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

(75 Posts)
sammyjayneex Thu 21-May-15 20:02:06

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....

Stoneysilence Thu 21-May-15 20:07:08

Firstly sorry you're feeling frustrated.

Second, I'm in no way qualified to comment professionally on your symptoms, but -

Have you tried talking to a therapist about anxiety?

Twirlwirlywoo Thu 21-May-15 20:48:05

I have some similarish symptoms!

They tested my thyroid. It came back bordelrine overactive once last year and once last year but all follow up tests say I hae a normal thyroid function.

I have been getting sore throats, breathlessness, achey neck etc for a few years. It comes and goes.

I recently moved and because of my medical history new GP ran a million new bloods. All normal except the original thyroid(I mentioned above). However, she sent me for a USS of my thyroid. I have enlarged thyroid on one side and a large nodule on the other side.

I am between hospital investigations at the moment so no further on with an actual diagnosis but a lot of what you said match my symptoms. Thyroid effects pretty much everything - so if something is slightly wrong there it can wreck havoc.

It may be worth asking about a scan on your thyroid to see if that starts the ball rolling on further tests like it has for me.

mamadoc Thu 21-May-15 21:04:03

Sometimes medical science does not have the answer.

That is really, really hard for you, of course having to live with symptoms for which no cause can be found but it is an imperfect science. The Dr can't give you a diagnosis if there is not one that fits.

The symptoms you describe are very wide ranging and not specific to any particular system. It sounds like a lot of investigation has been done which ought to have ruled out anything very serious or life threatening. It doesn't seem they are fobbing you off. They have done tests and a specialist referral. It's hard to know what more they really could do.

It is possible for unexplained symptoms to become a self fulfilling prophecy. I am in no way suggesting you made them up but you can become 'hyper vigilant' about health and start to notice and maybe misinterpret bodily sensations you would not have noticed before.

Would you consider trying an antidepressant or ideally CBT? I hope you are not offended by this suggestion. It's not trying to say 'it's all in your head' it's more about finding a way to cope and not let it limit your life so much since a diagnosis and a cure seem elusive.

sammyjayneex Thu 21-May-15 21:07:56

Thanks for your replies
This isn't All in my head, I know this because some days I can not leave the house due to not being able to breathe
Acid reflux is horrific
I don't believe people can be ill for no reason
This can drive someone to suicide it is so life limiting

Henbur1702 Thu 21-May-15 21:22:20

Many of your symptoms can be linked to omeprazole use. Perhaps the yellow toe nails and the reflux are linked maybe fungal? First ID try and get to the bottom of the gastroenterological issues. For years I suffered with thrush, mouth ulcers, medically confirmed neurological issues, reflux, unexplained itching, recurrent throat and kidney infections, skin rashes etc. etc. never considered they were linked but (Touch wood) but they all disappeared after being diagnosed coeliac and going gluten free. Not suggesting this is what you have but more that treating symptoms is not always successful. regardless omeprazole is not a good long term strategy!

Cocolepew Thu 21-May-15 21:24:42

When you say breathless can you describe it?

sammyjayneex Thu 21-May-15 21:28:29

The breathless feels like their is something in my wind pipe blocking me from getting a full breath of air like I have to make more effort to breathe

sammyjayneex Thu 21-May-15 21:30:20

It's more apparent during Walking and exercise, my wind Pipe feels constricted some how
I had a chest X-ray a few months ago but haven't been contacted so I presume it was normal

Cocolepew Thu 21-May-15 21:39:55

I think it's be an auto immune disease, thyroid problems is one.
Do you hamve dry mouth ir problems, swallowing? Some of your symptons are like Sjogrens but not all.
I have Lupus and I suspect Sjogrens and have breathing problems.

sammyjayneex Thu 21-May-15 21:53:37

I myself have suspected an auto immune disorder but how do I put this to the GP without sounding stupid and that I know more than them? Do I just come out and say it
A few years ago I developed really bad tonsillitis and then two weeks after recovering I had a bad reaction from my immune system and it was something called erythema nodosum
It where your immune systems has a reaction to the virus and it presents itself with tender warm lumps on your body mainly your legs. It cleared up after 6 weeks but I remember the doctor in A and E mumbling to me that this can mean complications will develop after this in rare cases
Could I have developed an auto immune disorder from this?

PacificDogwood Thu 21-May-15 21:57:37

So sorry to read you have been feeling so rubbish for so long and that you don't feel doctors have been able to help you. And that you don't feel 'heard'.

Nobody hear can diagnose you.
And yes, there are loads of things that current medical knowledge and tests cannot figure out.
You are not saying what tests you've had, but it is entirely possible (and you are not alone in that. At all) to have lots and lots of 'normal' tests and still feel terrible.

I loathe and detest the phrase 'all in my head' btw - no dr worth their salt will ever say or think that. Mind and body are very closely linked and whatever one feels will affect the other. Nobody says to somebody who is depressed due to chronic pain "you should be happy, it's all just in the body", do they?

There are screeds and screeds of publications and people far cleverer than me are doing research on 'medically unexplained symptoms' - I can only begin to imagine how frustrating it must be to have something distressing that nobody is able to pin down. Sometimes (and I am in no way saying that you are at that point) a decision needs to be made to stop chasing 'an answer' (some things just don't have an answer) or even a firm diagnosis, and start managing how you are feeling and functioning; prioritising things.
Many problems are not structural, but functional i.e. how your swallowing muscle work, not what your throat/gullet looks like.

For instance re swallowing problems: if you have had an endoscopy then it will have been established whether there is a structural blockage or other impediment to your swallowing. If there isn't, there's little to be gained by looking again IYSWIM.

Do you trust your doctor?
If not, can you see somebody else? Sometime a fresh set of eyes is helpful.

Believe it or not, from a medical point of view, something going on for a long time without tests revealing anything is a reassuring thing. Bad things tend to progress and come to some kind of ugly head.

My advice would be to have a good long conversation looking at your symptoms, what was done to look at possible causes and then address how to manage them.

Whether or not this is all 'in your head' i.e. caused by stress/anxiety/major life event of having a baby/a combination of those factors and who-knows-what-else or turns out to be some weird and wonderful physical thing that has not been figured out yet, ultimately what matters is How You Feel. So start addressing that: if you need to take your Omeprazole daily or need to increase your dose, discuss that with your dr. If the whole thing is getting you down, seek some help with that: anxiety/stress management can make a huge change to how we feel physically. If going out stresses you out, then set goals: "Today I'll make it to my back step" "tomorrow I'll go down the lane" "the day after that I'll go to the post box". Or something like that smile

Accepting that there might not be 'an answer' is NOT akin to giving up, but can give a whole new perspective in trying to tackle how you are feeling.

Sorry for the novel.
I hope some of it helps a little.
Speak to your dr, write questions down, write their answers down, go back if you need to and understand why what is happening.
thanks

Cocolepew Thu 21-May-15 21:58:42

I would ask your gp for a referral to a rheumatologist and an endocrinologist.

Some auto immunes can appear after other illlnesses, stress, operations etc.

PacificDogwood Thu 21-May-15 22:03:38

Yep, rheumatology to check out possible auto-immune diseases.
Waiting time here for new patient appointments 10 months hmm

RawCoconutMacaroon Thu 21-May-15 22:11:34

Have you had a blood test for coeliac? Thyroid Antibody tests?

Have vitamin d and b12 levels been tested?

If you've already had a ceoliac test and it's negative, you may want to do a gluten free exclusion diet for a month or two to see what happens- maybe something like whole30 or Paleo which cuts all grains (many people react to non-gluten grains too).

Don't cut out gluten if you want to get a test done, as antibodies can drop fairly fast and within 6 weeks or so might drop far enough to give you a negative result.

sammyjayneex Thu 21-May-15 22:14:59

I've had vitamin D tests done on the past year and the first test showed I was severely deficient it was at a 7. Something and he put me on the vitamin D tablets and said this isn't what's making me ill but it ' needs treating in its own right' so I took the tablets for 6-8 weeks but I don't feel any better for it and I had a retest which then came back normal
Vitamin B I'm not sure about ill check my results

Cocolepew Thu 21-May-15 22:15:57

Dont expect a quick diagnosis from rheumatology either, even if it is auto immune.

IsJustMe Thu 21-May-15 22:27:52

Being severely deficient in vitamin D can make you feel dreadful (I speak from experience).

Apart from the TSH test, did they test for thyroid antibodies? I have Hashimoto's, and have all your symptoms.

RawCoconutMacaroon Thu 21-May-15 22:29:36

7! You need to be taking high dose supplements, 10,000 iU for many months. A few weeks won't do it. It needs to be D3, for good absorption.

Vitamin D deficiency is often a sign that things are going wrong (ie part of a problem, not the only problem). I would in your position push strongly for a Ceoliac test and a thyroid antibody test.

If your Gp isn't keen- you could change your Dr or get them done privately if you are able to do that smile

mamadoc Thu 21-May-15 22:57:31

Can I just clarify that my mention of 'all in the head' was in the negative. I said that I am NOT saying that.

By all means you can ask for a rheumatology/ endocrinology referral. A Dr won't mind you being honest and just saying 'I've been doing some reading and I wondered if these symptoms could be down to an autoimmune condition?' Your GP can order inflammatory markets eg ESR and CRP and an auto antibody screen and this would rule out most things without needing to wait a long time for a referral.

I am a psychiatrist so of course I am biased but I wonder if you would consider if there could be a psychiatric/ psychological explanation? Body and mind are not separate. Anxiety and depression have very real physical consequences. Anxiety can cause diarrhoea, stomach cramps, breathlessness, tremors, pins and needles, acid reflux, dry mouth, palpitations and a whole lot more. It is because of adrenaline release so it has a physical mechanism.

You could view it as a trial and just see if taking an SSRI antidepressant for 6 weeks could help you. If not then fair enough but it's an easy thing to try and maybe it will help. (You do need to give it a decent try though. It won't work immediately). Or if you are not keen on meds then CBT. You could do this whilst still pursuing referrals and investigations.

(Disclaimer: I would not suggest this as a first option only after investigations have been done as in OPs case.)

sammyjayneex Thu 21-May-15 23:08:39

Can i ask what does ESR mean?

I think that when the doc was referring me for a chest xray he wrote on the form
high ESR? something like that what could it mean?

mamadoc Thu 21-May-15 23:12:18

Erythrocyte sedimentation rate. It's a measure of how 'sticky' your blood cells are. It's a marker of inflammation. It is not specific. The commonest cause of it being raised would be an infection but then it should settle. A sustained rise might suggest an autoimmune condition.

hellomynameis Fri 22-May-15 00:46:11

Medically unexplained symptoms exist.

A rheumatologist is not the answer.

This is not lupus or Sjogrens.

Unfortunately sometimes the only answer is learning how best to cope with symptoms.

Sometimes this can mean Cbt and other psychological therapies.

sammyjayneex Fri 22-May-15 01:13:14

@hellomynameis

It's easier for her people to Say 'try to learn with the symptoms' it's not as simple as that. I don't believe that their are symptoms that just Happen. I think there is a reason but it hasn't been found. When your body has symptoms, it means it's trying to tell you something isn't right, no amount of psychological treatment will make the physical symptoms go away.

sammyjayneex Fri 22-May-15 01:13:47

@hellomynameis

It's easier for her people to Say 'try to learn with the symptoms' it's not as simple as that. I don't believe that their are symptoms that just Happen. I think there is a reason but it hasn't been found. When your body has symptoms, it means it's trying to tell you something isn't right, no amount of psychological treatment will make the physical symptoms go away.

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