Am I ill, or just a middle-aged woman?

[BlackInk]

I'm not sure what I'm hoping to get out of this post, but I get the distinct impression that GPs at my surgery are fed up of me, think I'm a hypochondriac and want me to just go away.

I'm 45 with 2 primary school aged children and I work full time (DP works part time). I had a sudden menopause 2 years ago - periods just stopped with no warning.

LONG AND TEDIOUS LIST OF SYMPTOMS
Nausea
Gurgling throat
Churning stomach
Stomach aches, bloating and spasms
Acid reflux
Weight loss
Twitching
Stiff, weak, painful hands
Swollen finger and foot joints
Clumsiness
Blurred vision
Angular chelitis
Receding gums
Lower back pain
Pins and needles
Tingling head
Poor memory and concentration
Dizziness
Exhaustion
Terrible anxiety
Zero libido
Ovary area pain
Occasional bleeding after sex

TEST RESULTS
B12 deficiency
Positive ANA
Persistent low iron
Haematocrits right at bottom of range
Platelets right at bottom of range (v low in pregnancy)
Hiatus hernia
Early menopause
Historic infertility and multiple miscarriages

FAMILY HISTORY
T1 diabetes x 3 close family members
Pituitary and adrenal tumours (mother)
Marie Charcot Tooth (father)
Addison’s Disease

No cause has been found for my B12 deficiency (I tested negative for pernicious anaemia and dietary intake is good). I was given 5 B12 injections in November and GP now wants to leave me until the summer and then retest my B12.

I had an endoscopy that was reported as normal except for a hiatus hernia, which GP tells me is unlikely to cause symptoms.

No reason has been found for positive ANA.

I tried PPI medications for a while a year or so ago, but it had no effect.

I'm on HRT but don't feel any better for it.

My GP surgery have basically washed their hands of me. I was called back by a GP after querying the treatment of my B12 deficiency, and simply dismissed. He told me I could book a double appointment to discuss my issues if I wanted to. However, I've been trying to book a double appointment for a few weeks and there is literally never anything available.

Does anyone have any experience of anything similar at all - either from a medical or personal point of view? I literally don't know whether I should be ignoring all of the above and continue to drag myself along or whether I should keep on pushing to get to the bottom of it all.

Apologies to anyone who's read similar posts from me in the past!

BI

Hi OP, the reason I suggested cutting out dairy for a while is because I had the same gut problems as you and they disappeared when I stopped eating dairy.

The interesting think is, I was diagnosed with IBS but since giving up dairy I realized it was that - rather than gluten - that was causing me problems.

As for B12, a couple of slices of toast with Marmite (the one with added B Vitamins) for breakfast every day should sort that out.

Just back to give a quick update.

GP appointment yesterday was pretty disheartening. He said that B12 deficiency was over-diagnosed and ignored all my questions about why they weren't following NICE or BMJ guidelines.

He implied that I was well, tests results over the past couple of years hadn't revealed anything worrying, etc.

He did order another set of blood tests, but more to get rid of me than anything I suspect - CRP, TSH, RWF, TTG, FBC. I've had all these tested before and everything was within normal range - although lots of things only just in range.

I did find my TSH result from 2017. It was 0.8 (range 0.2 to 5.5), which I think is good?

Thanks for all your responses everyone. It looks as though I might need to start cutting things out from my diet, which I really didn't want to do.

A couple of slices of toast and marmite a day won't cut it though I'm afraid. I was eating a diet high in natural B12 (eggs, dairy, marmite) and also taking high dose supplements (as advised by GP) and my levels of B12 still fell from 180 to 122 within the space of a year.

BI

If you can afford it, I would do some private testing. That TSH at 0.8 looks great, but if FT4 and FT3 are also low in range, you may have secondary hypothyroidism, which cannot be diagnosed by TSH alone and is therefore almost always missed by basic NHS testing.

Medichecks are the supplier of choice at the moment for the online thyroid community.

Unfortunately, you're very unlikely to feel well until your b12 deficiency is treated. Can you afford to see a heamatologist privately? Around £200 or so? I had a similar issue with gp about my thyroid, but seeing an endocrinologist changed that. He basically told my gp I had underactive thyroid and recommended treatment! Your GP won't argue with specialist advice...

Don't feel bad about suggesting conditions. You need to be your own advocate. Many medical professional ms are guilty of medical gaslighting. Look it up

Treat your consult like you are seeking their opinion but you don't need to take it. If you are not happy, see another doctor.

I would go in and ask what l else they test for. (avoid discussions about mood and anxiety unless you absolutely have to otherwise this will be blamed for all your symptoms forever more and you will just be offered antidepressants).

If they say they don't have any further suggestions ask about the certain conditions you have identified. and list how your symptoms match with the symptoms of that condition. Be firm. Ask for testing for the condition and/or a referral. Be calmly insistent. Don't get emotional.

Bring info from NHS website if possible as this can shut down the comments about not looking up stuff in the internet.

If all else fails write in saying you are concerned about your symptoms and that you have not been tested for xyz and ask for an appointment to discuss. Ask for the letter to go on your notes. Harder to ignore you when your request is in writing. Doesn't need to be a complaint.

A lot of your symptoms do sound like b12 deficiency. A negative test for PA doesn't mean you definitely haven't got PA. B12 deficiency is often not adequately treated.

Go over to the Pernicious Anaemia Society website and their for on Health Unlocked for advice. If you are symptomatic you should be receiving injections I understand. If you join the Society I understand they may contact your GP on your behalf.

Second Medichecks if you can afford it. Also trying a private doctor (general physician? Rheumatologist?) : there is much more time to listen in private consultations and you can send them information and results before the appointment. The consultations aren't as expensive as you might think if you are only used to hearing Americans talk about costs of doctors, £200 sounds about right for a consultant appointment. Although for some that is still a lot to spare.

Disclaimer: not medically trained.

I wondered if you were conflating a load of things.
Receding gums & back pain: can be normal; does improving your posture improve the back pain?

Slow onset of Marie Charcot Tooth: would relate to the stiff hands & foot joints. Physio is treatment for this, I read, may be YouTube videos & support groups.

The HRT fans insist there are 50 different sorts & they all work differently; a different sort might reduce some of the symptoms.

Digestion sounds like the big bundle of linked issues to address that won't have simple solutions, but might have common cause & solution, & could explain why B12 deficient.

I sympathise greatly with you!

I kind of fell apart from age 45 onwards...

Huge fatigue and bloated stomach eventually led to diagnosis of coeliac disease, followed within a year by hypothyroidism (hashimotos) so I am on gluten free diet and thyroxine. Periods stopped dead around same time so also take HRT.

They would find something, I would get treatment but then gradually feel unwell again. Multiple blood tests which would be 'normal' until I asked about B12 tests, it was low but not out of range but when I asked for previous results it was a clear downward trend and when I pointed this out I got B12 injections, loading dose then every 3 months.

More recently kidney tests started showing low results and most recently now liver function tests are abnormal, waiting to get that retested now.

I also have family history of autoimmune disease, type 1 diabetes, thyroid, coeliac and even Addison's run in my father's side of the family. In summary likely to be an autoimmune disease but which one or ones may take time to figure out.

I was offered antidepressants many many times despite clearly having these conditions!

I agree with lljk, a lot of your symptoms sound 'normal ie ones that come from aging, hormone deficiency and stress. Why won't you believe all the tests and the GPS? If you want to spend more money then go to a private menopause doctor and get your hrt looked at. Then take a holiday!

Thanks everyone. I can't afford to (and don't really want to) go down the private route, so I guess I'll just keep plugging away with my GP surgery. I certainly agree that some of my complaints are standard tired-middle-aged-working-mum-stuff but I listed it all in case it built a picture for anyone. I don't see any of my friends unable to eat normally or at times hold a pen properly. Apart from the stomach problems, most of it is manageable, but I'm not sure normal...

@fazackerley "Why won't you believe all the tests and the GPS?" The thing is that the OP is showing some abnormalities on her tests which should warrant a follow up. There are so many of us that have been offered antidepressants, told to lose weight, etc and generally made to feel like our symptoms are all in the head. I personally had a neurologist accuse me of making up previous optic neuritis (diagnosed in a hospital and still evidenced by damaged optic nerve visible to opticians and opthamologists and a lesion clearly visible on an MRI). That's the level of gas lighting that occurs. I've also had a consultant ignore my extremely elevated ANA refusing to look at the result and focusing on an early clinically elevated but less significant one because it didn't fit with his immediate impression that I'm fat and forty and therefore must be making a fuss about nothing. It's really tough getting a diagnosis for this sort of thing, but the OP has abnormalities in her blood tests and clinical history (as did I) which warrant a push for a diagnosis.

Being fat and forty is absolutely relevant to health though (sadly)

Black

I understand how you are feeling and keep plugging away.

The ANA thing certainly ticks away in my mind and I wonder what is really going on.

Thank you t1mum3 and MarthasGinYard :)

GP literally thrust a prescription for antidepressants into my hand at a previous appointment.

I'm in my 40s Fazackerley but certainly not fat. I've lost at least a stone in less than a year and am now below healthy weight on the NHS BMI charts... but having said that fat 40 year olds get ill too, and the majority of times it's probably got little to do with weight or age!

@Fazackerley yes, being overweight certainly has health implications and warrants investigation rather than dismissal. I actually have a diagnosis, based on clear lab results etc. totally unrelated to my weight (although I also have a diagnosis of PCOS which makes weight loss difficult)

@blackink - I think @fazackerley was picking up on my comment. My symptoms started when I was younger and borderline underweight but as I get older and I've put on a few pounds since having children I find it even more difficult to be taken seriously.