Good morning everyone, sitting on the desk next to me is my new adrenal stress index test kit waiting to be done...but I feel so nervous!! It will be my 4th one, the last one being 2 years ago. All the results up till now have been awful. After taking prednisolone under dr P's advice for 2 years, I was determined to 'heal my adrenals' and spent 2 difficult years weaning myself off. Lots of relapses, fatique and infections later, together with acupuncture, herbs, ginseng vit C, yoga, early nights, good food etc etc I am feeling OK. But! Dr P says my adrenals are well and truly 'knackered' (his words) and will never recover, thus needing pred for life. So, if he is right, and my results are bad, then the last 2 years of suffering will have been a waste, and i'll resign myself to prednisolone for life.
But! If there is some improvement, I will be so happy. Fingers crossed. Have a peaceful weekend. Love katey
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katey
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Good luck, cant offer advice as im just starting out with this myself so im interested in your story im currently waiting to see an endo after convincing my gp to refer me but im doing the herbs, yoga, early nights stuff, cant say i feel any better for it. There must be something else going on, when will you get the results even if its worse then at least you will know. di
Good luck with endo. If he/she not supportive there are some out there that are.
Hi Katey
i'm just starting all this after 6 years of been told i have m.e i've always argued it and said i was sure the fatigue and pain was linked to my thyroid, after seeing a brand new doc to the practice i've actually got an appointment now for the endo and i'm sooooo nervous incase i'm fobbed off again. I have hashimotos disease which was diagnosed 6 months previous to the m.e .Good luck and keep fighting, Thyroid uk has given me the support and tools to fight them with.
Thank you Di, I will let you know. Its so annoying that we have to 'convince' anyone of our need to see a consultant. It's as if we haven't got anything else we'd rather be doing! Good luck with your ideas...meditation has been key for me.
Dear sharon, thanks for your comment and I have been noticing yours too recently. It's such a long old journey isnt it, and so ironic that we need to 'fight' when the thing that is often so hard for us to have the energy to do is 'to fight'. But yes, I too am grateful for the support and comradeship that this website and people like you give. I think the labels of depression, me, cfs can be a convenient diagnosis sometimes, that can be hard to argue against. katey xxxxxxx
hi katey
i am also starting to believe the diagnosis of m.e is convienient nowadays, well now my fight begins and the doctors will be told to have a word with themselves if they try to fob me off again, its their job and they can go home at night, its our lives and we can't get away from it unless they help us, keep fighting and hope you feel well soon xxxxxxxxxxxxxxxx
Hi Guys, did you know that depression and tiredness is also a common symptom of Coeliac Disease? Where you immune system attacks itself if you eat gluten (the protein in wheat, rye, barley, oats?). Sadly awareness amongst most GPs is very low. So it's always worth asking for the simple blood test on this? Especially if you have Thyroid issues as they are often linked. See here: thyroid.about.com/cs/latest...
I read Dr P's book and whilst it's great I noticed he didn't mention CD. A lot of patients with CD take 10years to get a diagnosis and are told they have IBS, ME or CFS. So I thought it worth posting. I set up the GFG grp here on Health Unlocked to try and help Coeliacs discuss matters. Like most autoimmune diseases symptoms can vary from person to person. Some have obvious stomach problems, some tiredness, other neurological eg cramps, muscle, nerve pains, sleep disorders, aches, infertility problems. So before you jump back into taking more drugs which you don't want to I thought it worth a comment ; ) Good luck.
hi fiona i've put myself on a coeliacs diet for 2 weeks and making a food diary to see if there is any difference and the difference is major !! more ammuntion for the endo i think, thanks for posting that info xxxx
hi Fiona cfg, l definatly agree with you about the CD symtoms...its well worth trying an exclusion diet ..you have nothing to loose and every thing to gain..l feel ...t at the momment but l know l would feel far worse if l hoped of the good eating plan ( l know l have tried! )
l too was diagnosed with ibs then cfs they then added MS to this then after three years inbed they said l didnt have MS..which left me ...! untill l was diagnosed with hashi's the tiredness has just increased with every label l get..this lupus thing is a different league!!and just when you think this cant get any worse .....
.....t happens and it does...cutting soya and doing the candida diet has really helped me...l should be wafer thin ...but NO!!! best wishes donna
Hi sharon,seems to me that you have been sold short by your original Dr..l thought that if you have hashi's they should keep a check on your bloods and take notice of how your feeling ..as even if your TSH is normal ,when your antibodies are up over normal ,or really high you are just waiting for your thyroid to be attacked ..( l was in in the same position as you cfs for 12years but they didnt tell me my antibodies were high l just struggled on with the cfs thinking that was my lot!and thats what happens ) it was only when l felt SOO bad that a friend a herbalist took my blood preasure and looked at my throat that she suggested l go back to my gp and get tsh /antibodies tested again.
see your new gp before you have your endo appointment and ask for any previous blood test results..l would have been treated 11yrs ago ifl had lived in America..best wishes donnax
Hi Donna i have posted 5 years worth on my blog, i don't fully understand them so i did it to get some clarity, they are not bothered all the time, i've another blood test on wednesday and i'm not taking my thyroxine before the blood test this time, i never knew you weren't meant to to take it before a blood test,once again something else i wasn't told, Donna how were you treatedwhen they found this and how do you feel now? xxxxxxxx
I have just resd your blog to Sharon, you said that your friend looked at your throat and took your blood pressure,so I was just wondering what your symptoms were for all that time that you were treated for CFS I hope you don't mind me asking as I have a really sore throat that GP is not helping me with at the moment.
hi sha39.. no you shouldnt take it the morning of your test..l will look up your blog and re read ..have you got half an hour!!?diagnosed hashi/hypo Gp treated my with levo...hot sweats started ..and pain in arms .. stopped the levo after 2 weeks l got in touch with lyn mynott...
had a adrenal stress test ...got more advise from lyn then went private l origanally sold my endowement policys to fund this ( you cant take it with you!) but then that ran out..( lm not a Rothschild! a normal divorced mum of two but with a sister with a very good job who is very kind and helpful)as my adrenals were not functioning and no cortisol present untill early evening..l was prescribed Armour thyroid and dhea/pregnenalone...l IMPROVED ,for a while l even felt well...my dr stopped the Armour in the begining of 2009 ( because there was supply issues in america)and put me back on levo with cynomel ..l didnt feel good.l was having HOT ERUPTIONS ( not sweats ). from april l started back problems .in may l had to have an operation to remove my sacral nerve implant so l could have a MRI scan ..l reacted to the anesthetic and all drugs given ( l have always been allergic to penicillian,antibiotic and codeine)so l finally had a disc removed in aug 2009 l was in bed on morphine from april to aug and l kept telling the drs both private and hospital l felt hyper ..tests came back that my tsh was ok ..they said it was the morphine..l was on another level! and still having eruptions all the time l couldnt sleep ...manic!!
by october l was up and walking..but so hyper..l had pain in my chest and arm..l was taken to my local A&E who thought l had a heart attack.. my levels were all WRONG and big rise in T4..l was sent home and told to lower the levo...l did but l was still having sweats..so l stopped taking the levo, cynomel and dhea /pregnenalone..and the sweats stopped in a couple of days ..l felt well l went on holiday!l started levo again along with the rest of the meds and the sweats came back......!( l add this was all with my Drs knowledge) gp said it was the menopause..l knew it was different to THOSE sort of sweats.. in january 2010 my dr upped my dhea /pregnenalone and l reacted really badly to the increase ...we fiddled with doses and eventually he said to stop it indefinatly...l asked in feb could l go back on the armour as l read here it was more available..
l did start that in march...but l didnt feel good..l couldnt take much and every time l upped the dose l would sweat and have a bad reaction l was only on a very minimum dose..he started me on so many other things ( iodine ..tyrosine ..5http and so much else and l reacted to all) by july l was in a state ..l knew my adrenals were up the creak as l was anxious jumpy teary shaky and very low... ( not like me ,and a change from how l had been before l stopped the dhea etc l felt on some days like l was carry a bag on my back that l couldnt shake off) l had a panic attack on the way to an appointment with him...he didnt think my adrenals were the problem..he said he was uncontactable in aug as he was on holiday..but on the 3rd he emailed me to say TAKE the dhea/pregnenalone again.my adrenals had plumeted..he said to take it when l could in low doses as well as the armour..so l tried but no joy.. l took it in a low dose one day suffered the effects for a couple of days then stopped for a couple of days..l was up and down and felt dreadful...l got dr peatfieds book...and had an appointment with him...
he said he could see l was toxic...( my gp agreed with him when l told him what dr p had said ,tho he didnt mention it when l was there and up the wall the day before dr p's appointment!) Dr p said that the adrenals should always be treated first if there is a problem with them ..get them functioning THEN start the thyroid support.it can lead to problems with t3/t4 conversion. he said the dhea /pregnenalone was not strong enough to treat my problem..l was advised to stop my armour and other meds and l started adrenal support...my gp prescribed hydro cortisone.. and adrenal support tabs.but l react to both ( together and seperatly) . l started liqurise drops..l have not taken ANYTHING since september .after being referred to an Endo l have waited this long for an appointment. my Gp is worried about me .. my appointment is
this thursday morning at st thomas hospital..
l do feel in myself ready to start adrenal support again as l feel l am running on empty..but as lm going to hospital lfeel it better to wait till l have had new blood tests as then l will have a new base line and will know whats going on test wise ..l know myself that l am very hypo..my blood preasure is very low as is my basal temp...( a better indicator than the blood tests)l will see how the appointment goes...and what they say l am actually going to the wrong clinic as l was booked in to the morning instead of the afternoon clinic but they cant change it ..aparently l have to go and get the consultant to refer me else where! NOTHING IS EASY!!!...sorry to chew your ears off! but you did ask!! best wishes donna x
Hi katy,sorry l have been replying to comments on your blog but not to you l started reading you and went right through the comments before relying to you x lm sorry you have been through such a rough time .l personally think "Nothing" is a waste of time..just think where you might be now if you hadn't been so kind to your adrenals and tried to make them well. they could be in such a worse state now!...you said you feel OK..which is wonderful! ok is better than rough! just because your test results may say something different to how you feel at the momment, and you might need to take the prenisalone indefinatly,please dont be hard or sad with yourself..you have had relapses and all the rest of the bad times...if the pred improves your quality of life ..take it ..l wish you well with GREAT test results.x bestwishes donna xx
omg donna am i ever going to feel well? :(,, you've been through so much xxxxxxxxxxxxxx
YOU WILL FEEL WELL! you have to have hope!dont let the buggers get you down! there's loads of THEM (drs etc) BUT only one of you! so, you are the only one who can fight and push doors, to get you to where someone ,might be able to get you well.. the more that happens the more cross and p...s..d off you get with everything happening to you ..Cross is good as it gives you the omph to fight in your corner.. reading ,learning, researching.CROSS is better than sad as sad doesn't get you anywhere other than lower and more sad...( tho sometimes it cant be helped) l wish you good luck on your future journey.xdonna x
I have yet to hear of anyone being completely cured by the medical profession in general, through medication that seems to be hit and miss, surgery yes many, but that has its problems after, and blunders. I dont know what some of them get paid for.
Hi wakeham ..My friend who l hadn't been in touch with for a long while was concerned as l was so tired and lethargic and said l could see her for free..the blood preasure was VERY low..l then started taking my temp..and l also painted the old fashioned iodine on the inside of my leg.. before bed .this should have been visable in the morning but it had gone before l went to bed!l had then, as l do now a lump / goiter on the outside of my throat she could see it..though my gp hadn't noticed it..l hadnt noticed it as l was now FAT! before this one night in a pub a woman( who l now know to be a nurse) saw my disabled badge in the top of my bag..she asked what was wrong with me and l back tracked as l thought it wasn't any of her business! she said l know ,l can see your goiter and you have thyroid problems ! l said no thats fortunatly not, one of the things thats up the wall! she said lf lean back from the shoulders and swallow its even bigger!.. when l only had cfs l also used to choke alot and have difficulty swallowing ..l would drink or eat and end up having a coughing fit.l have asthma and a cough any way ,so l used to blame the asthma..! when l started the Armour thyroid the first time ( when lt made me feel well) these choking symptoms went as did the coughing..eating wasn't a problem. l am back in the choking/coughing mode again ..
l had/have pain in my glands in my neck and my shoulders and neck are very tender and achy..l cant have my bra straps on my shoulders they hurt to much!.
all the time l had cfs ( still do!) l was overwelmingly tired all the time ..BUT especially in the mornings ..l couldnt wake up..the ame as now only now its called adrenal falure and lack of cortisoL..if only l knew then what l know now! ( l also had pain in my left kidney,was hospitalized many times ,went to the pain clinic took tramadol for three years ,was like a zomby..didnt go out..)the pain only went when l started the armour..andwould yu believe its now back..dr peatfield says its my adrenal gland..hope this drivel /splurge helps! good job you weren't listening on the phone!
dear donna, no need to worry, I am so pleased that my initail entry has connected more people. It's so important anfd helpful to know that there are others like us! Sharon, wakeham love to you too.
Thanks for your help it's a great help knowing that you improved on the Armour because I was asking my GP about it but she didn't know a lot about it! I hope that you will soon be feeling better yourself Donna.
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i've always argued it and said i was sure the fatigue and pain was linked to my thyroid, after seeing a brand new doc to the practice i've actually got an appointment now for the endo and i'm sooooo nervous incase i'm fobbed off again. I have hashimotos disease which was diagnosed 6 months previous to the m.e .Good luck and keep fighting, Thyroid uk has given me the support and tools to fight them with.
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