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.

Dr John Studd (look him up, he has a good website) specialises in women’s hormones. Go and see him. It’s about £150 for a private consultation. Go soon, he’s getting old.

Thank you thank you thank you! I have been looking for ages. Will look him up now.

I could have written your post OP! Near enough exactly the same symptoms but I have excessive hair growth rather than loss (PCOS ruled out). It’s so frustrating, it’s been over 20 years since the symptoms started and I still have no idea what is wrong with me!

www.studd.co.uk/

I’m so sorry Creepy - it’s just awful. I didn’t mention the complete loss of libido, which is also hideous. I have endometriosis and have been messing about with my hormones since I was 13, apparently this is the result. It’s just heartbreaking. I am so sick of it.

HasThis I obviously didn’t find him because I was looking at endocrinologists rather than gynaecologists. Will see what I can sort out.

Are you overweight OP? genuine question

op, could it be peri menopause ? I’ve had a lot of health probs that have no diagnosis after a lot of mri scans and blood tests. Same thing as you with my cycle, better until I ovulate, then gets worse after ovulation

for you OP

And a bit of interesting reading about someone who went through something similar - this guy is amazing!

medium.com/swlh/doug-lindsay-the-man-who-cure-himself-12d40d3f643e

Yep - daily headaches for years, funny ear and eye symptoms, sporadic vertigo, tinnitus, ruining my life to be honest. Had scans years ago to no avail, consultant just shrugged his shoulders and suggested maybe atypical migraines (constant? Really?) - I do have the occasional "typical" migraine which are well controlled with beta blockers. He offered no treatment though. Finally went back to GP recently who has no idea and won't re-refer me.

Don't know where/who to turn to. Feel pretty much abandoned by the medical world.

If it helps, I have had multiple symptoms, on and off, for years and years. Not necessarily the same as yours, but some overlaps. Sometimes things get worse and I go to the GP, but nothing is ever diagnosed. At least, I have been diagnosed with IBS, but only by default, and I am sure many symptoms could be put down to the peri menopause (now a bit better since I underwent the menopause), but just when I feel maybe I am ok, another new symptom begins or an old one returns.

It does make me anxious and depressed, which probably exacerbates symptoms, and I do have dark times when I feel like I will be forever grappling with ill health so I have no life to look forward to. But I also rationalise it by thinking, it has gone on so long and I am not dead yet, so maybe this is not disease, but simply life. As in, normal for me, nothing to be scared of, perhaps shared by others too. I don't know about you, but thinking that, can help me a bit.

Meanwhile, I wish you well.

Adrenal fatigue? Now you aren’t going to find a conventional doctor who will even acknowledge this (Addison’s Disease, sure; Cushing’s, sure) but if you are borderline thyroid, then I bet you also have issues with your adrenal glands.

I have Hashimoto’s and PCOS, and perpetually low cortisol/sky high DHEA-s. I have also teetered on and off in the prediabetic range for years. One hormone gets imbalanced, and it throws off everything else. Seeing someone who will look at your full hormonal picture is worth its weight in gold. I see an incredible functional medicine doctor to help address all these imbalances, but alas, I’m in the US so am of no help.

I am slightly overweight, by a few pounds and they will not shift. My weight has always been closely linked to my hormones - one one hormonal contraceptive I went up to a size 16, on a hormonal treatment that induced menopause I went down to a size 6-8. I did nothing differently at all, same diet, same exercise.

Had my hormone levels tested early this year - estradiol bottom of normal range, everything else normal. No signs of menopause. I don’t really have hot flushes (have experienced them on that previous medication), but I’m often either very cold or feel feverish when I’m actually not.

I think that’s it - GP runs blood tests, they’re normal and that’s it. No suggestions, no ideas, just a shrug. Meanwhile we have to try and live like this. It’s soul destroying, especially after that recent improvement where if anything my body went too far the other way and I was wired, but I had an idea of what life would be like if I had the energy to do things. My kids really need me and I’m a waste of space most of the time.

I don’t worry at all that it’s something sinister, that never really occurs to me - I just don’t want to feel so shit any more. It’s awful that others feel the same.

op, could it be peri menopause
My first thought too. I had 6 years of hell with symptoms, fatigue being the main one. It took all this time to realise that it was the start of the menopause.

What through me was that my worse symptoms were not what is commonly associated with it, as a matter of fact my symptoms were more along to vit b12 deficiency or indeed thyroid problems. It also took me a long time to understand that anxiety is not just triggered by the brain and directly linked to a trigger but can arise out of blue for no reason. I didn't realise that a number of my symptoms were indeed anxiety related. I now know that when I get an anxiety attack, it affects my eye sight quite a bit. Never knew it could be related.

Another massive factor to my symptoms is sleep. Always assumed I slept ok but I now know I've been suffering from a lack of deep sleep and this also comes with a number of symptoms chronically.

I am going through something similar OP. Currently in the process of seeing gynaecologists now. My main symptoms are a lot of heavy bleeding/spotting and severe vaginal pain to the point I have stopped having any kind of intercourse as the pain makes me cry and causes bleeding instantly. During my smear the nurse said how bad my cervix/vagina looked (sorry tmi) and urgently referred me for more tests.

First they suspected cervical cancer, but no. Then they suspected PCOS but again nothing. Also checked for endometriosis and fibroids but neither of those either. I have had endless tests and examinations by both my GP and specialists in hospital. It has been over a year since my first appointment and over 2 years since the issue first started and I am still no closer to finding out, I am so fed up so I feel your pain.

All this started when I was mid 20s so I’d be surprised if it’s perimenopause but who knows.

What I don’t understand is why I got the sudden improvement recently which diminished each month until there was none - as I said I’ve had the same thing happen previously when I came off the pill, when I stopped breastfeeding etc but there’s no obvious cause this time.

I’m sorry you’re going through this.

I think very rarely sometimes even with all the tests and the best doctors there is no diagnosis. Happened to my dad. Went from being a fit, healthy bloke to being unable to walk, open his eyes due to the pain, or eat overnight. Collapsed and was in hospital for six months straight. He was seen by the national specialists in Addenbrooks and still no idea what was wrong with him. In and out of hospital for a few more years, having chemo to try and dampen down his immune system and in the end the chemo killed him. But he’d have been dead quicker without it.

I honestly believe he had something with no known name/treatment/cure. I’m medically trained and have access to all textbooks, journals, etc and spent hours and hours scouring for an answer.

I did once “diagnose” someone on here with a rare auto immune disorder that had baffled their doctor, they came back a while later to say I’d been right.

I hope you get some answers.

Dr Annie Evans is meant to be very good as well, Bristol area. Not sure if she’s retired though. I’ve heard some good reports about John Studd as well as recommended by the previous poster.

Have you had your b12 levels checked? I had palpitations, peripheral neuropathy, fatigue when I was first diagnosed. It affects your nervous system so can have very wide ranging symptoms and gastric problems can be the cause of it so also often associated.

Thanks Sleepy, I’m so sorry about your dad. I think you’re right, there’s still an awful lot we don’t know. I’m part of the 100k genomes project because one of my sons was born with a very rare (endocrine, as it happens) disorder. Maybe one day they’ll be able to figure all this out.

What has surprised me though is how quickly you’re dismissed if the problem isn’t easily identified. I’ve never seen an endocrinologist, or indeed anyone other than a GP about this issue. And it’s not even like they explicitly say “sorry, we can’t help you” - nothing happens. I go through phases of years where I just stop bothering, and then I’ll think no, this is really not right, there must be something going on here and I go back and ask for more tests and they’re normal and I’m back where I started.

I am at least fortunate that it’s nothing that’s killing me (as far as I know, at least!). It’s just the thought of another 40+ years of living a tiny bit of a life is really getting to me today.

Yes, B12 is normal. I had a serum B12 level of 254 which is low in range and some say is a deficiency. I took that info to my GP and got laughed out of their office. Paid for an active B12 test (twice actually) which was absolutely fine. Took my private thyroid results which showed I was very close to the point of subclinical hypothyroidism and pointed out I’d be treated at that level in most other countries - they reluctantly agreed to another test which was normal.

If it’s related to my cycle I figure it has to be hormonal somewhere, somehow. But they just think I’m clutching at straws.

Yes a b12 of 254 is low enough to be causing you problems. I do sympathise with the GP response though, I've had appointments like that. It's hard to summon up the energy to keep tackling it when you already feel like shit. Please do consider checking out the b12 deficiency/pernicious anaemia Facebook support group, it's full of useful info and strategies.

The other issue is how quickly some doctors can be to dismiss things as being “all in your mind” just because they can’t find a physical/medical answer. Easier to tell someone they’re imagining it rather than admit they haven’t got a clue!

Have you been tested for hyperparathyroidism? I think that this is worse when your estrogen levels are lower so perhaps would be worse during menstruation.

I don’t worry at all that it’s something sinister

Then you definitely don't have health anxiety (I'm a cbt therapist).

Does some of it come under the endo umbrella? When was the last time you had a lap?

Also wondering about other autoimmune things :
Coeliac?
Ehlers danos?
Arthritis?

Have you been checked for lymes disease?

I've no idea if this is the right sort of person but I heard Dr Jan Toledano of the London Hormone Clinic on a podcast the other day who could be useful? Can see you've had a few recommendations though, hope you get to the bottom of it