Hi,
Can anyone comment on what the above comments in my blood test printout might mean, please?
I have Crohn's Disease, with most current problems caused by a quite fibro-stenotic , but also terrible joint pain, which the rheumatologist dismissed as "most likely osteo-arthritis in view of my age" and did no tests, as I was on steroids when I saw him.
Thanks to anyone who can advise!
Hi, I will give you normal range values
Ferratin 18-350 (men)
Ferratin 12-156 (women)
TSH 0.3-5
Vit D2 & D3 (source plant/animal) 25-137
Hb 138-172 men
Hb 120-156 women.
Do you have a level for ferratin? Ferritin raises when there is infection and inflammation within the body . Its a protective mechanism where your body swaps iron from accessible forms (transferrin) and into storage forms (ferritin) to keep it away from infection or inflammation. Im sure Iv read somewhere steroids can affect ferratin lebvels too, but Id have to double check.
Thyroid test is within range
Vit D is low, but with Crohns nutritional levels are hard for body to store (they are fat soluble vitamins), and the other Vit D from the sun can be difficult to obtain either due to wearing high sunfactor cream because meds make you photosensitive, or you spent most time indoors by the loo!
Hb is within range which is a good sign, this makes me feel the high ferratin levels are an acute phase not a chronic one.
The 'please note' is probably for GP to prescribe Vit D supplements. They often come as a chalky chew tablet which contains calcium (calcium helps the absorption of Vit D - vegans and people who have low dairy intake often have lower Vit D levels). If you cant tolerate this tablets (like me! they only come in tutti fruity or sweet lemon flavour) then there are plain Vit D capsules or tablets.
I had years of joint pain which was dismissed, then finally I had ultrasound scans, and it showed a type of Rheumatoid arthritis called enteropathic arthritis, due to the Crohns. I was started on sulfasalazine for that and slowly over 6 months things have improved significantly so I can now walk up stairs.
Keep on hun til you get something sorted.
Hope this helps x
That really helps, so thanks very much! I never seem to have the obvious signs of inflammation, even when the doctors have observed inflammation during ileocolonoscopies (they can't get into the ileum more than 1-2 mm, though).
My ferritin levels have ranged between 439 micrograms and 1,099 in the last 2 months, so definitely not in the normal range for women!
I will ask about vitamin D supplementation, as the vit D figure was starred. It was the haemoglobin that was marked "please note".
I am in a bit of despair about the aches and pains. I have to leave the back door unlocked, as I can't get my arm up to open it. My gastro consultant was sure the arthralgia is Crohn's related and she wrote to my GP three times to get me referred to the rheumatologist as she felt I should be on infliximab. Despite the stricture, I don't score enough points for it in my CCG.
I was on azathioprine, but had to come off it as it gave me hepatitis and now I am on Asacol whilst awaiting surgical review with a view to a right hemicolectomy, but of course that won't do anything for the joint and muscle pain. My gastro consultant is really kind, but my GP is pretty hopeless and the rheumatologist just made me feel he thought I was making it all up to get infliximab. I have got so thin, as I have lost over 4 stone in a year and I thought the sudden muscle weakness I have had might be from muscle loss, or from vitamin D deficiency. but I couldn't work out from Dr Google quite what the situation could be!
I am so glad sulfasalazine has helped you! And your quick response to me is greatly appreciated.
All the best! x
Im on humira now after 6 years on infliximab (ended up with drug induced lupus) The biologics are wonder drugs but due to cost they are used for last resort meds. Im surprised your Gastroenterologist have not tried you on it tho if your facing surgery and with all that weight loss.
the only thing I can think of regarding Hb is the haematologist is highlighting that even tho ferratin is high your Hb is ok - which rules out iron producing/storage probs
Thanks.
Gastro consultant wanted me on infliximab but, even with the stricture and weight loss, I would only meet the local criteria if rheumatology agreed that the arthralgia was Crohn's-related. That is because I do not have diarrhoea, although I did in the past before I was referred to the gastro team (which happened the hospital in the end, as my GP would not refer me). The stricture stops almost anything getting through and I have had several sub-acute blockages. I rely on 8 sachets of movicol a day to go to the loo at all. Because I unfortunately got hepatitis with azathioprine and quite a bit of the stricture, which is 10 cm, is now fibro-stenotic, the IBD MDT meeting felt surgery was the best route and I am just awaiting a surgeon's appointment. I am a bit worried about having surgery when I am this thin! And not keen on surgery at all, to be honest! But at least bloods aren't too bad!
Best wishes
Deborah
Bless you, this dam illness is hard enough without facing difficult drs. Is there another Rheumy you could be referred to at a different trust. Both my consultants are in Cheltenham, but I could change one to Worcester if I wanted. I just think a second opinion would be vitally important for you. Your Gastro or GP could refer you for xrays and joint scans. If anything shows up the senior radiographer will write letter to who ever sent request x
I will ask about joint scan/x ray referral. Don't think the GP would do it, but I will try, or else ask gastro when I see her at the end of the month. Thanks again! You're so kind x
Any time hun x
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