chronic fatigue syndrome

has anyone else been fobbed off with having chronic fatigue syndrome, and if so what have you done next? i have seen so many practitioners (Dr P, Dr Myhill, 2 endos and a CFS doc) and nothing has really been done. now this second endo is saying i have dampening of the pituitary (no examination was done) he said ANY virus can cause this and i should see a clinical psychologist. I take 75mcg levo liquid, 5mcg t3 and 2ml HC cream a day, along with vitamins and minerals. Having read about HPA dysfunction this should also include sex hormones and growth hormones even sleep hormones. think he looked at sex hormones but thats it dunno if he checked the sleep or growth ones. i am tired all the time feel spaced out mainly in the morning, putting on weight, dry greying hair, vertical lines on nails, terrible PMT, terrible migraines which mainly affectr the eyes, permanent sore throat, permanent sinus issues/viruses/allergies. feel like no practitioner is taking responsibility for anything that is going on with me and im fed up!

9 Replies

  • I don't think its reasonable to expect any doc to take responsibility for what is going on with you. They can only do their best, and even in this day and age there may be no medical solution.

    Have you considered consulting a homoeopath? Your symptom list sounds like one that could respond to homoeopathy.

  • I strongly disagree, doctors have a duty of care to patients. I have barely been examined ONCE in a DECADE now THAT is medical negligence. I have seen a homeopathic doc in past she helped in the short term but in the longterm, you cant replace vit, mins, and missing hormones with sugar pills.

  • Very true it is a GP'S duty to take care of patients, unfortunately like many more with this condition I have too suffer under GP negligence, my ex GP didn't have a clue with CFS/FIBRO basically I was having to do his job for him by asking for specialist referrals ect, two years down the line and still no diagnosis (prolonged now as CFS clinic wont deal with me due to the pains which could be Fibro, my ex GP should of referred me to rheumatology a long time ago. He even told me I didn't need a name for the illness (thought that was a GP's job) also told me no help was available for people with CFS as funding had stopped, quick research and found the CFS clinic was in my own town, as you would imagine my family and I moved GP practice and in process of claiming compensation from last practice. Good luck jayz2008 you are not on your own.

  • Hi,

    Like you i have been given a cfs diagnosis and one of firbromyalgia. I have attended the cf clinic in the past and now refuse to go. I strongly beleive that cfs is a symptom of something else and yes it is the doctors job to find what this is. I always see if in the same way of how a detective works..looking for clues and evidence, this often needs a very expereinced set of eyes wholeaves no stone unturned. There is no evidence where cfs is concerned and in my opinion its given when they have no idea what to do with you.

    Recently i have been talking to a lovely lady who found that her problem was that she had no growth hormones....this was found by a knowlegable endo.Not even looked at by her doctor.

    Im going to see a neuro for my muscle weakness and pain. After that depending on the results i will have to re-think. I now that something is very wrong with my health and it will show itself at some point. This of course depends on medics who know how to investigate and are willing to do appropriate testing. One area that i have looked at it myopothies..there are lots of different types,some are genetic and others can just occur often with adult onset.

    Please dony give up and just because your doctor cant find the problem does not mean that you dont have one. A good doctor is one who looks outside of the box and does not give up trying. This surely is what they are paid for.



  • Would you not be better seeing Rheumatology for the muscle weakness and pain ? Only I went to Neuro after a 4 month wait for the same problems and also to rule out MS and found Neuro department useless as they were not interested, telling me I had no neuro problems and that they did not deal with fibro, although it does say on the NHS website that neuro dept treat it.

  • Goodluck with your journey, hope you find answers, and hope to find mine xxx

  • Hi,

    I've been shattered for years, blamed it all on thyroid but finally found out I've got a severe growth hormone deficiency so ask to get these things checked. If it's not that it's something to cross of your list of possibles,

    Take care

    Cath x

  • I was diagnosed with ME in 1988. It's nothing more than an excuse for the medical profession to do as little more for us as they can legally get away with.

  • jay, have you not considered that your dose of hormone is just too low? It is only a tiny dose, I'm not surprised that you don't feel well! Ask for an increase.

    Also, get all your vits and mins tested. Tell the doctors what you want, don't just sit back and wait for them to ask, because I'm afraid 9 out of 10 won't!

    On the subject of growth hormone, you can get that checked. Ask for it. Lots of hypos have low HGH because it takes T3 to make HGH. If your T3 is low, then your not going to be able to make it. But, when you get a high enough dose of T3 into you, it should pick up again. Alternatively, you could have daily HGH injections but that's very, very expensive!

    I agree, doctors are useless. And given half a chance they will fob you off with CFS or fibro, or send you to a psychiatrist. But what are you going to do about it? How are you going to change it? It's easier just to be pro-active, learn about your disease and insist on what you want done.

    Hugs, Grey

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