HELP PLEASE

[Steph0077]

hi guys it’s been awhile since I have posted, I’m in desperate need of some clarification, it’s my son he’s been so poorly for quite awhile, reoccurring viruses, sever fatigue, joint pain, and is so pale😳😔 he’s in His early 20s and really struggling with all this, I have a diagnosis of Pernious anemia and sever iron deficiency, I took him to GPs who are actually quite unhelpful, they said his b12 was normal it was 350 but dropped down to 289 in 4 months, it’s now at dropped down to 269 in 4 weeks and his iron/ transferrin saturation is high, the GP is doing nothing I will attach his blood results here please if anyone knows what this means please could you reply thank you

[Nackapan]

I had to wade through several g.ps when my daughter was young.Difficult being an advocate for a young adult 😕

Was told her bloods showed

"Nothing significant "

I would push for a referral to a specialist after seeing another Gp for a second, third opinion.

Get him to list 5 worst symptoms .

A before of what he could for and a direct comparison of how symptoms have changed this.

Time of day worse better.

In warmth or cooler .

Foods that help.

Keeping hydrated with water.

Sleep disturbed by pain?

A 'potted history'

To be looked at.

Very frustrating that 'case studies ' more thorough it seems if a student present.

Also if dorsnt fit one specialist you have to start again.

General medical consultants seem to have a wider knowledge if where to refer onto

Seemingly time constraints of Gps means they do bloods .

Treat symptoms.

A referral regime in place too they have to adhere to.

Only ideas but anything thst woukd give clinical clues .

Your son is clearly unwell.

I Hope you get some answers to act on .

[Steph0077 in reply to Nackapan]

hi thanks Nackapan, I so worried about him, he’s getting paler and paler and he’s mixed race so he’s always tanned, but looks paler than me currently, this health service has so much to awnser for! I trying to find a haematologist seeing as the GP refused to refer him, shocking tbh, I will keep a diary I put everything in writing to his GPs (learnt that’s the only way to prove what you been telling them) I have no faith or trust in local nhs trust they close ranks it’s truly like cult! To get any kind of treatment of diagnosis we have to literally go out of town it’s unbelievable but so very true, I’m scared that something serious is going on, and because of their negligent attitude it’s being completely missed😳the bloods don’t lie! Thank you for your lovely reply as always you guys are such great support ❤️X

[Steph0077 in reply to Nackapan]

PS isent that the case if they have a student Dr in, shocking really and how very ingenious, experienced that myself 😳😡

[Steph0077]

Disingenuous* I mean lol

[Sleepybunny]

Hi,

I'm sorry to read that your son is suffering, I really hope he finds a doctor who listens.

I can see there's a note suggesting that he might have iron overload as his transferrin result is above range. Did he fast before taking the tests? What he was eating could affect transferrin.

Is he currently taking iron supplements?

There is a genetic condition called haemachromatosis which can cause iron to build up in tissues.

See section on "What test result means" in next link.

Iron Studies

labtestsonline.org.uk/tests...

There is a UK charity for people with haemachromatosis with a helpline.

haemochromatosis.org.uk/

NHS link about haemachromatosis

nhs.uk/conditions/haemochro...

His serum creatinine is above range.

This can have a variety of causes.

Link about creatinine test

labtestsonline.org.uk/tests...

I think it could be significant that his serum B12 is dropping over time.

Maybe your son or you (with your son's permission) could write a letter to his GP pointing out the family history of PA and the fact that his serum B12 is dropping over time, including all the serum B12 results and a list of symptoms.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates you can base your own letters on.

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

b12deficiency.info/your-ser...

Symptoms lists for B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Link to thread about Patient Safety, has lots of useful links for those who've had difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Steph0077 in reply to Sleepybunny]

hi sleepy bunny, thank you for your reply, and all the information very helpful indeed, I will be printing some of it off and taking to next appointment with me, it’s a tough fight, one I have one before for myself so it’s no stranger to me, luckily I have a bit more energy to do the rounds this time, unfortunately for them, it’s his it’s transferrin satiation which worries me too, he’s got iron overload, not sure why or if it’s connected to B12 deficiency? It’s so complex with him, 😔

[Gaudygoat]

Hi Steph0077

I'm going to keep out of the discussion on bloods as I do not know enough about it, other than to say that the results may well have been skewed by any supplements that he was taking.

I did though want to ask if he is getting regular B12 injections? If they have tested him positive for PA then he should be on B12 injections for life. Even if not, the guidelines on symptoms are that he should be tried on B12 to see if he shows signs of improvement.

[Steph0077 in reply to Gaudygoat]

hi there, thank you for you reply, no on b12 injections with no diagnosis of PA yet, useless bunch his GPs are, you think with our huge family history of it me having it and his levels continually dropping that they’d think oh let’s treat him he’s got the symptoms got the family history got colitis etc but no they will wait till he drops down to 160 idiots! 😡

[Hidden]

Hi Steph not a doctor but felt so bad for you when I saw your post. Looked up what causes high creatine as his bloods showed, seems to indicate problem with kidney function? Maybe, dont know healthline.com/health/high-...

[Steph0077 in reply to Hidden]

thank you Rachael ❤️ I definitely think the same but it’s his iron over load that’s worrying me more been coming up for a little while now right over the cut off limit, some of these GPs think they are some kinda Gods, I dont know why they go into the profession 😳 my dads Gp yesterday said she won’t refer him to hospital until he goes into kidney failure (he’s got Chronic kidney disease!) we went to a private cardiologist Monday as he had a dodgy ECG at GPs in December (again they did nothing no referral nothing!) the consultant told him it looks like he’s had a heart attack from his ECG reading and he detected a heart murmur and is testing him for heart failure 😳😡 I don’t know if it’s just here in Dorset or it’s like this everywhere in the UK, but I for one have no faith in this system, the GPs or these hospitals anymore, my sons symptoms are getting worse, I’m battling these GPs like you wouldn’t believe! There incompetence is astounding 🤬

[Hidden in reply to Steph0077]

No its the same everywhere, I've been trying to get help for over 4 months, so ill with heart issues, neurological issues and feel like I'm dying at times. Now just realised from my bloods that I'm very iron deficient and that hasn't even been picked up! Its all a bid to get us to go private its absolutely disgusting, when you pay private only then will you be diagnosed.

Iron overload will be causing kidney issues. He may have Hemochromatosis, my uncle has got that and has to have blood let so this is definately an urgent issue, dont give up!! Do you think you may get somewhere if you go to the walk in or A and E? You may be there a long time but at least they have to deal with you and give you an answer. Take all his bloods and show them.

My grandmother kept being fobbed off by GP, she took herself to the walk in centre and was rushed into hospital for a blood transfusion! She had dangerously low iron levels, something simple yet the doctors overlooked it.She could have had a heart attack at any moment.

I think there is a lot more at play here than just incompetence, its scary and I just hope your son gets sorted soon, I can't imagine watching y child gets sicker and sicker and just being turned away. Do you think writing a letter of complaint into the surgery would help, highlighting his concerning blood test results. Its seems they are leaving people until they get in a critical condition

[Sleepybunny in reply to Steph0077]

Hi,

There are some kidney conditions that can be inherited. I'm assuming that if your dad has one of these conditions then your son has been checked for same problem.

NHS link about CKD (Chronic Kidney Disease)

nhs.uk/conditions/kidney-di...

NICE guidelines CKD

It mentions who should be tested for CKD.

nice.org.uk/guidance/ng203

Some UK kidney charities

kidneycareuk.org/

kidneyresearchuk.org/

Dorset B12 deficiency guidelines

nhsdorset.nhs.uk/Downloads/...

This document says that B12 deficiency may be present when levels are in the normal range and that the absence of Intrinsic Factor Antibodies does not rule out PA (Pernicious Anaemia).

These Dorset guidelines could change after new NICE guidelines on PA and B12 deficiency are published in Nov 2023.

Link to draft NICE guidelines PA and B12 deficiency

nice.org.uk/guidance/indeve...

Click on "Project documents" then "Consultation comments and responses".

Gives a good insight into issues around treatment/diagnosis of PA and B12 deficiency.

[Polaris]

Good replies from others. Would just add that, being in the Northern Hemisphere and of darker skin, makes it harder to absorb vitamin D3 and therefore more vulnerable to viruses, etc.

Researchers recommend taking at least 4,000 i.u. D3 a day during the winter and top researcher, Gareth Davies, Phd, takes 30,000 i.u. a day for good protection against viruses as well as many other benefits.

I get my D3 +K2 tablets from Oxford Vitality, who explain why higher doses are best taken with vitamin K2 (ensures D3 goes to the bones where it belongs and not the blood or tissues) - link below:

oxfordvitality.co.uk/produc...

I hope your son feels better soon Steph0077 🤞

[Steph0077 in reply to Polaris]

Thank you for your reply, definitely agree with that vit D is one of the most important things you can take, magnesium also, coupled with intermittent fasting and it’s winner winner chicken dinner! 🤩