Please help with sick mum and official complaint - Thyroid UK

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Please help with sick mum and official complaint

Saggyuk profile image

Hey guys

I've now had it up to here with my mum's GP - she's now a walking skeleton with not an ounce of fat left on her and has started struggling to get to work.

This has been going on for months and the GPs etc are totally incompetent. She was initially sent for urgent referral and had a colonoscopy although I shouted at them explaining the pain is within an hour of her eating so not going to be the blinking colon! They said that was all the referral was for and she'd have to go back to GP and start again. They have still refused to do an endoscopy. She's been waiting months again and got sent for just an MRI scan which apparently found nothing and another locum turned round today and categorically stated there's nothing wrong with her and won't refer her again. Not once in all this time has she actually seen a specialist or consultant so hasn't even been able to explain the problems she's having and the GPs are not listening so are not passing the correct information obviously.

She can't eat one tiny amount of fat - literally nothing apart from coconut and I sure it's the pancreas but this diet is not sustainable and cannot go on much longer. It's not even as if she could just wolf down a load a fat and deal with the pain (which is unbearable) as this just seems to stop her digesting anything at all. They've done none of the tests required for chronic pancreatis o reven looked at other issues. She has always been a size 16/18 and now's she's literally a skeleton with size 8 clothes hanging off her - and the GPs (edited) say there's nothing wrong with her - I'm fuming so apologies for the language. She looks soooo ill now and no fat left on her body at all.

Can anyone please tell me the best way to make a complaint for negligence or what I should do next?

None of the tests that might help are ones that we are able to just pay for or do ourselves to bypass them and prove anything so I really need help in kicking up a fuss.

Many thanks for any help, I really need it as so worried for her now and at a dead end.

Sarah

Previous posts about this are here:

healthunlocked.com/thyroidu....

Even though she's gone from size 18 to -8, they haven't even rechecked her thyroid labs. I got them tested a couple of months ago and they were on the high side so told her to reduce her dose but apparently she went back to full dose without telling me as she was feeling so tired so I've told her unlikely to be her thyroid anyway and best to be low than high at the mo with the weight loss so she's back on slightly reduced dose and will recheck at the end of January.

Only other labs at the time unusual a few months back was that B12 was well over range (she's normally low) and folate was deficient. stopped b12 and put her on folate and will recheck.

76 Replies

Has she had her gallbladder checked?

Saggyuk profile image
Saggyuk in reply to greygoose

Hi grey goose - she's had scans and gall bladder problems are more likely to show up on basic scans than pancreas so am just assuming more likely to be pancreas. Gall bladder showed up no stones etc - either way all they've done is colonoscopy, ultrasound of gallbladder and mri and now stated it's IBS!! :-(

greygoose profile image
greygoose in reply to Saggyuk

OK, just sounded like gallbladder, though. :)

Saggyuk profile image
Saggyuk in reply to greygoose

Yes that what I thought initially but have now ruled that out. I wish it had of been to be honest. I've never been referred to a specialist/consultant without having actually seen them or had an appointment and two have done this now so I'm just shocked at this If they saw her, they'd prob see how ill she is!!!

greygoose profile image
greygoose in reply to Saggyuk

Yes, but doctors don't look at patients anymore. They think they can tell everything from a computer screen, like some sort of crystal ball! :(

Aesm profile image
Aesm in reply to greygoose

A few years back I had acute pancreatitis and found to have gallstones, a small one of which had slipped into the pancreatic duct and caused the pancreatitis. Acute pancreatitis is life threatening , and can be diagnosed from blood tests. (I was blue lighted to another hospital) . I later had my gallbladder removed. I think pancreatitis is unlikely as she would be acutely I’ll by now, but it does sound like gallbladder problems....

Saggyuk profile image
Saggyuk in reply to Aesm

There's acute pancreatitis and chronic - the second of which is less acute and can be there for quite some time and this is the one I believe to be more likely :-)

I would urge her to find an out-of-hours GP service in her area, or even go to A&E, especially if she suddenly loses more strength.

Change surgery? Can you afford private? Contact MP and get Mp surgery appt and take mum. General Medical Council? Daily Mail is good for medical stories. Solicitors for negligence. Thompson’s LLC in London might be worth a call.

Saggyuk profile image
Saggyuk in reply to helenshubby

Yes she's going to change surgery but I'm just worried they will take a look at the conclusion of the previous ones and not act x

Chronic pancreatitis would show up on bloods. Acute is life threatening. This sounds gastric. How about crohn’s?

Saggyuk profile image
Saggyuk in reply to helenshubby

Thanks, What blood tests would they need to have done as so far they've done zero- do you know which I could do as from what I've read basic tests often won't show it up as i've done some basic ones although this was a while ago. I can't imagine it's gastric stuff such as chrones as eating completely fat free she's pain free and digestive systems works perfectly. It's been going on since March so doubt it's acute.

Neither of us have much money so private is not really affordable x

Saggyuk profile image
Saggyuk in reply to Saggyuk

I'll do some tests again to see what's changed and might do some of the fat soluble vits as likely low now x

What a rubbish time your family must be having. You could book an appointment for yourself saying how the stress of this is affecting your health too but try to play it cool and with an air of professionalism... By mirroring their attitude I have always done better. Tell them quite matter of factly that you just believe that something is very wrong

but be prepared for the worst as doctors often will open up if you're being very calm with them..maybe they do suspect something...

As to going down the complaints route - I would put it on hold until after a face to face chat with them.. You really need to know what's going on with them first.. If they treat you with disdain then gather evidence including a timeline.. Use only facts and cross-check it with their guidelines..

Saggyuk profile image
Saggyuk in reply to HLAB35

We're in different towns with different surgeries so talking to mine likely won't help. I'll speak to them again but yesterday, they basically told her there's nothing more they can do and it's just IBS and won't be referring her xx

HLAB35 profile image
HLAB35 in reply to Saggyuk

In that case, you may be better off taking her to A&E next time she is bad. She probably needs a barium meal to identify the problem??? In the meantime just keep a record of her appointment dates, symptoms and actions taken.

Saggyuk profile image
Saggyuk in reply to HLAB35

Most of the time she's fine in regards to pain as on a very restricted diet, it generally only happens whens she's been stupid or eaten out which she's now stopped - she just can't go on living without fat as been too long now. I doubt she'll go with me to A&E if she eats fat as she can't get out of bed and just wants to lie there and passes out until the morning - she won't even speak when she's like this. She had a christmas works meal and even though just had the turkey and veg, she wouldn't get out of my daughter's bed after. She's now stopped eating at restaurants as they generally cook with so many bad oils. I will see if she's up for it but she'd be better off eating outside of A&E and waiting half hour as I might be able to persuade her in then. Chocolate/dairy/bad oils does it within half hour rather than an hour without fail so less waiting time I suppose lol!

HLAB35 profile image
HLAB35 in reply to Saggyuk

Definitely a problem with either gall bladder, pancreatic enzymes or liver imho - she must be seen as she's just burning up her reserves rather than absorbing fats. Who would think a GP could miss this..

Saggyuk profile image
Saggyuk in reply to HLAB35

I know - maybe we just need to go private and shove it on a credit card as I can't let it go on - Does anyone know the best way or cheapest route to go private?

Has she been tested for coeliac disease, and had a stool test for irritable bowel disease?

Saggyuk profile image
Saggyuk in reply to Cooper27

She's gluten free anyway as I've been diagnosed with NCGS with a high probability of genetic tendency so my daughter has also been advised to stop eating gluten and as mentioned she has no problem with any food other than fat so I would imagine unlikely to be something like this :-)

Cooper27 profile image
Cooper27 in reply to Saggyuk

I don't think your daughter needs to be gluten free, she just has to be aware of the symptoms and cut it out if they start to come on... 40% of the population carry the genes that cause coeliac disease, but only 1% of the population go on to develop it. And it's only once they go on to develop it, that they need to change their diet.

I think it would be a good idea for you to write out a food diary for your mum and dig out some before and after photos, to go with your complaint letter. I'd definitely complain that they've left her in this way... Are there any other doctors surgeries near you?

Saggyuk profile image
Saggyuk in reply to Cooper27

Hiya yes don't worry, my daughter had blisters just like me, distended stomach that was so large it had caused a huge concern at the age of one, what they had called beforehand "toddler diarrhea" which was foul and stunted leg growth with horrific leg pains and was ghostly looking - just as I was as a child. She improved when I went gluten free as was eating less gluten as I didn't want to cook two separate meals at home and would get worse at her dads at the weekend and it was clear gluten was the cause and when I did three gluten trials later, she did them with me, her symptoms all came back with a vengeance each time so I'm pretty certain she has a problem so she went gluten free after that. The docs said there's no point putting her through the testing they put me through as invasive, took nearly two years, was testing things she has not yet got and is not typical coeliacs anyway and could see in regards to blisters, distension etc before and after gluten trials that she has a problem. It was also proven to have a direct impact on my thyroid and all other immune problems I had. All those who are autoimmune in my family have been told to go gluten free also - some by other docs in the US having no knowledge of this - it quite clearly is a distinct issue in our family :-)

Thanks, yes I will dig out some photos so they cannot dispute the difference. the appointment she had yesterday was the first time they even weighed her :-)

Cooper27 profile image
Cooper27 in reply to Saggyuk

That's ok then! It does sound like gluten was a problem :)

I really hope your mum gets some help soon!

My initial thought was gall bladder,though pancreatitis sounds more likely now. I have diverticulosis and even in a bad flare of diverticulitis I didn't lose much weight, just a couple of pounds.

I think A&E is the only way to go, or a solicitor dealing in medical negligence.

I hate to say this but my dog was ill one morning, refusing food. Saw vet that day, he thought pancreatitis, blood taken, phoned with results within 2 hours. Treated and she's been fine ever since. It's a disgrace that an animal in this country is treated better and more promptly than a human. What has this country become?

Saggyuk profile image
Saggyuk in reply to

She actually did have one tiny pocket in regards to diverticulitis but she's had this for at least 7 years without issues and apparently this pocket or whatever you call it showed up even tinier now on the recent colonoscopy - she also showed zero polyps and adenomas or inflammation which she used to have so has all apparently all cleared up and is as clean as a whistle and her digestive system was the best it's ever been in the past couple of years and the only thing she changed was a gf diet a couple of years ago so can only imagine it was this.

I know it's awful isn't it - maybe I should just take her to a vets :-P

Hi, my husband suffers with chronic pancreatitis and in the days when he had flare-ups (thankfully he's much better now) the hospital would confirm the diagnosis with an amylase test, the results would be back very quickly.

Has your mum tried taking an ox bile tablet when she eats to help digest fat?

Hope you get this sorted out soon!

Saggyuk profile image
Saggyuk in reply to LuckyKat

Thank you, Okay so amylase but I'm assuming only after eating fat or in pain? If so how long after do you think? I could see if she's up for trying but like I said it's so hard to get her out of bed once she's like this.

I did look into digestive enzymes but I don't know enough about them and read you have to get the right amount etc or can do damage to your stomach lining and stuff so didn't want to start or mess until we were sure of the problem. Would ox bile cause any side effects if not needed etc?

LuckyKat profile image
LuckyKat in reply to Saggyuk

Digestive enzymes come in low doses so you could start low and see if they help. Not sure about side effects of ox bile, but I'd have thought they'd only show up if you were taking them to excess or when not needed. A short trial would, I'd have thought, have little negative effect.

Just a thought, and not at all because it's likely, but extreme weight loss is a symptom of pancreatic cancer. I'd throw that at the doctors to make them do a thorough examination to get this properly investigated.

Saggyuk profile image
Saggyuk in reply to LuckyKat

I know, I have been trying but they're the most incompetant doctors surgery I've ever come across and mostly with locums - they couldn't even deal with the basics of thyroid and didn't even request blood tests after six weeks of initial dose and got sorted just because I pushed it. You can barely get an appointment with them and you have to try for weeks.

Angelic69 profile image
Angelic69 in reply to Saggyuk

Does she smoke or take nsaids as these can effect the stomach.

Saggyuk profile image
Saggyuk in reply to Angelic69

Yes she does smoke, I've told her to stop. She had quit for a couple of years as her thyroid presented with her eyes but she started again when this reared up - think just lacking energy or something or staves off the hunger is she's somewhere no fat free food can be found and wasnt organised!

No nsaids at all. She's taken nothing since this started and doesn't touch the pain anyway and never really took them before anyway - not since her periods stopped years ago anyway lol :-)

Angelic69 profile image
Angelic69 in reply to Saggyuk

I dont think they unofficially treat smokers with good healthcare packages as they see it as a waste of resources, they will probably not tell you this but it seems to be obvious by your treatment.

Unofficially our British standard cigarettes have in some areas been replaced by very dangerous cheap counterfeit versions which have very different chemical levels to what we are used too. I have noticed a huge amount of body weight being lost and appetites dangerously suppressed by such cigarettes. No medicine will help unless she stops smoking. I would advise 24 hour clear nicquitin patches. I would expect appetite to return fairly quickly once smoking stops. You mums stomach issues may be the chemicals in the cigarettes. Hope this helps you, good luck and blessings.

Saggyuk profile image
Saggyuk in reply to Angelic69

We smoke old fashioned rolling tobacco and haven't noticed any changes and I'm exceptionally sensitive to all chemicals, I can't tolerate anything unatural - not even sweetners - there's only one I can smoke without becoming ill and coughy lol!

Regardless she only started smoking again once this problem had already occurred but I will definitely force her to quit as not good for pancreas anyway!

Thanks :-)

You can get Lipase on its own as a supplement, too.

There are at least two possibilities. If she’s not digesting fats (gallbladder or pancreas issues) she may show fat in stools, so a simple stool check could confirm that.

If she’s using all her fat storage, she’s probably having absortion problems at small intestine, not sure a simple colonoscopy would show that.

Besides losing weight/fat and having stomach pain after eating, can you think of any other symptoms?

How’s the aspect of her stools?

Saggyuk profile image
Saggyuk in reply to

Before we worked out it was fats - hers stools were very oily, foul smelling and extra floaty - it was quite obviously fatty and it was this and taking note of what she was eating that made me realise it was fats and try fat free as she'd basically stopped eating for the most part until the evening when she could just go straight to bed after. Obviously now stools are fine as not eating fats. However, if she does eat fat now, she just has instant diarrhea now rather than what appeared to be fatty stools.

Apart from when eating fat, there's no other symptoms. She is starting to get tired now though and is waking up late for work everyday more recently. Her thinking has slowed a little I think and she's moodier. There were some changes in her bloods which were shown in the link of my previous post five months ago shown above. I'm about to get all these checked out again to see if worse/different.

Saggyuk profile image
Saggyuk in reply to Saggyuk

Oh and the pain is at the front across her stomach and then radiates up her back to her neck and makes her exceptionally sleepy x

in reply to Saggyuk

Thanks for your reply. I live in Brazil and those symptoms could be from parasitic infections. I know this is not common in the UK but the world id changing. As we get older our immune system does not deal very well with infections. Some will show high eosinophils or neutrophils on blood tests but when the infection is chronic these numbers can be normal.

If that’s not the case, then pancreatic issues have to be investigated. In the meantime you could buy OTC digestive enzymes (amylase, protease, lipase) and give her one hour before meals.

Saggyuk profile image
Saggyuk in reply to

Hiya Would parasitic infections only cause digestive issues when eating fats though? I'm a little apprehensive to try anything more. Sometimes I think if I hadn't have stepped in and worked out it was fats and stopped her eating them, she likely would have been much iller and in hospital long before now as she was losing over a stone a month. Although this is not what I want at all, she likely at least would have been treated by now as prior to that she wasn't able to eat or digest at all really. I will give it one more go with the GPs, get some basic tests done over the next couple of weeks and then try those enzymes you mentioned to see if will help x

in reply to Saggyuk

I know what you mean. It’s terrible to have to be seriously ill in order to receive proper treatment.

Giardia lamblia is a parasite that affects the digestion and absorption of fats and vitamins soluble in fats (A, D, E) and can cause gallbladder and pancreas inflammation. I had it once and my symptoms were exactly like your mother’s. It took a long time to be diagnosed because instead of doing a single stool test the doctors sent me to CT scans, MRI and thought I had AIDS!!! Six days of Nitazoxanide was enough to cure me.

Give her the digestive enzymes, that will tell you if she has pancreas issues.

Saggyuk profile image
Saggyuk in reply to

Okay, thanks that's very useful to know :-)

I had real problems with my GP & endo 4 years ago, i contacted pohwer.net/

who are advocates for medical complaints, wow they really got things moving. They helped me take my endo to ombudsman, my gp closed his practice 6 months after i started complaint, turned out my complaint was the least of his problems, he was being sued for negligence in several cases. I hope you get some answers, part of my complaint was about not getting referral to correct consultants when GP had no idea. x

Saggyuk profile image
Saggyuk in reply to endomad

Many thanks, will look into this :-)

in reply to Saggyuk

Forgot to say that Giardia also interferes with vitamin B12, folate, glucose and lactose absorption.

Saggyuk profile image
Saggyuk in reply to

Thanks, it appears this is another test not easy for me to get myself but I will definitely bear it in mind and try and get them to test it :-)

I'm not a medic (obviously) but if there is immediate pain related to eating fat, that is usually a liver/gall bladder/pancreas/biliary issue not absorption. If it extends across the right hand quadrant of the her abdomen and moves upwards, that's usually another clear sign. Take a look at websites which list these symptoms.

Saggyuk profile image
Saggyuk in reply to Likay

Hiya, yes thanks, Yes I know what the problem is but the docs just won't get it sorted or deal with it and it's been 9 months now and at a dead end :-)

Likay profile image
Likay in reply to Saggyuk

I'm not saying it works all the time, but going direct to A&E during an attack of pain can work. I've two friends (who don't know each other) who did exactly that. They'd both been struggling with pain, weight loss and restricted diet and finally in desperation they went to A&E. In both cases, they got referrals to specialists and ended up having gall bladder operations. Both have recovered well. It took that act of desperation to get the response they clearly needed.

Saggyuk profile image
Saggyuk in reply to Likay

Thanks Likay - I'll keep this in mind and might do this if nothing else works in the next month. Problem is she's been referred to two specialists/consultants but they both determined nothing wrong from one scan and not actually having seen her - one was the colonoscopy and the other an mri (literally no other tests and no actual appointment with the docs in question. I'm worried this will encourage A&E not to bother either x

Likay profile image
Likay in reply to Saggyuk

Good luck. x

Do you think it could be B.A.M.?

Bile Acid Malabsorption.

uhcw.nhs.uk/bam/what-is-bam/

Saggyuk profile image
Saggyuk in reply to Lalacat

Hiya and thanks - I suppose it's a possibility but the info I've just read don't seem to emphasize the type of weight loss she's had and just say it creates lots of watery diarrhea which she didn't have at least for the first few months? x

Lalacat profile image
Lalacat in reply to Saggyuk

It's quite a short article. Maybe if you check out other B.A.M. sources on the internet, you might find a more in depth list of symptoms.

Hope you can find a solution for your mum. x

Saggyuk profile image
Saggyuk in reply to Lalacat

Thanks, will do x

I had a test for that (negative) even though I just had morning diarrhea and it wasn't completely watery. You have to go to nuclear medicine at the hospital, swallow a radioactive capsule and then go back and lie in a gamma machine a week later. Got instant referral to Gastroenterology who sent me for several tests, including that one. Sounds as though your GP isn't really trying.

Yes I know and I think they're passing the wrong information to the two consultants she's seen as well as both referrals took over three months and neither of them thought they had to see her or seem to be aware of the rediculous weight loss etc. Each consultant just booked in one scan each and made decisions on this.

Yes she needs far more detailed scans than the ones she's had :-)

WOW! Where would we be without this forum ? What a huge amount of knowledge and experience. So worrying and frustrating when your lived one is obviously ill and you can't get anything done from those who are expected to help.

I learn something every day reading here and and it's do great that people, often unwell, fatigued, in pain take time to help others.

You're all bl***** brilliant !

Saggyuk profile image
Saggyuk in reply to

Yes definitely :-)

Hi

I see you have had lots of replies and good information, you could try A&E, but I don't know if they will investigate as much as you would like.

If I was you, and, I have done this before, you can book to see a private GP and, they may be able to help, including with a private referral as well.

I saw a private GP recently via BMI Hospital, I paid £60.00 for a 15 minutes appointment, yes, I know 15 minutes is not much time, but, it went over time and there was no extra charge. It was nice that they listened to me, gave me a very thorough examination and wasn't clock watching. You can either choose for the private GP to write to your allocated NHS GP or not, its your choice.

I know we shouldn't have to do this as we have an NHS, but, I am speaking from my own recent experience, and, reading about the issues with your mum, she having a really bad time and not getting anywhere..

Best Wishes

Peanut31

Saggyuk profile image
Saggyuk in reply to Peanut31

Thanks, that's affordable so will give it a go - at least it's a start even if not a specialist :-)

I'm so sorry your mum is so poorly. Having just noticed that her colon was removed five years ago, she would then not be able to absorb sufficient B12 from food or supplements and should have been given B12 injections.

From the symptoms described I'm wondering if is suffering from severe B12 deficiency, especially as 40% of sufferers of Hashimoto's also develop PA/B12def. Below is a link to latest BMJ research document - summary only - full document is behind a paywall but GP should be able to access it. You'll see that there is no reliable test and, in any case, taking 12 supplements would have skewed any result:

bmj.com/content/349/bmj.g5226

This is what page 2 states -

"Box 1 Common causes of vitamin B12 deficiency5-9

Impaired gastric absorption:

• Pernicious anaemia

• Gastrectomy—partial or total • Zollinger-Ellison syndrome

Impaired intestinal absorption

• Ileal resection or disease—for example, Crohn’s inflammatory bowel disease and tuberculous ileitis • Blind loop syndrome

• Luminal disturbances: chronic pancreatic disease and gastrinoma

• Parasites: giardiasis, bacterial overgrowth, and fish tapeworm

Pancreatic insufficiency Decreased intake

• Malnutrition

• Reduced intake of animal products • Strict vegan diet

Congenital/inherited

• Intrinsic factor receptor deficiency/defect—Imerslund-Gräsback syndrome • Congenital deficiency of intrinsic factor—“juvenile” pernicious anaemia

• Cobalamin mutation (C-G-1 gene)

• Transcobalamin deficiency

Increased requirements

• Haemolysis • HIV

Drugs

• Alcohol

• Nitrous oxide

• Proton pump inhibitors

• H2 receptor antagonists

• Metformin

• Colchicine

• Slow K (potassium chloride) preparations • Cholestyramine "

...............

The PA society has more information with pages for professionals and are very helpful.

pernicious-anaemia-society....

Tracey Whitty's B12 def. website also has good information with templates for writing to your GP.

b12deficiency.info/what-to-...

Very best wishes for better diagnosis and treatment

Saggyuk profile image
Saggyuk in reply to Polaris

Hiya - she hasn't had her colon removed so not sure where I mentioned that - she had lots of polyps and adenomas removed from her colon? I did mention my nan in a previous post who's got advanced colon cancer and has had to have bag now? Maybe I wrote it wrong lol!

She was low in B12 before when thyroid diagnosed but we had managed to get it good for some time since she went gluten free before this all occurred. Her B12 is now over range and folate low since this began so can clearly absorb B12, just missing something to do something with it I assumed?

Thanks :-)

Saggyuk profile image
Saggyuk in reply to Saggyuk

this was her last B12 results:

ACTIVE B12 *208.000 pmol/L 25.10 - 165.00

Folate was this:

FOLATE (SERUM) *2.7 ug/L 2.91 - 50.00

Polaris profile image
Polaris in reply to Saggyuk

Sorry if I got the wrong end of the stick SaggyUK ! But, I still think the polyps, etc. could be the root cause, especially if she'd been deficient before and GP had not investigated why! It's all very complex to explain but basically B12 is absorbed through the ileum and, it's also harder to absorb over the age of 60 anyway, as I eventually discovered and I now self inject to stay well as do many others on the PA forum.

The BMJ research document also demonstrates the uselessness of testing after any treatment as do other guidelines. At the bottom of page 4 ' under, 'How is Response to treatment assessed'), it outlines that, once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

Sorry, have to go out but have a look at all the links.

Saggyuk profile image
Saggyuk in reply to Polaris

Okay, I will have a proper read of them. Her polyps and adenomas were lower down in her colon though and had the larger ones removed but the last colonoscopy earlier this year showed there were literally none anymore and all historic inflammation had healed since going GF. Sorry I was rushing, the last test I had done was three months after the last time she took any vits as she stopped all of them once she started having problems. I meant I told her to take nothing more but did put her back on folate.

All her nutritional values were dire before she went GF, same as mine were, but all seem to come up okay afterwards. She had been feeling really good and any sort of B12 symptoms she had had, completely cleared up.

Thanks for the bmj link, that's really useful as had been wanting the answer for this for some time.

Thanks :-)

Ps she's not yet 60 lol!

I would see a private GP, around £65 for 15 minutes. If necessary they can refer to the NHS for tests.

Saggyuk profile image
Saggyuk in reply to

Yes will do, hadn't actually realised you could see private GP for just this amount so that's really useful :-)

Hi, my mum has similar symptoms and she has a hiatus hernia. Also had gallbladder problems but she had that removed a few years ago.

Saggyuk profile image
Saggyuk in reply to MissSusan

Hiya thanks, I can't see how it could be hiatus hernia as I can't get away from the fact that she can be fine for two months as long as fat free but then one tiny bit of fat and she's laid out. Yes I did think it was gallbladder at first. Thanks :-)

MissSusan profile image
MissSusan in reply to Saggyuk

That’s exactly what happens to my mum. A small amount of fat and she’s in absolute agony.

Sounds like gallbladder to me, this is exactly how I was two years prior to having my gallbladder removed. I could not eat any food that had fat in it, just the smell would make me sick. I never threw up it was just diarrhea and horrible stomach pain when I would eat. I lived off of a bowl of cereal and 7 up for two years, I weighed 115 and was 31 when I had mine removed. The sickness went away immediately after the surgery, good luck to your mom.

I would seriously consider digestive enzymes with ox bile. Fats are necessary and absorption of them is crucial. Bile (from gallbladder) is required for this. Sometimes bile becomes sticky and viscous and does not flow as freely as it should (and this can happen without having gallstones). Ox bile provides it in capsule form and helps give a system already under duress a digestive break, so to speak. Pancreatic Digestive Enzymes along with betaine hcl (stomach acid) are equally important, as production of these aren't as easily produced as we age, or anytime there is thyroid dysfunction.

I speak from experience when I say that just the addition of these enzymes can have a truly amazing effect.

I have tried many, but have found NOW Digestive Enzymes capsules w/ ox bile (90 or 180 count/ on Amazon) to work the best at an affordable price. (I'm in the US, but these are available on Amazon uk.)

Start with one capsule per meal to see if any improvement is noticed. Generally, if the meal is light, one will do, but some people require two to three per meal. It depends on the person. The general rule of thumb is when you feel burning in your stomach then you have reached your threshold and can reduce by one capsule for next meals to the previous point where there was no discomfort. (I have Celiac and Hashimoto's and have no problem with this brand.)

Digestion is everything. And when it isn't working, your life is a misery. I have always felt that if there is a tried and true option that won't break the bank, that could conceivably help ease suffering by providing the body with what it requires anyway, (but may be having difficulty producing), is worth a shot. Even if it turns out to not be the aid/solution you were hoping for, at least you gave it a go.

Note: Even if a gallbladder has to be removed, bile is still a necessity. So, it has to be supplemented for the rest of that person's life for fat absorption.

My thoughts are with both your mother and you for a positive outcome. 😊

Saggyuk profile image
Saggyuk in reply to Ell17

Thanks so much that's really helpful as my knowledge of digestive enzymes and if any are any good and what is needed is truly lacking lol!!

Okay will give them a shot :-)

Ell17 profile image
Ell17 in reply to Saggyuk

Glad to hear it:) I really feel that it could help make a difference.

I went back and read some of your posts. Firstly, getting the endoscopy is paramount, as you well know. It is absolutely criminal that she hasn't received one. Keep arguing for it. Has she been tested for cancer? With her symptoms and weight loss pancreatic comes to mind. I am inclined to agree with you that the pancreas may be playing a part. Sadly, all this postulating doesn't amount to much without some hard data.

It is wonderful that she can eat coconut oil. That is a very healthy fat and medium chain fatty acids are important. It is also easily digested. Her body knows this and is craving what it can handle at the moment. It's good that she is listening to it. Easily digestible veggies, fruit and protein like eggs and fish are great as tolerated. Whole grain brown rice with coconut oil is also filling and easy on digestion.

Another poster mentioned gastroparesis. The stalled digestion you mention makes it as good a candidate as any. Anything that helps get digestive fluids going could help. Apple Cider Vinegar and ginger (1 Tbs in glass of water before meals with a capsule of ginger mixed in) works well. Ginger is also great for helping with nausea. NOTE: Rotate Digestive Enzymes and this mix before meals to see which one helps most. I personally find that continued rotation works best.

Hiatal hernia, should it turn out your mum suffers from this (endoscopy required). It is an esophageal structural weakness that allows stomach acid to be more easily burped back up. And fats, specifically the heavier ones that just sit in the stomach can aggravate it. (Coconut oil is light and easily digested. That is why your mum does well with it.) So, regardless of whether you take additional digestive enzymes or not, it is always good to stay upright after eating. [Eating smaller meals more often also helps (in which 1 Digestive Enzyme capsule per meal should be enough or the ACV/ ginger mix.] Recliners are fine because even in a reclined position you are still elevated. But, lying flat after eating is not a good idea. Many people with this problem, myself included, find that lying flat at any time doesn't work all that well and that sleeping elevated (like on a wedge or with extra pillows, or even sleeping in a recliner) is much more comfortable.

If and when digestion improves, remember that she doesn't need to go hog wild :) with reintroducing other fats back into her diet; keep the amounts modest. Her body will let her know when she needs more or less.

As for energy, and barring other causes, once she starts eating and actually digesting more calories and nutrients, theoretically it should start to improve. But, a good Vitamin B Complex (methylated form) could also help with energy. (Nutri-Ark High Strength Vitamin B Complex / 180 tablets/ £11.97) on Amazon uk looks good . They are also free of gluten, soya, dairy, and yeast. This will help her get the methylfolate she needs plus a balance of all the B's. As for B12, your body absorbs what it needs and flushes the rest, in case you were concerned about her having too much. Each tablet has 200 mcg folate. The dose found in most brand tablets is 400 mcg. The overall amounts are low enough with this brand that she has the option of taking 2 tablets a day so she can get the 400 mcg folate (not folic acid), especially since she has a deficit, as well as benefit from a few more of all the B's. She could take 1-2 in the morning (or 1 in AM/ 1 early afternoon if taking 2) so they are wearing off by bedtime and won't affect falling asleep (if she happens to be one that tends to get over energized easily).

Extra B1 (Thiamine) is also good for helping with energy. You can take up to 600 mg daily. They come in 100 mg tablets/ capsules. Take one along with the 1-2 B Complex tablets in the morning for a few days. Then adjust by adding one more B1 tablet (to the the B Complex tablets) every few days up to the 600 mg limit to see which dose helps the most. There are many good brands for the B1. Just make sure they are free of gluten and any other allergens your mum has a problem with. I will say that Solgar brand B1 capsules are very good, allergen free, reasonably priced, and available on Amazon uk.

I truly hope some of the suggestions can help get your mum back to feeling her chipper self soon. And let us know how she gets on.

All the best and season's greetings to you both. 😊

Hey guys - thanks for all your help before - it really did help to start me off and rule things out as was at a loss at first with zero help from docs. I wanted to let you know the outcome as it ended up being something that's often missed until it's too late so thought it might be useful if anyone else has similar issues and all above have been ruled out and they come across this post.

Wow it went on for another year or so with yet more and more inept doctors - many saying it was an eating disorder, consultants and tests being suddenly cancelled. I started ensuring I was at every appointment after that and we chucked it in when after a supposed scan of her gall bladder/pancreas, the GP called her in and said she had early signs of COPD on her chest x-ray (which she never had), was incredulous as to why she wasn't bothered - we pointed out she was likely to die before COPD could ever set in and was someone else's results anyway- apparently she was referred for said xray after complaining about a cough/chest pains - and also surprised that we would rather discuss the stomach issues which had been the only thing my mum had visited them for multiple times (which she couldn't find a record off on her system). The GP said impossible to be mixed up but I asked why was she sent for scans of gallbladder, a dietitian and been diagnosed with IBS and so on if she had never complained about her stomach (clearly also on her file) but she still refused to admit to an error and said she definitely saw her about her chest and then said that smoking could be behind her lack of appetite and maybe it's referred chest pains rather than stomach and still wouldn't listen when I pointed out that early indications of COPD wouldn't cause instant watery diarrhoea upon eating fat or significant pain 30 mins after eating but she kept repeating there was nothing wrong with her- we called her ignorant and stupid and walked out saying quite loudly to all waiting in reception that they are dangerously incompetent and mixing people's results up and writing incorrect things on people's files and doing incorrect referrals - after looking at her online file, which was shockingly incorrect, it's no wonder consultants weren't doing the right thing and sending her back without seeing her! Sorry I'm ranting but I was so mad at them and still need to lodge a formal complaint so haven't quite got it out of my system!

Went private who agreed something definitely was up and finally recorded her weight (GPs had not weighed her once throughout all the massive weight loss) and they took in the part that she lost most the weight when she was eating normally. Although they couldn't find anything on ultrasound, he put her on his colleagues NHS list for further investigation so she didn't have to pay. He also put her on digestive enzymes immediately just to try and help because of how skeletal she was - they did sometimes but just not enough and they increasingly failed. Then they tried to boost her weight with these high calorie drinks but she couldn't stomach them and then after this other NHS Doc, after doing a few more tests she'd already had but also looking at all the incorrect info on my mum's files confusing matters, tried to take her off her books saying she was referring back to GP and said it was a eating disorder again - for a woman in her sixties to suddenly suffer from!!! At this point mum was down to five stone, couldn't find clothes that would stay up, had started losing her faculties to the extent I wouldn't leave her alone with my daughter and could no longer eat other things so no longer just fat and I was having to come up with more and more bizarre meals just to keep her eating leading to just veg and not much at all at the end (don't think she ate anything last two weeks of suffering) so I had realised it must be a different functional issue and had given me a few ideas.

I'd had enough at this point when she mentioned psychological again and very calmly told her that I am 100% guarantee it is not an eating disorder as the weight came off when eating normally at first and that if she doesn't finally give her a well overdue endoscopy which should have been the first thing that was done plus a CT scan of her blood supply (I had nothing else to try), when she dies shortly as she hadn't eaten one ounce of fat for well over a year and therefore organ failure is due regardless, I will be suing for negligence. She had the worst look you could imagine and after a long silence muttered "the tests won't help you and won't be that" but reluctantly put the tests through anyway! After the results, she refused to see us again to even discuss them nor for the follow up she should have done - so she's had zero follow up after the op.

The guy who did the endoscopy stated he was actually shocked as had never seen a stomach looking so bad in someone still standing diagnosing, in his words, "extremely severe erosive gastritis" with zero stomach lining left and then the CT angiography finally finally diagnosed mesenteric ischaemia which was also the cause of the gastritis too - basically her lower intestine whichever one it was was dying from lack of blood flow and apparently she was likely days away from becoming acute which has a very bad prognosis.

They booked her in for an op a couple of days later. It turned out a genetic anomaly meant she only had two arteries into this area rather than the normal three plus in a different place - one had failed entirely and the other was too large from overworking and engorged and no longer supplying decent blood flow. They gave her a stent to the failed one - I was panicked as the Op took hours and hours more than usual and couldn't get an answer as to what was going on but it turned out simply had trouble navigating as had a different vascular layout to most so couldn't rely on their normal knowledge.

She was eating normally by the very next day - well she took it easy on the hard stuff for a while but zero issues! She's now back up to 10 stone and fully recovered - and given up smoking again for good. Even they were surprised at how fast she recovered.

I just wanted to tell everyone in case they are suffering with similar issues and come across my post (she didn't have vomiting as no one in my family vomits much even when we should). Also, it's sometimes fat that is the first problem simply because this is one of the hardest components to digest. Unfortunately, this is normally caught too late in the day for a good outcome and in emergency care due to lack of knowledge or suspicion and my mum was very lucky she had her op when she did.

She is back to eating too much chocolate (sigh) but eating much better than she did otherwise the rest of the day. She has also changed GPs who are hugely better than the surgery she was at (which has dire reviews) and the new ones stated she has no indications of COPD. The former surgery refused to give her files in the end and then claimed they lost them!! People really do need to vote with their feet more and change GPs until they find a good one!

I suppose I'd best give up smoking too with all these possible genetic abnormalities thrown in!

Thanks again, we got there in the end :-)

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