Can anyone here help me? GP not helping...

[BlackInk]

Hello, and apologies, because this will be long!

I've been feeling increasingly awful for the past few years with a long and growing list of symptoms. GPs have been almost completely dismissive and unhelpful. Something is definitely wrong but I have no idea what -- am worried about MS or dementia (I'm 46...) but maybe something autoimmune.

Symptoms:
Stomach pain, discomfort and pressure -- no bowel problems
Nausea, sometimes severe
Indigestion, acid, gurgling throat
Twitching and fluttering (all over), occasional weird muscle spasms
Joint pain and stiffness, especially in hands
Weird sore/burning patches of skin
Difficulty thinking and concentrating
Weakness, especially in hands
Clumsiness
Constant feeling of disorientation, like being a bit drunk
Blurred vision
Pins and needles
Head pain and pressure
Exhaustion

Test results:
Hiatus hernia, endoscopy otherwise normal 2 years ago
Chronic anaemia / borderline anaemia
Low B12 (but tests for PA negative)
Positive ANA (but follow up tests for standard autoimmune diseases negative)

I eat a pretty good balanced diet (when I can eat, gradually loosing weight) and don't have any major vices! Was totally healthy before all this started, but have a strong family history of autoimmune disease.

My GP thinks this is all in my head and has tried to push antidepressants on numerous occasions. I'm just so very tired of feeling awful all the time. I feel like a shell of myself. I was given 5 B12 injections just over a year ago. Since then levels have been just inside normal range (despite taking high strength supplements on and off) so GP says no further treatment.

Grasping at straws here, but does anyone have any idea what could be going on?

Given my age, I should say that it's not menopause related. I had a sudden complete menopause 4 or 5 years ago and HRT hasn't alleviated any symptoms!

Thank you :)

Hi I just came acros this thread by accident.
I wouid change gp and start over with someone new. If they think it’s right to refer you for tests they will.
Alternatively one private appt could provide you with answers and maybe get you fast tracked into the hospital... maybe a neurologist.
Good luck

You sound similar to me. Also 46 with early menopause and joint pain but in hips knees and ankles.
Positive ANA and very low Vit B 12 (my GP refused to give me injections despite level being 100).

I have, in hindsight, had strange stomach things but due to hip pain being so bad I assumed it was referred pain.

After more than 10 years, more GP visits than I can count, 4 private consultants, I was finally diagnosed with Axial Spondyloarthritis and Hashimotos in November last year.

Given your joint pain seems to be upper body, it may not be arthritis but it could still be an unusual presentation of it.

There are other autoimmune disease which present this way with joint pain and no blood inflammatory markers.

I assume they've looked at your thyroid? If not get tested.

Whilst my AxSpa is the diagnosis as I have mri visible sacroilitis, I have perifial involvement known as enthesitis and the rheumatologist said the low Vit B12 was immune mediated and to explore autoimmune protocol diet and going gluten free.

I'm still waiting for my NHS rheumatologist appointment (the Trust website says you'll be seen within 7 days if you have inflammatory arthritis but this turned out to be more than 4months ).

So still no treatment. GP can't prescribe stronger anti inflammatory drugs as the ones left are consultant only issue. The Pain Management Clinic I went to 2 weeks ago said they don't do that and couldn't actually help me.

I always assumed getting the problem identified would start improving things however it's a long road to getting somewhere.

Sorry 😐 moaning now.

I wonder if it's worth looking up Versus Arthritis and having a look at all the various types to see if your symptoms fit.

It still could be thyroid and you could be what they call Euthyroid Sick (looks like normal function on blood test but you have hypothyroid symptoms). Look that up on thyroid.org.

It could be fibromyalgia? This one looks like a lot of different things too. You'd need to see a rheumatologist in any event to get a firm grip on what it is.

If you google some of these and print the info and take it to your GP and ask to be referred. Probably best bet.

Do come back for a handhold if one is needed.

Can you tell me more about the 'weird muscle spasms', please?

Have you had Vit D levels checked?

Did you have surgery for the hernia?

ANA is the test for Lupus, mine is weak positive. Did they diagnose Lupus?

Is calcium normal?

Do you have a figure for tsh and t4 (thyroid function)?

Have you been tested for coeliac disease?

Get tested for HIV

Wow, lots of replies, and lots to think about, thanks everyone!

I've had some basic thyroid tests and all looks normal/good even there. Calcium was low-normal a year ago. Vit D hasn't been tested. Blood test and biopsy for Coeliac were both negative a couple of years ago.

Apparently the hernia is small and won't be causing me any issues. No treatment.

I think the ANA screening is a general test for autoimmune diseases -- they did some basic follow up and I tested negative for the few conditions they tested for, including Lupus I presume.

@GladToBeSilver Really, why?

@AllTheIceCream The muscle spasms vary. I had a tight/tense muscle in one forearm that came and went for a couple of months. I also had a weird visible knot in my thigh/lower abdomen -- hard to describe, but like a lump of tight muscle that rolled/moved, felt like a very localised cramp, looked like an alien! Definitely not wind/bowels as was in the wrong place. This has only happened once but I've had a similar cramp/spasm of the muscles under my ribs on a few occasions.

I will speak to my GPs about a referral to rheumatology and consider moving if they decline.

Thanks again lovely people :)

I would ask for your parathyroid hormone levels to be checked if calcium is low - maybe you have a developing parathyroid issue?

Not the same as thyroid of course!

Ah, ok, those do sound like just muscle spasms... since some of your symptoms sound neurological I was concerned you might be describing small seizures (like if your arm was moving of its own accord or something).

All the best with the referral!

Definitely get vit d levels checked as low levels can account for the majority of your symptoms, the fatigue, brain fog, joint pain, pins and needles, weird muscle spasms and aches, weakness, clumsiness, difficulty concentrating. It affects different people differently.

I think I would find a new GP and push for vitamin D levels to be checked.

The low iron levels - are you vegan or veggie? If not then not absorbing from good and you are likely low in zinc. I would try gluten free for a month and supplement B12, zinc, vitamin D (4,000 IU a day) and iron. Seven portions of leafy greens a day. Eggs and fish. A good omega 3 supplement. Finally some magnesium.

The NHS test for B12 isnt very accurate.

You really need a full thyroid screen (not just TSH) and proper B12 and D check. You could go privately for those.

I’d get a private test for pernicious anaemia.

Your symptoms are a very good match for PA which has been allowed to go untreated for a prolonged period.

There isn't really a test for Lupus, it's what you get diagnosed with after they rule out other autoimmune issues. I was tested repeatedly over several months so my consultant could see a pattern before I was diagnosed.
Have you been seen a Rheumatology Consultant or is your GP trying to diagnose you?

I’d also request parathyroid.

I would be shocked if its not Hashimotos.
You can have hashimotos and still have decent thyroid stimulating hormone levels. I have hashis and present with every symptom you describe. I also have Fibromyalgia (often follows undiagnosed long term hashis or any other Autoimmune disease) By the way what is this 'good' thyroid levels? Do you actually know the levels of TSH and T4?

My doctor said my results were no actionable concern when my TSH was touching 10. Ideally it should be 2 or lower.

You ought to get a thyroid antibodies panel done. It is possible to have elevated antibodies with seemingly fine thyroid stimulating hormone levels.

IF you have hashis it will often go haywire as you approach the menopause and you experience fluctuating hormone levels, meaning you'll still have periods but have menopausal symtoms that can be as awful as women who are in full menopause ifywim. It can also start earlier.

I would start with eliminating thyroid disease then investigate other causes

Thanks again everyone. Lots for me to think about and attempt to raise with my GP.

Have managed to find my TSH results and they were 0.8 in 2017 and 0.7 in 2019 (range 0.2-5.5) so that's low and good, right? I will try and persuade my GP to run further tests and consider parathyroid/hashimotos though.

Also going to ask whether they would refer me to rheumatology, neurology, and gastroenterology...

Following this thread closely as I'm in a similar position, similar age with scarily similar symptoms. I've been ignored for a year by various GPs after basic bloods come back as normal.

The only abnormal tests I've had (recently) have been low iron and raised inflammation markers.

I only have half a thyroid due to surgery.
I'm on medication that blocks the absorption of B12. I'm not sure if these have been checked as GP and even the nurse wasn't forthcoming with information when I asked. I was just told 'lots of tests have been requested'.

All the comments have really helped me plan my next GP visit.

Thank you OP for starting this thread. It's something I've been meaning to do.

Have managed to find my TSH results and they were 0.8 in 2017 and 0.7 in 2019 (range 0.2-5.5) so that's low and good, right?

Very good actually. Still worth doing antibody profile though

It's possible you're 'on the way' to presenting with something that isn't clinically measurable yet. Some people have things like RA or lupus with symptoms years before diagnosis, as nothing concrete emerges that can be measured.

hope you find the cause. It's horrible to be ill with no explanation

I have MS, just diagnosed so really not a "pro" in the area at all.

One suggestion I have is that if you have an eye A and E near you, next time you have blurred vision, go straight there. They can do the tests for Optic Neuritis (I could also tell you a quick way how to this with pretty good accuracy but it's probably better you let a professional do it first...) This is the inflammatory illness that is associated with MS when it affects your vision.

Have you ever had psychological trauma in your life? That can cause those symptoms too - however - your GP should be referring you to a specialist trauma treatment facility and not putting you onto ADs if that is the case.