Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Hello Andy and welcome to our forum where I sincerely hope you get all the help and support you so obviously need. I am sorry that you are feeling so bad at the moment. Your adrenal stress profile shows every one of your results throughout the day are below normal and your DHEA as too high, which often go hand in hand. Track Your Temperature: A Quick and Easy Way to Determine Metabolic Health Recognizing Adrenal and Thyroid Correction Patterns How to Take and Plot Temperatures Interpreting Results Metabolic Temperature Graphâ„¢: A Roadmap to Metabolic Health Diagnostic Tool Coming Soon Also, your free T3 is right at the bottom of the reference range and so is your free T4. For a normal person, if not on any thyroid hormone replacement, your free T4 is in the upper third of the reference range, but at the lower end of the upper third, and the free T3 is also well into the upper third of the range. For anybody on treatment, the free T4 is above the middle of the reference range and the free T3 should be quite high in the range. I would suggest getting your ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc tested to see if any of these are low in the reference range and to post the results and ref. range for each one on the forum when you get these back. Doctors are notorious at being unable to interpret such blood results, and they tend to believe if they appear anywhere within the range, that you are 'normal' and don't have a problem. Are you under the supervision of a doctor when increasing/decreasing your cortisol? Have you had the short synacthen test done at your local hospital to see whether you are actually suffering with 's disease or not? Read the following information about 's Disease http://www.addisons.org.uk/info/addisons/page1.html and let us know whether you relate to any of this. I think you are wise to stop the NDT for a while until your adrenal status becomes more settled. There are other adrenal glandulars you can take including Prednisolone (which you take once a day because it has a long half life) and if you are thinking of asking your GP to refer you to be tested to see whether you have 's or not. You will need to reduce your HC gradually before you can have the ACTH test http://www.labtestsonline.org/understanding/analytes/acth/test.html Luv - Sheila I have noticed little or no improvement since starting HC & NDT..my temps have gone up slightly but I still have no energy,still feel very weak & breathless with the slightest physical activity,still feel I need to shut myself away from the world in a quiet dark room,still feel very depressed & irritable,still brain fogged..all the symptoms I started with plus a weight gain of 25 pounds from the HC AAAARGH! So what to do now?...if my digestion doesn't stabilize & I can no longer tolerate HC how quickly can I wean...judging from my lack of improvement on NDT & hyper symptoms at 2.5 grains it looks like I need further tests to see why...At the moment I feel as though I've dug myself into a hole & I'm not sure how to get out.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Hi Sheila..thanks for the welcome,although it's not my first post here:) I'm not working with a doctor,unfortunately I don't have the funds for a private doctor & NHS docs are incapable of thinking outside accepted doctrine,as far as they are concerned my thyroid is fine & I have CFS...It's been a case of educating myself as much as possible with books & excellent forums such as this one & working out the necessary protocol from there. I have been tracking my metabolic temps,I started HC October last year temps stabilized on 30mg HC,I stayed on 30mg for two weeks before starting NDT at 0.25 grains..as I raised NDT I found it necessary to raise HC to 32.5mg to stabilize temps...even at 32.5mg HC my temps would be stable for a week or so then drop or rise with the slightest physical exertion..I noticed very little improvement physically or emotionally as I raised NDT,temps improved slightly,brain fog lessened slightly but overall I still have all the signs & symptoms of HpoAdrenal & HypoT with hyper type adverse symptoms appearing at 2.5 grains. I agree with the blood tests you suggest,I should have had them done from the start..aaaah..hindsight how wonderful you are:) I believe the main potential problems to be D levels & ferritin,I supplement all the B vits & zinc & take epsom salts baths for added magnesium..I've been a vegetarian sometimes vegan for over thirty years so low iron is a possibility,as for D well I haven't been well enough to get out in the sunshine for over a year so I'm pretty certain they will be low..although if they are low I'm not sure what to do to correct the situation as I can't tolerate D or iron supps,oh well I'll worry about that if & when the problem arises. I've checked s symptoms in the past,the only symptoms that match are fatigue & muscle weakness..I have no hyper-pigmentation,nausea,vomiting,faintness,I enjoy salty food but don't crave salt..muscle aches & pains have only really been a problem in the last couple of weeks since upping HC to 37.5mg & the problems with digestion the raise caused. Do you think with my adrenal stress profile but lack of 's symptoms I should wean HC completely & approach my GP for a synacthen test to make sure 's isn't a possibility?..or should I order & start on prednisolone?..at the moment I feel very very unstable physically & emotionally.With every dose of HC I feel worse.I can hardly eat anything,my digestive tract doesn't want HC anywhere near it..I feel worse physically & emotionally after taking HC,very weak,shaky,irritable & brain fogged. Am I right in thinking Pred is 4x as strong AS HC so to replace 32.5mg of HC I'd need to take approx 8mg pred? I know for me the priority is to get off of HC,so it's either wean off completely so I can have a synacthen test or change over from HC to Pred & see if things improve...obviously pred has advantages in that it only needs to be taken once a day but it's disadvantage is that it's not bio-identical & needs to be converted in the liver to cortisol..so from a practical standpoint what difference does that make to it's effectiveness & potential side effects?..I've already gained 25lbs & five inches of fat around my middle on HC,coupled with no meaningful improvement on HC I'm starting to lose faith in steroid therapy for HypoAdrenal:( If I decide to wean from HC completely how quickly can I safely reduce?..I'm stopping NDT completely until I have the above blood tests & adrenals are more stable. I'm barely getting through each day at the moment..I've really lost faith in my decision to go on HC:(..my brain fogged brain second guessing my decisions is making it even more difficult to consider carrying on with steroid therapy. As always thanks for your time,it's very much appreciated:) ~Andy~ our adrenal stress profile shows every one of your results throughout the day are below normal and your DHEA as too high, which often go hand in hand. Also, your free T3 is right at the bottom of the reference range and so is your free T4. For a normal person, if not on any thyroid hormone replacement, your free T4 is in the upper third of the reference range, but at the lower end of the upper third, and the free T3 is also well into the upper third of the range. For anybody on treatment, the free T4 is above the middle of the reference range and the free T3 should be quite high in the range. I would suggest getting your ferritin, vitamin B12, vitamin D3, magnesium,folate, copper and zinc tested to see if any of these are low in the reference range and to post the results and ref. range for each one on the forum when you get these back. Doctors are notorious at being unable to interpret such blood results, and they tend to believe if they appear anywhere within the range, that you are 'normal' and don't have a problem. Are you under the supervision of a doctor when increasing/decreasing your cortisol? Have you had the short synacthen test done at your local hospital to see whether you are actually suffering with 's disease or not? I think you are wise to stop the NDT for a while until your adrenal status becomes more settled. There are other adrenal glandulars you can take including Prednisolone (which you take once a day because it has a long half life) and if you are thinking of asking your GP to refer you to be tested to see whether you have 's or not. You will need to reduce your HC gradually before you can have the ACTH test I have noticed little or no improvement since starting HC & NDT..my temps > have gone up slightly but I still have no energy,still feel very weak & > breathless with the slightest physical activity,still feel I need to shut > myself away from the world in a quiet dark room,still feel very depressed & > irritable,still brain fogged..all the symptoms I started with plus a weight > gain of 25 pounds from the HC AAAARGH! > > So what to do now?...if my digestion doesn't stabilize & I can no longer > tolerate HC how quickly can I wean...judging from my lack of improvement on > NDT & hyper symptoms at 2.5 grains it looks like I need further tests to see > why...At the moment I feel as though I've dug myself into a hole & I'm not > sure how to get out.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Heart thumping can also be caused through a lack of magnesium. When this happens, try taking 500mgs Magnesium and see if that stops the thumping. If it does, you know what your body is lacking. Luv - Sheila > Started NDT(Naturethroid)two weeks after HC..started on 0.25 grains & built up slowly to 2.5..at 2.5 grains had hyper type symptoms,felt jittery,wired,shakey,irritable,weak,felt like my heart was beating out of my chest..my temps & heart rate didn't rise,heart rate still in the low to mid 60s so dont believe these symptoms to be true hyper,I suspect ferritin,vit D,B12 or RT3 issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 I agree with this totally . > The tendency with all of this is to assume as soon as it goes wrong that it's your fault and the meds are wrong... If you were seeing a doctor, you would be getting mad with him as he would be saying nothing much apart from carry on and come back in 6 months for tests > > x > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi andy, don`t no much about bad adrenals but what i have learned fron some research and this group you may need to start again,by this I mean stop all meds for a few days and don`t asume that you have thyroid problems . have you tested for the thyroid? if they are in need of some treatment then try to get the adrenals strong first this may take some time! I think you increased the cotisone to quickly and then introduced the thyroid meds to soon. start with a low dose and stay on this for a month or to if ok then and only then increase by a little more . many wont to get well quickly, but it may take some time to mend the adrenals and be able to get well again. you may have more adrenal problems than thyroid so get these strong first. Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hello Andy, You are currently in a difficult spot and you are experiencing the negative effects that even physiological dosages of long-term HC therapy can produce, and it is difficult to suggest a way out. Your own feeling is to reduce the HC and I agree with that. 37.5 mg HC is a relatively high amount for a physiological dosage and according to Dr. Peatfield should be reserved for "exceptional" circumstances when low adrenal reserve reaches ian levels. Obviously I don't know you, but by your own reckoning you do not feel that this is the case. The way cortisol works is that healthy adrenal glands will adjust their output on a `need' basis. Whilst 40-60 mg per day are the `norm', in stressful situations the output can be as much as 200 mg/day... but there will rarely be an excess, because the adrenals only produce sufficient amounts, as needed. – By contrast, when you supplement HC, you do not know how much your body needs at any given time... so when you misjudge the dosage, any excess cortisol will be stored in the liver, where it turns into toxin.... and toxins build up, causing symptoms. This is the underlying scenario, but in addition you have to bear in mind that as you put exogenous HC into the body, your adrenals will reduce their own output accordingly, because there will now be plenty of cortisol available in the body and the pituitary gland will reduce the amount of ACTH (which triggers the amount of cortisol the adrenals are expected to produce) - so you see, there is a very fine line between giving the adrenals a helping hand and taking over their job. The higher you go with your HC dosage, the less the adrenals will produce ... even when they are capable of producing cortisol. And herein lays the danger; whilst your body `knows' exactly how much cortisol is needed at any given time, `you' don't.... and when you get into stressful situations after taking HC long-term, your adrenals will rely on you to provide what it needed. --- So now you need to `re-train' your adrenals to think for themselves, and this will take some time and a lot of patience on your part. I would suggest for you to reduce your HC by 2.5 mg and stay on that dosage until you feel your body can cope. This can take a week or a month at a time – no way of knowing. You just have to see how it goes. And I would repeat this stepping down until you have weaned yourself off the HC. Don't be tempted to do it too quickly, it will just set you back. Get some hydrocortisone cream over the counter and use that as back-up to tide you over in an `emergency'. Use different parts of your body to put the cream on and use the fatty parts for better absorption. Cortisone will thin the skin, so you need to rotate. To my mind to wean yourself off the HC is the first step, but in addition you need to find out what else is going on. There is no point of changing the HC for Preds – they both do the same thing, only HC is natural cortisol and Prednisolone is synthetic. And yes, Preds are 4 times stronger than HC so 10 mg Preds would equate to 40 mg HC and Preds work differently in that prednisolone, unlike HC, remains active in the system for about 24 hours (HC is used up in ~ 4-5 hours) and therefore can be taken once a day. There is, btw, a difference between prednisolone and prednisone – prednisone needs to get converted into prednisolone in the liver, prednisolone is the `finished article'. The Americans generally use prednisone for some reason, but over here most doctors use prednisolone. But back to you finding out what else is going on... – your urinary thyroid result is still relatively low considering that you are taking 2+ grains NDT. I agree with you that for the moment reducing/stopping your thyroid meds to see if this makes you feel better makes sense, but I would not stop for too long, as your body does need thyroid hormone. Something seems to be stopping all this lovely thyroid hormone from being efficiently utilized and any attempt to go higher gives you hyper symptoms right now. The answer, I believe, is not upping the HC though, but to find what else might be the culprit here and as Sheila and others have said, please ask your doctor to check your mineral and vitamin status. It is very possible that a low D3, low ferritin or low B12 might be responsible for stopping your thyroid hormone to be properly utilized. You also need to check yourself for Candida Albicans – if you suffered from that, it would definitely stop any efficient utilization of thyroid hormone. Looking at your urinary thyroid result, I don't think rT3 is your problem... the relationship between T4 and T3 looks about right to me. ...unfortunatelythings declined rapidly,after a few days I started getting stomach cramps & bloating after taking HC,quickly this worsened to urgent uncomfortablediaorhoea,I also now have an aching pain in the middle of my back on the righthand side..I have always taken HC with food & had no previous discomfort. Something my mother used to say to me always springs to mind when I am puzzling over something that does not seem to make sense - `it is possible to have lice as well as fleas' .... and I wonder if your stomach problems are really related to the HC. There are currently stomach bugs making the rounds, and perhaps you have caught something? It might be worth sending a stool sample off to the lab. No doubt your GP will be willing to help. I feel totally wiped out,incredibly weak,I can hardly walk up the stairs,shortof breath with the mildest exertion,reallyirritable,depressed,shaky,jittery,nervous..I can't be around anyone,I'm havingto shut myself away from everyone & everything.. That, however, does sound very `adrenal'. But as I tried to explain above, the higher the dose of HC, the less cortisol will your own adrenals produce. The effect of steroid therapy depends very much on amounts and duration. So (unless you were addisonian) you are not gaining anything by upping the dose of HC once you venture into the gray area between physiological to therapeutic dosages. It is a very, very fine line and exact amounts depend on the individual, but generally speaking a "safe" amount of daily HC should not exceed 20 mg. Unfortunately, once you are caught in that vicious circle of higher dosages, it is difficult to reduce. You will have to come down very slowly. Cold turkey could just push you into a crisis. Btw, I fully understand that the last thing on earth you feel like is exercise... but you need to give it a try. I am not talking about joining a gym, but about regular gentle walks out in the fresh air – perhaps swimming a length or two ... anything you can manage, nothing terribly energetic. This will help to re-condition your adrenals. Exercise will raise your own cortisol production. If you keep shutting yourself away, you are making matters worse. Start slowly and build up. Your goal needs to be to come off the HC and to encourage your own adrenals to pick up their role again. I hope this helps you a little, With best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2011 Report Share Posted February 21, 2011 Hi Sorry to hear you're suffering so much. DId you get a 24 hour urinary free cortisol test? These are useful; i have heard that people with low saliva cortisol can sometimes have low salliva cortisol but normal urinary free cortisol because their body is using up cortisol quickly : the 24 hr profile shows what's happeningwith the total amounts. www.medichecks do this, as do the NHS. what other tests have you had on NHS? did you ever get testosterone done? steroids can affect the bowel, check out ' the stress effect' by Weinstein: http://www.richardweinsteindc.com/disorders.htm - he recommends paying attention to bowel inflammation as adrenals have to output lots of cortisol to cool the inflammation. were you this bad before the HC? If it were me i'd go to my GP, state what you've tried, and get help there to come off. i tried NDT and it made me worse so i came off them. i went up to about 60mg hc, was on 40mg for a while too, but came right down to 20s, 10s, and been off it sometime. at first, hc made me feel very bad indeed, like you dsecribe. i hope you feel better soon chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hi all..thanks for your thoughts,they are much appreciated:)..I've had a week now to let my body settle,it's given me time to step back & reassess my progress. Since stopping NDT last week most of the hyper type NDT intolerance symptoms have reduced dramatically..I've reduced HC to 27.5mg dosed 10 7.5 5 5 & just in case recent gastrointestinal problems had been caused by a stomach bug & not HC I treated with oil of oregano,grapefruit seed extract & homemade colloidal silver,saw little improvement. Stomach cramping etc have improved slightly since lowering HC & taking pills with a larger quantity of food,I'll probably hold at 27.5 for a week or two & see what happens. I don't believe candida to be an issue..to cover all potential causes of CFS I have followed various anti Candida protocols in the past including Nystatin,Diflucan,Candida diet,oil of oregano,grapefruit seed extract,caprylic acid/coconut oil,molybdenum,probiotics etc..as a child I had a LOT of antibiotics so had to consider the possibility that candida might be a problem..I have never experienced any gastrointestinal problems that might suggest candida..I had no herxheimer/die off reactions to any of the candida protocols & experienced no CFS improvement so am pretty confidant candida isn't an issue. I agree something is stopping NDT from working:(..I'll be seeing my GP next week to discuss tests..would you add any more tests to the following...iron panel including ferritin,B12,D,folate,magnesium,copper,zinc,testosterone,I have been tested for possible coeliac in the past,results where negative but I believe it worth retesting. The urine thyroid test results where taken before starting NDT so are my baseline..I agree they seem pretty balanced & don't suggest a RT3 problem,do you think it worthwhile having T3 RT3 labs just in case RT3 has become a problem? I'm uncertain about restarting NDT,I know my body needs thyroid but many hypo symptoms worsened on NDT,my sparse outer eyebrows have now almost completely gone:(..should I wait until I have the test results or restart NDT now & if so at what dose? As always thanks for your time & help.. ~Andy~ To my mind to wean yourself off the HC is the first step, but in addition you need to find out what else is going on. But back to you finding out what else is going on... – your urinary thyroid result is still relatively low considering that you are taking 2+ grains NDT. [Ed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2011 Report Share Posted February 28, 2011 Andy, if you have thyroid antibodies and diagnosed with Hashimoto's as the cause of your thyroid problem, you should benefit by going on a gluten free diet. I would wait until you have your results back before deciding what you need to do next. Luv - Sheila Since stopping NDT last week most of the hyper type NDT intolerance symptoms have reduced dramatically..I've reduced HC to 27.5mg dosed 10 7.5 5 5 & just in case recent gastrointestinal problems had been caused by a stomach bug & not HC I treated with oil of oregano,grapefruit seed extract & homemade colloidal silver,saw little improvement. Stomach cramping etc have improved slightly since lowering HC & taking pills with a larger quantity of food,I'll probably hold at 27.5 for a week or two & see what happens. Quote Link to comment Share on other sites More sharing options...
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