Large blood loss.... Problems 1 year on

[Melrose86]

Has anyone had large blood loss and still felt effects over a year later? 16 months ago I lost 6 pints after childbirth. I had transfusions and took iron tablets for a couple of months. I felt better for a while other than brain fog but put that down to baby brain :). I stopped breastfeeding 3 months ago and have felt awful since. I feel like I may be anaemic again and wondering if I've never really recovered fully from the blood loss. I'm totally wiped out after work/doing anything with the kids, emotional and feel weak/spaced out. I've made a Dr's appointment but just wondering if anyone has been through feeling similar.

And yes husband thought he was going to be left with 2 kids and no wife.

Have you had your thyroid checked? My body fell apart when I stopped bf andvit was my thyroid.

@newtb havent had my thyroid checked but definitely feel my body has fallen apart since stopping breastfeeding. I knew stopping bf would affect hormones but didn't realise I would feel physically so awful!

Had a blood test today and waiting for the results. The doctor said my symptoms shouldn't be anything to do with the blood loss "as that was way back in 2021." I feel like everyone around me thinks losing 6 pints of blood was no big deal!

@Xrays what were your symptoms with this and what endocrinologist did you see to diagnose please? Apparently I “only” had an estimated 650ml PPH, so I’m thinking it’s unlikely in my case. However, I have had fatigue, muscle aches, lightheadedness, headaches, brain fog and nausea ever since his birth 2.5yrs ago. Recently been diagnosed hypothyroid but medication not helping. Had cortisol test, which came back 271 - doc didn’t even ring me and just wrote on my results that I requested “probably ok”. Since seen another doc who said that’s no ok and it needs retesting

Oh and diagnosed with PoTS too

My main symptoms were weight loss, exhaustion, hair loss (body and head!) and chest pain. The main thing that started it all off diagnosis wise was that I kept thinking I was having a heart attack and ending up in a and e with chest pains and then I’d have a really upset stomach. It took a long time for a diagnosis because doctors kept putting it down to anxiety!

270ish is low for a morning cortisol (mine was 100). At that level they should refer you to an endocrinologist for an sst test - google this. Here are the NICE guidelines; you can see the thresholds -

https://cks.nice.org.uk/topics/addisons-disease/diagnosis/investigations-suspected-adrenal-insufficiency/

If you are on Facebook look up the U.K. Addisons and adrenal insufficiency support group for further advice / help.

@Xrays Thank you! It makes me so angry the amount of times I hear it put down to anxiety. Same situation with me. I also get chest pain and racing heart and finally saw a cardiologist privately who diagnosed the PoTS. I doubt it is Addisons in my case as I haven’t had the weight loss and stomach pain/vomiting many talk about (but wish I knew WTAF was going on). But did think it was interesting first hypothyroidism and now low cortisol. Yes I quoted the NICE guidelines to the new doctor and she said if it comes back a similar number at my next blood test, she will refer to endocrinology. It was 400 last October and has suddenly dropped to 271 in 6 months, but she did say cortisol levels can really vary and it may have been a lab error 🤷‍♀️

Frustrating isn’t it. There are different types of adrenal insufficiency though- Addisons is just one type. Any cortisol deficiency is by definition adrenal insufficiency though and should be investigated. Doctors don’t really tend to see many people with it so they just don’t understand it. The Facebook group is full of people in exactly your situation. I hope you manage to get some help with it all somewhere.

@Rainbow2116 you sound like my twin! I have the EXACT same symptoms as you, including the POTs and everything kicked off after having my second child who is nearing 4! I lost over a litre of blood having him and have been iron deficienct ever since. I have bouts of chronic nausea which is awful, muscle aches, extreme fatigue, twitches, anxiety/panic attacks/adrenaline rushes, ectopic heartbeats, tachycardia, chest pain, breathlessness, weakness...I could go on and on!

My pre 9am cortisol level was 297 and was also told it was a fine and no follow up! My thyroid has always been in range though. I asked for some pituitary gland tests which look like they have come back normal. I've been looking in to seeing a functional doctor because I can't go on like this, I feel terrible.

I thought some of it might be down to my iron deficiency and I was finally granted an infusion 2 months ago. Some symptoms like the air hunger have improved and my ferritin has gone from 11 to 204 a month later! But already down to 96 a month after that.

@Mumma02 it’s a living nightmare isn’t it 🥺 I had covid at 38 weeks pregnant so it was a double whack to my immune system. My ferritin hit single figures after birth and was missed until 4m pp, by which point I was bed-bound. Still only managed to get it to 39 as I’m vegetarian, heavy periods and cannot tolerate the iron tablets. GP said it’s long covid and PTSD causing all these symptoms. I ended up going private and got the PoTS and thyroid diagnosis's. I noticed my TSH temporarily dropped straight after birth and has been rising ever since, but it’s only slightly out of range and I only tested positive for the rarer thyroglobulin antibodies, so part of me is like is it right I’m on medication, wahhh. I wouldn’t be on the NHS. I have my second cortisol test in 10 days. I was thinking of looking into a functional doctor too - where do you live? I don’t even know where to start.

@Rainbow2116 I have had covid 3 times now and the I developed POTs the first time I had it and a whole raft of dysautonomia symptoms too so it could be said that I have Long Covid BUT my odd symptoms definitely started before I had it which I can't work out! Oddly my TSH was 0.81 after my iron infusion but has otherwise always been 1 point something. Never had T3 or antibodies tested! They wont test them. Did an endo do them for you? Totally get what you mean about not knowing what to do for the best.

Please keep me updated on your cortisol results! This past month I have started to get episodes of lightheadedness when standing. Literally go all woozy and feel like I can't breathe and as though I'll pass out.

I'm in South Wales but going to go and see Dr. Damien Downing in the Hale Clinic in London. Check out his website! Is that near to you?

@Mumma02 i will do! That seems like a pretty decent TSH. Mine was 4.82 when I got diagnosed by a private endocrinologist. I’m in Oxford but have travelled a lot to London for private appointments in the hope of getting some f**king answers 🫣 I will definitely look him up, thank you!

@Rainbow2116 maybe ask about Sheehan's syndrome?

https://www.yourhormones.info/endocrine-conditions/sheehan-s-syndrome/

@Dontlistitonfacebook i did consider this but my milk came in, my periods came back and I “only” had estimated 650ml of blood lost