My Results - Help please! 🤷‍♀️

[KBird01]

Hi Everyone. So here I am on my health journey with some results. These were the Blue Horizon Pernicious Anaemia Profile taken 4 weeks ago. I had no supplements at all for 6 weeks prior. I SI 0.7mg B12 Hydroxy 6 weeks before.

My plan, following very frustrating GP appointments has been to have the tests, then start a therapeutic trial of supplements to rule things out or in (either of these is progress I reckon!) while I await the results.

Since having the bloods, I've been SI B12 Hydroxy for 4 weeks every other day, along with supplementing 40mg gentle iron per day. I started on A-Z multivits around 4 days ago.

Many of my symptoms have lessened or disappeared in that time, including low mood, breathlessness, concentration, fatigue, tingling in feet, burning/numb/twitching face and burning hands.

So, the things I'd appreciate any help with are:

1. As far as I can see, these results indicate I don't have PA, or any issues with low B12. Is that correct?

2. They did flag the low reticulocyte count, but as my iron levels were OK, didn't comment further. They didn't test ferritin however, which my GP results show have been below 30 for some time. Again, I'd welcome any thoughts from anyone with more knowledge than me on this.

3. Also, a positive for Reticulin Andibodies. I believe this is indicative of coeliac or Crohn's disease? My previous coeliac tests have all been negative, although the GP tests do not give a range. I'm going to post on the Gluten Free Guerrilla's forum for more advice, as I frequently have tummy bloating.

4. The only other thing I keep finding is my folate levels are consistently high, despite my not supplementing. Again, any thoughts would be welcome.

So, I guess from my 'therapeutic trial' so far, at least something is working, although the cause of my issue is still uncertain. Again, any thoughts welcome - including that I can rule B12 out of the equation. 😊

Thanks in advance you lovely people! 😊

[Littlelodge123]

Because you have been supplementing B12 it is really difficult to say if you had or have B12 deficiency. Taking b12 has meant your levels are now over range which is what you’d expect. It would also bring you MMA and homocysteine into range if these were out of range before. You’d need to know your levels before supplementation before you could be any more conclusive. IFAB is inconclusive in 50% of cases so can’t be relied upon. The only thing that’s possibly suggestive of B12 deficiency in high folate without supplementation which can be suggestive of B12 deficiency. If you were coeliac you would have stomach and toilet symptoms and certainly the same for Crohns. In the absence of these I would suggest a full iron panel as that may reveal something and it may be that your responding to more than the B12. Other than that a fasting gastrin test is a good indicator of B12 deficiency whether or not you’re supplementing. This is because gastrin production is switched off by gastric acid which is reduced or non existent in PA patients and so is ‘constantly on’ and recorded as high. If you’re early on in your journey you may need gastrin tested a couple of times and monitor it to see where it is going.

Others may have insights too but these are just my personal thoughts.

[KBird01 in reply to Littlelodge123]

Thank you for your thoughts Littlelodge123 - much appreciated. So you think not having any B12 for 6 weeks prior was long enough? I must say, I was surprised my b12 was still over range in that time.

The only stomach issues I have are bloating and (fortunately) nothing else.

I doubt I'll do the gastrin tests, as I've already spent quite a lot of money on this and one way or another my 'therapeutic trial' is working. Thanks again for your insights.

[BirdlessBox in reply to KBird01]

No, I think the effect of supplementation on your results can last for years, that's how I think my problem has been denied because of the effect of having had very occasional B12 injections.

I have at least 2 friends who found out they were coeliac without ever having had any digestive symptoms. One found out because of a bowel polyp biopsy and the other because of anaemia. Bodies adjust but once that need is relieved the symptoms can start manifesting more clearly.

Correct stomach acid levels stimulate the correct reflex response in the valves at the entrance and exit of your stomach. B12 deficiency reduces reflex responses fairly generally and can thereby contribute to issues like reflux.

[FlipperTD]

Scientist, not medic.

Reticulocytes are simply red cells within a couple of days or so since they were released from the bone marrow. Assuming that your Hb is stable, and your red cell count is stable etc etc, then that retic count is perfectly normal. The range of '50 to 100' is largely irrelevant, and given there's a 100% difference between the lower and the upper bound, don't worry about it. Keep calm and carry on.

You mention that your iron was normal. Even if it was reduced, your reticulocyte count would still be much the same, because you'd be churning out iron deficient red cells.

The reticulin antibody test is better reported as 'positive' or 'negative'. I understand what the titre result might mean but I doubt that it's of much benefit in the presence of a load of normal results.

An Immunologist would have far more idea about this than I do!

[KBird01 in reply to FlipperTD]

Thank you FlipperTD . I've posted on the Coeliac forum to see if they have any other thoughts about the retculin antibodies. I did read up about the titer, but as you say, it's positive and I'm not sure what that means (if anything).

I also had iron tests, but no ferritin. My last ferritin results in Feb were 26 ng/ml [10 - 180]. Here are the iron and Haemoglobin. I also obtained full bloods in the Blue Horizon test, but doesn't seem to be anything out of the ordinary there.

Iron 15.2 5.83 - 34.5 μmol/L

UIBC 44.7 24.2 - 70.1 μmol/L

TIBC 59.9 40.8 - 76.6 μmol/L

Transferrin Saturation 25.4 15 - 45 %

Red Blood Cell Count (RBC) 4.71 3.80 - 4.80 10*12/L

Haemoglobin (Hb) 147 120 - 150 g/L

Thanks again for the reassurance on this. One less thing to worry about, so I shall follow your advice and continue as I have been with my so far successful therapeutic trial. 😊

[FlipperTD in reply to KBird01]

Sounds like you're doing all the right things, and not doing every possible test; the more you do, the more you find, but given that the reference ranges are typically +/- 2SD, therefore taking in 95% of the normal population, therefore 5% of normals lie outside the ranges. So, 1 in 20 might be out of range but still normal.

Once we start looking at auto-antibodies, it's a minefield as we find plenty of positives with no known or obvious relationship to anything else. However, it gives us something interesting to do in the labs, if we're not busy enough already! The number of autoantibody tests we can do is beyond counting.

Carry on with what you're doing. It seems to be working.

[KBird01 in reply to FlipperTD]

Thanks again FlipperTD . Your explanations do help to keep a sense of context. I'm also glad to hear I may have helped keep some lab types busy and out of mischief! 😉

[prillyb12]

About the bloating, for me this is a symptom of low stomach acid. We need enough acid to absorb nutrients. I take betaine Hcl with every meal, more with a heavy protein meal. Without this, I'd be bloated all the time. However, bloating can also be a symptom of too much acid, so tread carefully. The remedy for too much acid, for me, is some baking soda in water.

[KBird01 in reply to prillyb12]

Thanks prillyb12 . I'm hoping someone on the other forums can advise re: useful steps re: the bloating too. As you say, it's far from straightforward.

[charks in reply to KBird01]

My bloating was caused by gluten. Within 3 days of stopping gluten it was gone and I haven't had any since. Which was such a relief as I have suffered from bloating all my life. You may have non-celiac gluten sensitivity.

The fact that you are getting better with B12 shows that you have B12D. It would be nice to find out why but my gut feeling is that you will join the many people on this forum that haven't found out why. The problem is that the medical establishment know so little about B12D and what causes it.

[KBird01 in reply to charks]

Thanks for your reply charks - interesting about the gluten. Think that may be my next step. Could I ask whether you've cut out all gluten completely? It's not an easy step by the look of things... And yes, I'm resigned to not knowing the cause of what was wrong and tbh am just so relieved to be getting my life back. 😊

[charks in reply to KBird01]

Yes I've cut it out completely. And dairy. Apparently most people who are gluten intolerant also have problems with dairy. I used to love french bread and cheese. It is difficult because there is so much hidden gluten. And gluten free bread is very expensive. Luckily it's disgusting so I don't bother buying it.

It is hard but worth it for a flat(ish) stomach. I also used to get very bad indigestion and I don't anymore. Mind you if I had to give up wine as well life wouldn't be worth living.

On the plus side I lost over 3 stones and have stayed the same weight for the last 3 years.

[prillyb12 in reply to KBird01]

I've been using betaine Hcl for years, and that helped me, but in deed, going gluten free really resolved my bloated belly. But I still need the betaine Hcl.

[Sleepybunny]

Hi,

Have you looked at Coeliac UK website?

coeliac.org.uk/home/

and...

NICE guidelines Coeliac disease

nice.org.uk/guidance/ng20

[KBird01 in reply to Sleepybunny]

Hi Sleepybunny . Yes, I've checked them out as I do another round of research. Feels like this is never-ending. Thanks for the link to NICE though. Problem, as ever are my GP's who have also 'ruled out' coeliac disease following my negative tests. They don't believe I have any nutritional issues at all - all's good as far as they're concerned. (Apart from not arriving at a diagnosis and resorting to the 'you're just old' routine! 😑)

I think after a bit more research, I'm going to try cutting out gluten for a short time and see if there's any improvement. I guess we're back to the same issue as with B12 - diagnosis or not, the treatment is the same... Ah well, all this reading keeps me out of trouble I guess! 😉

[Sleepybunny in reply to KBird01]

"Problem, as ever are my GP's who have also 'ruled out' coeliac disease following my negative tests"

Which coeliac tests did you have?

People with coeliac disease can get a negative result in tTG IgA test (usual test for coeliac) if

1) they have IgA deficiency

Did you get a Total IgA test?

2) they were not eating enough gluten prior to blood being tested

Did your GP ask you to eat plenty of gluten in more than one meal per day for at least 6 weeks prior to blood being tested?

If you weren't eating lots of gluten for weeks before test or you didn't have a Total IgA test then maybe you could write a short letter to GP asking to be referred to a gastro-enterologist and pointing out (politely) that recommended diagnostic process in NICE guidelines has not been followed (explain how) and mention that you have reticulin antibodies.

Coeliac disease can present as a skin problem called Dermatitis Herpetiformis (DH).

coeliac.org.uk/information-...

[KBird01 in reply to Sleepybunny]

Thanks again Sleepybunny . I checked on my last lot of tests and they did a serum IgA - I'm guessing that's the one you mean? The result was 1.66 g/L [0.3 - 3].

I've had a few of the tTG IgA tests and they've all been negative. I did wonder about the IgA deficiency, as a previous test from Medichecks had come back with a very low tTG result of 0.3 U/mL [0 - 10]. This is the only result I've had with a 'score'. Looking at the IgA result above though, things look fine.

My GP didn't mention anything about gluten in my diet pre-test (quelle surprise! Does make you wonder how many people are suffering through useless or missing info prior to blood tests). I did my research before all these though and ensured I had gluten at least once a day leading up to the tests.

I'm awaiting a thyroid scan, so am definitely into 'picking my battles' mode with the GP's now. I'm thinking the gluten thing can wait for another day...

BTW - thank you for your advice about access to my patient records. I've now registered for this, so hope to be able to see what's been going on in a bit more detail v soon. 😊 Thank you again.

[BirdlessBox in reply to KBird01]

I was never told you needed to be eating gluten when you are tested. I hadn't been eating it for years and didn't find out I had a low positive result until years later when I got into my medical records. (Apparently there are genetic test for it now but I haven't had them, my grandson has.) The damage done to your gut is what leads to the deficiencies if you don't have the other B12 processing problem.

[KBird01 in reply to BirdlessBox]

It's clearly more common than not that people are given no guidance about what to do pre-blood tests. It's disgraceful that so much store is then put by these results. Completely dictates the course and effectiveness of any future treatment doesn't it? 😒 It would make sense in view of my other tests that this is an absorption issue for me though. Hoping you managed to find a way through it all in the end. Good news that your grandson was able to have the test too. 😊

[Sleepybunny in reply to KBird01]

"I did my research before all these though and ensured I had gluten at least once a day leading up to the tests."

NICE guidelines coeliac disease says

"1.1.4 Advise people who are following a normal diet (containing gluten) to eat some gluten in more than 1 meal every day for at least 6 weeks before testing."

nice.org.uk/guidance/ng20/c...

Coeliac UK have a helpline.

I think it is open to general public but not sure.

coeliac.org.uk/information-...

"I'm awaiting a thyroid scan"

I suggest putting any thyroid results on Thyroid UK forum on HU.

In UK GPs often only test TSH which won't give a full picture of thyroid function.

There are other thyroid tests they or a specialist can order.

thyroiduk.org/thyroid-funct...

[KBird01 in reply to Sleepybunny]

Thanks as ever Sleepybunny . I had my thyroid scan yesterday, but nothing much to report there from the doctor. I'll definitely go back to the Thyroid UK forum to check in though.

BUT I'm now on week 5 of EOD SI B12 and supplementing with gentle iron and multivits and realised a couple of days ago the tingling in my feet and legs has gone! My energy levels and concentration are improving by the day (I started back at gym this week), along with a renewed sense of optimism. Amazing, considering my previous ill health 'categorically' wasn't caused by B12, low ferritin, or any other vitamin/absorption problem - according to my GP!

So thanks again! Onwards and upwards... 😊