Finding the energy to get help.

[Hoolahoophop]

For years I have felt rubbish.

As a kid I had horrible aching joints they seem to be much better now, or I have got used to to them. My right knee and hip are irritating me today, but not enough for pain killers. I had lots of blood tests, suspected unnamed autoimmune disorder. Nothing formally diagnosed.

Last few years I have had the following symptoms:
Fatigue, brain fog, phases of anxiety, phases of depression, headaches, heart palpitations, dizzy spells, I have a rash on one hand that itches like crazy, I get mouth ulcers that are hugely painful. My bowels are pretty unpredictable. Last year or so massively heavy periods and becoming less regular. My hair is dry, my skin is sad, my nails are peeling. Generally just really, really run down.

I have had a load of blood tests, all fell within the normal range. One lovely doctor thought I was borderline anemic so prescribed ferrous sulphate, I took that for about a year but it was causing awful stomach cramps so I went back to the doctor, lovely doctor moved on, less lovely doctor unimpressed. They said there was nothing wrong with me so just stop taking them.

Had a Bupa telephone appointment, they said go back to GP for blood tests, so I did, GP said all normal, no action.

But I feel awful, it cant be normal to feel like this, and I haven't the energy for going round and round in circles being told there is nothing wrong at the GP because I feel shit and barely have the energy to get through normal life chores let along find the time for daily calls to try to get a doctors appointment then following up when the results are normal so no action required. Where do people get the energy to fight for treatment for their health.

Sorry you feel so rubbish.
What's your actual ferritin level?

It was 13 when I first had it taken went up to 36 on the tablets for a while then 25.

Haven't had it tested again since I stopped taking the tablets.

That's really low. What's 'in range' from an NHS perspective is actually very low. Do you have private health insurance? I was told that under a BUPA policy for instance, if you have ferritin less than 30 that they will foot the bill for an infusion, which is very expensive in this country (about £500-£800).

I had to pay for mine out of pocket - but worth it to get rid of the symptoms.

to clarify I meant an iron infusion.

I have some Bupa cover through my Dh work. They wouldn't do a test. But perhaps if I had another test through the GP and took the results to them, now that I am off the tablets I might get some action?

From what I was told, if you have a policy which does cover it, they will want to know that you've tried proper supplementation for an extended period and your levels are still under 30. Some people just don't absorb iron taken orally very well.

Not all BUPA policies will cover an infusion though regardless.

Thanks for the information. I will persevere with chasing the iron investigation and see what the policy says.

Good luck with it. My policy said nothing about it. A Dr I spoke with gave me that info about Bupa, but my level was at 50 when I had a test so I didn't bother even raising it with them. I knew it would keep falling further, so I begrudgingly paid out of pocket rather than wait... (I had an infusion a few years ago when it was in the mid 30's and didn't rise significantly with supplementation).
Not saying iron levels must be the root of your issues - but I would think addressing it could only help. It's pretty common to be low - and the NHS won't help you unless your levels are almost non-existent.

Keep going back until you are heard. My daughter had symptoms for 10 years and was generally told to exercise and take pain killers, eventually diagnosed with ankylosing spondylitis , auto immune condition which now has fortnightly injections for.

Are there autoimmune conditions in your family? Any psoriasis?
Your story mirrors mine OP and I have never had answers apart from osteoarthritis and I know there’s more going on because this isn’t just my joints and I’ve had pain since I was little I just accepted it I never complained or went to the doctors.

I think when they do all the tests to rule stuff out they decide there’s nothing wrong with you. I’m sure there’s some auto immune condition that doesn’t show up in tests so they either say fibromyalgia or there’s nothing wrong with you. It’s soul destroying I was devastated when they didn’t find anything, every test I had I was gutted when nothing showed up. I know exactly how you feel and the fatigue is insane. When you have rheumatoid or psoriatic arthritis at least you know why you feel the way you do but with no diagnosis there’s nothing “wrong” with you.

I was given those tablets too ages ago but got awful stomach pain with them so I stopped them. The last blood tests I had were all normal so it’s not anaemia.
Sorry I’m not much help, just wanted to show solidarity you’re not alone

Hi OP. Have you got all your blood results on the app? Have you tried putting them into chat GPT?

That is very low iron so I assume you are having heavy periods. My ferritin went from. 16-118 in 6 months on ferrous sulphate and once I had a mirena fitted. Has your GP investigated the low ferritin?

Are you hypermobile?

I have so much sympathy op. I never feel well enough to manage the medical system when I need it most.

Do you have someone who can attend appointments with you, and advocate if necessary? That can be enormously helpful. Even when they stay silent it is much more difficult for a person to browbeat or intimidate two people than one, and it can change the mood of the consultation considerably.

NHS ranges are influenced by the budget available, and don’t reflect optimal, or even comfortable, levels of health. It’s worth comparing your results against the NICE and also consider what is considered treatment worthy in countries with robust health systems.

It can be useful to write out (like your op) what your concerns are because it takes longer to say it, and it’s rare to get it out in a single monologue so some things are always left out. It saves time all round, and I’ve found that it helps the doctor to hold all the facts, in mind because they’re glancing back at the note.

In respect of iron, it might be worth trying a gentler formulation and taking it erratically - it’s better absorbed when it’s not regular. I start mine on the first day of my period, and avoid the last week before I’m due or I bleed very heavily. Take it with vit c, and away from tea/milk/calcium.