Hi all, I haven't been diagnosed with PA so I hope you don't mind me posting. I've just moved to a different GP practice after several years of struggling to get help at my last practice. Going to see my new doctor next week and was hoping I could have some advice on my blood results as I'm at my wits end and just want an answer to the years of symptoms I've had. I've provided the blood results that appear to be linked to one another and lie close to being 'abnormal'.
I'm an 18 year old female if that helps. Looking at my local NHS website all the reference ranges I'll quote here and are on my results are adult ranges- I cannot find child/adolescent ranges- not sure if this makes a difference?
Blood results Dec 2012 (aged 14)
Serum folate 10.6 (>4)
B12 180 (180-1000)
Serum ferritin 22 (10-300)
Haematocrit 0.401 (0.37-0.47)
MCH 32 (27-32)
Haemoglobin 134 (given adult range of 115-165, but NHS child reference range 12-18 should be 120-160)
RBC 4.2 (3.8-5.8- adult range given, children's range (12-18yo) from own research should be 4.1-5.1)
Normal ser tiss transglutaminase lev result.
Blood results August 2015 (aged 17)
Serum folate 7 (>4)
B12 192 (180-1000)
Haematocrit 0.383 (0.37-0.47)
MCH 32 (27-32)
Haemoglobin 131 (again given 115-165 adult reference range, NHS resources state the child reference range for 12-18 year olds is 120-160)
RBC 4.09 (3.8-5.8- children's range (12-18 is 4.1-5.1)
Blood results October 2016 (aged 18)
Haematocrit 0.388 (0.37-0.47)
MCH 30.9 (27-32)
Haemoglobin 129 (115-165, same as above re given adult references when perhaps child should be used as it states 12-18 years)
RBC 4.16 (3.8-5.8, same again with child/adult range differences)
These are the only blood tests I've had done by my last GP. From what I can tell, this is what I've concluded:
- My B12 readings have both been at the low end of normal, especially considering from what I've read that children should have higher B12 readings as 18yo's and under have a higher average B12 than adults.
- My ferritin level was at the low end of normal at 22 ug/L aged 14. Doctors have not retested this since.
- My folate has also been at the low end of normal, at 10.6 ug/L aged 14, and decreasing to 7 ug/L aged 17.
-Haematocrit has remained pretty consistent around the low end of normal.
- MCH has constantly been at 32, the upper number of the 'normal range'. Bar one result at 30.9.
- Haemoglobin has been in the lower half of the reference range, would be quite low if children's range had been used instead of adult's. Has been decreasing since 2012.
- RBC has also been decreasing since 2012, at the low end of normal. Would have been just below normal range in 2015 if children's reference values used.
My symptoms have been as follows:
Abdominal pain- location varies and can go periods of days or weeks without any pain. Pain can be extremely painful and debilitating- even waking me up whilst I'm asleep. Feels like I've been stabbed. Intense overwhelming cramping. Usually in the lower abdomen.
Persistent tiredness- sleep doesn't help.
Constantly feeling cold, even when others are boiling hot.
Occasional chest pain- unable to burp.
Passing blood when pooing/blood streaks in mucus when pooing.
Varying constipation and diarrhoea.
Persistent bloating.
Nausea.
Brain fog.
Feeling weak/dizzy/lightheaded.
Sorry for the really long post. If anyone could help with what I should say to the doctor it would be so appreciated. Are there any tests I should be asking to have done, do my results or symptoms indicate any possible condition? Obviously I don't expect anyone to make some kind of diagnosis- just personal experience and to be pointed in the right direction would be so helpful. My last GP was at the point of telling me that I could be referred to the pain clinic, I was being overinvestigated and some people just never find a cause for their problems. I'm only 18 and I cannot imagine continuing to live like this and I really want things to get off to a good start with this new doctor!
Thanks very much,
Amy 😊
EDIT: I don't know how to remove the tags healthunlocked automatically added to the post. They're not relevant. Sorry!
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Can't really give you anything definitive - B12 is likely to be a problem - but would need to fully evalutate symptoms and there are some test that might help - eg MMA and/or homocysteine which look at products that build up if the body doesn't have enough B12 at the cell level to recycle them.
It would also be good to get a full blood count. The ferritin could indicate an iron problem and the raised MCH could be a symptom of B12 or folate deficiency ... an iron deficiency will tend to make blood cells smaller so could be counteracting the macrocytosis.
Blood in stool not good - definitely suggest following up on that with GP
Hopefully I can suggest this with my new doctor- I have a few family members with Crohn's but last GP never referred me for any form of testing. I hope you are responding well to treatment and have periods of remission where you experience good (or better) health x
I have commented below of the outcome of my appointment... do you have any suggestions based on your experience? Is the small intestine swelling/inflammation potentially a sign of Crohn's from your own knowledge?
You might ask the Dr if he could test you for Coeliac. Low vitamins and low iron/ferritin can be symptoms especially as you have some gut things going on with runs/constipation. Have a look at the Coeliac website to see what you think. They are very helpful if you or your parent needed to speak to them
The tiredness and pain might be due to the low ferritin as the classic symptoms are muscle aches and tiredness - have you got hair loss/thinning too? You need to find out why these are low and it could be that you have a gut absorption problem which they haven't considered yet for you.
Your B12 is very low and will be contributing to you feeling tired. Has the Dr given you supplements for any of this?
Ask your new Dr why are my levels so low - Is there a gut problem
Good luck in finding out what is going on. Stay strong and don't give up there are lots of people on here that can help you. Sending you hugs
I had a normal serum tissue transglutaminase result in 2012 so the lab comment was that untreated coeliacs was very unlikely, but I suppose it's worth mentioning to the new doctor on the off chance!
Yes my hair has been thinning over the past few years. It is certainly a lot thinner than it used to be.
No I have not had any supplements offered by the doctor as they perceived all of my tests as 'normal'- I suppose instead of looking holistically and seeing that the values were low across the board, whilst technically not being out of range then therefore they perceived nothing as being wrong.
Thank you so much for your advice! It is so appreciated, I've just had a nightmare of my GPs not listening to what I'm saying and hopefully I will be able to get it sorted this time round!
I think that you could ask for it to be tested again as that was 4 years ago and it is possible for it to develop at any time. See what Coeliac uk say - you can give them a call they are very helpful and kind.
This is the problem with the ranges - they are very wide and Drs will say you are fine if you are at the bottom of the range. You could ask him why they are low.
I hope you get some answers and start to feel well Good for you for standing up for yourself - its hard
I have finally found a resource from Stichting B12 Tekort stating that B12 deficiency in those under 19 years of age is defined as <310pg- so therefore my readings of 180 and 192pg would certainly put me under that threshold. Am infuriated at my last doctor for missing this and allowing me to be compared to the adult reference range of <180pg being deficient! Really hoping I can get the ball rolling for some answers tomorrow.
It is so hard battling the doctors for help, I have been dismissed so much and I'm really hoping with these resources I can put my cards on the table and not take no for answer! I've been fobbed off so many times with silly suggestions (and treatments!!) for things tests showed I didn't have- e.g chlamydia and pelvic inflammatory disease.
Cannot believe doctors have missed something that could so easily be the cause of my problems. Hopefully will be able to get some more up to date blood results soon and maybe find a cause for all of this 😊
Have commented below with the outcome of today's appointment... any suggestions would be brilliant as I don't know what to do about her ignoring the B12 (and other issues!) . Only good outcome is I'm having another blood test done for coeliacs X
Hi Amy, Oh goodness thats a tough appointment you had! Let me know what the outcome of the Coeliac screen is will you?
Have they said where the blood might be coming from when you poo? Are you constipated that it could be through straining or piles? If you have some bleeding perhaps this could explain why ferritin is low. Do you eat red meat?
If I were you I would look at increasing your vitamin and mineral levels. B12 is too low and I think if you do some research that you can't overdose on B12 supplements - you should also have a look at which type is the best to be absorbed. For ferritin - some of your symptoms re tiredness, will be due to this being so low. If you decide to take iron supplements to increase this then you need to take it with Vitamin C at the same time as this makes it more gentle on your gut (iron tablets can give constipation). It can take a while to get Ferritin increased - several weeks and then it can take a few weeks after for the symptoms to improve - so be patient with this - it isn't a quick fix. You didn't say if they tested for D3 as I expect this is possibly low too - and low D3 can give muscle/joint aches and pains.
It doesn't sound like they have addressed what is happening in your abdomen. Maybe when you get the Coeliac test back you can push them again for answers. Tell them you are trying to increase your vitamins and will she test them to see that they are going up If she won't test them it is possible to get some private tests done on line.
Don't give up - there is an answer somewhere for you
Unfortunately appointment with new GP did not go well at all. Never have I had a doctor state at a first appointment that chances are we won't find a cause, that some people have pain for no reason and that she doesn't think I'll have it for life- 'one day you might wake up and it won't be there'.
Apparently B12 isn't low. Despite reference levels being less than 180 as deficient, she stated that they wouldn't treat unless under 150. Then later said that they would've given injections at 180 and retested afterwards? All very contradictory.
Was told if I had blood in the stool I would've already had an IBD investigation- I haven't. Also was told if I did have IBD then it would be very mild so not to worry.
Suggested I take tramadol when the pain gets bad... I've only had that in hospital and pretty sure it's prescription only? So confused by that comment.
She was looking at a report of a urinary tract/bladder/kidney CT scan I had done recently (believed to have had a kidney infection/they wanted to rule out kidney stones as last GP referred me to A&E after having severe pain with vomiting and bad dehydration. Apparently the report noted swelling of the small intestine- any suggestions for why this could've been? GP stated not to worry as the small intestine can swell when your body feels pain (??) Should it not be that your body feels pain because your intestine is swollen? And that because it is the small intestine and not the large that it doesn't indicate IBD.
She's ordered some routine bloods to be done but doesn't think we'll find anything. I'm currently not having an 'episode' of the abdominal pain so I'm doubtful that we will either. I call them episodes as I can go weeks of being fine and then have periods where I'm entirely debilitated by the pain. Perhaps the B12/folate/ferritin will have gotten low enough for her to notice something. We will see.
Feeling so down and despaired by all of this. She ignored my other symptoms and the discharge notes from hospital in 2015 stating to refer me for further investigation if pain didn't go away.
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Good for you for standing up for yourself - its hard 
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