Should the doctor really be turning me away without a diagnoses?

[sammyjayneex]

Hello

You might have read my previous threads about my health but im at the end of my tether now. I am planning to go back to my doctor tomorrow but i need some advice first.

I have been going to the doctor for 3 years with a number of complaints, I've seen a general medical consultant at the hospital but they all send me away with 'all your tests are normal, there is nothing wrong with you.'
so they send me away with no clue and one doctor said ' i will not put you on long term medication at your age' but if you cant tell me whats wrong with me why mention medication......i really really want the medication, anything they can give me because i cant live like this anymore. I have been ill since my baby was born 3 years ago. My body over heats really bad when im walking and i sweat excessively so now i cant go out unless my husband is off work so he can take me in the car, i spend my days at home until the school run. I find it difficult to recall daily memories and i have low sudden low moods. I have constant acid reflux that i have to take Omeprazole every day for but even that fails some days.
I have a slow heart rate and palpitations. I have anxiety periods where i dont want to be around anyone, everything irritates me. I get tired easily just buy walking around the shopping center. Periods have slightly changed in the distant apart that they are. My toe nails have a yellow tinge to them even though i very rarely use nail polish (once a year) and they get cleaned in the bath ect. I have periods where i cant breathe properly and feels like i have something swollen in my neck/throat. I feel worse after a cold.

I have told the doctor all of this but they tell me i have to just 'ride it out' and its just 'one of those things' should they really just be telling me this? do i really just have to spend the rest of my life living like this? I used to be happy once.

What can i say to the doctor tomorrow? Is this what my life is meant to be like from now on, its changed so much. I always suspected thyroid issues but doc said my TSH is normal (test results previously were 2.7, 1.54. 2.0) over the past 3 years....

Apologies for link fail:

www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Symptoms.aspx

en.wikipedia.org/wiki/Magnesium_deficiency_%28medicine%29#Signs_and_symptoms

I always get physical symptoms when the issue is in my head. It has taken 18 months and three repeats of chest tightness, breathlessness and an inability to get a full lungful of air, lasting several weeks each time, with subsequent hospital investigations for me to now be able to self-diagnose stress or anxiety. Now I go to the physio to help relieve anxiety symptoms when I am struggling to breathe.
I am not saying that your symptoms are imaginary. I have three times been referred for chest x Rays and lung function tests. The symptoms are very real. But now I know they aren't actually a physical problem, they are brought on by anxiety and stress. Even if this is not what is going on here, please don't disregard that physical manifestations such as those you are experiencing can very often be caused by anxiety.
Good luck with getting to the bottom of it, but I would consider some fort of counselling alongside the medical investigations to give you an outlet and prevent your mental health worsening as you deal with enforced lifestyle changes.

I don't know what's up with you, my lovely, but I sympathise! I have ME/CFS, which is basically a dustbin diagnosis: it's real, but has no known cause or cure. So, although I've got a diagnosis, I'm still in the frustrating situation outlined for you by other posters above - just learning to muddle along with it somehow, and doing my best not to get angry.

Obviously you do need to keep asking for tests - and take up any therapy you can access - but it may really be that science doesn't yet have an answer for you. Take the best care you can of yourself

I wish doctors would be very clear that theirs is not a complete science, and help scotch the idea that doctors can't diagnose = no illness to diagnose. It over rules patients actually felt experience, and leaves people worse off than they were before.

OP you are right of course, there is something wrong, but at the moment it's not clear what it is, maybe because medicine hasn't progressed that far yet, or maybe because you haven't seen the right person. That must be frustrating and scary.

no amount of psychological treatment will make the physical symptoms go away.

This is true.
But it can make the road ahead easier, whatever lies ahead.

IMO and IME we (as a society) underestimate terribly (and too our peril) how closely body and mind are linked. And it's a fairly 'modern' differentiation anyway.

Do you think there is any point visiting the doc for today? Will anything actually change or am I jar wasting my time and I should just deal with it?

no amount of psychological treatment will make the physical symptoms go away.

Yes, that is true too, hello.
But it assumes that one accepts the strong interplay between mind and body, and sammy is looking for a diagnosis.

sammy, only you can decide how to proceed. None of us here can diagnose or treat you. If you and your dr can work in partnership you have the best chance of finding something that might help you.

Antidepressant treatment and CBT have made physical symptoms go away for quite a lot of my patients who were convinced their symptoms had a physical cause not yet discovered. I have seen this a lot of times. I am not exaggerating to say that I have known people go from being in a wheelchair not able to walk to hiking after mental health treatment and rehab. I have had someone spending money on private neurologists and endocrinologists who had all their symptoms resolved with venlafaxine. That person was absolutely convinced of an obscure physical cause but has now gone back to normal life symptom-free.

Clearly I cannot know if that would be the case for you but I can't see what you'd have to lose by trying or why dismiss it out of hand as a possibility when you will consider much rarer more remote possibilities.

When I am talking to people about this I just encourage them to think of it as a test of a theory: your theory is that it is something physical as yet undiscovered and that might be true but it doesn't offer any solution just more tests and waiting. Another theory is that the physical symptoms are manifestations of adrenaline release caused by anxiety. In that case they might respond to antidepressant treatment and CBT. You don't have to believe that explanation but you have little to lose and maybe a lot to gain by giving it a trial for 6 weeks. You will spend that long waiting for appts anyway.

It seems a shame to miss out on a possible cure because of a false mind/ body separation and stigma attached to mental health treatment. I think it is a shame that people feel insulted and dismissed when this kind of explanation is raised. If it is an autoimmune condition then that is lifelong and treatment is immune suppression with steroids and other drugs which have a whole host of nasty side effects. I would far, far rather have somatic symptoms of depression and anxiety that have a good chance of a cure than lupus.

Yes I think you should go.
Try to see a GP you get on with and maybe book a double appt
By all means ask if they think further autoimmune and/ or endocrine tests will help
But go with an open mind and maybe ask for an SSRI and A CBT referral as well.

As some one who has a physical condition diagnosed I can tell you that anxiety can also cause some physical symptoms. I have anxiety as well as my condition and it causes breathlessness, nausea, upset stomach etc.

I would say keep going with your GP and see if you can get referred but don't discount going to a counselling for anxiety and trying CBT. Wouldn't it be better if even some of your symptoms disappeared?

It sounds like you've had a torrid time op. I have ME and it is awful feeling ill but not being able to find a cause that can be treated.

Whatever is causing you to feel like this you need to find a way to cope with how things are now. CBT is really helpful with making the must if your life as it is now, so if the doctors can't find something to treat at least you can try and live better and happier than you are now. Trying an antidepressant can't hurt and it doesn't rule out looking for other causes of your ill health. You might find you start feeling better.

Wishing you all the best.

There was a really good article in last weeks saturday magazine in the Guardian about the intertwining of body and mind. Pacificdogwood talks so much sense. It is like ibs. Very very real, debilitating for some, but no tests will show physical abnormalities, because its a functional issue.

I have autoimmune conditions, they are measurable in tests, but when I am anxious or have prolonged stress they all go bonkers, beyond what you would expect for the severity of my conditions. I have to accept that the stress hormones I produce have a remarkable impact. And thats ok, we are amazingly complicated creatures.

It may be worth looking at this link.
www.neurosymptoms.org/
and this

www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.VV72LtJViko

Hope you feel better soon

I know Pacific's talking about a properly holistic approach to medicine, which I would back all the way if I could. But we still live in a world where psychiatry is a discrete discipline, separate from medicine of the body.

My ME/CFS is a physical illness which was first diagnosed by a psychiatrist, as is usual with this condition. The diagnosis came after ten years of psychotherapy, making me a perfectly average patient. Each of us was persuaded our physical symptoms were psychogenic (which is not the same as 'all in the mind') and continued to become more & more incapacitated as we struggled to overcome the mental/emotional issues which were supposedly making us ill. I'm not knocking the therapy itself, but I am knocking the arrogance of the many practitioners who treated me - like all those other patients - inappropriately while my life fell apart around me and I was, effectively, taught to blame myself for not being able to cope.

The battery of tests which led to formal ratification of the psychiatrist's diagnosis should have been done first; the possibility of a 'real' illness should not have been so readily ruled out; my many complaints should have been examined as a big picture. I should not have been urged for so long to try harder on the premise that nothing was physically wrong. Patients with other systemic diseases, like Lyme's and Lupus for example, are treated in a similarly cavalier manner. So, while I recognise of course that symptoms can be caused by psych issues - and antidepressants can fix a lot of them - I would urge any patient not seeing a radical improvement with treatment to push for more tests.

Unfortunately, there can be a very blinkered view by some GPs that “I don’t know what it is, therefore it must be psychological”. I was continually refused any kind of further testing for some awful symptoms I had, was told that my Hashimoto’s was being optimally treated and it was nothing to do with that. I was offered antidepressants, counselling and a referral to a pain clinic. I couldn’t even get a blood test to test my iron levels.

I eventually got my referrals and blood tests, and was diagnosed with a serious neurological condition, several other auto-immune diseases, a genetic condition, and severe vitamin/mineral deficiencies (not related to diet).

OP, I am not suggesting that you have anything as serious going on, but I do think you need to see your GP. I ended up in tears at most of my many many wasted GP appointments, hence the easy “diagnosis” that it was all “in my head” so I started to take a family member with me. It helped to get the point across that I needed to be listened to. Maybe you could do that too – it helped to have someone else describe the impact everything was having on my life.

My situation may be unusual, and I know that the NHS cannot dispatch every patient for full-body scans and other expensive or time-consuming tests, but the dismissive attitude is soul-destroying. The support group I belong to is stuffed full of suffering people who have been equally ignored.

You have some classic thryoid symptoms there and it is not enough just to test TSH. TSH can look good when FT4 and FT3 are low in range and you are heavily symptomatic.

That is what happened to me and sadly the NHS do not seem to recognise it.

You need to push for a full thyroid panel, together with an iron panel, ferritin, B12 and folate and vitamin D. I am sure there will be clues there.

This all screams 'autoimmune' to me too. I was ill for years and years, saw umpteen doctors, including private specialists, who palmed me off, didn't believe me and told me it was anxiety/all in my head. I even saw a psychiatrist, who told me that there was absolutely nothing wrong with me psychiatrically except for totally understandable depression because of feeling so dreadful and not being believed, and that this was clearly an undiagnosed physical issue. It dragged on and on, and eventually came to a head when I developed what appeared at first to be a stomach bug that kept getting worse until I ended up being admitted to hospital as an emergency with serious dehydration. It turned out that I have severe inflammatory bowel disease (pancolitis - the worst form of ulcerative colitis). I had decades' worth of damage to my lower intestine, was so anaemic from chronic internal blood loss (high up, so not visible) that they were surprised I could stand up, and I narrowly missed needing a full colectomy. The right tests at the right time would have addressed it before it got anywhere near that bad abd given me my life back - I lost nearly twenty years of my life before diagnosis and am still nowhere near right. I see a rheumatologist regularly now (as I have subsequently developed secondary joint disease) and I have spoken to so many women in the waiting room at the rheumatology clinic who were ill for years and were not believed, or weren't taken seriously. Go back and ask for a rheumatology referral, and for more thorough thyroid testing.

I have hashimotos thyroid disease, the autoimmune version of hypothyroid. I spent two years trying to convince people and medical professionals it wasn't all in my head. All tests kept coming back normal. I had very similar symptoms to you, exhaustion, anxiety, felt depressed, wanted to do things but couldn't, became disorganised, droopy eyelids, itchy skin, hair loss, sore throats, air hunger, recurring colds, brittle nails, muscle pain, reclusive, irritable, constipated, tinnitus, nausea, long & painful periods... The list I took to the drs was endless. Finally, a few months ago, a thyroid test threw up an anomaly. My TSH was high at 10ish. This gave me the back up I needed to beg the GP to investigate, I did literally have to beg. My thyroid antibodies were so high, they couldn't be quantified.

I've since started levothyroxine but have quite a lot of symptoms still. I think my body got so out of kilter that it's going to take a long time to recover.

I no longer trust doctors.

Ask them to test your thyroid antibodies and inflammation markers. Good luck

I went to my GP today
Told him everything I've been feelings and I got quite annoyed whilst there. He asked me how many kids I have and was shocked when I told him 4 as if to try to say are causing me to be ill. he then said that he will check my TSH again but if this is normal then they will not do any other thyroid testing because they don't see the need. He did acknowledge that my symptoms do sound thyroid related but can't say it's that as TSH is normal. He gave me some anxiety medication though which I don't believe I need burnt will take it because then if it doesn't work I can prove that it's not anxiety! Just hope these blood tests show something so I can put a closure on all this

Good for you, OP! The meds may help anyway ... and keep pestering if they don't help enough

your doctor is wrong. Your TSH can be normal for years but your immune system can still be attacking it. This is how I ended up so ill. Hopefully your results will show something by now!

Good luck with the meds

That's rubbish and bad doctoring. He says it sounds like thyroid but can't be because of your results? Whatever happened to looking at the patient?

Can you change doctors?

I feel dreadful today! I'm on holiday but I feel so tired I have been struggling to keep my eyes open all day. I can't cope anymore! I can't enjoy my life like this and nothing is being resolved. What am I supposed to do? My eyes feel really 'weak' And tired and I'm too tired to keep them open and it's too much! Has anyone else had this?

I hope you dont mind me asking but what is your weight like ?