Really upset and frustrated following a hematologist appointment--any ideas?

[hummingbird88]

Hi all, I've posted on here several times after testing positive for the intrinsic factor antibody a month or so ago. Until then, I had had a year of general fatigue, then 3-4 months of increasingly bad fatigue, cracked corners of my mouth, shortness of breath, inability to exercise, forgetfulness/difficulty concentrating, and difficulty working that culminated in me going to the doctor. I am a vegetarian (for 13 years) and was taking a B complex supplement with folic acid, and had been since I became a vegetarian.

I got blood tested, and am including my results at the bottom here. I was mildly B12 deficient, vitamin D deficient, and had low iron saturation. My blood count was normal. After another round of tests, I tested positive for the intrinsic factor antibodies. My doctor said I had underlying pernicious anemia that had not yet developed into anemia. I took 1000mg of B12 subcutaneously for 7 days, then once a week for the last two weeks.

Today, there was a cancellation, and I got to see the hematologist I had been trying to see (as my general practitioner had said it could be a good idea). The hematologist told me that I do not have pernicious anemia, that I should stop the B12 injections, and just take Vitamin D and iron supplements. She said the intrinsic factor antibody test had likely been a false positive, because my gastrin was normal and I tested negative for antiparietal cells. She said above all, I was not anemic and had normal blood count, and therefore did not have pernicious anemia. When I asked her about the shortness of breath when exercising, fatigue, etc, she said all because of Vitamin D and iron deficiency.

I'm really frustrated and confused, because I thought the Intrinsic factor test was fairly specific. I also really felt like she downplayed my level of fatigue. She also told me just to start exercising again (even though I stopped because of shortness of breath) and I would probably start feeling better anyway.

Does this completely rule out pernicious anemia then? Obviously she's a hematologist so I figure she knows what she is talking about, but she was so dismissive of my symptoms that it all feels really confusing and upsetting. Would love to know others' thoughts!

My results (please ignore if not relevant):

-Vitamin D, 25-Hydroxy 25.50 ng/mL, range: 30.0-100.0

-Vitamin B12 7/28/2018 221.00 pg/mL, range: 232-1245

-Folate (Folic Acid), Serum, 18.10 ng/mL, range: >3.0

-Iron Bind.Cap. (TIBC) 427.00 ug/dL, range: 250-450

-UIBC 383.00 ug/dL , range: 131-425

-Iron, Serum, 44.00 ug/dL, range: 27-159

-Iron Saturation 10.00 % , range: 15-55

-RBC 4.56 x10E6/uL , range: 3.77-5.28

-Hemoglobin, 12.90 g/dL , range: 11.1-15.9

-TSH 2.52 uIU/mL, range 0.450-4.500

-Triiodothyronine,Free,Serum, 3.30 pg/mL , range: 2.0-4.4

-T4,Free(Direct)1.10 ng/dL, range: 0.82-1.77

-Intrinsic Factor Abs,Serum 13.50 AU/mL, range: 0.0-1.1

-Antiparietal Cell Antibody 17.20 , range: Units 0.0-20.0

-Gastrin,Serum,16.00 pg/mL, range: 0-115

-Methylmalonic Acid, Serum 101.00 nmol/L , range: 0-378

[Galixie]

This is just my opinion based on my own unpleasant experiences with hematologists, but I have found them all to be so wrapped up in test result numbers that they are likely to miss the forest for the trees.

It is possible to have PA without testing positive for parietal cell antibodies. The fact that you tested positive for intrinsic factor antibodies should have been enough for the doctor to take you seriously. I share your frustration with this encounter.

On the other hand, some of the fatigue and shortness of breath might very well be caused by your low iron saturation percent. I know I feel awful when mine dips low and I don't think mine has ever gone as low as 10%.

[deniseinmilden]

Even my GP said seeing the local haematologist would be a waste of time when he asked them to help so you're far from alone.

I'm really sorry that you have been treated so poorly when you just need some help to feel better.

I would be dead if I'd relied on the health service for help - thank goodness for the advice on here and the Facebook group I belong to.

Thankfully I had been taught by vets (for whom patient welfare is paramount) to work with prognosis (out come) in mind and worry less about specific diagnosis, which relies on inherently unreliable testing.

If you choose to self treat we are happy to help you.

[deniseinmilden]

The way they twist things until you want to doubt yourself is known as Gaslighting.

I can't find the best articles on this anymore but you'll be able to see why it feels so horrible from the following link

lonerwolf.com/gaslighting/

[wedgewood]

You have a diagnosis of PA .with a positive Intrinsic Factor result . You should be having B12 injections . Taking B12 in tablet form will not help you . It will only make your B12 serum readings look normal , but will not get into your cells . Come back here if you get no help from your GP. We can tell you how to self-inject . Best wishes

. I can assure you that most haematologists know very little about PA . I consulted one who told me that he wasnt interested in the subject ! I couldn’t believe my ears ! But he still took my £150 !

[fbirder in reply to wedgewood]

If you have PA then the B12 in pills won’t get into the blood.

[wedgewood in reply to fbirder]

I had been to my GP with many symptoms of B12 deficiency . Blood tested and the result was 150 for B12 blood serum . I was sent on my way and told all was normal . Researched a bit and was then sure I had B12 deficiency . My numb feet were “idiopathic “ according to my GP . Well I started taking B12 sublingual tablets plastering myself with B12 patches and sprayed the stuff up my nose . No result after several weeks . Eventually went to a private GP in desperation . My b12 blood serum was very high, and I was positive to Intrinsic Factor Antibodies . I therefore assumed that all the B12 stuff I had been taking had got into my blood , but was not getting to where it was needed .

That’s why I told hummingbird88 that the B12 would show in the blood but not do any good if one has PA . But there again we know that we are all different .

You are extremely lucky if you have had no negative experiences with the medical profession , except for one haematologist!

Correct me if I’m wrong , but I feel that you must be a male .

[fbirder in reply to wedgewood]

Having PA doesn’t affect the efficiency with which B12 gets into the cells. But many of us do have high serum levels, yet need frequent injections to keep symptoms at bay (despite having low MMA and hCys). So there must be something else going on that medical science has missed (not surprising as our voices have been ignored for a long time).

Yes, I am a male. Yes, I am certain that makes a difference. Indeed, my idiot haematologist told me that my experiences were those he would expect from a woman! My reaction (open-mouthed and spluttering) told him he’d made a mistake. If I were female I’m sure I’d have had been diagnosed with ME/CFS several times by now.

The other thing that helps is being a scientist. It means I can contradict while sounding authoritative. Even that haematologist accepted that Metaplastic Gastric Atrophy, very low serum B12, positive GPC antibodies, and symptoms of a B12 deficiency, were best explained by PA, even in the absence of an IFAB test. He started the consultation by saying “Well, you don’t have Pernicious Anaemia”. It took me 25 minutes tompersuade him he was wrong.

[Ljscott]

My GP referred me to haematology and this was the reason it took me so long to persuade my GP to give me B12 injections rather than continuing to give me tablets that were not making any difference to my B12 levels. The haematologist said that because my FBC was normal and my intrinsic factor was negative the low B12 was a false low due to my contraceptive pill and I shouldn’t get injections. I can’t find any peer reviewed papers that suggest oral contraceptives give a “false low”- but plenty that say they lower the levels of B12 in your blood. I wouldn’t trust them- they cost me 3 years of being bounced back and forth.

[fbirder]

It must be haematologists. The only negative experience I’ve had with the medical profession was the haematologist I was referred to. Luckily, my GP accepted my explanation that I was going to ignore everything the haematologist said.

The guidelines say your results are confusing. If your Parietal Cell antibodies are negative then you probably don’t have PA. But they also say that a positive IF antibody result means you almost certainly do have PA. so it’s 1-1 looking at the antibodies.

But then you look at the facts that you have low serum B12 and you have all the symptoms of a B12 deficiency. Now PA wins 3-1 in extra time.

[humanbean]

Your thyroid function test results (TSH, Free Triiodothyronine i.e. Free T3, and Free T4) are currently all well in range and you aren't obviously hypothyroid. When people become hypothyroid TSH starts to rise and the Free T3 and Free T4 start to drop.

However, the fact that you have low B12, low iron and low vitamin D is common in people who are hypothyroid, and I think you are likely to become hypothyroid. It could happen next month, next year, or in five years time, there is no way of predicting. Your TSH is already higher than that of most healthy people with a healthy thyroid, showing that your thyroid is just starting to struggle, but is so far coping in producing T4 and T3. See this graph of TSH results from people without known thyroid disease :

web.archive.org/web/2004060...

In a compassionate medical system you would have been given an iron infusion, which would have fixed your low iron within a couple of hours. But unfortunately you will have to do it the slow way with tablets. If you want advice on improving your iron and your vitamin D you could follow the Thyroid UK group on this site (HealthUnlocked) and post about your results there :

healthunlocked.com/thyroiduk

[deniseinmilden]

Wow - what a good search title! Thank you!

And I think that in this sort of situation it can be better to recommend a search, rather than just post a link, because it then gives the opportunity of seeing different articles with a range of information and alternative ways of explaining the same thing. This is good because, as you say, we're all different and don't always see things equally. 😎

[Cherylclaire Forum Support]

Both the haematologists that I saw have told me that B12 is highly addictive and toxic and that it causes cancer in mice. Despite asking several times, no supporting research was produced, nor can I find any..... guess why ?

Luckily, my GP is intelligent, truthful and does her own research.

I wasted a lot of energy trying to get an answer, and became instead hugely disappointed in many (but not all) consultants. My GP once diagnosed me with "functional B12 deficiency", confirmed by laboratory test results (raised MMA) and despite everyone else since then trying to dispute this by endless testing for other conditions, no-one has found a different or better answer, so that's what I'm sticking with.

I was originally found to have low B12, folate and ferritin levels, and osteoporosis of the spine. Healing ability, vulnerability to infection, teeth, gums, hair, fingernails, muscles, joints, energy, memory, cognition, comprehension and personality were all affected too, which is why I couldn't work for 15 months. Now I can, and do: 2 days a week currently. It's a good start, and I'm still trying for more. My DNA is being looked at, so there's a chance that more will be revealed to me next year.. and perhaps this will help my family too.

I have been a vegetarian for nearly 40 years and don't believe this has anything to do with my problems, which would surely have manifested much earlier and disappeared much sooner. I would not have needed to inject either: sublinguals/sprays would have worked and they don't.

Keep an eye on your thyroid: people with much more awareness than me about related thyroid conditions (Hashimoto's) would say "get a full panel thyroid test done" - although not done on NHS, can be done by post: TSH, T3, T4, anti-TPO, anti-TG to get full picture, and keep a record of which is going up/down. People on here can help you to interpret results.

Look after yourself, learn as much as you can from research , support groups like Pernicious Anaemia Society, and here. That is what got me through this.