To ask how many are suffering from a longterm undiagnosed illness?

[SinkGirl]

Last night I sat sobbing watching Diagnosis on Netflix (a programme where a doctor writes columns about undiagnosed patients with unusual symptoms and tries to crowdsource answers). It’s so wonderful to see these people getting answers that are helping them, and rather selfishly I’m sobbing because I don’t think I’m ever going to know what’s wrong with me. And it makes me wonder how many of us are in this situation?

It’s nothing so dramatic as these cases, no one would ever be writing an article about me, but it impacts my life, stops me working full time, affects my parenting. And above all I’m just really sick of feeling so awful and being so limited. It has been going on for over 10 years now.

I’ve posted about various aspects of this under various usernames over the years. I’ve had to become an armchair medical detective because god knows nobody else is going to care. I’ve narrowed it down (I believe) to a hormonal issue but despite searching I’m yet to find an endocrinologist who really specialises in female hormones - diabetes and thyroid, sure, but no one with expert knowledge of the intricacies of female hormones. Everyone says it sounds like my thyroid, and it does cover pretty much every symptom, but tests from the GP have always come out well within normal range. I’ve done some private tests which are closer to being out of normal range, but not enough. Even thyroid antibodies are in normal range.

I’ve had every basic blood test you can think of and nothing shows up. I’m told it’s ME or fibromyalgia but they don’t cover everything that’s going on. Main symptoms are fatigue, pain, peripheral neuropathy, heart palpitations, body temp issues, bad skin, hair loss, gastric issues, and more.

I recently had a period of two weeks where everything improved but new problems started (high pulse, high BP, like I was on a stimulant)... then it all came back. Then a smaller improvement, then back. Then a tiny improvement, then back. I tracked it all and realised it was related to my cycle. The first half of my cycle was when the improvement occurred each month for a few months right up until ovulation, and each month the improvement diminished until there was none. This has happened exactly like this before, when my hormone levels change due to coming off hormonal contraception, pregnancy, breastfeeding etc. But there’s been no recent changes.

I’m baffled, doctors just shrug at me. They think I have health anxiety I’m sure but I really don’t - I don’t worry that it’s something awful or whatever, I just want to feel well, have energy, not be sitting here watching CBeebies yet again because I can’t move.

I’m wondering how common this is - how many of us are dealing with this? As GP time is under more pressure and we see different doctors more often, etc etc, how many people have shitty quality of life for reasons unknown?

I don’t want to go on like this any more, especially when I know I can feel better, I just don’t know why.

Has anyone been through this and come out the other side with answers or an improvement? Is anyone where I am now? How many are struggling on in silence because no one is listening?

I feel like we need to take the idea of this programme and make something for people like me and others like me - no one’s going to be falling over themselves to figure out how to make something like this go away but there could be so many other people with the same issue, I can’t be the only one.

Main symptoms are fatigue, pain, peripheral neuropathy, heart palpitations, body temp issues, bad skin, hair loss, gastric issue

All of those could be caused by coeliac disease apart from not sure that hair loss would. Fatigue, gastric issues and bad skin are the more common symptoms, but palpitations and peripheral neuropathy can occur. Though I can’t see it would be linked to your cycle.

Have you had your vit d levels checked?

'@Vinosaurus** Try and get your GP to refer you to a neuro otologist. You sound like you could have Migraine Variant Balance Disorder, commonly known as MAV (Migraine associated vertigo) .

I was misdiagnosed with Menieres disease for years as I was seen by ENT and told I'd have to live with it as the meds to treat Menieres didn't help. A migraine specialist told me I couldn't have ear fullness, visual issues, tinnitus etc all the time to some degree with migraine, it could only be episodic as part of the actual migraine prodrome. Finally after spending all last summer house and mostly bedbound I saw a specialist (privately but now see him on his NHS list) who was able to diagnose me and more importantly knows how to prescribe migraine preventative drugs to treat the myriad of extra symptoms (that sound like yours) or can hopefully diagnose what is happening with you after exhaustive questioning of your history and some simple tests. I was on propanalol for migraine at one point but not at a dose that could deal with all the MAV symptoms. Migarine symptoms can also "morph". I've had several years of chronic migraine and less vertigo, tinnitus etc and years where I had no headache but did have a feeling of ear fullness, tinnitus etc. Finally starting to feel almost human again.

If you are in the SE check out Dr Surenthiran, or if anywhere near Liverpool, Dr Silver at the Walton Centre.
[www.mvertigo.org] is a great site for discussing your symptoms and getting advice and recommendations for specialists in your area

But then the last Active B12 test I had was 70.4 (range 25 - 165) and from what I’ve read that’s more than adequate so I have no idea.

I had a slightly below normal serum adjusted calcium level once last year (2.19 and normal range was 2.2 - 2.6) and from what I’ve read, parathyroid issues cause the opposite problem? Not something I know masses about, however.

I’ve had and fixed a major vitamin D deficiency (was 19.9, now over 100) and it hasn’t made any difference and can’t explain the cyclical changes either - I had hoped that was the answer.

I’ll look into adrenal fatigue for sure.

No, I never worry that it’s cancer or anything terminal, even with all my Dr Googling. The only time I worried about this was when my mum was diagnosed with ovarian cancer and has basically exactly the same symptoms as me and I realised that if I ever did have anything like that I’d never know it as I am already in such bad shape and whatever happens it’s shrugged off. I did worry it might be MS for a while but only because of the neuropathy in my legs and weakness in my hands, I don’t actually think that’s the case or worry about it.

Thanks everyone - I wasn’t trying to rope others into my sleuthing but it’s good to have others opinions :)

Oh and coeliac has been ruled out already - after the test was clear I tried totally cutting out gluten to see if it made any difference, but no.

I’m a nutritionist OP. BANT registered.

There is a tonne of stuff this could be and lots of things to consider. Find one in your area, even for two consultations. We see lots of people in your scenario. You might need some tests though such as a stool sample or more comprehensive tests relating to deficiencies.

Wow, thankyou @SapatSea - ear fullness is something that has started over the past few months actually, comes and goes (can last a few days, changes ear on each occasion) so it does sound very similar. I'll look into those doctors and also the website.

Look into Boron. It helps regulate your hormones.

Have you looked at Ehlers Danlos Syndrome? I have it (hypermobility type) and it is similar in symptoms to fibromyalgia.

Main symptoms for me are pain, fatigue, gastric issues, fast heart rate, dizziness etc.

It took me several years to get a diagnosis and blood tests always come back normal.

Have you researched hyperparathyroid disease. Hope you get resolution soon.

I second everyone saying EDS or joint hyper mobility syndrome..plus POTS..good luck, OP

OP, I've got the symptoms you describe, but some things have shown up on blood tests. My current diagnosis is Connective Tissue Disease, query Lupus, with some Antiphospholipid Syndrome. Tests continue....18 months in. I suspect I shall never get a definitive diagnosis but that's pretty common with auto immune diseases.

Another one wondering if it is endometriosis again, have you had a recent laparoscopy? I had similar issues and have endo (and PCOS and adenomyosis)

I have similar (but milder) issues, and mine is definitely thyroid related. My TSH fluctuates a lot, and I am sure it is connected to my hormone cycle. I take a very low dose of levothyroxine, and I am often over and and sometimes under medicated according to my blood tests, even though my dosage doesn’t change. I’ve been referred to an endocrinologist because my GP is baffled by my test results.
I don’t feel awful though, just a bit tired and grumpy when I’m under medicated.

Have been ill for 2 1/2 years with many symptoms. First diagnosis, Sjogrens, had mouth biopsy and this is not the cause. 2nd diagnosis, non-Hodgkins Lymphoma, thankfully wrong. I think the doctors have given up. Don't know who to ask for more tests.

I have looked at EDS before but none of the types seemed to fit - I do have slightly bendy fingers but that’s about all with the hypermobility.

Thingsthatgo that sounds very much like me. I figured out from private tests that my TSH drops to around 1.4 mid cycle and goes up to about 3.9 end of cycle, one private test it was 5.95 but when the GP retested it was 1.4 again. I’m sure they just think I’m nuts at this point.

I am sure my endometriosis (and adenomyosis) is worse than ever at present, pushing for another lap, but previous laps haven’t improved any of these other symptoms.

We basically need nhs medical detectives. Still, thanks to this thread I’ve now discovered that the people practicing privately focussing on women’s hormones are all gynaes and not endocrinologists - have found a few who look promising

www.crowdmed.com/

Also have a look at the Dysautonomia International website

AliceAbsolum Ehlers Danlos isnt an autoimmune condition it’s an inherited genetic condition caused by the genes affecting collagen formation.

I have EDS (II) and have dysautonomia as part of that. I can’t regulate my body temperature properly and am dripping with sweat with the slightest activity if the temperature is above 68 ish outdoors and feel sick with cold most of the winter. My blood pressure has been way too high since it was first taken and I’ve been on a cocktail of BP drugs since my mid 20s. I have palpitations, gastropareisis and extreme fatigue.

My skin is fragile and bruises and cuts for seemingly no reason and fine, brittle hair and have had osteoporosis since I was in my 30s. I didn’t get a diagnosis till I was in my early 50s and have had incorrect diagnoses including and fibromyalgia over the years. It was only when my DD was diagnosed with EDS her late 20s that I also got a diagnosis. The symptoms are so wide ranging and no one had ever been able to join the dots till then. My main symptoms are exhaustion and inability to control my body temp along with easily sprained and strained joints. Please don’t give up trying to get a diagnosis. I never thought I’d get one even though I’ve been aware since childhood there was something very wrong.

Yep me. I'm so so fed up too.

The left side of my body is fucked. I'm in constant pain from my neck, down my arm to hand and in my head. The left side of my face is often numb. The pain is also down my leg into my ankle. I feel unbalanced, my left side is heavy. This is supposedly caused by spinal stenosis and disc degeneration.

I also have numerous gastro issues which has been diagnosed as 'ibs'. The thing is they seem to go together. At the moment I'm having a huge flare. My body has seized up. I can't poo, difficult even with laxitives. My bladder is weird. Having trouble weeing but also urgency sometimes?? And the neck pain etc has worsened dramatically. The pain always worsens when my body 'seizes up' but it's constant.

My mental health is poor, I'm constantly exhausted. My periods are horrendous. No one seems to look at the whole picture, the doctors will only focus on one area at a time.

I have a young child and older ones and it's just not fair on them. No way can I afford to go private.

So sorry for sinkgirl and anyone else with unexplained symptoms

Yes
NHS fobbed me off for. Years.i felt frightened because I was in agony and kept being told it. Was all in my head and there was nothing to do wrong with me.

Only ever did a blood test once ans it came back normal because it took 3 months to. Get it by which time. The flare had subsided. From. Then it was "there's nothing wrong with you, take an ibuprofen" meanwhile i was in agony and struggling to get downstairs sometimes of tie my shoelaces aged 26.i thought I was losing my mind or just really pathetic and not able to cope with normal. Pain. Imagine my surprise when I found out that being in pain at all times isn't normal
....

I have rheumatoid arthritis. Diagnosed within a week of seeing my local GP here in Spain. The NHS can be absolutely shit. Oh. And the medícine I have here is not given as first line treatment in the UK. Too expensive.

I feel bad for all of you with your various symptoms. I have a few ‘conditions’ and have wondered if there’s some connection somewhere. On the surface not particularly related but I would love to see someone who isn’t just concentrating on one thing at a time.
DS has also gone through a few tests for things - he’s seeing someone privately so am Hoping answers will be given as GP not interested unless you’re literally half-dead!

Have you looked into POTS, SIBO and Dysautomnia OP?

For the last seven years my life has been turned up side down. Gastric problems, sleep problems, brain fog, chronic fatigue, anxiety, skin issues, joint pain, weight loss, weight gain. Rinse and repeat.

Lots of different diets, lots of different suggestions from doctors. Some things made a bit of difference but symptoms always came back.

Also lots of research by me. I thought it was SIBO. Private gastroenterologist said no it wasn’t three years ago.

Found a nutritionist who works online and uses US tests. Took a test, yes it is SIBO.

Started treatment 3 weeks ago and I’m pretty much getting back to being my old self again.

I’m sure there is something underlying the SIBO, that may need to be tackled additionally (maybe something to do with how my body processes sulphur). But I am starting to see light t the end of the tunnel and I also am in a place where I can see me having a real life again.

I would also suggest investigating Dysautonomia.

Here's how I was diagnosed after 15 very long and painful years of severe chronic fatigue/me related symptoms.
I read the following article and took it to my GP who was sure it could not be the problem....

www.meassociation.org.uk/2014/05/the-brain-injury-that-could-be-behind-30000-case-of-chronic-fatigue-mail-online-18-may-2014/

I asked for a referral to an Endocrinologist nearly 3years ago and was quickly diagnosed(following various tests that cannot be done by GP) with Hypopituitarism due to a severe Brain Injury that occurred 17years ago! My main problems are severe Adult growth Hormone Deficiency and Hypothyroidism.

I have some weird symptoms and nothing found except chronic pain following a back injury, I suspect there’s some hypermobility but not enough for a diagnosis for anything. I’m coming round more to it being linked to stress, even when I feel fine. Modern life isn’t good for us. Plus diet, if bad foods cause inflammation can it make you worse if sensitive to the effects. Quitting sugar cleared my skin for example. Stress causes inflammation too - high blood pressure, hardening of the arteries etc which I have despite being younger, healthy weight (BMI 22) and exercising regularly.