Feel so, so poorly

Please I need some advice from you wise, knowledgable people on here I am at Rock bottom and I have seen your past posts and was wondering if you could offer any words of advice. I have been ill for years and have always thought it was my thyroid. Anyway I have got the diagnosis of ME and I thought I am going to look at everything before I accept that. Anyway long story short, I saw drP in December and he said it was adrenal exhaustion which in turn was effecting my thyroid.

I have been taking adrenal extra for 2 months and just 2 weeks on the thyroid supplements. I am lactose intolerant and from what I have read most are gluton intolerant too, so I decided to stop that too, only been doing that a week.

I cannot tell you how Ill i feel everything hurts especially my joints feel like they have knives going through. I feel so weak, I can only just lay on the settee. My moods swings are terrible. Head aches permanently pounding. In some ways I feel worse than before.

Thanks Ali

13 Replies

  • Sometimes when you give up foods you are intolerant to it can make you feel worse before you get better, I'm not sure how this would be with the adrenal helper you are taking but I gave up dairy and wheat/gluten and felt terrible for the first three weeks, while I was on Armour Thyroid.

  • Hang on in there. It's a long bumpy road to recovery. I've been where you are. 2 and half years ago I was so weak I could barely stand, every inch of me was shaking, I'd lost voice because I was too weak to talk. A GP grudgingly admitted my thyroid was slightly underactive and then tried to refuse to treat me. I hit the internet and quickly worked out the adrenal connection. I had been ill since I was 20 - I'm now 59 - and had deteriorated steadily since the menopause.

    I saw Dr P in April 2 years ago. It takes time and testing to work out your deficiencies, to work out what supplements work for you and which don't.

    You don't have ME. In my opinion no-one does. It's simply doctor speak for "I can't be bothered to do enough testing and spend enough time and thought to work out your true problems".

    First thing to do is get into the habit of ALWAYS asking your doctor for a print-out of all test results. Phone your surgery and ask for all your results for, say, the last 5 years. Look to see which tests have been done. Go back and ask for any that haven't. These are the ones you need to start with:

    TSH, FT4, FT3 (you might have to insist on this one), thyroid antibodies, Vit D, Vit B12, iron, ferritin, folate.

    You aren't interested in your doctor's assertion that they are "normal". You need to know where on the range they are. FT4 and FT3 should be in the upper third of the range. The vits and minerals should all be well in range.

    Then order the saliva cortisol test from Genova UK, if you haven't already thyroiduk.org.uk/tuk/testin... If possible stop taking your adrenal supplements for a couple of weeks first. This will tell you whether you have low cortisol, high or mixed highs and lows. The result will inform your treatment and you shouldn't guess.

    I'm assuming Dr P has suggested more than just NAX? For me he suggested Vit C, CoEnzymeQ and licquorice. I can't take licquorice as it raises by blood pressure.

    Following the results of my saliva test I started myself on cortisone supplementation along with the NAX. This made a huge difference to how I felt.

    Are you on any thyroid supplementation? For example Nutri thyroid, ThyroComplex?

    Get your test results, request any that haven't been done and post them all here.

    You can and will improve.

  • What cortisone supplement are you taking? To be honest I think this is it for me I just feel so helpless. I really thought when I saw Dr p and what he said I would feel better and at first I did but now this is just the worst.

    I have had lots of bloods and posted them on here before all in range bar a few which I have supplemented. I did the saliva test with blue horizon and it cam back that I am at resistance stage 3 - maladatation.

    Dr p said at the moment we are just papering over the cracks so I needed to star on thyroid nutri which I have been for two weeks but my migraines are bad. Then last week I ate a pizza and just felt so tired and thought maybe I need to give up wheat now.

    I was due to see a endo but cancelled it because I didn't want conflicting advice and to be honest I am fed up with drs.

    Just don't know what to do now Dr P is so hard to get hold of and I hate my drs who believe I have me.

  • I just found some of your test results. Your ferritin is far too low - I didn't see an associated iron result, but guess that would be low too. Try supplementing with something like spatone water. Your folate is also low. I don't see a Vit D result.

    Your FT4 is very low in range and I don't see a FT3 result. With low FT4 and low TSH it is possible you have secondary hypothyroidism - which would possibly mean you have low cortisol. Do you have your cortisol results?

    Secondary and tertiary problems are, in my opinion, the most common causes of ME type illness because they will never be picked up using current NHS tests as your TSH will never rise. Doctors prefer to tell you that you have a mystery disease rather than actually do the tests.

    You're at the beginning of Dr P's treatment, so stick with it for a few more months. I use HC tablets and I can PM you the source if you decide to go down that route. If you do, buy the book "stop the thyroid madness" which contains lots of information on dosing with HC.

  • Thank you so much for your advise rosetrees I am taking spatone already and have read Dr p's book but with this terrible brain fog nothing seems to stay in the brain and struggle to remember what I have read.

    My husband made a suggestion that perhaps I should forget going gluton free until I have been on nutri thyroid for longer, I just don't know what to do.

    cortisol results 0.70 range 1.0-4.0.

    How can you feel so ill and still be alive.

    I feel like I have the worst case of flu ever but I know it isn't flu, if you know what I mean.

    Thank you once again xx

  • Have you tried synthetic T3? I was told ME/CFS ( fibromyalgia) too but after 10 years of misery, the end of my career plus missing my kids grow up normally which nobody can replace : ( I found an endo who listened and was prescribed T3.

    DO read the Paul robinsons books.

    I had to educate myself and go into the doctors armed with knowledge and not taking no for an answer, tell them your not giving up till you get your life back no matter how many doctors you see.

    I went private to see an endo that would be at my NHS hospital too, I paid £250 to see him privately stated the facts and what I understood ( pulse/body temp/ state of mind and physicality) about my research into my condition in this time because I was paying for it , then by the time I saw him in NHS clinic he knew I knew how to treat myself and he wrote the prescription.

    I can't stress enough, please do some research and do not take no for an answer. For them its a job, work to do then next patient till home time, you live this day in day out! your work is effected if you still work at all and family life is too. If you are not well tell them over and over but give them medical facts to work with. Mark you symptoms, research the possible causes and treatments and show them you mean business.

    I believe in you because I was you, claim your life back x

  • It is terrible feeling like that. I know it well. Ring Dr Ps office and get a telephone appointment. Leave a message and they WILL get back to you.

    Adrenal fatigue can make you feel you are dying. After what I've experienced, I learned not to change thyroid doses or thyroid medications until adrenals are stronger. Adrenals come first.

    Sometimes admin staff give basic advice on the phone if you are desperate. Until Dr P can speak to you.

    It sounds to me like bad adrenal fatigue, which feels awful, I know it well. It can be made a whole lot better especially with the kind of medicines Rosetrees is on.

    Talk to Dr P.

    Best wishes.


  • Ali72, I've sent you a PM so look in your inbox.


  • All 72, I can relate to your symptoms, and in November last year I had some more blood tests done and it showed that I had elevate calcium, so I looked further on the internet, it said to get your PTH hormone checked (parathyroid), which I did, that came back double over the range 1.5-6.5) at 11.7. I have now been diagnosed with primary hyperparathyroidism . It might be worth checking out your calcium and PTH, I've been research and looking for treatment for my thyroid and not been responding now I know why!

  • I read recently where it took 18months to cure this woman's autoimmune disease, through diet change. I have been at it since last Summer and have recently set myself back with Coconut, which is used in baking Gluten Free and i am apparently sensitive. It has taken 8 months to get rid of my sons bowel pain..it is caused by the Zanthum Gum, Carrageenin? , ..thickeners. Cut that out and no bowel pain for 1 week and i pray it lasts. For some people this is a terribly long process..just never give up in restoring your health!

  • Thank you so much everyone for all your comments. This site is so wonderful and is my life line xx

  • Inquire about Addison's disease, some Dr's may overlook the symptoms!

  • I'm on my phone so I can't go into massive detail but I was so bad before diagnosis that I was regularly having suicidal thoughts, hearing and seeing things, had two full blown episodes of paranoia add well as horrible moodswings and fatigue I can't describe. I was only picked up as hypo because I told doc I thought I must be bipolar (I'm definitely not). I'm 3 years on and I don't believe in ME. It just means they haven't found what's up. My advice to you is start with what you know, read everything and create your own path. Don't be afraid to change gp or endo, they aren't gods. Look carefully into diet as it's so critical (no one should eat gluten imo!!) And any peripheral issues like coeliac, vit d, hormones, adrenals candida etc. Eventually you will get there by process of elimination.

    Try and hang in there. Lots of us have been to the bottom and gradually clambered back up so keep asking questions.

    I've just been told I have candida so I'm gearing up for that and suspect my adrenals too.its an ever shifting map in which we must find our way But I do think most of us eventually reach a place of comfort.

    Best of luck x

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