mum not well - doctors not seeming to get to the bottom of it....what to do?

[JandLandG]

Hi there, some advice/thoughts/experience on this subject if possible please.

My mum's in her mid 70s now, getting older obviously, but should still be going strong.

In great health really until 2 years ago when she suddenly lost all energy, felt tired, listless, knackered at the slightest exertion or outing.

She describes it like ME.

Anyway, she's been to her GP naturally who has referred her on to heart consultants. She's already on statins and other things for her blood pressure.

But after dozens of appointments, no one seems anywhere near the bottom of this problem. She's frustrated and I am too.

I'm sure they should have been offer something, either treatment or meds, that will help her regain her former energy.

Anyway, I'm furious really....this woman was a heroine of the NHS in the 60s/70s/80s as a ward sister of a busy city hospital and now there seems that nothing can be done to help her. They had her on an exercise treadmill last week and it'll be another 2 weeks till they get back with any news....

Is there a way I can simply pay for a private company to look into this?

I dont subscribe to the idea of private medicine, but We're making no progress, my mum's unwell, unable to interact with her friends and grand children as she used to...I feel there's no other option.

Any thoughts?

Ideally, I'd get a Bupa or whoever to view her medical records, then act from there, quickly, to get to the bottom of this and then get her back to her former self.

She's 70odd but previously in great health and I'm absolutely sure she can regain her former energy.

I wont give up on my.mum, but I have a feeling the NHS is letting her down....

It sounds like they are still trying to identify the problem though? Some things are hard to diagnose and actually ME is (I believe) still a diagnosis of exclusion, so it takes time to rule everything else out. However It might be worth asking for a review from her GP or a second opinion from another GP, just to check there isn't something else that could be suggested by any test results that possibly needs referral to a different specialist for further investigation. The problem with going private is that it would often be to a consultant in a specific area of expertise, so they wouldn't necessarily pick up other aspects outside their field. It must be very difficult for your mum and hope she gets some answers soon.

Who else has she seen apart from
a heart consultant?
I'd keep going back to the GP (go with her) and say "right well it's not her heart, who else can she see?"
Has she had her bloods done, all the obviously signs for cancer looked for etc? Thyroid checked? Iron levels ok? Don't let then fob you off with it being old age if it's come on quickly and is completely out of kilter with how she was before.
You can go private but it will cost you a fortune because it could also take them months to find out what's wrong.
I would persevere with the GP, or ask for a second GP opinion if you really feel like you're getting nowhere. But don't give up. My DM was misdiagnosed with aches and pains and actually had rare cancer. I wish we had kept going back

Yes it's not good having something very serious but very rare Oly, sorry to hear that Definitely worth keep pestering Jand and Oly's idea of going with her to the GP is a good one- she may not be emphatic enough about how bad it is.

What blood tests has she had so far?

Have they done blood tests? Low sodium and pernicious anaemia are problems my parents have suffered from, both of which caused very low energy levels. Low sodium caused by fluid tablets in conjunction with blood pressure tablets and a bladder infection. Ironically her neighbour had this as well and can be very dangerous.

What's causing her high blood pressure? Understanding that might help you further get to the bottom of it.

Keep pushing and yes pay for private if you think it would help.

Also there's a possibility that your mum does know what it is but doesn't want to tell you. I'm sorry to raise that but she may be wanting to protect you from something.

Has she had the following tested:
Vitamin D, Calcium, Parathyoid (PTH). And B12.

Well worth having the levels checked. Get the actual numbers, ie not just reference to range.

This happened to my mum at 73.
She had tiredness, lethargy and slept all the time. It went on for about 18 months.

Blood test after blood test revealed nothing until a GP did a vitamin D test. She was so low it was scary.

She was put on high levels and she returned to her old self quite quickly.

Vitamin D deficiency is not routinely tested, you have to specifically ask for it.

If she's not been tested it might be worth asking.

Thank you sooo much for all these.

Really very much appreciated.

I think everything you've all mentioned has been covered, asked about, chased up, done. Second opinions included.

Its taking so long though.

Another 2 weeks. Nearly 2 years in.

All bloods, done, ecgs,

I dont care how much it costs, i would just like a proper overview and expert opinion given.

I'm not saying everything can be identified and diagnosed and cured, but this has gone on so slowly for so long...

My poor mum...i feel powerless...and i think she does too.

My dad passed away a long time ago and i'm no longer nearby...she deserves better...

My best friend was in a similar situation - it turned out that her mum did know, she was just protecting her from the bad news whilst she came to terms with it herself. I really hope this isn't the case with your mum, but are you sure you aren't intruding?

As far as the testing goes - they are doing something. They will rule out the most likely cause and work from there. They simply cannot test for everything straight away as it would be so costly - it's a process of elimination usually.

I hope your mum gets the answers she needs and gets back to her usual self soon

Keep on plugging away at it, and make sure she sees a different GP to her usual one sometimes.

My mum didn't, she kept seeing the same one. She kept on going back with the same symptoms, and the GP probably thought she was a pest and continually fobbed her off. Eventually DH and I made her find out when her GP's day off was, and booked her an appointment to see a different doctor. He rang the hospital with her sitting there - she had an operation two days later. Her regular GP had totally missed the symptoms as they were masked by her 'usual' complaint. A different doctor had no preconceptions and diagnosed her almost immediately. Trouble was, the cancer had already spread too far by then.

Your poor Mum. It might be worth considering that her problems are actually side effects from the medicines she is taking. Statins have side effects very similar to the symptoms you are describing (Look on WebMD.com). If you wanted to see if they were effecting her, you could ask her doctor for a fortnights trial without them and see if there was any improvement. If her high blood pressure medicine is a beta blocker, that is another culprit for nasty side effects, I know about those from personal experience. Beta blockers you have to wean off slowly, but there are several types that you can try and one will often have fewer side effects than another.

Apart from that I can only suggest tests that you have probably already tried, vit D, thyroid, iron, B 12, and echocardiogram.

Statins and treatment for blood pressure can make you feel weak and wiped out.

Personally, I'd dump the statins. If that sounds a bit drastic, it would be worth looking at when things changed and whether there might be a connection.

However, statins in his fifties as part of an after stroke protocol, even though his cholesterol was fine, turned him into an old man overnight. He tried a couple of types, but gave up on them in the end. His GP said he would die if he didn't take them. Ten years later he's fitter than he's ever been.

You will have to think outside the box on this one.

Just another idea but it might be worth asking the hospital pharmacist or a (fully qualified and registered) community pharmacist to review all medications for possible interactions. They know far more about drug interactions than most Drs, and the full records aren't always available to be checked everytime a new prescription is issued.

I ended up going to see a private doctor, just because I was tired of feeling so bleugh and the GP telling me I was depressed when I wasn't.

Private doc was really good. The blood tests were expensive, but he'd homed to what he thought it was and lo and behold he was right. It's taken a while but I'm so very much better now.

I hope your mum can be helped.

I second a pharmaceutical over-view. Both my late parents were on a cocktail of drugs (although it doesn't sound as though your mum is taking a cocktail exactly) and the inter-action between them was causing multiple other issues.

Once both had had a full medication review, and at least 3/4 had been phased out, their overall health saw a great improvement.

I have M.E along with Fibromyalgia, Arthritis & Hypermobility Syndrome. I'd be happy to discuss via PM? Compare symptoms and recommend some things that helped me? X

Once again, thank you all so much for taking the time to offer your insights....let me digest and get back to you...some new things here so we'll see how we go.

Thanks again; v much appreciated.