Hematology

[Hobbits]

Does anyone here with IBD use a Hematologist as part of your health care team?

I’m hoping to add a hematologist to my team to interpret my blood tests properly.

I have 4 different doctors, 3 of them all have different options on my iron situation.

Would a hematologist be able to determine issues with anemia and how much a particular person should have in their body?

[willow24 Administrator]

Hi, im in UK so rely on my consultant or gp to refer to specific areas. Im also fortunate that im a nurse in nhs so can get advice from colleagues. As a rule there are normal values for people. Age and sex can mean slight variations, ie women of menstrual age have different values than a male of same age. I think the values are pretty much standard throughout the world

[Hobbits in reply to willow24]

I presented with the following:

extreme fatigue

SOB

Chest pain

Heart palpitations

Dizziness

Nails started lifting off nail bed

Unable to clot blood

Fingertips started bleeding randomly

Developed psoriasis on hands/feet

My PCP looked at my blood values and told me me my iron was fine at 11 even though I presented with every classic sign and almost went on a LOA from work because of the symptoms.

My Gastroenterologist was copied on same blood test as my PCP. She listened to my symptoms and looked at my numbers. She said for someone with my health conditions Crohns, RA and especially endometriosis ( with high blood loss) my numbers should be over 100.

My Rheumatologist was copied on exact same blood test. He said my numbers should be in the 50’s.

My Dematologist who I was referred to as I developed psoriasis and my nail beds were lifting said my numbers should be over 100. So my Dermatologist agrees with my Gastro.

My Gastro put me on Ferimax 125 and very quickly, I got a lot better. So I know my iron was the issue. However now every time I eat the pills I get violent cramping, the kind that lays you out on the floor begging for mercy. So I stopped taking the pills. I called my Gastro to request an infusion ( it’s one time, instant results, no daily pills and is covered by insurance ( the pills are 70. Out of pocket) and the charge nurse told me to drink the iron, open capsule and drink it in water. I tried it and get same result, very bad intestinal cramping. I have since stopped taking any oral iron, slowly the heart palpitations are returning.

I am wondering how does a doctor determine what a persons iron number should be? Are all my doctors just guessing?

It’s been suggested to me that the doctor I need to see is a hematologist as they can determine what I need. But how? Wouldn’t they do same blood test?

I feel like a Guinni pig and all my doctors are guessing.

4 different doctors and 3 very different answers. I was told different doctors read tests different but I’m really baffled how my PCP could have missed this.

I’m also told from fellow IBD patients that their doctors do not recommend oral iron for IBD patients.

Any insight would be appreciated.

[willow24 Administrator in reply to Hobbits]

Iron tablets can cause probs with Crohns, however there are different variances. in UK we have ferrous sulphate (most commonly used), ferrous fumerate and ferrous gluconate. some people find they tolerate one type better than another. It may be worth taking folic acid, they are cheap and can be bought in supermarkets etc

[willow24 Administrator in reply to willow24]

sorry meant to add, I would assume haematologist would do same bloods like Hb, B12, folate, and if these are not spot on or if there are concerns, an iron studies blood test x

[viajera]

Yes, Great Idea! Your iron levels involve many different measurements, not just one, and a specialist can help you sort it all out. They may prescribe iron infusions since they bypass the GI tract, and can often help you avoid blood transfusions if things were to get worse. Also, Vitamin B12 injections or just sublingual pills (the ones at Trader Joe's in the USA work for me with few gut side-effects), and Vitamin C (helps absorb iron, so I experimented and found a decent gummy version that works with fewer than average gi side effects at least for me) can help, too. Everyone's different, but, again, a good hematologist can help you sort it out. Hope you start feeling better soon.