Theres something wrong and I can't work it out.

[XxrosesxX]

Hi. My health has never felt the same since my second child 2.5 years ago. Just remember never feeling "right". I put it down to tiredness. My mood felt fine. But I had a variety of symptoms like weakness and feeling abit off. Periods were bad. 9 months ago I told the Dr at last how o had felt. She told me all my symptoms seem like anxiety. She gave me a CBT online course card. I walked out confused. I wanted to do loads of stuff. I wasn't worried. I wasn't nervous. But my body was letting me down. I went back and she gave me the combination pill. I tried that hopeful it would improve my periods. At the same time she took bloods to check iron, vitmain d, thyroid etc.

Three days into the combination pill I woke up trembling. Feeling sick. Panicking. Couldn't breathe properly. It last half an hour and my partner held my hand as I finally was able to sleep. The next day we talked about how odd it was. I stopped taking the pill straight away. I realised my mood was terrible the next day.

Blood results came back. She said no wonder you feel terrible you have no iron reserves. She started me on tablets. 8 weeks later another blood test confirmed numbers were ok. Receptionist said no further action. I stopped taking iron as I ran out. I was at that point doing the school runs,4 miles walking a day and feeling pretty good.

Then February this year a heavy period put me right back down. I was so weak o was shaking. My heart was pounding and I was soaking through loads of pads. The following week I laid on the sofa and cried. I just couldn't move. A blood test confirmed no iron reserves again but my numbers were higher weirdly. I felt horrendous. The next three weeks I took iron and watched my partner take over. I felt guilty as I'm a stay at mum and he was doing all the school runs.

I just had got better before lockdown and started taking her again. Since lockdown I have just felt rubbish. I had a locum dr give me the mini pill to try. I have always been told I can't have it due to anemia. But he prescribed it and I trusted him. I hoped I was lucky. But 12 days in I started bleeding. It lasted 5 weeks and I gave up. All that time I was weak. Tired. Sluggish. Feeling slightly queasy.

My cycle is back to normal now. But my digestive system is awful. I feel sick and stomach achy alot. I phoned the drs yesterday. Same man rang me. I just can't get access to anyone else! He prescribed me lansoprazole for nausea. He said it could be the iron tablets causing a reflux thing. I've taken it for two days now. Had an okish day but felt yucky and tired at teatime. Went to bed around 10.30. now I'm awake feeling sick and my throat feels like it's got acid in it. I am sat in the bathroom writing this with water.

I'm so confused as to why my body feels so Terrible. I feel something is wrong. It's more than just iron levels surely. I've been taken them for 3 months now and still suffer so many crappy feelings.

Where do I go from here?

It could be M.E (Chronic Fatigue Syndrome) combined with other issues. I've had it for 18 years and it makes you absolutely exhausted most days. I'm always needing to lie down.

Funny you should mention tail bone pain OP as I have that too. Doc thinks it's Arthritis but it only flares up every few weeks then lasts a week or so. I think there's more to it

Thank you everyone. Your replies have really helped me feel less alone and more supported. I've just been for a wee and I'm bleeding.

I came of the mini pill April 11th April

Had a period 30th April. Felt like a normal cycle.

So confused. Could this be messed up hormones still?

Are you taking ibuprofen regularly ? That can be really damaging to the stomach etc

This all sounds like thyroid to me. Thyroid diagnosis and treatment is woeful in this country. So many patients (mainly women of course) left feeling like shit for years on end, being told its all in their head. Makes me fucking furious, when I can summon the energy!

See if you can get the actual lab results (including the reference ranges so that you can see whereabouts in the range your 'normal' result is). My thyroid is as good as gone, and if my levels are at the wrong end of the normal range I feel terrible.

I also had B12 issues, which caused a feeling of panic, waking up with a start and mad palpitations, as well as bone aching tiredness.

Once I finally convince my reluctant GP to test it, my level was about 250 with a normal range of 200-900, so although it was technically in range, it was very low. I had to push for injections, but once I had them I felt 100 times better. But then they stopped the injections as I was now in range, so just gradually got worse again. Madness.

If they have done loads of blood tests and nothing is out of range, then something must be low in range or borderline for you to feel so crappy. Try and get the numbers and someone can help pinpoint where you could be improving re vitamins etc.

You KNOW something is wrong, it has coincided with massive physical changes to your body, so its not a huge leap to assume that something hormonal changed at that point.

Childbirth is often a trigger for thyroid issues, so that should definitely be taken more seriously. Levels can fluctuate for many months or years, so your test at that point could have been normal, but it should be tested regularly to see if it goes up or down. Hashimotos is characterised by fluctuating levels before the thyroid eventually gives up the ghost, so don't be fobbed off by one isolated blood test, especially if its just TSH and not a full thyroid panel.

Its so hard to push for what you need when you feel like crap isn't it.
Have you got someone who can come with you and advocate for you?
I've found that sadly even female doctors take me more seriously when I take my partner along as a second pair of ears. Good luck

My partner has us on his work private medical care. I've never used it. He wants me to call them and break it down on what's been happening. I feel abit unsure where to start. I almost don't feel worthy of private health care. We are not rich. My partner's just clever with computers and has got a reasonably good job doing security.

Drop that feeling straight away. Your DP's job has a perk which can help you and take pressure off the NHS so please use it. The NHS is fab for emergency treatment and we're lucky to have it, but its not great for everything, and unfortunately its cases like yours which require someone to take time and do lots of ongoing tests etc to piece it all together. NHS are great for treating a symptom, but don't seem to want to look any further into causes. Understandable as fire-fighting exercise, but not very helpful when you're looking for answers to a long term issue. Please don't feel guilty about going private. You deserve a happy and healthy life and getting this sorted could prevent years of doctors visits to unsuccessfully treat the symptoms rather than the cause.

I would definitely access the private care if I were you. You’re not getting anywhere with your GP and the NHS isn’t fully functional at the moment...think about deserving..don’t you want to get to the bottom of this? Don’t you deserve to be well? Do it for your kids!
Here’s irony for you. I work for the NHS. A couple of years ago I went private to get seen sooner so I could get well and go back to my job sooner...in the NHS! It was worth it though.

I can't really help with your symptoms but if you have access to private health care then use it!
That's exactly what it is there for.
As someone mentioned up thread as soon as you say "private health" go a GP they will write a referral for pretty much anything!!
In normal circumstances you'd be seeing a specialist next week. Not sure how it's working with COVID right now.

When my DD was around 2 years old she kept being sick, like every few days and this went on for months!! GP wasn't interested, as she was totally fine when I took her for check ups. But she was still being sick and losing weight.
So we went via Private health to a paediatrician. GP referred her no problem, got an appointment the next week. Had bloods booked and taken a few days after. When bloods came back clear she was then referred for an ultrasound, all done and checked within a few weeks. Paediatrician would've referred her to have camera into her stomach if we wanted but thankfully by then the sickness had started to ease off.

Just go private and save yourself the weeks of feeling crappy, waiting for the GP to listen to you!
Hope you get to the bottom of it.

OP, I felt the same as you for years and years, which thinking back came on after the birth of my DS. Anaemic, depressed, anxious, hair falling out, monstrous fatigue, really heavy periods, weird feeling pulse/heart beat and brain fog/memory problems.

After pushing for years and getting fobbed off with 'oh you've got a young child and a full time job, you're bound to be tired' etc I got a full thyroid function test and was diagnosed with Hashimoto's. Got put on thyroid tablets and thought that was the answer but still went for years and years with not feeling myself, bouts of extreme tiredness, depression getting worse and worse, worsening memory and just a general feeling of something being 'wrong' with me.

Few years later was told to take a high dose of vitamin d (3,000 iu daily) as was deficient in that too, and for a while I felt better, but then back to the same old symptoms.

Then broke a few bones, had a dexa scan (again at my insistence) and found out I had early onset osteoporosis which was blamed on the low vit d.

Still getting anaemic and this was always put down to my heavy periods, but by this point I was taking 200mg ferrous fumerate every day for about two years and still had no iron stores.

Someone randomly mentioned me being a celiac about this time last year, which I thought was nonsense as I'd never had any of the typical celiac tummy type symptoms. I did an online assessment on the celiac society's website and was astounded to find out they thought I might have it. Then fainted a few times on the train to work, so went to the docs and demanded to see a gastroenterologist, has an endoscopy and lo and behold, I am celiac and probably have been for years.

Anyway haven't had any gluten in eight months and feel totally different - my iron levels, b12, vit d have all shot up to where they should be, my periods have calmed down, I'm off my antidepressants, I stay awake past 9pm now, my bone density should be improving and I don't feel like some sinister, hard to pinpoint and explain feeling of being ill is there anymore.

As everyone has said, it could be a lot of things (thyroid, endo etc - autoimmune diseases like celiac and hashimotos like to go hand in hand sadly) but it sounds from my experience like you're not absorbing nutrients properly, and you mentioning some foods making your stomach feel odd (spaghetti for example) sounds alarm bells to me re gluten.

I'd definitely push for ruling any absorption issues out. Leaving it too long has nasty side effects like osteoporosis and broken bones are no fun!!

Hope you get some answers soon. Don't be shy to be insistent - you know yourself better than anyone

Hello @XxrosesxX. I have gastro problems and also low ferritin. I have a feeling that the iron issues with me are exacerbated by the omeprazole I take. I would be very careful about continuing it if I were you. Do your reading at least. It interferes with iron absorption and I've given up trying to come off it now because it is horrific with acid but this is long term use and people seem to get stuck on it. The Dr denies all this but papers I read suggest otherwise.

Also iron tablets from gp always made me feel sick. Really awful. You have to take them to get iron up but also vit c really important. We don't absorb it easily.

Then the anxiety is a common part of anaemia.

It's all difficult to unravel!

Thank you for the replies again. Lots of helpful things. I've written down my situation tonight. When you call the private number what sort of things do they usually ask?

I have heard these acid tablets are bad for you. Just feels they mask symptoms with other drugs that cause more symptoms.

I hate nausea it's one of the worst things! I feel better tonight sick wise but very tired.

I have had lots of muscle tightness, back cracking, neck cracking too since having my son. Pushing his pushchair doesn't help but he will be out of it in a year or so. So it won't be forever that I'm pushing a heavy buggy around. I am worried this could be the start of a long term issue.

I'm definitely getting nowhere with the NHS. Coronavirus has added to it but tbh my surgery were taking weeks and weeks to have appointments. I went for one back in February. I was told I needed swabs etc. I was with the nurse there and then. She said I had to come back for swabs another day. No wonder there's no appointments

Thank you all for everything. You have really helped me! I thought my post sounded really uniteresting and nobody would want to read it all. But you did and I'm greatful.

There are so many things it could be but the drs don't want to know. Do I need to contact my gp first to tell them I would like to go private?

Hi XxRosexx. I had very similar symptoms to you which is why I asked about the caffeine. Even the part where you said about certain foods like spaghetti bolognese. I also had nausea and other similar symptoms. I heard about the caffeine thing and completely cut it out. It really helped. Try it for a week to see if it helps.

Also drink more water than usual. Hope that helps.

Sorry keep remembering another point! Maybe have a glass of milk when your reflux is bad. It seems to help with the acid thing. Regarding the heavy periods and anaemia not sure but it could be that your symptoms are caused by different things rather than one thing eg. Anaemia and acid reflux.

Active Iron from Amazon/Boots is a good iron supplement and has no digestive side effects. If you have heavy periods, you won’t be able to stop the iron or your levels will just go back down again.
You seem to be sensitive to hormones, so hold off on any hormonal contraception for now.
Are you sure your thyroid & Vit D are normal?
Apart from iron deficiency, small bowel bacterial overgrowth can cause fatigue, and acid reflux.

OP this was me after the birth of my second child (nearly 8 years ago now). I was tested for the lot: anaemia, coeliac disease, thyroid etc. It took until 2 years ago for the GP to diagnose me with low folate. 12 weeks of supplements and I've been fine ever since.

Mostly I'm relieved that I finally feel well, but a lot of the time I'm so angry and how long that took, and how I was fobbed off and told I was depressed or anxious over and over again.

It could be a combination of conditions. I've been very anaemic for years. I don't absorb iron properly. From a gynae pov, I had internal scans to make sure there wasn't an underlying gynae cause. I tried different iron tablets until I found one that suited me. You can go back to your GP and ask for a different prescription. Spatone was no use tbh . It's not high enough if you're struggling to maintain iron stores.

At the same time, I was struggling with my iron levels, I was also having nausea and heartburn. It turned out I had a stomach ulcer. I was prescribed medication and it stopped the nausea, heartburn, etc.

So I'd suggest asking for further investigations about the cause of your anaemia. Starting with ruling out gynae causes. An alternative iron tablet that is less likely to cause nausea. Tests for an ulcer if you're still suffering with nausea. Stomach ulcer and the inability to absorb iron can be linked.

I was told after they checked my womb etc on a scan in February that I would probably be referred to gynocology if the scan didn't give any answers. It's never been mentioned and the locum mumbled my scan was clear when I first saw him.

A nurse friend gave me a really successful way to deal with Drs like these: tell them what they ‘told you’. Eg say “you told me to come back to you so you could send off the referral for X if the scan was clear.” Note that this is different from “you told me to to come back to you if the scan wasn’t clear.”

Also, I just felt I should mention that I had no/low pain around my period but I still had stage 4 endometriosis.

I used to be anaemic and couldn't tolerate ferrous sulphate. My GP prescribed ferrous gluconate instead which is much gentler on your stomach.

Ultimately you need to find out why your iron stores are so depleted. Hypothyroidism can cause very heavy periods and make you feel slowed down and exhausted - can you ask for the thyroid test to be repeated?

Also just because the scan ‘looked clear’ doesn’t mean there isn’t an issue. I’ve had ultrasounds and CT scans that were normal but my laparoscopy found endometriosis.