis etc.
What reason would there be for NDT to do that so someone, since NDT has all of the thyroid hormones that we have? Lot of scaremongering seems to go on and who is to say that the person wouldn't have gotten that anyway?
Endos and GPs vary enormously in what they know about hypothyroidism and treatments... it is really quite shocking! I have given up on endocrinologists... there are good people out there though... needle-haystack I'll get back to you.
I would certainly agree that Endos and GPs vary a lot in their knowledge and treatments. My own GP has happily said that I know more about the thyroid than she does, and she doesn't seem concerned to learn more, but is OK about referring me to an Endo. I have met 2 so far, both were willing to allow T3, (and the first amazingly allowing me to have T3 only but only under the GP's care). The one I am waiting to see, definitely allows T3 as I read a positive comment about her on an STTM website, but who knows where we will be by the time I get to see her (T3 could be banned by then!).
That was pretty shocking that the Beta Crosslaps result was not explained to you properly especially given your own family history. If your GP was like mine then they would not know either.
Yes, I know of the research papers that say that there is no supporting evidence to say that T3 use leads to osteoporosis or heart issues, but equally there is research to say that it does (sadly). The more I look into it the more I am not so sure (and have been discussing it with someone on another forum who has given me all the evidence against T3 use!). I don't really buy the thing about it having all the same as in our own body, as with anything we could end up taking too much perhaps and not know it since we are taking it in pill form, and therefore it's not working in the body in the way it would in normal hormone form.
I just feel between a rock and a hard place on it because now I am on NDT I don't feel any better than when I was on T4 only for 17 years!(although the T3 in it is controlling my weight better). I did feel better on T3 only, but not the whole 4 years I was on it - only last year when i began to improve overall, so I think some of it was down to the adrenals picking up at last (but then crashed again early this year, after too much stress). At the moment I am getting muscle pain if I do more than a small bit of exercise, and my stamina and immune system is poor. All of these, though not perfect, improved on T3 only over time. It's possible that I am not on a big enough dose of NDT (am on 3.5 grains) but if I increase it, then I may as well be back on the T3 only I feel.
Oh my, is there no way you can have your bone turnover checked and take something to help slow down the loss? I have a feeling that I could wind up in that place with you. Problem is with references from research of any sort, at the end of the day we're left without 'truth' of the matter and merely informed approximation (based on the integrity of the practitioner... these days, I have way less trust than ever before!).
Yes I really will take this beta crosslaps issue up with them... already done so with GP but endo is soon to be tackled once I 'warm through': (since Jan 2015 I have had dreadful hypothermia - not just the usual hypothyroid cold of sometimes 34.5 C in summer - but 'punch drunk', uncoordinated and stumbling until later on in the day... when I kind of 'come 'round'). Yes, this beta crosslaps issue is shocking (something I needed at very least to make an informed choice about!!). The only thing I can feasibly think of is that I 'stole his thunder' by my getting the Dexa scan on him warning me of the bone issue. Oh, and heart he said... yet my heart has massively improved since taking thyroid hormones: I'd be waking up, jerked out of sleep with a heart rate of 39 bpm). So where I was concerned about my health, it seems to appear that he was more concerned about being 'right' - this was endo # 4.
My own experiences with endos have been very poor.
I'm someone who didn't 'satisfy' their flawed thyroid ranges, so I've never been entertained by 'mainstream'. I was on my knees with a TSH of 3.8 (at that time 3.3 in the USA was hypothyroid, unlike 5 here); so many signs/symptoms + a medical history to support a diagnosis + family background... no one would listen, and by that time I was having heart issues, unbelievable fatigue... many usual hypothyroid signs/symptoms. By 2008 Dr Chris on This Morning literally 'diagnosed' me... sitting there slumped (must have been warmer weather or I wouldn't even have been out of bed ): I pushed to see an endo, got to see one in a few months - this snotty, arrogant and sneering doc told me to 'knock one thing out of my diet to lose weight. (I had never been overweight but had stubborn weight gain that simply wouldn't shift but that wasn't the only I issue!) Blah, blah - he was foul - absolutely appalling, insisting on examining my stomach to see if there were any 'marks', (i.e. some incidental hypothyroid sign), yet choosing to overlook all of the rest. Standing there with a nurse 'rolling her spare tyre' telling me she had a weight problem also. Again in 2009 Dr Chris was saying that if docs don't listen, then insist. I did and saw another endo - this one was an absolute gentleman - but still no joy due to again not 'satisfying' their #'s. I was in a real bad way, back then.
Feb 2010 I went to see Dr Skinner who said he, "Just had to look to see hypothyroidism" (there is 'that look' from texts over 100+ years old). He examined me, took my medical history (I provided A4 sheet of everything I'd ever had), he listened to the symptoms, saw the signs. I was prescribed Levothyroxine, as per protocol, which I took but within weeks was 'overloaded' with T4, with nowhere for it to go. I was then prescribed Armour Thyroid by Dr S, then by my GP; within weeks I was feeling a good bit better. From April 2010 to Dec 2012 I did well on Armour but no one was testing me. Whenever the GP sent my bloods off to test, incl. FT3 etc, the lab refused because my TSH was 'in range' so I never knew where I stood and, as someone who never took anything, I was concerned to keep raising NDT beyond 2 Grains a day. (Apparently, not taking it up to where it's needed by the individual can actually make things worse in the long run??).
I had, in May 2010 seen Dr P because I wanted to know which vits/mins/supplements I actually NEEDED to be taking. I'd accumulated an arsenal over the years of desperately trying to 'fix myself': he said they were all good and suggested a couple more including adrenal extract Dr P forewarned me that I was most unlikely to do well on NDT and would need T3 alone... I put off that day as long as I could because - contrary to the ludicrous ideas of docs - I was scared to take any of it. (I would never have asked for or taken HRT... so thyroid hormones were well outside of my comfort zone!)
By late early Summer 2012 I was feeling quite iffy again and saw yet another endo in a different district. I checked this one out via a recommendation on here, spoke to his secretary who assured me that he 'left no stone unturned until he found what was wrong'. You'll imagine... thought I'd struck gold Waited in anticipation, got there to find someone primarily interested in diabetes and he simply wanted my "Take on T3"... which, as said above, I had been advised by Dr P in May of 2010 would be my only route due to having been left so long untreated. I have never felt quite so let down... he was oblivious to this. I responded to his letter to GP sentence by sentence, advising that if he thought taking T3 was just some frolic, then "Do try it"... stating how he'd soon find out what others do (i.e. whether they can tolerate this hormone, thus need!).
So, no improvement, no one listening, still no testing... in Dec 2012 the effect of Armour was nowhere near as effective as it had been: (I'd developed a dreadful bloating issue, which turned out to be H-pylori - bloating went away with antibiotics... H-pylori gone but bloating problem never did and periodically occurs, requiring abx to take it down). I began T3 - slowly exchanging that from NDT - until I got up to 62.5 mcg daily (12.5 x 5 over the day) and, again it was good. From 2008 (even when really ill) I exercised to a high level x 3 hours per week, (weights, resistance and appropriate cardio - not a lot = no good for adrenals - some exercise CAN give more energy back!) but I still never lost any weight.
Got by quite well on T3 alone until Jan 2015 (see above - very, very hypothermic) when everything began to unravel... however, once I warm though I'm fine again. (My husband is perfectly capable of shaking down a mercury thermometer etc - he's a consultant's son and well able to do this!!) I have unsuccessfully tried to have this very low temp (yeah, we all get cold) situation sorted out... still no one listening; ignoring the 'punch drunk', uncoordinated etc (which is why I asked to see the endo mentioned at the beginning). I would NEVER have gone back to them but for this bizarre turn of events: I see the look on my husband's face... my shins are like 'cores of steel' as if empty of blood (they are now as I'm typing this in a room 25.9 C).
I finally got an appointment to see a neurologist in 2016 (endo #4 dismissively said he could do nothing, that maybe neurology could), still no one listening until I insisted again, and again... but the referral letter from my GP scuppered that appointment and was subsequently cancelled by the neurologist on the basis that GP only mentioned 'cold', none of the other symptoms and lambasted me for - against advice of endo #4 - taking thyroid hormones without diagnosis/ treatment (something accepted by my GP in March 2010 and Armour prescribed on NHS until this new GP stopped that in Jan 2017). I now have an appointment in May with neurology... but also have severe vertigo/tinnitus now where only double the top of the range of meds (ugghh) keeps me standing up without vomiting. I am tired of disingenuous, arrogant pigs... I am no fool and have become so tired of these inadequates.
Oh, July 2015 - diabetes finally got me badly - I'd managed with food/exercise: (my greatest fear of not being able to lose weight, no matter how exemplary my eating and great my exercise... it was always going to get me + in family!). I finally ignored all medical advice and ditched low fat for LCHF and the weight dropped off (snooty endo couldn't believe it!) - they have as much clue about dietary advice as they do about hypothyroidism So happy to shift 46 lbs over months, eating well... now the vertigo pills
So there is my tale of endocrinology, GP's etc. Sorry, cognitive damage means I can't precis.
I do wish you well and all I can say is 'keep on pushing' and take no cr*p xox
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Apologies Agapanthus - for the length of the above - I just can't precis any longer (academic background psychology - I know where has been affected ) - I've adjusted to all of this and certainly don't need 'an ear' or 'help' The Thyroid Tales are, for me, interesting... I just think it's kind of important for us to keep telling our story to others. Sorry if this one was too long. Be well!
Hello Linda. Sorry not to have replied sooner. Just feeling dreadful at the moment, and trying to do too much as usual, although some of that includes medical tests and appointments. I am due to have a cataract op soon having had a detached retina last year, (cataract happens very quickly post vitrectomy op), so it's not been all about the thyroid for me unfortunately! It was my 2nd major eye op too - had the other one 7 years ago in the other eye (retinal hole).
I guess in some ways I have been 'lucky' that in the early 90s when I got diagnosed with underactive thyroid, that it was in the days before they tightened up so much on diagnosis, and the GP I saw was willing to test me, and to believe that I didn't need to wait for a really high TSH before treating with T4. I had already been rejected by one GP who would not even give me a blood test when I asked, so I struck lucky the 2nd time. So I was pretty well on the Thyroxine for the next few years until I hit menopause and then went steadily downhill.
Your situation sounds desperate. There are some who get diagnosed with ME/CFS who end up in your situation, with a not very high TSH but feeling very ill and with, as you say, hypothyroid symptoms and other things on top like the vertigo. In my case I got the hypothyroid diagnosis, but for years then felt really ill, and no one thought to query if it was to do with the thyroid, as my TSH on the T4 was perfect most of the time (it did leap up on one occasion, but once my GP raised my dose, it went down again). I continued to be ill on T4 only for years before I began to look for answers. I am still confused by the 2 issues, CFS and the thyroid) and unsure about what's what, although I am pretty sure some of it was due to low cortisol which I am also trying to sort out now. There are thousands of people on ME/CFS forums trying to find answers to their illness, and I think that a subset, though not all, have thyroid/adrenal issues.
In fact all that you describe reminds me of the desperation of those who end up with the CFS diagnosis. Those who persist get passed around all kinds of specialists (usually male) who eventually wash their hands of you, and the GP then offers anti depressants. I have been on some of this journey but astonished that when I got diagnosed with CFS that no one bothered to do any blood tests on me, including the GP! Like you, I had low body temperature, but not as low as yours, and constipation despite a good diet. I also had piled on the weight after the menopause, despite eating the same food - it went on in about 6 months, to the extent that when I worked on a mobile library, 3 of my readers independently thought I was pregnant (I was 49 at the time!). One of them even bought me a present 'for the coming event'. The weight stayed on for the next 10 years or so, and increased more, until I went on T3 only, and for a while I ate low carb and it slowly dropped off over 2 years.
So sorry to hear that you went through diabetes - did it go away once you went on that diet? I have worried about me having it recently, but just tested and OK apparently.
Not sure yet about the bone turnover tests and who can order them for me. I am hoping that the Endo I see will do so, if you managed to get one done (the Crosslaps test one). I do have a membership of Benenden so will try them if no luck with the Endo. I have just had a couple of blood tests done via the GP which show some things that are awry but the GP is not terribly informed from experience, so I don't hold out much hope really with her, but I can but try. I am using Google at the moment as ever to give me some ideas on it.
I have been on NDT since January, but really not feeling well at all on it, and will I think need to go back to the T3 only, until I see the Endo and maybe they won't like it, and either they or the NHS may cut my supply off! I have just done a private test which is supposed to give an idea of how much the thyroid hormone is being used by the cells, but I doubt the Endo will give it the time of day - much like the cortisol saliva tests I have had done. I have had that 3 times and all showed I was low cortisol, but the Endos, don't want to know about that test either.
Anyway, this is also getting long, so I wish you well also and especially with getting help with the vertigo which must be very grim.
Hi Agapanthus - got an appointment - will get back to you soon on a couple of pertinent issues. Oh my, you take care too - my sister had a detached retina so I do understand how that can be - there's me prattling on. Take care
Just been assessed today for my cataract appointment (post the detached retina) and am hopeful it will be very soon! Sorry to hear of your sister having it. It was very scary and had to do a quick dash from far West of Cornwall to Bristol hospital. I was very lucky though, and I think the cataract op will be a breeze in contrast.
Hope it has and all goes well Agapanthus - yes, I've heard that cataract ops are a breeze in comparison. (Years back my sister was attacked and months later the retina began to detach - after an op it was ok - despite the odd concern, but it's held up for all of these years - 25+.)
Agapanthus, no problem re delay (my stuff becomes so long due to inability to precis!). Your eye situation: I know how I would feel (with Dry Eye!) and hope that day never arrives (I've the start of a cataract!). Vertigo/tinnitus etc has right ear hearing somewhat diminished and that is terrifying enough but eyes, you take care of yourself!
The Beta Crosslaps test is done in hospitals = Test: Ctx – 1 (BETA CROSSLAPS) – OSTEOPOROSIS MONITORING - so I'm not sure if only the scan is seen as definitive? I'm not sure doctors in general know enough about vits/mins (amount, quality) to take for good bone health... seems that we're all compromised on these levels because advice is poor, sketchy... when if only these levels were tested routinely throughout life for our individual baseline - with Tables, it wouldn't be that difficult to organize. If NHS wanted to save money, some initial expenditure would surely save in the long run? B12, D3 are two in particular where people can become horribly ill yet, even when tested, are told 'in range' or then prescribed low quality, insufficient amounts. Hopefully you can get this bone situation sorted out. Once I warm through, I'm back on their case about this.
I do hope your NDT situation picks up soon - it does seem to work well if taking enough (suppose I should try again but more!?). T3 is relatively simple to obtain if that is your choice. That is shocking for you, to have had x3 low cortisol readings and to have that ignored. No, neither endos nor GP's accept anything other than Addison's or Cushings - how ludicrous and distressing for you to know that yet with nothing being done! Yes, Dr P said he couldn't believe how bad my adrenals were (physical examination) and said to take Adrenal extract (ughh - I have since 2010 but have cut right down now to x1 per day). I sent off for the x4 spit test - got the first one in the freezer, next day GP phone call to say, "H-pylori, take antibiotics now" - so I never finished the cortisol test.
If you haven't already, have a look on Dr Sarah Myhill's website - there is some of the best information out there available to us: drmyhill.co.uk/
Yes, take you point about the early 90's, yet T4 prescribing seems the problem for many. As for 'lucky', it seems people diagnosed in the earlier part of the 20th C will have done way better before thyroid testing and synthetic hormones... yet I imagine they'll have had to have been really dreadfully ill to get attention. The menopause definitely seems to make everything so much worse, heard that from people on Levo for years without a thyroid and doing fine, until menopause hits. I had ongoing issues with horrendous fatigue from my late 20's (following what I've since been told had to have been glandular fever... I passed it off as a 'German Measles' type virus, stayed home for 10 days). But the crippling fatigue and cold... I used to say to people, "I need to hibernate in winter" - since Jan 2015 I'm now enforced into hibernation mode !). Clearly there has been CFS and/or ME in the background for years but also thyroid issues right through my family too (most undiagnosed, died without knowing they had it!). It is reasonable to assume that doctors would be interested in 'unusual cases'... this is also in some of my family members, but NO one gives a hoot. Lack of scientific inquiry is becoming so poor - I live in a city with large teaching hospitals too - don't want to know anything outside of TSH, with anyone taking NDT or T3 treated as a leper.
Strangely, desperation creeps up slowly that we get to adapt to it all, except on those occasions when it's simply impossible to ignore. Yes, I'm with you on the 'looking for answers' buy then doctors begin attributing this as being overly concerned about our health, when in fact we're on our knees searching for something, anything, to relieve us. Chronic stuff like this, albeit grotesque, is almost relegated to us whining yet they have no clue of who we were beforehand. Also, there is an underlying view that we're fools who can't understand research papers... without even checking our background knowledge/ experience.
Yes, the diabetes went - yet these tablets I'm taking (known to have people lose weight... I thought, "Great", have began to put weight on me, likely due to my needing twice the max. dose... couldn't make it up! I'm knowingly laughing at the 'coming event gift'... we were viewing a house and a 3y/o pointed to my stomach (the SIBO-type huge gut bloating) and asked her mum what is in there. Smart kid, she obviously looked and thought... not age of mummy to have a baby, not as old a granny though Poor woman was mortified... I just laughed and put her at ease.
Yes, I couldn't lose beyond a couple of pounds for 12 years - my food quality/intake was exemplary and exercise (the husband of a gym person, cardiologist himself, was struggling during our class... I could see him looking at me thinking, "Not much wrong with her heart..." - yes, there is but I don't let much beat me). Only when totally ignoring standard dietary advice did weight come off - T3 didn't budge it - so great that it helped you. People don't realised how it is when you've never been overweight and then say you can't shift it, let alone explain how it got there with no changes except better diet/lots of exercise... not believing you, which adds to how dreadful you feel!
We really need to be made of stern stuff to deal with all of this, especially doctors!
Very best to you, hope all goes well, take care and look after yourself. xx
Thank you again, Linda. I seem to have been fast tracked over my cataract, and it should be done in a few weeks it seems! Not sure if it was because I mentioned that my son was getting married, or because the consultant was sorry for me (cataract grew very fast), but he gave me an urgent referral for it.
You just have to put your faith in their hands for these ops. So far I have been very lucky with 3 operations and nothing bad happened so far - little miracles each time really as if it had happened 40 years ago I would be blind in both eyes by now.
I know that the Beta Crosslaps test has been bad news for you, but it could prove useful to me. If the Endo agrees to test me with it when I am on the T3 only and it shows that my bone is turning over very fast, then I may agree to try T4/T3 again (with a smaller amount of T3) but reluctantly as I was so well on T3 only last year. I have just come off NDT after nearly 3 months because it made me so ill. In the end I had terrible pain all over my body. I think that may have been autoimmune which apparently can happen to some people on NDT, I have read.
With regard to the adrenals.... well I am now on natural progesterone. Did I tell you that, I can't remember? I think it may be helping my chronic migraines which got a lot worse after menopause, but too early to be sure. That would be brilliant if so, as I have tried everything for migraine over the years. I did try that adrenal extract some years ago, on suggestion of Dr P, but it made me really ill. I have severe food intolerances and it was ghastly on my stomach (terrible pain).
As for Dr Myhill, well I have had treatment from her, so know all about her website. Nothing recently, and I probably could not get any now, as she is not treating people unless treated recently. I did my last adrenal test via her, and she did a commentary for me. She recommended Pregnenolone, but that didn't agree with me either. I have done various tests including the mitochondrial function one that she recommends on her site. I don't follow all that she says and does, which has changed a bit over the years. I don't eat completely Stone Age for example, as my diet is restricted enough as it is which I hate.
It sounds as if you have been ill for a very long time as you mention bad fatigue from your 20s. I had glandular fever in my teens, and was very ill with it (they wanted me to go into an isolation hospital) but my Mum looked after me,and I got well in 6 weeks. Apart from IBS I was pretty fit and well in my 20s and 30s and had good stamina then. It went downhill in my late 40s,but by then I was already on the T4 (at about age 44 when I got diagnosed with they thyroid issues).
Well Agapanthus, that is really good news for your cataract op!! Enjoy the wedding too Oh yes, I do know - I know someone who works for NHS and does private work - he's excellent; these ops do seem very successful.
No, I think the high beta crosslaps reading was because no one told me not to take my T3 and I was loaded up with 3/4's of that day's stuff sloshing round in me (either that or Paget's is 'round the corner)! That endo - against pretty much anything other than T4 and definitely for anyone who doesn't 'satisfy their #'s' (immaterial of any amount of signs and symptoms) seemed to be running that test to come back to me with, "Look, see what you're doing to yourself taking 'that rubbish' (as he calls it!)" but, during the interim, I'd had a Dexa done which was fine. The DEXA scan, (I had scam), according to GP is definitive but he had no clue what beta crosslaps are. I know, it would be such a shame given how well you did with T3 - yet the beta crosslaps testing would be really good for your needs. Yes, I'm adding small amount of Armour back in the mix... I must put it all down to get some advice from the excellent folk on here.
No I don't think you did mention natural progesterone? What I think I got from Dr Myhill website was to take: pregnenolone? So many times I almost made an app't to see Dr Myhill but was so sick of traipsing around, that I decided to leave it a little while - then too late was the cry! Yes, as I said, I've knocked down the adrenal extra to just 1 per day... and think I'll try the above... everything has to be done so gradually. Shame neither of those worked for you either. This just all gets toooooo much sometimes but, as the woman in the village who carried the baby calf upstairs every night for safety, years later - when a fully grown cow - she could still manage to do it little by little just becomes routinely adapted to!
When I changed to LCHF, I already had an exemplary diet - so the change to HF was the only difference really. I don't mind at all when doctors change some aspects of their advice - in the face of new 'evidence' - which can be such a good sign in comparison to the rubbish that we're still being subjugated to.
It was Dr S who said it must have been glandular fever to have hit me at that time (at college), then to have come down six months later with unfathomable fatigue (could have literally slept on the kerb). A decade+ later I came down with Meningococcal meningitis at 40 and nearly died... they thought it 'had to be viral', nearly didn't test, because I'd been ill for days!! Just as well expectation of doctors is low... treatment of most of my family is like 'Health House of Horror' - poor souls - but I never imagined that I would be able to say, "My turn now" - that's what is so awful.
It's only really been the past few years that I've been ill - I've led the life of Riley (despite the horrific fatigue - I used to take a bronchial preparation that the younger ones used to take 'for a high', just to stay awake! - the 'recipe' for that got changed, so I had to manage the fatigue all over again.) As I said the other day, we learn to adapt (to the point that if anyone saw me outside, they'd think I was full of beans and nothing wrong with me... must be from carrying that damned cow upstairs ).
Well if you hear anything good, please let me/us on here know and I wish you the very best for the future - everyone on here - because no one can possibly know how it feels... until they do You look after yourself! xx
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I've dropped my own T3 from 62.5 to 50 mcg but I've started to add in some Armour - I took that for 2 1/2 years and did wall on it but was too concerned to go beyond 2 Grains daily... wish I had. Hope you do well on NDT, I'm thinking of going back very gradually. Take care and be well... I remain appalled at endocrinology specifically and GP's in general - there are good ones out there but many of us just don't get to see them. xx
) but I'll reply to you tonight in full.
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