This is my first blog about where I'm at. I am slightly intoxicated so a little less inhibited - the social lubricant seems to be taking effect, so here goes.
I came to this site a few months ago - too many to remember. And I found myself being inexorably drawn towards finding out how to take control of my own health and being neither an apologist nor a 'heart-sink' patient. I'ts taken me all this time to get to grips with my condition, but this is where I'm at.
I saw Dr P - three years ago. I saw him once and followed his protocols including his follow-on readings of the temperature, pulse-rate and general rating of my health. Great for a while, but I relapsed. Wasn't sure Dr P had all the answers, and went to see Dr G M and his sepulchral nurse A. A could neuter with a glance. Adrenals could be shriveled with one of his oh-so subtle sneers. In effect, I paid for several one-hour consultations with Dr M, where actually about 30-40 minutes was spent stroking A's fur the correct way and 20-30 minutes spent verbal jousting with G, a plump, white-haired, jolly man who switched from a kind of jesty-jousting to sincere and serious when discussing the range of blood test results that cost around £600 a pop.
This led 125mcg of GP prescribed levo along with 3 grains of Armour, and a monthly bill from the pharmacist and other supplement suppliers in Belgium he recommends - at around £250 a pop. And after feeling absolutely bloody marvelous for a few months, in the end I was hyper, palpitating, shaking, sleepless, potentially diminished as a neurotic in my GPs eyes and broke again.
So, Now I'm becoming an expert patient - for myself. I'm stopping all the glandulars, going to have a saliva test for my cortisol levels and circadian rhythm, potentially using T3 to clear rT3 from my system, according to the results of the fT3 and rT3 ratio; I'm going to go CT3M in any case once I've got the "T3, or not T3" question answered because at the moment I'm on NDT - prescribed by an endo who is listening despite liking to frighten me with stern warnings about osteoporosis, or waking up one morning paralysed down one side, etc etc; I'm on a split dose of NDT and am starting to understand why I might need to take the first dose earlier than 6am etc.
One more thing - I just want to say thanks to generous people like Clarebear, RedApple, LouiseWarvillToo, Paul Robinson - all of you, in fact, who are generous with your hard-earned knowledge and time. This place has given me strength.
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Schenks
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****, who I believe enjoys the epithet "the Hercule Poirot of the CFS field", or somesuch. I wonder why your smiley didn't work? (Sorry, I'm into smileys at the moment! See if this one works...)
That's the interesting thing, cinnamon - these doctors can charge a fortune - especially Dr M, without a single guarantee that one will improve. At the least when for example, one causes a patient to go into hypo, you'd think there would be a moral obligation to treat without charge until the symptoms were relieved.
You're not kidding it is scary. That's why it's taken me so long to trust the info gleaned here. We are so processed into handing our well-being over to 'qualified' doctors that i think we lose the ability to tune in to our own bodies and actually hear what they have to say to us.
The tinkering has so far got me to 6am for the first dose, since I tried to take a grain just before I went to sleep but I found it caused the uncomfortable sensation of being able to hear my heart hammering in my ears; I doubt the cause was an anatomical migration of it into my lug, but boy was it loud! And that in itself made me anxious, let alone what was happening to my cortisol/adrenalin response...I'm too foggy to work out those possibilities!
What protocol do you follow? Have you become stable through your own research?
We are totally on the same page, albeit via slightly different routes!!!
I've seen GP's, insisted on recommended endos (rubbish) and finally got good, but not total results from Dr.P. (that's because of my shockingly low adrenals and ferritin/anemia) I know I have to improve those somehow, although my GP will only give me iron pills and point blank refuses iron injections or IV iron because of the 'side effects' (although they can't be any worse then the side effects of the dustbin diagnosis of 'CFS' in my case severe anemia/adrenal insufficiency/hashimotos and all its symptoms).
I'm going to go for a combination of Dr.P's protocol and Pauls CT3M (as Dr.P said I should go on T3 as I couldn't tolerate Armour). I've just bought Paul's book.
Also - look into LDN (low dose Naltrexone) and I think that's going to be KEY for me.
Any suggestions about how to improve ferritin levels would be good as I know that's pretty key to everything else working as well.
Pls keep in touch and abreast of your journey and how things are going!!!
Hiya, I tried Spatone but it didn't raise the levels, but as I still have 2 boxed left (I bought lots!) I think I'll try it again and just build it into my routine with the iron pills.
Geishagirl - I have tried at least 5 times to reply - going to see if this gets through. If it does, I'm going to try again on my laptop where I have fortunately saved the third attempt on a word document since i got cheesed off losing it the previous twice. Here goes . . . .
This is the fifth attempt at replying - I have no idea where the first two I was typing went to, but three bl***y paragraphs went just like that!
Again - Dr P I reckon will always say the adrenals are kaput. no doubt because they are, but it would be interesting to see how many patients he puts on to glandular supplements. And I wonder how much a practitioner would get from Nutri Ltd. If patients/clients get a 15% discount, then the rest of the 25% goes to the practitioner's account. Nice earner (not saying that Dr P does that - he's a very nice man, it must be said). Dr M I reckon will tell all his patients to stay off wheat, eggs, dairy and 'fast sugars', Not just because the blood test indicate so, but because we all should anyway! Didn't need to spend all my dosh to work that one out.
How did you find out you couldn't tolerate NDT, pettals - what ere your symptoms? Did you get your adrenals tested? And your iron levels? And I'm going to look in to LDN - not heard of that one up till now, so thanks for the heads-up. Am working towards the iron screening. And thank you for your encouragement - it helps.
Helllllo! Great to hear from you. You are girl (right?) after my own heart - on a complete mission and just ready to take your life into your hands. We have no choice and I was personally tired on wringing my hands and trying to persuade or inspire my brain-dead GP to be in the least bit concerned about treating any of my symptoms with anything aside from anti-depressants - as he said I had CFS.
Sooooooo, I found the TPA site and the Stop the Thyroid Madness site and spent my hard earned schekels on Adrenal Tests from Genova. My adrenals were flat-lining. There was no spike in the morning that slowly diminished. It was all flat! My serum ferritin was at a 6 (ref 7-90) and the iron pills never worked (in 20 years)
I went to see Dr.P who suggested I start on Cortef/ hydrocortisone (as I wasn't getting much relief from x6 Nutri Adrenal extra) and Armour. But I was getting symptoms (heart palpatations and pain, anxiety, hypoglycemia etc.) from the Armour at even half a grain. When I tried to ride the symptoms out and went up another quarter of a grain (as per the agreed Dr. P schedule) it got even worse. So Dr. P suggested I try T3 only (as the T4 also in Armour was probably contributing to the symptoms).
But he said I also needed to get my ferritin levels up which is strongly recommended advice on all the sites, as low ferittin would mean that the T3 would never get into my cells. So thats why I'm on missions to get the iron levels up.
I took a break from seeing Dr. P because sometimes life takes over and I returned to unproductivity and work battles (we don't want to make allowances for you/ why are you still on sick leave blah blah) But getting back on track now slowly and am just on the hydrocortisone for my adrenals.
Yes, I also find I am allergic to wheat - yes. And that I'm totally allergic to sugar, (which of course is addictive) and when I get into the cycle of wanting sugar to comfort eat/boost my energy send me into awful depressions. I tested it specifically. When I cut out processed sugars and overtly sweet things(I still have fruit) and stick to whole foods and vegetables etc, my mood completely lifts!
Yes LDN! LDN (low dose naltrexone). When I read up on it, it just sounds amazing! Nothing is a magic pill, but in take a look at this write-up on Paul's site. There's also a link to an LDN/Thyroid Facebook group.
I am! (A girl). I totally get where you are coming from - and going to! I am about to spend my hard-earned shekels on a Genova adrenal test...well, in about 3 weeks when the traces of Nutri Adrenal Extra are eliminated from my biochemistry!
Actually the first test I'm about to have is for the full iron spectrum, freeT4 and freeT3, Vitamin D, ferritin screen - on the NHS since I am on NDT (prescribed by the endo privately but approved publicly as he's NHS) and am going to purchase a reverseT3 through Genova! (Clarebear gave me that idea, I think! So many helpful people on here, I can't remember who said what!) So in 3 weeks - adrenals - then work into Paul's protocol. Actually, Paul Robinson sent me a fantastic post about this stuff - that's one brain to pick!
Try as I might I cannot fully give up wheat and sugar at this moment. I definitely recognise intolerances, but for me the scene is complicated with eating behaviours which are more driven by emotion and it is a little too difficult at this moment to bring those under absolute control.
That kind of crap at work makes you sick, doesn't it? I mean that ironically and in truth. It's a form of bullying, and it was bullying that finally broke this camel's back. You look after yourself, geishagirl.
So I've narrowed my focus to just a few things. Health-wise, the adrenals and the T3/CT3M with the rT3 stuff coming on it's tail. I have got to finish this post-grad I'm studying - with an effective working day of about 5 hours, spaced out with vegetating - or 'resting' and trying to escape every once in a while into "Lost in Austen". Seen it? The greatest Darcy of them all (and I've seen them all) but the show-stealer was Mr Collins. Brilliant. However, when I can't get to sleep, I allow myself to go to Pemberly.....
Where do these days fly by to!? Let me know how your blood tests go? I wish I had done a reverse T3 test at the time when I got everything done a couple of years ago but cash is a bit tight at the moment, so I've been selling my gear on ebay to create a 'health fund' for all the bits and pieces that I'm going to need.
I totally get the wheat and sugar thing, its so hard to give up especially when there are emotional issues. But I'm an all or nothing kinda gal, so I just had to go cold turkey and get rid of almost all of it. But okay, so who told me to make a moreish carrot cake (with full fat frosting!) for guests? I was trying to force-feed them with it so there would be any left overs, but I've had to shove the remains into the freezer, although it keeps calling to me when ever I get a bit stressed! The bin is one step too far for me!
No, I haven't seen Lost In Austen, although Micheal Fassbender (swoon) as Mr. Darcy might have to draw pistols at dawn against your fave. I love that man! (sigh)
Oh and whats your post-grad in? I was in the midst of my crisis so had to drop the one I was doing (booo!!)
Hey, thee Chickadee! Waassup! (Points obliquely downwards with first and fourth fingers extended, for which there is no emoticon and doing which she would look utterly stupid anyway, since she is a fat, white, middle-aged woman!)
Carrot cake, bin, carrot cake, bin . . . hmmm. I think I would just bypass the conundrum and eat the bloody thing and get it over with. but that's why I'm a fat . . .
Fassbender was was Rochester in Jane Eyre! Easy mistake - brooding brows, thrusting chest, dark and sinister yet falls for the unlikely heroine etc. In this twist on Austen Darcy is swoonable. check him out.
Would you believe I forgot to get a little bit of blood from the armload taken for the rT3 test? Since the rT3 test is private, I could have just demanded a bit of my own sample and sent the thing off, but oh, no. That would have been too efficient and on the ball. No, I forgot. So since the rT3 has to be done at the same time as the fT3, it'll have to wait, I'm afraid. Still, I've been ill for so long, I am getting used to the fact that this self-help approach is going to take a while.
Post grad is in Integrative Psychotherapy. What was yours? What a bitch to have to stop, though. I have to say, I've just about run aout of steam - finals looming but the necessary assignments don't have to be in on deadline - we can qualify over the next year or so, if we wanted to, but everyone is aiming for September, so all work must be in by August 1st. not sure i will make that one, but the next one will do, I guess.
Great blog, and very lucid, ie no detectable intoxication!
It's funny how doctors are all up in arms about osteoporosis but only when it's because they don't want to prescribe. The rest of the time no one seems too concerned about it. I heard a throwaway phrase about how every European woman over 40 will have some degree of osteoporosis, so if that's the case, why aren't they interested in diagnosing/treating it instead of warning you off therapeutic medication? x
I am not having joy with replying, puncturedbicycle - I hope this gets through. Thank you for your reply - for the 5th time since the previous 4 would not go through. And the lucidity came from very carefully typing and checking for HOURS! And boy oh boy - do I agree with you about the osteoporosis debacle. I reckon that being able to bury one's mistakes gives one a sense of omnipotence, and enhances the belief that the appearance of omniscience is all that is needed to pull the wool over the eyes of a few plebs, if you get my drift!
Fascinating to read other people's journey and how they got to this point. I know I wouldn't be where I am now without the internet and the generosity of other people that's for sure.
I have a diagnosis of CFS and Hypothyroidism - the latter came first, and am doing some of what you are about to do, along with trying to sort out other stuff which I now think needs different attention from maybe the direct thyroid aspects. So I am on, CT3M (8 weeks) on T3 (previously T4 only for 17 yrs, and then T4/T3 for only 6 weeks), and LDN (a year) - via Dr M though I think a different one from the one you mention.
I have just come back from London where I have paid privately to see a Dr F who I hope will help me with the whole picture including thyroid, and am impressed to find out that he's willing to prescribe NDT/Armour (privately of course), should I want to combine it at some point. He's based in Surrey. Mind you, the poor man is pretty busy already so I shouldn't be advertising him really!
I have a lot of issues with the gut and viruses that may need a different approach. I had a phone appointment with Dr P (same as yours above) 00but couldn't deal with the glandulars at all - my stomach pain was just too miserable, but it did give me the kickstart into exploring the whole area that I had neglected with the CFS label.
Good luck to you - good to share about your experiences with CT3M on here once you start.
We are on a somewhat parallel path, Agapanthus. i can identify with most of what you write - T4 for years, etc, and I am certain that my gut is shot with all the antibiotics over the years, coupled with what I suspect is a heavy candida problem and wheat - possibly gluten as well - allergy. but I have realised that to try and suss out all of it is too much, so it has to be the T3/CT3M first, and then the rest will follow on.
You sound like you are pretty well sussed - good luck to you too, girl (sorry if it should be boy!). You are really on the case. How are you finding the CT3M? Any discernible difference? What made you try it? It would be interesting to hear what Dr F comes up with, with regard to the whole picture - I'd love you to keep me posted.
Hi Schenks again. Nice to hear from you and will be happy to keep in touch - maybe I will just pm you in a bit so that my name is in your Inbox for referral.
I am sorry to hear about all your antibiotic history. I did use them a lot as a child, and yes, i am female, but sadly not a girl any more ha ha! I am 61 this year. I haven't had antibiotics for at least 30 years I reckon. Dr F thinks my problems are SIBO (small intestine bacterial overgrowth) which I gather is not quite the same as candida.
I started on the dietary issues at least a couple of years ago as it seemed the cheapest option! I have done all kinds of food exclusions and at last seem to have almost all of that reasonably sorted, but only recently managed to stop the intermittent stomach pain. I could start it all off again though if I ate all the foods I have now excluded...... gluten including oats, dairy (apart from butter, sheep yogurt and unpasteurised sheep cheese,) soya, sugar, processed foods, yeast, etc etc). Hard going at first but well worth not having the pain.
I am not sure yet about the CT3M as I am not yet on the full dose of T3, and never quite sure what is T3 result and what is CT3M but my BP has risen (was v low), and I think at last energy is improving. However it's not stable so not sure yet. I tried it because I had an adrenal saliva test last year and I knew that I had some issues of it being low, and had tried the glandulars approach via Dr P but couldn't tolerate them. I thought this might work better.
Hi, Clare - thanks for this. I'm having real difficulties in getting anything posted - I hjave tried to reply to the above more than half a dozen times, but it just won't download. I am hopuing this will.
Thanks she-of-the-lovely-name! What made you start the circadian rhythm method? How did you feel better - and how long did it take? (Have just got Paul's book - it's a big b***ger!
Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.
thanks Louise - I had used the reply to this icon but something is amiss, and I'm not sure it's all down to brain fog. And the site won't download from my laptop in the morning: I saved my posts that I had laboriously typed out in case they wouldn't download, but then sent the b****rs to the wrong people some 2 days after attempting to post them again (although the latter is fog, I know that, if you follow me!)
I am really interested in your story and to see how you get on. Lots of similarities with mine. I have lots of hypo symptoms, GP said ranges were normal, health fell off a cliff, eventually went to see Dr M same as you. He definitely helped me but it is horrendously expensive, private tests, private prescriptions etc. I did improve a bit but I had really bad adrenal problems that didn't get fixed. So I went to see Dr P who helped a bit too but adrenal problems and hair problems still not resolved.
Bottom line is that while I am functioning, I am not back to anywhere near where I was pre hypo. I also have hair loss and eyebrow loss which is a constant reminder to me of how crap I feel and look! As the hair thing was my first hypo sign I firmly believe (And hope) that I will get hair back once I am properly medicated. My adrenals and DHEA levels are pants!
I also bought Paul Robinsons CT3M book. I am working through it and trying to get my head round it - I just feel befuddled having tried so many things but I believe Paul is really onto something with the CT3M and it makes perfect sense to me. I will update my blog re treatment history.
I am extremely grateful to the good people on this forum including Paul Robinson, Helvella, Clarebear and all those who have taken time to read my results, give me advice and generally given me more information than any doctor I have come across! I think they should be lecturing the medicall students when they come to the topic of Thyroid!
So currently - I am on 125 mg of T4, 40mg of T3 (I take 20mg last thing at night and 20mg first thing in the morning to trial how the CT3M might help). I also take DHEA, Vit D3, B12 etc and rattle like a tube of smarties when I walk!!
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