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

Apologies if someone has already mentioned this but it sounds like it could be long covid. When did it start? I don't have the exact symptoms as you but the crushing fatigue, anxiety and depression and then so many other odd symptoms. Low vit d and iron showed up for me. I had period changes as well although settled now. It's triggered peri menopause and full menopause in some women. Symptoms vary so much between people. The rash reminded me of something I read about related to mast cells and histamine release. https://www.drbrianlum.com/post/long-covid-symptom-histamine-intolerance

Hi hope you get to the bottom of this. Have drs considered endometriosis? Depending where there are growths can cause many of your symptoms and as the body is constantly under attack from itself is exhausting

So sorry for repeating previous people’s posts! 😅

So as a person with three chronic illnesses, who had to give up work too, these are my thoughts.

very much sounds like fibromyalgia, M.E, Long covid or/and FND. A diagnosis won’t help but whatever you get please get it in writing to help you get any help you need.

I suggest you look at neurosymptons web site.

other ideas: sometimes you need to seperate things . So some of these things you can treat individually. ( if you have the energy)

Chronic illness is hideous, often side lined, general gps are really not plugged into treating it.

I would ask to be referred to a rheumatologist or neurologist or M E fibro long covid specialist in your area also a OT for ME/ long covid can help hugely . They do exist.

You will hate this advice! Stop doing anything. Treat yourself like you have flu , put yourself to bed and do nothing . Except drinks easy meals etc. do not push , do not exercise!
the new 2023/4 nice guidelines recognised that severe damage can be done by pushing and exercising if you have severe fatigue symptoms.

So I pushed and exercised ended up having a functional stroke in 2018 and am now often in a wheelchair. My brain just shut down said that’s enough and I collapsed no walking no talking no arm movements. I was in bed 6 months . Now some days I can do 300 steps some days 2000 a day . But everything is meticulously planned. I am just getting a tiny bit of life back due to accepting my disability.

can you see another gp in your practice?
One thing to know , you must be brave and ask for what you want, ask gp for referrals. “I would like a referral too ….” They are not mind readers and often will not offer as they are not sure where to start.

I could list your ailments and say do this that etc .
So hair nails get some nutri gummies from amazon they are amazing. Ferroglobin is a great supplement to take.
For bowel issues take 200 mg of peppermint tablets twice a day .
eye: get some good eye wetting drops from amazon .
Lips get a good lip balm not Vaseline .
get some magnesium capsules two a day at night I take “better vits”

for aches and fatigue. Give your body time to rest. A better you magnesium spray is excellent. Try meditainment a great guided meditation. Sleep,doze, use audible, pod casts etc, limit tv time as eyes get tired. Limit screen time, limit speech ( my hardest thing )

EMDR and CBT counselling are brilliant. They give you permission to get your feelings really out there and to moan, off load . Then your counsellor will give you small points to work on each time .

if it’s this sort of illness it takes a long while to notice any improvements. And the worse thing is you feel awful and guilty frustrated etc because it’s a chronic illness not acute.
you will loose friends and family who don’t understand , and have a much smaller group around you but they will be genuine .

lastly, so sorry this is so long and doom laden! Have you suffered any trauma in your life? Medical ? Physical? Mental ? This can be a reaction to suppressed traumas . Saying yes too much , putting others first always.

And if you think that sounds all very very expensive,
being ill is very very expensive.

sending love best wishes and gentle hugs . Please rest rest rest to give your body time to heal . It’s telling you something.

Great advice ! pacing is the only way .

many gentle hugs to you.

Sounds like some kind of autoimmune thing. Have you had a lupus screen? ANA antibodies etc?

I said more often than not diet and exercise will help. I didn’t say it would help all of the time 😂 Get a grip

Ask your GP to test your thyroid again especially your T3 and T4 levels,

This is from the NHS site.
Symptoms of an underactive thyroid
Many symptoms of an underactive thyroid (hypothyroidism) are the same as those of other conditions, so it can easily be confused for something else.
Symptoms usually develop slowly and you may not realise you have a medical problem for several years.
Common symptoms include:

• tiredness
• being sensitive to cold
• weight gain
• constipation
• depression
• slow movements and thoughts
• muscle aches and weakness
• muscle cramps
• dry and scaly skin
• brittle hair and nails
• loss of libido (sex drive)
• pain, numbness and a tingling sensation in the hand and fingers (carpal tunnel syndrome)
• irregular periods or heavy periods

Elderly people with an underactive thyroid may develop memory problems and depression. Children may experience slower growth and development. Teenagers may start puberty earlier than normal. If you have any of these symptoms, see a GP and ask to be tested for an underactive thyroid.

Please check for human parasites, many of your symptoms are sign of parasite overload. I know many of you don't believe in them, but check the holistic community online and you will be surprised. Try an antiparasitic tincture or medications for 1 -2 months and each day take binders otherwise the effect from detoxifications from parasites/ toxines and heavy metals will be bad for weeks before you heal.
Just do some digging in the natural/ holistic world, there are also many books you can buy.

Alot of those symptoms are b vitamin deficiency

Have you tried the FODMAP diet? You should, nothing to lose at this stage. Sounds like your GP has given you just about every test they can and now you are going in with an armful of more possible diagnoses. It's too much 'noise' and it's not going to help you, especially if you mentioned ascites.
I suspect all of these replies are feeding a need that would be better off by you stepping back, focusing on a new GP (this one isn't going to take you seriously anymore, not good but there are many who diagnose themselves, have every test possible and don't accept there isn't anything wrong.)Not that I'm saying you are like that but my mother is and it is exhausting.
Have you had any psychological support? You should. It can help you narrow your focus, not be so overwhelmed with possible 'conditions' and improve your approach so that you ARE heard.

Ok, but that’s not treatment is it.

Coeliac disease is confirmed/ruled out by an endoscopy.

Sorry to be selfish if Someone can also help in alwaysss tired iron levels are fine I take high multivitamin supplements started magnesium can feel slight difference....I'm vegetarian too well I can tolerate chicken but don't like it & don't like meat... But I'm tired to the point where I can nod off instantly middle of convo or with mug in my hand while I'm doing the dishes i work 18 hours a week... But most evenings I can't physically get up I nod off on the spot sitting upright on the sofa by the time I get an energy boost it's 10/11 then I'm cleaning the dishes ironing etc and before I know it's 2am I have always manged most of my life with minimal sleep around 4hours but now I feel like it's caught up on me. I'm in my mid40s. There was also couple of times where I have had a phone call and I'm listening to my friend or family & I have dozed off for a split second. Isn't it usually the case the older you get the less sleep you need. I'm sleeping lil better now prob around 1.30am. Any advice? ... If I'm up I'm up and don't feel sleepy I can easily stay up throughout the night but once I sit down I crash out. And then it's a vicious circle I can't get up. I've always just worked better during the night. Abit of me time- I like the peace not sure what else to add.. Sorry for gate crashing I've raised it to my dc that I'm always tired but didn't tell her to what extent! Each time we do a blood test then it just gets forgotten about.

B12 can be dangerous if taking too much, and who knows what it too much?

Vitamin B complex is safer, but anything you take you have to tell your GP about. If you take stuff he doesn't know about, he has the right not to treat you. It is unlikely, but it is so much better to tell the GP.

You need full body ct with contrast

I've read you can't overdose on b12 as it is a water soluble vitamin, and in Japan they treat patients with doses of it far, far higher than we do in the UK, but I am cautious and agree you should always consult a qualified medical professional. I told my usual GP and two nurses who administer my b12 plus consulted a private doctor. I believe vitamins B3 and B6 ARE dangerous if taken in larger doses.

It sounds like autoimmune disease and yes there are loads, I was just lucky that they found mine during a hospital stay for something unrelated, and my fatigue was observed by a Dr who ordered a different set of tests. I have PBC, my immune think my liver is a foreign object and is constantly attacking it, I have most of those symptoms that you listed. I was told it was Fibromyalgia, then ME, then CFS, until they finally found this.

I have GBS /CIDP, diagnosed by spinal tap. They injected my spine with a dye I turned out to be allergic to, so learned to walk again. GBS is an inflammatory disease of the central nervous system, like something shorting the whole house electricity supply and an electrician putting it all back wrongly. My reflexes were reversed, which also helped the diagnosis. If it starts in the feet/legs you have a chance of survival. If it attacks the nerve supply to the heart, it is death, unless you are able to be put on life support. I didn't, but it has been hairy a few times.

CIDP is the chronic form. There are so many ways doctors can diagnose the many diseases of the central nervous system.

Most neurological conditions can be diagnosed. Many of the OP's symptoms are easy to treat. I have suffered many of them, and the suggestions I made work for me. It doesn't involve much money, so worth a try.

Depression is a symptom of underactive thyroid gland. They diagnosed that at the Hospital for Nervous Diseases in London. Once I had the thyroxine I wasn't depressed. They also diagnosed carpal tunnel syndrome when I lost the use of my hands. I had them operated on and can type again. That is good, because speech is sometimes difficult.

I also have polymyalgia Rheumatica, which is very painful. That is diagnosed by a blood test. It is in remission after a course of prednisolone, which also stopped me leaking. Dr. says it does that sometimes. A bonus. Childbirth is not without it's adverse effects.

I have 21 items on my repeat. They all work, because I have not been in hospital for a long time. I buy vitamin B complex and vitamin E, which are fairly cheap and not POMs. Vitamin B complex cure the sores which come in the corner of my mouth, so I know they work. Vitamin E is for nerve repair. They don't heal nerves, or there wouldn't be any paraplegics, but I have noticed a difference over the past 4/5 years. I had them posted in Covid, and still do. They are in my notes.

My doctor prescribes vitamin D3 because I cannot get out in the sunshine. I feel very sorry for Muslim women who are completely covered up. They don't get out in the sun to absorb the valuable effects of sunlight. Covering up has only been a thing since the early 1980s, so have yet to see what effects it has on children. The Taliban have forbidden windows now, so the women cannot even get the benefit of the sun shining in the house. It is cruel.

Woofie7 ·

Lip balm is mostly vaseline/petroleum jelly/paraffin and more expensive. It doesn't only ease sore lips, it replaces cells lost. I wouldn't be without it.

Burn dressings are composed of a paraffin/petroleum jelly gel. Burns units wouldn't use it if it didn't work.

I cannot afford to by fancy stuff, and when I can use the cheapest, I do. I try to pass it on to others.

Sometimes the nerves on my skin are like burns, but nothing there. Usually skin is burned in the sun. I cannot afford the usual sun lotions, so use the calamine lotion, which is very cheap and has the same effect. As my skin isn't burned, just feels like it, I don't waste money on fancy stuff.

When you had the blood tests, were you taking any of the vitamins you say you are taking? If you were taking vitamin injections, for example, and the liver function test was normal, it might be worth having it done again after abstaining from the injections for a few weeks.

Most of your symptoms are very common. I have told you what works for me. Try for a week and see if it helps.

Your blood tests are normal and you shouldn't worry if you follow advice.

Having said that, my GP sent bloods to the lab several times for thyroid test and they kept coming back normal. My weight was getting high too. He said he was so sure my thyroid was not active, so sent me to a London hospital, where they diagnosed hypothyroid and I was so depleted, I needed a high does to put it right. I shall always have to take the thyroxine.

I am sure your GP would have repeated any tests he thought were wrong.

Did they test your T3 and T4 levels? Usually they just test THS levels which doesn't actually tell you what your thyroid is doing, just if your thyroid is being stimulated to produce more. You can ask for a full thyroid panel when you're getting your bloods done.

Anything that I put here, have a quick Google to check for yourself, it's all very accessible information.
B12 is responsible for a healthy nervous system, brain, spine and nerves. As I said before our entire body of nerves and cells are made up with B12. When we have a deficiency it will strip away our myelin sheath (fatty layer) that protect our nerves producing much the same symptoms as MS even down to the white matter found on MRI scans depending on how advanced it is.
A functional B12 deficiency is when you have lots of B12 in your blood, with B12s complicated pathway any break along it's chain will cause you to become deficient but blood tests can look "in range" while health continues to deteriorate.
Things such as FND and fibromyalgia are conditions of elimination much like IBS, so what happens when your B12 deficiency is functional and test results look ok?
Do a check on the overlap of these conditions.

We have national guidelines in the UK for testing and caution around B12 issues being treated quicky due to the severity of the condition, the fact symptoms are often neurological and can cause major long term problems. The NICE guidelines recognise that a discordance between test results and symptoms should result in a therapeutic trial of B12 injections. It's not as simple as popping to Holland and barrat. If you have neurological symptoms (pins and needles, off balance, weakness (usually in legs) dizzy spells, tinnitus, sight changes, just a few examples) then injections will heal nerve damage, supplements won't.
High amounts of B12 are no issue due to it being water soluble, it will not build in the system, B6 does. The only people that benefit from supplements (long term) are people that have a deficiency due to lack of dietary intake.
Your liver stores B12 for 5-7 years, a deficiency can take years to settle in, some will get symptoms for decades before they get unwell so to speak, with niggling and slight changes in health.
Whoever spoke about Japan, yes Japan are leading the way with testing and treatment in this area, our lab ranges in the UK are between 120-180 up to 900 (post code lottery)
Japan- anything under 500 gets treated, we are behind by a considerable amount.
Have a look at the B12 society website. Look at the amount of symptoms this can produce. There are more in-depth tests that can help pick up B12 or pernicious anaemia but are not readily available due to cost.
Celiac disease can reduce our ability to effectively absorb from our food, so can Crohn's disease, gastritis, parasites, h pylori, pernicious anaemia affects our ability also, long COVID sufferers have issues with depleted vitamins post infection.This can be strongly hereditary too. Thyroid patients can often have both thyroid and B12 issues. People that struggle to maintain healthy iron/ferritin also.
The lack of awareness for this condition is worrisome to say the least.

Pain under your ribs is a red flag for me - read the liver flush book by andreas moritz. Saved my life in my mid 20s when i had so many weird symptoms, none of which seemed to be linked (they were)