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to think I'm ill NOT mad.

(27 Posts)
SlowlyWakingUp Fri 05-Apr-13 11:30:39

I have been through 8 years of hell. It all started just as we emigrated abroad, which I was so excited about, with my periods going nuts, me suffering mini 'blackouts', aching limbs, pins & needles, palpitations, shortness of breath, constant dizziness and extreme exhaustion. I even went to the ER on one occasion as I was sure I was having a heart attack. They dismissed it as 'anxiety' and gave me anti ds, which I did not take as I did not believe my mind could be manifesting all this!

Months later, I was told I had a goitre in my neck (after a scan) and was then given thyroid medication due to having suspected hypthyroidism and within a week I started feeling much better. The country I was in at that time diagnosed on symptoms, not blood tests which can be inaccurate, unlike this country. By this time I probably had developed anxiety due to fear of my symptoms and had taken such a massive knock to my confidence as I could not believe I was so 'weak' that we had already decided to come back to the UK as I felt too vulnerable living without any family nearby with 3 small DC as DH would be travelling up to 3000 miles away for weeks at a time.

So anyway, I had been given 3 months worth of pills and they ran out soon after we came back here so off I went to my new UK GP expecting to be given more but he said he would do his own tests and of course they came back clear so I was again diagnosed with 'just' anxiety and GP would not prescribe thyroid medication despite my insistence that I had been feeling better. A plethora of GPs have seen me since then and I have been diagnosed with OCD/depression/anxiety/PTSD etc, etc, basically I feel like a complete 'headcase' and have completely lost the old me as I have just fallen apart due to the fact that I keep on being told that I have a 'mental illness'. I have spent thousands on private counselling, CBT, hypnotherapy, massage and although I have discovered that I am in fact an extremely strong person (was abused as a DC/suffered loss of my own DC), these symptoms have never gone away. My hair also is very thin, my skin splits and bleeds and I have become very fat!

I have lost jobs over this fgs! In my last job which was very high profile, I used to hide in the toilet with my head between my knees due to the constant dizziness and eventually resigned. Last year, I was urgently sent to hospital as my cortisol levels were found to be non existent after a blood test and I had to have further endochrinology tests which came back clear but they cannot explain why this 'emergency' happened and it is 'nothing' apparently. My instinct tells me that there is something physically wrong but I am never taken seriously. Just recently had another basic thyroid blood test which has come back clear and I have just finished a course of hypnotherapy especially for 'anxiety' which cost me £400 and I feel no fucking different. Ooooh I want to scream!!!!!

I am seeing an NHS psychiatrist every 3/4 months which I requested but they have not organised any treatment for me at all and just ask 'how are you feeling?' ME: 'The same' Them: 'OK, well come back in 3 months'. I mean FFS! My life is a waking nightmare - I worry that I will faint, collapse, die or just lose my mind all day due to constantly feeling like I'm on a bloody rollercoaster and that's all they can offer me.

AIBU and just in denial that I'm a neurotic freak? I so don't want to be, I just want to feel normal. Tears of frustration are pouring down my cheeks as I type. I don't know what else to do, PLEASE tell me wwyd?

trinity0097 Fri 05-Apr-13 11:33:46

Pay for a private doctor to prescribe the drugs you were taking! Can't be more expensive than all the other things you are paying for!

Feminine Fri 05-Apr-13 11:35:34

I'm so sorry.

some of your symptoms are common with anxiety. Your situation sounds much more dire though.

I'm sorry I have no advice.

One thing though, you don't consume large quantities of artificial sweetener do you? That can cause the symptoms you are talking about.

I'd find a new doctor and start from scratch. That is my opinion.

flowers

gobbledegook1 Fri 05-Apr-13 11:39:15

I agree, second opinion or go private if you can afford to.

LaurieFairyCake Fri 05-Apr-13 11:41:29

God, I wish you'd posted before spending all that money. Thyroid tests are notoriously insensitive, it only has to be a tiny bit out for YOU to need a tiny amount of medication.

I second get a private prescription - you can do it all online. The question doctors should ask is 'what harm can this medication do' not look for a mental health reason all the time.

IShallWearMidnight Fri 05-Apr-13 11:42:39

has anyone considered POTS? An easy at home test to do:

lie down for a while, then take your pulse.

sit up, take your pulse again

stand up, take your pulse again.

If your pulse rate goes up by more than 30 bpm within 10 minutes of standing, and/or your symptoms get worse on standing, then it's something to consider.

An awful lot of people with POTS spend years being misdiagnosed with anxiety, stress, CFS, IBS btw, it's not something your average GP will know about sad.

DD2 has all the things you mention in your first paragraph.

Mumsyblouse Fri 05-Apr-13 11:48:17

Pay privately to go to a clinic which specialises in endocrine disorders and get them to do everything. Bypass the NHS who have very efficient gatekeepers in the form of GPs who are not specialists and also don't necessarily understand how to read tests that are borderline-thyroid problems are particularly susceptible to being matters of opinion and often one GP will give tablets when another won't and so on. Or go abroad, to an Eastern European country which often have excellent health-care facilities privately and are cheaper, and get every test done possible, then use these results to come back again and request treatment.

Then at least if you have had the battery of tests you know whether you have an endocrine disorder and where to go next. Or as someone else said, just pay for your prescription privately.

Susandeath Fri 05-Apr-13 11:52:21

Have you been tested for coeliacs disease? I am having tests for this at the moment, my symptoms: anaemia, pins and needles, breathlessness, bloating / put on weight, have a look at the Boots WebMD, www.webmd.boots.com/a-to-z-guides/tc/gluten-intolerance-symptoms-of-coeliac-disease

I think I have had this for ages and not realised. Been on anti-depresants for 3 years because I felt so crap, however iron tablets made me feel so much better and I am almost off the anti-depressants. Keep at the doctor, make them take you seriously. I know it's hard when you feel so crap. Hope you feel better soon.

Lucyellensmum95 Fri 05-Apr-13 11:54:27

I suffer from "just" anxiety - and I am ill, not mad! hmm neither am i a neurotic freak - and neither are you!

The thing is, anxiety can cause all of the symptoms you have described and i believe i have had pretty much all of them. It is as much a physical symptom as if they were caused by something more concrete or understandable. It isn't "just" anxiety and the symptoms are not in your head, they are real, but they are caused by anxiety - being anxious causes all sorts of physical changes in your body - increased adrenalin leading to increased steriod production, that pit of the stomach feeling, pins and needles, palpitations to name but a few. Decreases in neurotransmitters such as seratonin and dopamine, all connected with the anxiety and it becomes a bit of a vicious circle as all these things feed off each other. The skin and hair could all be connected.

Have you taken any of the ADs suggested?

I know this is probably not what you want to hear but i really think that you have "dismissed" mental illness as not being real, if that makes sense and of course your symptoms are very real and debilitating. It sounds like you have had a lot of sadness to deal with in your life - and it takes its toll, phystically.

If i were you i would insist on seeing an endocrinologist for a full blood work up, however, hyperthyroidism would definately show up on a blood test that i assume the doctors have already performed. I think in light of the scan results i would want this thouroughly investigated. The thing is, i suspect (im not a medic but biochemist in a past life - one before anxiety made me a "neurotic freak") you felt better on the thyroid meds becaue they will have affected all of the system i spoke about above, indirectly.

Trinity - there no point in paying for a private doctor to prescribe the drugs the OP was given before, no doctor will (or should) prescribe meds that are not appropriate, no matter how much you pay them!

I would however, if i had the money be looking for a private consultation with an endocrinologist, just to rule things out or in. But please don't feel fobbed off with a diagnosis of anxiety - it is as real an illnesss as hyperthyrodism and will respond to the appropriate treatments, its just harder sometiems to find the right one.

Lucyellensmum95 Fri 05-Apr-13 11:58:22

I agree with mumsy blouse though - Endocrinology is bloody complicated and most GPs don't know how to interpret the results. I know this because my mother has a complicated endocrine condition and her GP will not make any decisions on her medication without first running it past her endocrinologist - this is how it should be. For years my mum had a GP that winged it (imvho) and now she has one (mine) that is doing her job properly and we are finally getting her stable.

Mumsyblouse Fri 05-Apr-13 12:00:09

Lucyellensmum I agree completely with what you have written, the thing is that symptoms such as the ones you describe would set off anxiety and then it becomes a vicious circle. I have a friend this happened to and whilst there is a physical concrete cause to her illness, there's no doubt that the anxiety and stress is driving her feeling so bad, not the symptoms themselves.

So, your treatment for anxiety will not be useless, even if you are suffering from a physical illness because physical illnesses can make you very anxious and out of control.

Of course you should seek a further diagnosis, not by a GP, to rule things out but even if they were ruled in/out, this would be a very stress-provoking time and so I think learning to manage some of those symptoms would not be a bad thing.

Mumsyblouse Fri 05-Apr-13 12:00:53

Ohh, I'm glad we agree with each other Lucyellensmum! Crossed posts

Lucyellensmum95 Fri 05-Apr-13 12:02:11

Ishallwearmidnight - wow - thanks for the POTS link, this is very pertinent to my mother just now, it literally describes everything she has going on just now and that i think is being missed due to her endocrine condition which is a long term thing and of course the first thing the doctors are focusing on. Will ask about this the next time she goes to the doctor

Lucyellensmum95 Fri 05-Apr-13 12:05:27

Mumsy - your last post is right (i think smile )

The problem is that the symptoms would probably be exactly the same if they were caused by anxiety or something else such as a thyroid disorder. And like you say, vicious circle - anxiety breeds anxiety, whatever the underlying cause.

Snoopingforsoup Fri 05-Apr-13 12:37:08

I would ask the GP to ensure they've done the full blood test.
I can't remember the ins and outs but often they only test one hormone and often consider the results normal. If they do a thorough blood test, it shows two sets of results and this is where hypothyroidism is picked up.
I don't want to give you false hope, but research this and ensure your tests have been done properly.
Hypothyroidism is a bugger to live with. Even with Levothyroxine the symptoms don't completely resolve.
I would also l

Snoopingforsoup Fri 05-Apr-13 12:39:56

I would ask the GP to ensure they've done the full blood test.
I can't remember the ins and outs but often they only test one hormone and often consider the results normal. If they do a thorough blood test, it shows two sets of results and this is where hypothyroidism is picked up.
I don't want to give you false hope, but research this and ensure your tests have been done properly.
Hypothyroidism is a bugger to live with. Even with Levothyroxine the symptoms don't completely resolve.
I would also look into a private clinic who can rule this out once and for all.
I suffered the symptoms for years before a locum picked up the cause.
Good luck and sorry if this appears twice. Blummin phone!

SlowlyWakingUp Fri 05-Apr-13 12:45:53

lucyellensmum95 please do not take my post the wrong way. I am just ranting and stating MY view of myself since all this started. I am NOT saying that anyone suffering similarly is mad!

I have spent years studying the effects of the nervous system and the flight or fight response and accepted my diagnosis of 'anxiety' which is why I spent so much time in therapy as I am so desperate to help myself and get over this. It has not made a blind bit of difference to my 'symptoms'. This has truly and absolutely ruined my life.

I know the next step will be a private doctor and I am mightily pissed off that I could have used that last £400 on this if I would just trusted my instincts on physical cause instead of my bloody GP! I will have to save up again for more months now sad while still suffering through it. I am just so farking ground down by it!

catsdogsandbabies Fri 05-Apr-13 12:54:35

to be fair the medication for hypothyroidism is not harmless and could exacerbate your anxiety and give you heart disease. So unless your T4 is low you do not have hypothyroidism. Ask your GP for a referral to an endocrinologist. I am a veterinary endocrinologist and although GPs will not be experts here they know a normal and non- normal T4 and TSH. They may not understand other more complex conditions involving cortisol - have you been tested for Addison's disease?
Educate yourself on thyroid disease so you are clear and ask for your results. Dr google will help you here as it not hugely complex. Treating hypothyroidism without blood tests is unthinkable even in veterinary medicine and I am sorry but as a non-specific treatment would make anyone feel a bit better so your response to that is not indicative that you had hypothyroidism.
Do you have a GP you trust that you can see and review all results and discuss your symptoms again, like a fresh start?

catsdogsandbabies Fri 05-Apr-13 12:56:29

en.wikipedia.org/wiki/Addison's_disease
do you have any gastrointestinal signs?

WithASpider Fri 05-Apr-13 12:59:14

Do you know what medication you were taking? I'm borderline hypothyroid with an awful lot of symptoms, but as i fall just inside the GP's 'normal' range they won't treat me.

I'd been like it for years before discovering www.stopthethyroidmadness.com and buying in natural thyroid from Canada. I'm now 3 months into treatment and doing much better.

Lucyellensmum95 Fri 05-Apr-13 13:04:03

OP i didnt take your post the wrong way at all - i am of course barking mad, but that has notning to do with my anxiety grin I totally sympathise and you need answers. Can you ask your doctor to refer you to an endocrinologist again, i think it is unfair that you are having to go private to get this sorted.

SlowlyWakingUp Fri 05-Apr-13 13:14:22

catsanddogs I totally get what you are saying about prescribing without blood test diagnosis and told my GP numerous times that I am prepared to sign a disclaimer. I REALLY am that desperate!

I have had gastrointestinal problems for years as regards to stomach bloating (looks like I'm 7 months gone and I have been congratulated as such!), excessive wind, intermittent stomach upset and burning pain etc.

Can I just say thanks to all who replied. Tears have dried now, I just had a mini meltdown as the realisation hit that the highly recommended hypnotherapy I had put my faith in was all for nothing yet again!

This has been helpful. The POTS one is interesting but I feel the same whether lying down or standing up!

catsdogsandbabies Fri 05-Apr-13 13:28:59

were you tested for Addison's after the low cortisol episode?

Kormachameleon Fri 05-Apr-13 13:35:16

Message withdrawn at poster's request.

Kormachameleon Fri 05-Apr-13 13:38:00

Message withdrawn at poster's request.

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