Feeling very alone and terrified - undiagnosed

First of all, I apologise for writing this without my blood results, I'm just not at all sure what to do and feel intensely alone and afraid, despite having people around me. (They don't seem to know how bad I feel.)

Had my thyroid blood test done for the first time last week. Dr yesterday said there was absolutely nothing wrong and I tried to press the issue but he refused to elaborate on it by telling me my levels.

It all started about a month ago (though I've had the choking feeling and mild fatigue for about 5yrs now) when I became constipated out of nowhere. My brain decided to freak out. I had pancreatitis that landed me in hospital about seven years ago and a switch just flipped inside with me knowing there was something going on. I've never been constipated before so it was a huge deal for me. Around the same time, I started to get a burning ache in my neck and shoulder that won't go away. This sometimes goes down my arm too and makes the right side of my body feel generally...heavy, I suppose is the word? Then the choking feeling came back and I swore my neck was swollen but the dr yesterday felt it and said it wasn't.

They increased my anti depressant and I just feel so..lost. I'm a fraction of the shadow that was the me of literally a month ago and I need people to talk to. I have considered the fact the doctor could be right but I wake up every day and for a fraction of a second I think I'm better. But I'm not.

Any tips on how to get the doctor to give me my levels? I'm a guitarist that can barely hold her guitar at the minute. I'm terrified that I'll never feel alright again.

I also have gotten two colds in the last two months and I used to very rarely get them. My bloods showed a borderline elevated CRP (which I had to press him in asking about before he told me) and as far as I know that's because of the cold but I just feel sad and alone 24/7.

Sorry if this is the wrong place, not really sure where to turn. I tick most boxes for hypo but I just don't understand why all of these aches have come out of nowhere. Thank you for listening if you did.

10 Replies

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  • Hey Lostboy, I just wanted to say I hear and understand, I'm sure someone who is more knowlegdable will write soon.

    A

  • Hello lost boy, I really do sympathise with your feelings. I know that many of us on this forum will have had those feelings at some time. You will I hope get lots of replies from fellow sufferers, but on a purely practical level, you are entitled to have a print out of your thyroid test results. This is a legal obligation under the data protection act. You might phone the surgery and ask for this to be printed out as is your right, and they may charge a nominal fee for the printing. Then please post the results on this forum so that others can comment. Please hang in there. Thinking of you. LB

  • hi there lostboy , always remember that while you have this site- with all the good people here --- YOU WILL NEVER BE ALONE , and you can ==at any time == have a rant ,get something off your chest or any of the other myriad of things that we all do .....not least of all gain the information that you will need to take them steps forward rather than backwards ......it is very important that you formally request your test results [ together with lab ranges ] so that they can be dissected by someone that is better knowledgeable and advise .....it worked fantastically for my lady [ who is now outside that damn great tunnel ] I now have more knowledge of this disease than I ever thought possible ----- it can and will happen if you want it that much .........our thoughts are with you ......alan xx

  • It is absolutely your legal right to be given copies of all your blood tests and their ranges. Whilst bizarrely some GPs and/or their receptionists might try and persuade you otherwise, you are entitled to have them. And in the case of health, knowledge is definitely power because having those results will enable you to do more research and take action to improve your health.

    nhs.uk/chq/pages/1309.aspx?...

  • Hi Lostboy,

    I really feel for you at this time, and will be praying for you today.

    I have been a guitarist, so apart from the body chemistry thing, I want to add that it is an instrument which can cause muscle injuries. Playing a guitar is a lob-sided activity. It may well be responsible for the neck and shoulder thing. For that, I would suggest getting a referral to a physiotherapist, and also seeing a good osteopath -- one who does cranio sacral work will be able to give the most gentle treatment that should not cause a reaction.

    Guitars are wonderful: what kind of music did you play?

  • Yeah it's all on my right side too, even got arm ache now! I play anything really but my heart is with stuff like Arcade Fire - not sure how to class them. I never used to have it out of my hands only 6 weeks ago. So do frightened I'll stop being able to play.

  • Hi Lostboy , I'm sorry to hear that doctors are still ignoring their patient's symptoms.

    According to your GP your thyroid is OK, so what did he suggest is causing the slow heart-rate, the consequent breathing/brain function problems because of lack of oxygen, the low body temperature (again lack of oxygen), the slow digestion when you're hungry for breakfast but not hungry at lunchtime and still you're gaining weight/body mass. Or were those figments of your imagination which he was very careful NOT to check (pulse and temperature)? Your GP either knows full well what you're experiencing OR his lack of knowledge demonstrates his incompetence. He can't have it both ways!

    You're not alone: I am frightened of my GPs casual ability to destroy my health. My diet has changed and evolved of the past couple of years and I now self-medicate - and I've never been so well!

    Stay tuned it to the people on this site.

  • Hi everyone. Been on a bit of a roller coaster this week. My aches and pains won't cease but the drs say I appear perfectly healthy. And yet...

    I'm so scared the longer it goes undiagnosed the less chance I'll have of managing it. I was going to ask to have my levels etc but was so broken up in the drs office that I couldn't get my words out. I feel so... I don't have any way to explain these constant aches and I haven't had good concentration for a long time but the aches make distraction impossible. I miss my guitar. I still try to pick it up every day but I used to play all the time.

    Thank you all so much for your lovely replies. I'm in that place currently where I don't know if that everyone (drs,family) thinks is in my head or not. The pains are so real.

  • Hi again Lostboy,

    Sorry to hear you are still in difficulties.

    I think:

    1) Best to ring the doctor's receptionist now -- don't put it off -- and simply ask for your results. Ask in a cheerful and positive tone.

    2) You have a right to be taken seriously and your ill health thoroughly investigated.

    3) I suggest again that you get a hands-on treatment for the aches and pains, such as osteopathy or acupuncture.

    Do you have any side effects with your anti-depressant?

  • Hi again there. I may have to wait an hour or so to ring the receptionist cause I'm driving myself into a right state, so id probably cry!

    I've been more sad since starting the anti depressants, more hopeless. Also initially wondered that the ache was to do with those. I asked if I could be weaned off but the dr said to wait to see how they work and then increased the dose.

    Shall definitely look around for help. Thank you so much again for the reply. Means very very much.

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