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

PS t1mum3 My platelets have been between 140 and 144 (range starts at 140), so just about in range. They went very low in pregnancy though.

Op

I have some similar symptoms am 46

I found out I had ANA present after tests following my second MMC. Gp seemed unconcerned as tested for SLE etc and all fine.

I went to see a haematologist as a few of the symptoms you describe and particularly dry eyes. He suggested possibly sjorgens but it wasn't perused any further at this stage.

I also have low B12 although not PA as intrinsic factor all checked out. Have injection every 3 months, following the initial loading.

I have worries ticking in the back of my mind regarding what could be going on.

Hope you feeling better and get some answers, will watch with interest.

I would be wary of medical advice on MN, we all have the best of intentions and can share experiences but aren't qualified to diagnose (and those that are qualified, wouldn't diagnose via an Internet forum )

I agree it can be useful to be pointed towards things you wouldn't have known, but it can be a bit of a rabbit hole and also worrying sometimes! In your shoes I would definitely be asking (and politely insisting!) for a referral to a rheumatologist. Other advice would be, if there is ever a locum in your surgery, they can be really good at spotting "patterns" as they tend to take an overview as they don't know your history. Also some patients don't like seeing a locum so they may have more appointments available if you wanted a double slot. I once had something spotted by a locum (who also referred me to a consultant) in these circumstances.

I hope you get it sorted, the dismissal of womens' health concerns really angers me. I would have thought your results especially the ANA warranted a rheumatologist referral. There seems to be so much regional variation re criteria as well.

MarthasGinYard
The IF test they do for PA is only 40-60% accurate, but it sounds as though your GP is doing the right thing keeping you on regular injections anyway. My GP gave me the loading doses then said I have to wait 6 months and they will test my B12 again - this means I can't take over the counter B12 supplements as it will skew the test results. I also tested negative for IF but eat a diet rich in B12. Hope you get to the bottom of your problems too.

edannie118
That's curiously similar to my situation! I have some but not all of the symptoms of Scleroderma. How was yours eventually diagnosed. My skin in stiff and dry but not anything like the pics I've seen online.

WeBuiltCisCityOnSexistRoles
Thank you. I'm not really after a diagnosis. Just a bit lost not knowing whether I just need to pull my socks up and get on with things or whether I might actually be ill.

I hope you get to the bottom of it. Your symptoms and results do seem over and above the usual knackered middle aged woman feeling (I speak as one myself ).

I think sometimes, especially with auto immune stuff, there is stuff that just isn't "known" yet. I have a diagnosis of an AI disease but have other (serious) symptoms which don't fall under the umbrella of my current diagnosis. Last week a consultant said to me "the chances are in five years we will know what links this together and may be able to treat it, but medical research isn't there yet".

I wonder how many women are "written off" with fibromyalgia (no offence intended) etc who are in the same boat.

You need to see a rheumatologist

My husband is one and said he would want to see you with those symptoms and results.

You sound quite unhealthy, sorry to say. What do you eat? How much exercise do you get?

I'm a similar age with 2 kids both at secondary, 1 ASD. Was well, fit - swimming 3 times a week fairly long distances, working and looking after kids and house fine and thin until couple of years ago then suddenly wham everything started going wrong at once.

My doctor said it wasn't just an age thing but not got any satisfactory answer out of doctors and have become too ill to work other than odd freelance job from home. When I've seen doctors on a good day get told its anxiety / depression etc, when I've got so ill I've needed to go to hospital I get referred for cancer tests on 2ww and get prioritised at hospital. But cancer tests have been negative. Anxiety / depression levels same as they've always been - anxiety may be part of it but have had lots of irregular bleeding including from bladder and bowel. Had an operation to remove fibroids but no real improvement. Was getting constant flu like feeling and fever every 2 weeks or so lasting 2 weeks with aches and pains including in night. Chest pains at one point but heart tests fine. Did have low iron but has been corrected. Long term antibiotics for Lyme have helped - I had the rash but had to get these myself out of desperation of feeling like death for a year. Since I took those I have felt quite a lot better but of course would have been untreated for a year if that. Very first symptom was urine incontinence coming on very severely almost instantly and that was pre when had Lyme rash. No prolapse, regular utis. CT scan showed an enlarged adrenal gland which doctors said needed monitoring but my doctor just shrugged his shoulders and said how can I do that.

I currently have stopped feeling like death everyday but if I try to exercise / move I get in pain very quickly and very dizzy. I literally tried jogging for 2 minutes the other day and had leg pain for a whole day afterwards. It's like being 70 mid 40s and no-one cares much. OH were concerned about MS but can't get doctor to refer, same with Lyme. Lyme and MS look similar. So can sympathise but don't know what the answer is.

Do you have health anxiety? You seem incredibly knowledgeable and preoccupied about your health? Please don't take this the wrong way, I have a good friend with terrible health anxiety and like you she notes every small detail of her health and has had numerous scans, tests etc all show everything seems pretty normal.

It may not be the case for you, but I had quite a lot of your symptoms which were totally relieved by HRT. Menopause can be extremely debilitating. You say you are taking HRT, but perhaps the dosage needs to be stepped up?

Thanks again everyone - you're all fab. I think I'm going to concentrate on trying to get referred to a rheumatologist.

redannie118 No raynauds, no. My fingernails look fairly normal to me - but do have fine vertical ridges on them, which may be normal!

GirlRaisedInTheSouth I feel unhealthy! But this is all new to me. Until the past couple of years I'd barely been to the doctor's as an adult (except in pregnancy). Never needed antibiotics. No regular medications. Stomach issues are one of my main problems, so I do struggle to eat well sometimes. However, I eat overall a fairly balanced vegetarian diet including lots of vegetables, dairy and iron etc. I don't exercise as such but I'm very busy (housework, pets, children, gardening, etc.) and walk briskly for about an hour most days. I'm slimmer than average (and losing weight). The thought of doing exercise on top of all the other stuff I have to do makes me want to cry :)

Fazackerley I don't think so. I do worry about this too though. On better days I tell myself it must be all in my head and I need to just power through. But then a couple of days of not being able to eat or with my hands so stiff/painful/jerky that I struggle to do basic tasks and I think I really need to get this sorted. I never admit being unwell to anyone in real life, except my long-suffering DP. I've only had 2 days off work in 4 years. My blood test results are abnormal. I can't be imagining that?

no not at all. i hope you find a solution. Fwiw i stopped being abke to exercise a few years ago, if i wnet for a slow run I'd be a cripple the next day. I wasn't expecting HRT to change that but afyer 5 months im back exercising happily. no one is more surprised than me!

You mention stomach issues, have you ever been tested for coeliac disease? That can cause problems with absorption of nutrients such as iron and b12. That plus various nutrient deficiencies could account for a lot of those symptoms.

Yep, they did a biopsy for Coeliac, which was negative. I pretty much expected that though as my bowels don't give me any trouble!

I would focus on getting to the bottom of the blood test abnormalities to get a rheumatologist referral. As you can see on this thread, there are lots of symptoms which can be quite easily dismissed by GPs as they are generalised but abnormal blood tests should provide a reason to test further. Check what your platelet results were before you go as this, alongside the positive ANA and some symptoms can be diagnostic.

I would ditch the dairy and see what happens.

GirlRaisedInTheSouth I'm not sure that cutting out a whole food group would be a good idea, especially as dairy and eggs are the only natural vegetarian sources of B12, which I'm already deficient in.

What HRT are you on?

I've got some of the symptoms that you describe. In my case all of mine started to manifest within less than a year after having surgery for a hernia that involved the use of mesh. I've been to the gp more times in this period than I ever had pre surgery. I'm still trying to get someone in the medical profession to agree that the mesh may be the cause and that it's not coincidence that I have such a load of seemingly diverse symptoms.

I was reading yesterday about a guy who was suspected of being Celiac due to anemia. Had a biopsy done that came back negative.ut his doctor was convinced it was that so got another biopsy done and that one was postitve. It turns out he had blood in his gut the first time that caused the native result.

You do seem to have all the symptoms associated with Celiac disease.

Fazackerley I'm using Everol Conti patches:
3.2 mg of estradiol hemihydrate
11.2 mg of norethisterone acetate

I have no idea whether this is a high or low hormone dose...?

No foreign bodies in me as far as I know MrsMoastyToasty :)

swingofthings I do feel that my stomach issues are at the root of all of this, but not sure I could convince a dr to investigate further after negative biopsy. I'm hoping that I might get referred to a specialist though.

Thanks!

Obviously this is anecdotal based on my mild experience- she starred to loose weight, similar gastric issues to what you describe, hair falling out, some stomach pains. Pale gassy stools. Visibly Weakened. Went through all sorts of tests including pancreatic things, but in the end was told to cut out gluten and milk. Gluten solved it, though it was technically wheat she worked out later (it's just easier for her to say and act if it's gluten) and then lactose was a second culprit. So she takes the lactase tablets or lactose free.

You certainly have some other issues going on which are worth clarifying. Regarding eyes - simply as I googled recently due to repeated dry eyes and skin around eyes - low vitamin a can be a factor. Probably best not to take supplements but I've noticed an improvement to the terrible kp on my arms after a few weeks of extra carrots and pate. The eye issue for me might be bf/ sleepless nights but I didnt know skin could be a symptom.

If you aren't absorbing nutrients due to a gastric issue you could be low in several things, so really this needs sorting out.

I had an addisons test as I ran into issues post first child thanks to not well controlled thyroid and hyper mobility which spiralled down hill. An endocrinologist suggested a test as my periods had stopped due to bf for nearly 2 years - he seemed to be clueless that this can happen but I guess it was good to rule it out. So it could be worth asking to rule it out due to the sudden stopping of periods. I didn't have it. He did keep asking me if my skin had changed as a tanned a appearance can be a symptom.

I did live in a state of cfs for a couple of years, also had gastric issues for a while that turned out to be ibs. Pregnancy actually fully sorted me out, and being diagnosed with asthma. It's extremely hard to live like that. It's not health anxiety, we really have to get organised in how we approach Gp appts and explore possible avenues to get to the route of the problem. Gps look for red flags but sometimes it's hard to communicate to them exactly what they need to hear. Or something can be hiding in plain sight - I kept being asked if I had asthma; at that point I didn't as I hadn't been diagnosed! I had to ask to be tested after speaking to a nurse friend. Sometimes a Gp isn't on the ball and it's worth getting another opinion.

I hope your appointment goes well

Ps, mil had coeliac tests and even a biopsy, which was clear. It was basically the final thing the consultant suggested, to try an elimination diet.