Adrenal help please

Adrenal help please

Can anyone help me with my adrenal results? I was on hc for 7 years and over six months came off it to do the test waited 7 weeks then did the saliva test...I'm bed bound with M.E and have no thyroid and can't get the levels to raise at all...... Such a hopeless mess for so many years I feel like I'm drowning and don't know where to turn....I'm thinking of selling my car to help me see someone who can guide me as I feel I need some specific tests and then hope to move forward...someone said to do a stool test but I can't interpreted it all myself ,I can't think straight and I'm tired of fighting .

15 Replies

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  • How did you feel while you were on HC? Your very low DHEA level will contribute to fatigue. When you take HC long term it reduces the production of DHEA by the adrenals.You could supplement at up to 50 mg a day. Some people can't tolerate DHEA so it would be a good idea to start at 10 mg for a couple of weeks to see how it affects you. Also a small percentage of women experience an excess of androgens and may develop acne or facial hair which returns to normal once supplementation ceases.

    The cause of my adrenal fatigue (and for many others) was mercury toxicity. Many people are exposed to mercury through dental amalgams, some vaccines, coal fired power plants and cosmetics. Mercury particularly affects the pituitary, adrenal and thyroid.

    Hair analysis can be useful in determining if you have mercury toxicity, but there are many false negatives, especially if exposure was a long time ago. Blood tests are only useful for recent exposure and want you really want to know is how much mercury is in the cells of your body.

    The following study found that women with fibromyalgia had the same blood levels of mercury, but only one-third the levels of mercury in the urine as controls. This means the FM patients were excreting less mercury and it built up in the various organs of the body.

    sciencedirect.com/science/a...

  • Or, rather than taking DHEA, you could try Pregnenolone. A lot of people find that better than DHEA or HC because it's the mother hormone and converts to whatever is needed - cortisol, testosterone, DHEA, etc.

  • Hi there,

    not quite the thing you are asking about but have you applied for DLA yet? Maybe you have, but if not it would help with car and some care/health costs. Just a thought.

    I too am bed/chair bound and it is foul. The battle to get help or make sense of your illness is a seemingly hopeless at times. It is worth it though so remember you are not on your own and we do care.

    Mellybedhead.xxx

  • Sadly DLA was never easy to get with M.E because of the perception that it is pyscholoigical, but as far as I am aware DLA no longer exists for new claimants, this governement has changed it to something even harder to get!

  • I was successful in converting from DLA to PIP, I was awarded full mobility and care until 2026. I'm not saying it's easy at all it's a very stressful application and waiting game. I had had an indefinite award on my DLA and it would have been ridiculous not to get PIP. I went to the CAB for the form to be filled, armed with doctors letters, list of aids, consultants, list of drugs etc and a copy of the letter I wrote my GP as she doesn't know me or have much knowledge about my health problems. It's so important to write a guide of how your health affects you in daily life. From past experience GP's tend to think just because you're taking meds everything is fine and we all know it isn't. So I list every health problem I have how it makes me feel, how it affects me with dressing, personal hygiene cooking, taking meds, pain levels etc etc.

    Also if you have any psychological problems such as stress ,depression, not bring able to socialise, too fearful to drive yourself, loads of stuff you can add to strengthen your case. It's a very emotional time though ploughing through all this I'll warn you. You should get it.

  • Do you have a diagnosis of m.e? I'm so glad you are getting the help you need, but I supported several people to try and get DLA in the past and none were successful because they had a diagnosis of m.e. I have struggled on working self employed from home part time, meaning that the only time out of bed was me working enabled by my partner doing everything else that needs doing, because I knew that without further diagnosis than hypo thyroid 'under control' for twenty years and m.e I would not get PIP - i know people with clearly defined physical diabilities who have been turned down.

  • My original diagnosis was ME.

    I have interstitial cystitis, arthritis, fibromyalgia, depression, prolapsed rectum, deafness, migraine, tinnitus, hashimotos and adrenal insufficiency.

    My original claim was regarding interstitial cystitis, it's an incurable bladder disease so obviously a lot of issues around toilet needs, pain, soiling, social isolation, depression and arthritis, hearing problems, tinnitus. Then since that claim I've developed hashimotos and adrenal insufficiency, so I was willing to appeal if I didn't get it. I have some very good doctors letters of support, and they know that I have attempted suicide twice now through pain depression and social isolation.

    The application took from May to January, but at least I was getting DLA in the meantime

    Years ago I met someone with ME who received full benefits. If your partner is doing the shopping, cooking, helping you dress etc etc I don't see why you shouldn't get it.

    I accept I have quite a long history, but I did have to appeal once as they tried to downgrade mobility based in a previous visiting doctors report, not the most recent one. A social worker helped with that one as I had made a suicide attempt and had a community psychiatric nurse.

    Another tip is I have two health files, I keep all doctors letters, test results, appointment letters all filed in date order. I also keep all invoices re private doctors, buying drugs, buying aids like urine dip sticks, incontinence pads etc etc. I think it helps for you to display where the money goes, I have to buy all my water for example as I can't drink or cook in tap water. You really do have to think of everything to put your case across. We've had to install higher disabled toilets and bidets in the house at our own expense. I use bidets extensively for pain relief as well as hygiene reasons. I often have to pee into warm water to lessen the pain. The person who came out made a note of everything.

  • Hmm most of my health costs involve self medicating as the GP cut my thyroxine right back and took my T3 away. I think having such complex needs helps you get the benefits, although I agree you have to appeal. The person I helped the dr came out shook her hand said her grip was strong, made her walk 20 paces and turned her down. I guess the problem is I can walk 20 paces if I have too, I couldn't to begin with, but by pacing I could and that's all they see they don't see what it costs you the next day!

  • My first application I got refused. The visiting doctor was a disgrace I actually wrote a complaint about him. He had me walking on the stairs, he knew nothing about my bladder disease, thought it was just bacterial and you could cure it with antibiotics, wrong. He said there was nothing wrong with my knees, whereas a year later I got offered knee replacements! He didn't look at any of the info or aids I'd laid out on the dining table. All he did infact was talk to my ex husband about Coventry City football club!

    Do you walk with pain, do you have to use a stick? Do you have to have someone with you to hold on to? Do you tire easily and take several rests, do you get dizzy, breathless. You really have to break everything down.

    I still listed the drugs like T3, Hc, DHEA I have to pay for myself, plus all the supplements. The fact you have a NHS diagnosis is all they were interested in. Of course I have prescribed drugs for my bladder, and pain.

    It's a lot of effort to do all this, I accept that, and really really hard when you have so little energy. The assessment itself was nearly 3 hours, and I did have to do a couple of exercises regarding arthritis, but that was it.

  • Thankfully I am not as ill as I was at the beginning and the HC is making a big difference, but one of the reasons my symptoms have reduced is because I have carefully managed my energy and stick to a strict schedule. I keep thinking I am getting better, hopefully I am. I am certainly the best I have been since first hitting the wall 4 years ago :-)

  • Out of interest how much HC are you taking? I'm just starting out on 20mcg but sure this isn't enough for me.

    Yes it really is about managing chronic illnesses and pacing, but it's not normal life though is it?

    I can't tell you how pleased I am that you've made some progress :-)

  • I've just had my mum die unexpecedtly so have been taking alot to cope with teh stress, but am now down to 35mg!! A lot I know but I'm also very fat thanks to my illness!

  • I'm really sorry to hear that sulamaye, what a rotten time you're having.

    I'm 15 stones, I put on 5 stones over the years of not being diagnosed! I've started on 20 mg of HC, but not feeling much benefit yet.

    I hope you have good support.

    Hugs. X

  • You really need to clarify how you felt on HC and how you got onto HC? What dose of HC were you on? I too have M.E, spend 50% of teh day in bed, but have recently started HC and at least don't feel so ill, have seen big drop in symptoms. What thyroid are you on?

  • Hi Sulamaye,

    DLA/ESA is based on apparently 'what you can do not what you can't do' but if you are physically unable to look after yourself PROPERLY and or have mobility difficulties you should be eligible. They turn everyone down at first pretty much but don't be put off. I had a helper from CAB come to the house to fill my forms with me as I can't get out (can't get myself to the bathroom for that matter!) and I was awarded DLA. In the change over to ESA they put me into the 'support into work group' without appointment or assessment so I had to appeal and it was overturned. It is a hassle but it does allow help towards the treatment I need.

    With help from Dr P and the people on this forum I can now sit up, use the internet and enjoy some time out of the house. It is a start and makes me optimistic.

    Best wishes & hugs,

    Mellybedhead.

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