To tell my mum's doctor that she is wrong!

(34 Posts)
Lucyellensmum95 Sun 03-Mar-13 19:09:43

Nicely of course! But i think that we have all been barking up the wrong tree with my poor mum. She has a complicated medical history (addisons syndrome following bilateral adrenalectomy for any medics out there) and high blood pressure.

Her blood pressure has been stupidly high and they are struggling to get to grips with it. She recently changed doctors because her old GP got sick and took lots of time off so i was able to persuade my mum to change to my GP, who is a bit more switched on, and more importantly, local to my mum.

For the past 6 months my mum has been suffering dizzy spells, it has got to the point now that she can't walk very far and is now scared to go out. She is 73 and has been healthy up until now. Apart from the addisons. She says her ears are really uncomfortable and she gets fluid coming from them - i googled her symptoms and it all fits with labarynthitis. But because of her addisons and blood pressure the doctor seems to be dismissing this although i have not asked if she thinks it is this. I really think it could be.

We are awaiting results of some bloods taken by the endocrinologist to assess her steroid replacement therapy and a routine MRI.

The thing is, i think the high BP and the addisons are clouding the issue and that it really could be as "simple" as labaryhthitis

I can't stand people who google and then pitch up at the doctors saying "oh i think i have xyz" but i really think this should be considered. I have lived with my mums addisons for all my life and she has had this for 58 years so she knows what it does and this has never been a symptom. I am not saying it coudlnt be this or her blood pressure but i really dont think it is it. I do have a medical background (biochemistry)

Do you think the doctor woudl be offended if i said, look, i really think we need to look at this? My mum is getting increasingly depressed and im honestly worried i will go round there one day to find she has taken all her tablets sad

Yfronts Sun 03-Mar-13 19:12:54

Can you email him?

poppypebble Sun 03-Mar-13 19:23:15

In my experience the dizziness associated with labyrinthitis is different from other types of dizziness. Can your mum describe it?

I have experience of it not being diagnosed - I spent 3 days in hospital being treated for diabetes before they realised it was vertigo caused by labyrinthitis.

FanjoForTheMammaries Sun 03-Mar-13 19:24:49

I would ask to have a chat with him.

ClayDavis Sun 03-Mar-13 19:26:24

You won't lose anything by asking(politely obviously). It is possible that he hasn't ruled out labrynthitis and is keeping it in mind but needs to rule out more serious issues first.

Lucyellensmum95 Sun 03-Mar-13 19:28:47

Why the assumption that my mums Dr is a he? I said she is a she grin

poppy I think this is part of the problem - getting her to describe it accurately as it changes every time confused She calls it "giddy" not dizzy. It tends to happen when she is walking and now she says she can't walk fast. Its not a bp drop because they have tested this and also it doesn't happen until she has been walking around a bit. She says she feels light headed and the other day she said that everything seemed tilted. She feels as if she is going to lose her balance, although she hasn't done this yet - she tends to stagger - although ive never seen her do it, becaue she feels it and then stands still. How does it make you feel?

landofsoapandglory Sun 03-Mar-13 19:30:05

If you have got labyrinthitis, you don't have "dizzy spells".

Imagine being on a rowing boat, bobbing up and down in the sea, or spinning round on a fairground ride. You feel like that, even with your eyes closed.

FanjoForTheMammaries Sun 03-Mar-13 19:32:04

I didn't assume,I misread and thought you said he.

My own Dr is a she,and most of the GPs I see are women.

poppypebble Sun 03-Mar-13 19:33:05

Sounds like it to me, Lucy. When I'm having a vertigo attack and walking I feel like I am walking on a lurching ship. It was so bad once I broke my wrist just walking along the landing to the loo to throw up. If I'm lying down it is like I'm on the waltzers at the fair and can't get off. I don't feel like I'm going to faint - I've had that before with low BP, but it really is a different feeling with the ears, just perpetual motion.

PerditaXDream Sun 03-Mar-13 19:33:42

I'm not medical at all but my mum was getting giddy spells recently after having a stroke - when we discussed with her doctor, she (dr) suggested it might actually be a side effect from the blood pressure pills my mum was on at the time.

Could this be another possibility in your mum's case OP? If they've been upping or changing blood pressure meds to keep that down?

Lucyellensmum95 Sun 03-Mar-13 19:43:39

PerditaXDream - it could be and we lowered a tablet to see if it was that, the problem is, my mum regularly has BPs of 250/150 (ish) so there is a reluctance to reduce.

She can't go on like this sad

Landofsoap, sometimes she says its like that, sometiems she says it isn't.

poppypebble Sun 03-Mar-13 19:47:07

It could be vertigo caused by an initial labyrinthitis. I've had 3 episodes that have left me in hospital, but apart from that I just feel constantly like I'm on a train. I still go to work etc but just feel like I'm constantly moving. I had some vestibular rehabilitation and that made a big difference and as long as I avoid sudden head movements I can usually cope without needing to lie down.

apostropheuse Sun 03-Mar-13 19:54:37

When I had labyrinthitis it was much more severe than dizziness, which I do get when my lungs aren't great.

The labyrinthitis felt like the room was literally spinning round. If I lay down and closed my eyes it was still there - but not as severe.

The problem is, there are many things which can cause dizziness - sometimes a combination of things, e.g.

I hope you get to the bottom of your mum's troubles.

meddie Sun 03-Mar-13 19:56:08

6 months seems a long time to be suffering from labrynthitis. It usually burns itself out in about 2 to 3 weeks as its mainly caused by a virus. Its often accompanied by nausea as well.
Has she had an ECG?. Abnormal heart rhythmns can also cause episodes of light headidness and are not uncommon as you get older.Does she feel any flutters when she is having these episodes?
It could just be due to her High blood pressure though as one of the symptoms of high BP is dizziness/headaches

apostropheuse Sun 03-Mar-13 20:00:17

didn't finish my e.g. ....sorry

I was going to say: e.g. I have medication I take due to pulmonary oedema. The medication can drop your potassium levels, which can make you dizzy. The pulmonary oedema itself can make you dizzy as it restricts oxygen flow. The blood pressure can be dropped too much by the medication which you take for the pulmonary oedema, which can also cause dizziness.

I think you could be right that they may be looking in the wrong place, presuming its from the "obvious" when it may not be.

Lucyellensmum95 Sun 03-Mar-13 20:00:53

meddie, thats a point i suppose. Yes, she does have a abnormal heart rhythm - an inverted T wave, she had a 24 hour tape done but not had the results from this and its been a while, but distracted by other stuff, will ask the Dr to chase this (it was months ago). She does get headaches - im really worried sad

rainbowrainbowrainbow Sun 03-Mar-13 20:04:36

Does the dizziness make her feel very tired? Nauseous?
Any tinnitus, hearing loss?

rainbowrainbowrainbow Sun 03-Mar-13 20:09:59

There are I think around 350 causes of dizziness, a specialist referral may be needed if you can get gp on board.
The man in the uk to see is Dr Surenthiran, awesome balance disorder specialist. If he doesn't know what it is noone will.
He is based at Medway in kent but can see him privately in other locations inc London.
Your mum might have a migraine variant balance disorder from what you descrive if ither causes are ruled out

HazeltheMcWitch Sun 03-Mar-13 20:11:40

Oh, OP. Thing is, we will not really be able to diagnose over the internet, as you know. But as someone with about 10% of adrenal capacity left, I will say that there is NO WAY that an Addisonian should be having dizzy spells for 6 months. It could be one of a few Add-related things, or it could be totally unrelated. But she should not be having to chase things up.

WHen is she next seeing endo? When are results due back?

Lucyellensmum95 Sun 03-Mar-13 20:22:16

oooh rainbow, we are in kent!!! I may well ask if we get that far. We are seeing endocrinologist in april Hazel - and yes, of course not really looking for diagnosis here and from things said, im not 100% sure whats going on. She used to have several addisons crises and the dizziness she describes now is just not the same as what happens when she is "low". She has just had MRI (she has pituitary tumour - benign, cause of the cushings and removal of adrenals) to make sure this hasn't grown (i am a bit worried this could be the cause sad ) There are just so many things it could be, her GP admits to being puzzled but my poor mum can't go on like this.

Also, she is now just giving up and saying she doesnt' wnt the back and forth to the docs.

Her MRI was friday, she had cortisol tests etc about a month ago, STILL waiting on the blood results but to be fair GP wont be able to interpret so will need to wait for endo. My gut feeling tells me this is an unrelated thing though.

rainbowrainbowrainbow Sun 03-Mar-13 20:48:48

The ear symptoms along with the dizziness are what strike me as making it something possibly balance disorderish.
Many patients with balance disorders suffer depression or anxiety, I think in part due to the difficulties faced trying to do everyday things, and their symptoms not being taken seriously or treated appropriately. Balance disorders can also cause problems with short term memory, don't know if this is a problem for your mum.
I've had dizziness/tiredness/feeling low for over 4 years but dr surenthiran has given me a diagnosis and treatment plan recently that I hope will help in the long term. It must be terribly hard for your mum along with her other problems to have to cope with. Honestly if gp admits to being stumped I would seriously consider pushing for a referral, trust your gut feeling.
Worth knowing that lots of ent specialists aren't v good at diagnosis and treatment of balance disorders, as I found out along the way to dr S.
It's grim and scary feeling dizzy all the time I know, your poor mum

HazeltheMcWitch Sun 03-Mar-13 20:51:09

Sorry, not trying to teach you to suck eggs re internet diagnoses! Good that she's had MRI then - any growth of pituitary tumour will jump straight out, and can be picked up ASAP. Chase on this on (eg) Weds if you've not heard back, and if no results through, find out when they will be, and keep on chasing.

1 month for cortisol tests is not on. Really not on is waiting until April. I'd chase this hard. Can you tell I chase for tests, a lot? WHat test did she have, do you know?

Some of the things you say: dizziness, light-headedness, tiltedness - are words I'd use when my cortisol is out of whack. Also, I would get low, and feel like I just can't be arsed. Not depression, more like inertia.

but the fluid in the ear, i can't really think of a Addy reason for this. Can you go back to GP - or drop in centre - and get them to look at her ears and advise if infection looks likely? Does she have any hearing loss, by the way?

I do honestly think it's worth going back to docs. She would not want you to be dizzy for 6, 7, 8 months, so there is no reason she should.

HazeltheMcWitch Sun 03-Mar-13 20:54:33

Sorry - forgot to say - endo may not have sent tests on if they are normal (perhaps), thinking that it was just a routine monitoring. They might not know/remember that the bloods were also a stage in diagnosing what's causing the dizziness, so tracking down those bloods is - I think - a job for tomorrow.

Lucyellensmum95 Sun 03-Mar-13 20:59:59

I cant remember what tests she did have hazel - for some reason i think they were testing FSH and LH but i think i must be dreaming tht as not in a 76 year old woman surely? I know its all joined together in feedback loops etc. Will definately chase up this resullt thouh - GP expressed surprise over this. To be fair though, these latest symptoms don't tie in with her addisons at all.

She is currently taking Hydrocortisone - 30mg in morning 10mg in afternoon. Fluourinef - 5mg i think. They just reduced her HC by 10mg.

My mum has just gone from being mental fit for a 76 year old to being an "old lady" in six months. I don't think this is going to end well sad She is so unhappy

Lucyellensmum95 Sun 03-Mar-13 21:01:23

I am working tomorrow but we will go to docs on tuesday - my mum never really understand what the doctor tells her i am a control freak so will take her then.

apostropheuse Sun 03-Mar-13 21:07:08

Does a pituitary tumour affect FSH levels? Might that be the reason for testing her - even at her age?

Just a thought.

Lucyellensmum95 Sun 03-Mar-13 21:25:50

yes it would, so i suppose would give indirect suggestion of if tumour has changed at all. good point But worrying sad

HazeltheMcWitch Sun 03-Mar-13 21:29:42

My mum has just gone from being mental fit for a 76 year old to being an "old lady" in six months. I don't think this is going to end well

I do understand, and I REALLY empathise with you. I went from being a 30yo to an old lady in similar time. COuldn't even climb stairs without having a sit down. Mid-way. Thought my life was over. Since getting sorted, am literally transformed. Am 'normal', have become a mum, etc etc. I am not the same person - yet obvs I am. So please try to not worry like that.

FSH and LH are as you prob know secreted by pituitary. So it looks like they're checkign up well on the pituitary. I'm more alarmed (could be massively wrongly as I am no expert!) but the cortisol. She's had her HC meds reduced, was this by the GP? As I could feel as your mum describes when my cortisol needs upping... either generally, or specifically if I am fighting off infection. I'd push for her cortisol levels to be checked asap.

Totally fair enough to ask - if there's a sensible reason why the doctor thinks it isn't labyrinthitis then she can give it and your mind is at rest! If it could be, then the doctor can explain why they haven't yet pursued that option/etc.

FWIW as a vet I never mind people googling/asking questions as long as they don't argue the toss with me (in a manner of google knows more than you IYSWIM, don't mind reasoned discussion obv) too much if/when I explain that that isn't the most likely option. I've had two people recently come in with pets that have a serious condition - already diagnosed by google magic grin - I'm sure they brought their pets in faster once armed with that knowledge so that made me happy. I've also had a man come in demanded that his dog is tested for lupus (it has been seen twice for itchiness, once was proven fleas, other like allergy) - he wouldn't have it that it was extremely unlikely (hadn't seen House, obviously). And other bizarre google incidents. So it can go both ways, I just like to have engaged, actively interested clients in the main.

mutantninjamyrtle Mon 04-Mar-13 00:30:14

OP, I can see they want to reduce her HC as 40mg daily is rather a lot and will weaken her bones over time but more importantly also raises blood pressure... BUT not in the face of the fact she is under stress from an undiagnosed illness that is causing her to be disorientated, so she really does need to keep her HC up till that s sorted.

I have secondary adrenal insufficiency as my pituitary failed after giving birth - in my experience, endocrine issues are woefully misunderstood by GPs, nursing staff... I could go on. Yes, the steroids are pushing up her bp but the endocrine issue is a red herring. The steroids (and so bp) are up as something else is wrong. The MRI will make sure the tumour isn't growing and causing the dizziness, so I'd push for this to be done asap. After that you can consider other things. Can you get on the phone to the hospital to expedite the scan, given ehr history?

bingodiva Mon 04-Mar-13 01:12:51

has the doc done a 24hr urine test? very high blood pressure/headaches/dizziness can be caused by pheochromocytoma's (adrenal tumours) or paragangliomas (they cause the same symptoms as pheos but can be found nearly anywhere in the body especially in the neck/liver). an endocrinologist would deal with either of them.

bingodiva Mon 04-Mar-13 09:58:47

i meant to post this yesterday - you said earlier your mum couldnt walk fast and everything felt titled. i felt like that for 2 years and still do very occassionally now - I had lots of other symptoms but none of which sound like your mum has. i felt like the room was spinning, i could be lying on the bed but felt i was going to fall off it was that bad. we were on holiday and walking along the beach but the flow of the water made me feel like i was going to be sick and fall over. if i walk fast i feel really strange, cant describe it really but if i go slower im fine.

when we came back from hols I went to doc and due to some other issues i was experiencing and asked for metronidazole only because of my other symptoms though - one of the things it did do though was stop my dizziness after taking it for 2 days. unfortunately the dizziness came back slowly over the course of about a month so i got some more metonidazole and again it went - this pattern continued but the time it took for the dizziness to come back always got longer but after taking about 7 courses of these antibiotics it has stayed away in the main but i still get dizzy spells very occassionally.

after seeing three difference consultants and telling them the metrinidazole stopped the dizziness they didnt believe me as its not an antibiotic which is meant for dizziness - pissed me off that they were accusing me of lying as i had no reason to, i was happy it got rid of whatever was causing the problem.

sorry its a bit of a long post...

pmcblonde Mon 04-Mar-13 10:54:15

It could be Labrynthitis or Menieres or MDDS - all different sorts of balance conditions, all dealt with differently. Or it could be something else. My husband has MDDS and it's a miserable condition. It continually feels as though you've just stepped off a boat after a rough crossing and can't find your land legs. It's neurological rather than physiological like an inner ear condition

HazeltheMcWitch Wed 06-Mar-13 00:00:23

Lucyellensmum - did your mum get an appt, or get her MRI or bloods details back yet?

Hope all's well.

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