Dd 23 - gastitis, chronic fatigue and period problems. Where to turn next?

[MrsBartlet]

Can anyone help point me in the right direction to get help for my dd who is 23 and has been ill for 3 years, please? I am sorry this is going to be long to explain what is wrong with her!

At the start of 2018 she had a bad bout of gastritis which we think developed after frequent use of ibuprofen (and then a few naproxen prescribed by her gp) for pain relief from very difficult periods. She was prescribed omeprazole and then when she reacted badly to this, ranitidine, both of which caused problems and she was slowly weaned off the ranitidine. She had an endoscopy a few months later which showed no signs of gastritis.

She had investigations into the period issues and following a scan it was suggested she may have endometriosis. A coil was fitted in early summer of 2018 to help control the suspected endometriosis symptoms. During this time she had to take time out of the second year of her degree and she went on a waiting list for a laparoscopy. As the summer went on her pain became really bad to the point she could hardly walk and as we were desperate to make sure she could restart her second year at university in October (and because we wanted to make her better!) we paid for her to have a laparoscopy to investigate the suspected endometriosis so that she could get some help and get back to university. It turned out she did not have endometriosis at all but her coil had moved out of position so we assume this was what was causing the increased pain she had been having.

She went back to university to restart her second year and was ok at first (albeit tired after a year of pain and illness). In the November she came down with a bad respiratory virus which lasted until January and then she developed post viral fatigue. The post viral fatigue didn’t end and she was diagnosed with chronic fatigue in 2019 and is under the Chronic Fatigue team at our local hospital. The treatment has not amounted to much other than a few occupational therapy sessions and some CBT and for obvious and understandable reasons was on hold throughout 2020.

She has also had at least 3 bouts of gastritis now and she eats a very careful diet to make sure she doesn’t eat or drink anything which could trigger it. Every time she has a gastritis flare up this causes her chronic fatigue to flare up. The week after her period also causes the chronic fatigue to flare up and so she is in a never-ending cycle of flare ups and pain and has no quality of life. Despite having made it through her degree by sheer strength of will and by teaching herself a lot of the content she has been stuck at home on benefits as she is unable to work since she graduated 18 months ago. She is very bright and was very dynamic and creative and she is now a shadow of her former self. Unsurprisingly she has depression and she is having counselling weekly for this.

The gp won’t refer her to a gastroenterologist for the gastritis as they say she has to take the drugs first but she has explained what happened last time when she was prescribed them by her university doctor but they shrug their shoulders and say then there is nothing they can do if she won’t take them.

We have paid for private blood tests to try and work out what is going on. Her thyroid reading is unusual (Free T3 is normal but TSH and Free Thyroxine are at the very low end of normal) suggesting there is not a thyroid issue but that something else is creating a problem with the thyroid. Her pituitary function has been tested and is fine so that is not causing the thyroid problem. Her B12 was on the low side but we have just done a methylmalonic acid test and that is fine so it is not a B12 deficiency.

We are prepared to pay for her to see a specialist to try and get her some help but we don’t know who we should send her to - maybe a gastroenterologist? Really, we want someone to look at the big picture and point us in the right direction. We have no idea which way to turn now. I would be so grateful if anyone with any experience could point us in the right direction as we have no medical expertise and feel completely lost. I would really like to be able to show her what we can do next to help her. Thanks in advance and sorry this is so long!

She has also had at least 3 bouts of gastritis now

Was this confirmed by a doctor, or self diagnosed?

I am in no way medical, but did not want to read and run, if that is the right expression.

I would want to see a gastroenterologist. I would have questions about inflammatory bowel disease and would want it ruled out (colonoscopy etc). That comes with fatigue and pain.

Crohn's (one of the IBDs) can affect any part of the digestive system. Also, I'm not sure what symptoms you're using to determine it was gastritis, but IBD can cause nausea, vomiting, etc even though it's further down the digestive tract that's affected rather than the stomach.

I’d go with a gastroenterologist first but I’d also look at seeing an endocrinologist. I’ve similar health problems, including the low rt3 ratio, and almost an identical history of bouts of gastritis (bad enough I needed to go to A & E) and a misdiagnosis of CFS, period problems, having to drop out of courses etc. Turns out I was born with an autoimmune disease which affects every part of my body. It’s very rare and almost impossible that your dd would have the same one but a private appointment with an endo would be able to look deeper into what’s going on with the thyroid.

Thanks both. Yes the gastritis is self-diagnosed going on the pains she had initially when the GP suggested it was gastritis due to the NSAIDs she had been taking. We are researching gastroenterologists as that does seem the way we need to go. Thanks for replying!

@NameChange84 sorry just realised I cross-posted with you and didn't see your reply and I had to go straight into a zoom meeting! Thanks that is really interesting. The thyroid thing is very confusing but interesting that you have had similar results and symptoms. Are you able to manage your condition now that they have diagnosed you?

Has she had any allergy testing or tried any elimination diets?

I would try taking the Omeprazole again. You need to take it for at least 3 weeks before deciding it's not suiting you. There are side effects the first week or so. Also, I found the different brands of it were different. I found Losec was the best version.
The omeprazole will definitely help sort her out.
When you say she reacted 'badly' to them what does that mean?
Can she go on the pill, and run three months back to back to give her a break? Then at least she's eliminating the period from the problem.
If the depression continues has she considered antidepressants?

No she hasn't had any allergy testing. Do you think that is something we should explore?

Personally, I think someone with such long-standing, debilitating problems needs proper investigation not guesswork and tinkering.

But I am speaking as someone who was fobbed off with "it's just stress" and "it's a stomach ulcer from NSAIDs, take omeprazole" when actually I had a very serious and potentially life-threatening problem requiring major surgery that was neither stress nor stomach related.

Self-diagnosis and GPs guessing at diagnoses without adequate investigation is dangerous, and in this case has clearly caused prolonged suffering. I wouldn't start dabbling.

See a specialist - gastroenterologist sounds most sensible (altho endocrinologist may be pertinent at some point to rule out whether thyroid is connected or coincidental). Let them investigate properly.

@sadie9 - I meant that she had side-effects from them. I can't remember how long she was on the omeprazole for before they switched her to ranitidine. But I do agree with @user652339853 that we shouldn't just get her to try something again without proper investigation now. She has been on two different types of pills at various points to try and ease her periods but each one brought side effects that she couldn't tolerate. She is now very wary of all medication as she seems to suffer side-effects with everything so won't countenance trying anti-depressants. Having said that the counselling is helping with her depression. Her depression is very circumstantial and if we could solve her physical health problems I don't think the depression would continue to be an issue. It is directly related to how physically ill she feels.

I have contacted our local private hospital to try and get an appointment with a gastroenterologist asap. Thanks for all the advice!

@user652339853 - sorry for your experiences of being fobbed off. I think dd would relate to that as she constantly feels dismissed by health professionals and a bit abandoned. I hope you have managed to get the help you need.