GP thinks I’m crazy!

[BexAubs20]

Ok so I’ve been having symptoms for years now and been tested for all kinds of things via bloods, stool and urine samples. The only thing that came back positive was low vitD which I’ve been taking daily for months and still don’t feel any better. I’ve got a tugging type sensation in my lower tummy either side of my hips as well as the following symptoms; Headache
Nausea
Severe back/ hip pain
Rash on face & under breast & chest & arm, back of knees on hips and eyes
Bowl issues
Dry sore bloodshot eyes with rash on eyelids
Phlegm
Depression
Anxiety
Fast/ irregular heartbeat
heavy, irregular periods 2 x per month
Pain under right side ribs
Heavy legs
Mouth ulcers
Bruise easily
Dry nose with scabs
Dry sore lips
Random body twitches
Toenails peeling off
Brittle fingernails
Dry hair
Twitch under right eye
Acotites- swollen tummy
Fatigue
Aching joints
I’m at my whits end! The fatigue is the worst. I’ve had to give up work. I wake up exhausted and I’m struggling to carry out daily tasks. Even climbing the stairs hurts! I’ve asked for a gyno referral but apart from that I think they have ruled out everything else. I’m 37 so poss peri menapause but the test they did came back negative for that too! Does anyone else have these symptoms and what was your diagnosis? Thanks

Hi I've also just remembered (sorry) that in the same timeframe as what I described I was also diagnosed (via laparoscopy) with endometriosis. As part of treatment for that I had a mirena put in and my recovery followed that. In the same timeframe as the other treatments. Gynaecological symptoms/hormonal imbalance definitely worth investigating.

@Helterskelterthroughtheday No, mine doesn’t appear to be linked to Covid at all (I had it once, at the start of the pandemic and very mildly) but that does seem to have been the case for lots of people. It’s not really clear what triggered mine but there is so much that isn’t known about it. I’m glad your DC is doing well now they are on the right treatment.

If its B12 one injection wont fix anything - the loading doses are important and the Nice guidelines are clear

I have psoriatic arthritis. My rheumatoid factor was always negative but I was referred to rheumatology anyway as I had a badly swollen hot knee, and knee surgery showed inflammation in the joint lining. Initially I was diagnosed with zero negative arthritis but it changed to psoriatic arthritis. Even though I don’t have bad/proper psoriasis but I had scalp and ear itching and issues on my toe nail and fingernails. I can’t see from the bloods but have they tested your ESR and CRP?

I also have IBS which I have had for years, even before the arthritis diagnosis. It got a lot worse over the years to the point where they investigated for irritable bowel disease and caeliac (apparently once you have one autoimmune disease you are more likely to develop another). I had a scan (sigmoidoscopy) and IBD was ruled out. They also ruled out cealiac but I stopped eating gluten anyway and it made a huge difference (together with arthritis treatment). I also don’t eat/drink lactose which has been longstanding and helps.

I think I also fit the criteria for fibromyalgia as well. A private rheumatologist told me this once when I went for a one off consultation. I have been prescribed amitryptaline, both for my IBS and to help with pain but haven’t yet been brave enough to try it.

Anyway I think rheumatology to investigate some of your symptoms would be helpful. Others have suggested Lupus, Sjorgens etc. all of which would be under rheumatology.. do not let the GP fob you off because the rheumatoid factor is negative.

Re stress etc, it definitely has a huge impact on me and is a factor to consider as well but I don’t believe it’s stress alone that’s causing these issues. I think stress probably exacerbates the inflammation and other stuff though.

it’s so so rubbish when you feel awful. I 100% feel for you and hope you get to the bottom of things

You need to be careful with one aspect of this. It has been known for private doctors to diagnose adrenal fatigue, which is not a real condition. The symptoms are vague enough not to have a definite test and the prescription of supplements to patients who are desperate for a diagnosis/explanation for their ill health is really exploitative. In reality Cortisol, produced by adrenal glands, fluctuates a lot during the day so blood tests are meaningless unless part of a controlled or timed test. Adrenal insufficiency is an actual life threatening autoimmune condition, diagnosed with a synacthen test, recognised by the NHS and treated with steroid replacement.

https://www.cedars-sinai.org/blog/debunking-adrenal-fatigue.html

Erm, what exactly does this mean? You know how to administer IV injections? I assume as some kind of beauty therapist rather than via medical training or you wouldn't be on MN looking for a diagnosis. I would hazard a guess that if you have been dicking about giving yourself vitamin infusions, you have completely upset your normal homeostatic mechanisms. Maybe lay off the self treatment for a bit?

Re Coeliac disease, it's very common here in Ireland and if you have symptoms, a biopsy may be be done even if the blood test is clear.

https://www2.hse.ie/conditions/coeliac-disease/diagnosis/

I wish you the best!

You also want to check if your blood test checked your IgA level, which can lead to a false negative if you're IgA deficient. Plus you need to be eating two meals a day of gluten for six weeks before the blood test.

Someone earlier suggested going gluten free. Do NOT do this, it would mean any blood tests wouldn't be accurate, you must be consuming gluten to test for coeliac by blood test.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/?&&type=rfst&set=true#cookie-widget

Maybe you need another GP.

with all due respect for GPs my Rheumatologist told me most GPs don’t request the right tests or know when to look for.

Have you been referred to a rheumatologist or endocrinologist?

Also rubbish about not needing a fibromyalgia diagnosis especially if it’s effecting your life and work so much, you need that medical diagnosis if you want to claim benefits. Also I have fibromyalgia and since my diagnosis and treatment plan was put in place my symptoms have been more bearable, ok so there is no cure but there are absolutely treatments that can help symptoms.

AMH is more accurate for peri menopause.
i would be looking into ehlers danhos with your symptoms- are your joints hyper mobile

I'd ask for actual result of ferritin as the normal range in too high imo.

Op. I've had similar tests. The dr told me finding nothing was good news. It's hard to see it that way, but normal bloods is a good sign. I was also told to take vit d.
Dr said it could be fibro, but is going through steps to rule out other things.

If you find anti histamines generally helpful I would seriously consider researching histamine intolerance and following a low histamine diet for 3 weeks at least and see if it helps. Untreated it can develop into MCAS. A nutritional therapist will be able to support you to navigate it. A low histamine diet is restrictive initially but doesnt have to be followed long term.

www.nhs.uk/conditions/ehlers-danlos-syndromes/

I’m going to suggest your diet/weight won’t be helping if you are overweight. One hugely underestimate the role diet has on your body. I know lots of women on weight loss injections. Including myself who feel SO much better all round having lost one or more stone. So I’m going to suggest fasting and losing weight.

I'm almost certain what you are describing is ehlers danhos - brushing easily and stretchy skin are hallmarks Of it

What’s your diet like?

I felt awful about a year after having a child - fatigue, low moods, itchy skin and rashes, brittle nails and bad skin. Looked and felt a mess. GP didn’t find anything major on tests beyond low Vit D and low ferritin, for which I take supplements.

Out of sheer frustration I made some changes to my diet that have made a huge difference: I eat less sugar and refined carbs and lots of probiotic foods including nuts, seeds, leafy veg and yogurt/kefir/kimchi etc. I felt so much better in about six weeks.

i honestly thought I’d developed an autoimmune condition or fibromyalgia - both of which affect family members. But it mostly cleared up when I changed my diet.

im not saying this would necessarily work for you but could you ask GP to refer to a nutritionist? And I assume you’ve had your blood sugar checked?

I hope you get to the bottom of it and start to feel better - good luck xx

Also to add there is a connection with histamine intolerance and ehlers danlos.

I’m a doctor, but I’m glad I’m not a GP.

For thyroid function most GPs only test TSH which is the hormone your pituitary gland throws out to deal with the B12 in your blood ( not the correct t technical terms but you get the gist)
They don’t routinely test T4, T3 and reverse T3. You can get private blood tests from Blue Horizon and Medichecks — look for discount codes online as they do regular offers.
Also, if you need B12 supplements, injections work best, you need to have your folic acid levels checked too as they rely on each other to work correctly.

I did have a lot of your symptoms and was diagnosed with fibromyalgia and CFS but you have to rule out everything else first.

Hmm. Not sure why you describe bloating as ascites. Sure you've not fallen down the WebMD rabbit hole? It can be hard to get out of as it ends up in an anxiety spiral.

Sorry if someone has posted this already and take this with a pinch of salt, but this is a list AI came up with (I'm sure many of these will already have been mentioned and even explored already), but just in case:

Since your symptoms affect multiple systems (skin, joints, digestion, heart, and energy levels), it might be worth pushing for more testing, particularly with a rheumatologist, endocrinologist, or functional medicine specialist. Here are a few possible areas to explore based on your symptoms:

1. Autoimmune Diseases

Many of your symptoms (fatigue, joint pain, rashes, digestive issues, dry eyes/mouth, irregular heartbeat) could be linked to an autoimmune condition, such as:

• Lupus (SLE) – Rash, fatigue, joint pain, mouth ulcers, photosensitivity
• Sjogren’s Syndrome – Dry eyes, dry mouth, joint pain, fatigue
• Celiac Disease – Digestive problems, fatigue, brittle nails, hair issues, bruising
• Psoriatic Arthritis – Skin rashes, joint pain, fatigue
• Ehlers-Danlos Syndrome (EDS) – Joint pain, fatigue, easy bruising, poor wound healing

1. Hormonal Imbalances

• Perimenopause – Even though your test was negative, hormone levels fluctuate, and blood tests aren’t always reliable. Symptoms like irregular periods, fatigue, and depression fit.
• Thyroid Issues (Hypothyroidism, Hashimoto’s, etc.) – Fatigue, brittle nails, hair loss, heavy legs, anxiety, dry skin/lips
• PCOS – Irregular/heavy periods, fatigue, acne, anxiety/depression

1. Chronic Fatigue & Nutrient Deficiencies

• Iron Deficiency / B12 Deficiency – Can cause severe fatigue, bruising, heavy legs, palpitations
• Magnesium or Electrolyte Imbalance – Muscle twitches, heart irregularities, cramps
• Mast Cell Activation Syndrome (MCAS) – Chronic rashes, allergies, gut issues, fatigue

1. Liver/Gallbladder Issues

• Pain under your right ribs, fatigue, and digestive problems might point to liver stress (check liver enzymes, bile function).

1. Lyme Disease or Chronic Infections

• Unexplained fatigue, joint pain, neurological symptoms

What You Can Do:

• Ask for an autoimmune panel (ANA, ESR, CRP, RF, etc.)
• Get a full thyroid panel (not just TSH but also T3, T4, antibodies)
• Request iron, B12, magnesium, ferritin, and electrolyte levels
• Ask about cortisol and adrenal function (ACTH test or saliva test for adrenal fatigue)
• Consider a second opinion from a rheumatologist or functional doctor

Is it possible that the symptoms are being caused by a number of different things and have you been checked for gallstones?
It wouldn't explain all of the symptoms but the pain under right side ribs and fluctuating results of liver function tests could point to gallstones. I'm fairly sure my gallstones were also linked to other unexpected symptoms.

Did they check your folic acid? I've been getting blood tests for years for fatigue, brain fog etc and nothing helped then on the last test they checked my folic acid for the first time and it was very low- I feel so much better now- I think if your folic acid is low you can't use your vitamin b so everything is off.

It wouldn't explain all your symptoms but potentially some of them.

Also i'd ask for the actual numbers because ferritin in particular can cause you to feel awful it if it's low but what the NHS class as normal is already low!

You sound exactly like me i got diagnosed nearly two years ago with Myalgic Encephalomyelitis (chronic Fatigue syndrome) fibromyalgia and hypermobility. It was a long slog trying to find answers but even now im not 100% convinced as I have really bad episodes without any triggers which are supposed to bring it out in you so 🤷‍♀️ sorry to hear you are struggling too.