Becoming more and more of a hypochondriac

I don't know if this is the right board to post on about this, since most of you had UC and keep banging on about how surgery gave you your health back, but whatever - maybe there's still a few who can relate.

I had surgery in February 2013. I can't stop worrying about the Crohn's returning. I hardly ever get to see my GI anymore - should've seen him in June, but he wasn't there; now appointment has been deferred until September. My GP did some blood tests recently, which showed a sharp drop in ferritin from 65 to 14 in a few months. Haemoglobin was still normal, but if my iron stores keep on being plundered, that will drop as well.

Have struggled with anaemia for years. Never really got it under control until after surgery, where finally both my haemoglobin and ferritin were within the normal range.

After surgery, my GP diagnosed me with Hashimoto's thyroiditis, for which I am taking 50mcg Levothyroxine. It has brought my TSH down from 11 to 5.5. Meanwhile, I'm suffering from burning feet/lower limbs at night time, with tingling in my feet, hands and face. This peripheral neuropathy seems to be slowly getting worse, but my B12 is always 'normal': 291 this time around. I have read that B12 is not always absorbed, so you can have enough of it in the blood serum, but it isn't necessarily being used.

GP has prescribed liquid iron for me, but I am reluctant to start it given my long history of being unable to tolerate oral iron in the past. Can't take it with Levothyroxine either.

I'm just in a complete funk over what this drop in ferritin means. I keep thinking it means I have disease activity once again, and my heart sinks. Based on 12 years of long experience, I really don't trust doctors in the slightest anymore. I'm paranoid and suspicious and sunk in gloom at the thought of having to deal with snotty healthcare workers who don't understand why I am so scared.

Am I justified in being this scared? I can't relax. I can't enjoy my remission (if it still is remission).

I have turned into a bit of a hypochondriac as well. If the slightest thing seems strange, I am struck with a myriad of thoughts... My stoma is defective, my butt wound is infected, or my crohns is back. I usually try to rationalize my way through the thoughts, and I slowly regain my saner thoughts.
However, I think your ferritin dropping is concerning especially considering your history with anemia and the current symptoms of neuropathy. Are you having other symptoms of a crohn's flare? If not, I wouldn't right away think your crohns is returning. Can you get your gp to run more tests or at least call your gi with your concerns? Hope you get some answers soon! I think it is a very fine between being proactive about your health and driving yourself crazy! It is a constant struggle for me.

Cheers guys.

I change my mind about the Crohn's on a day to day basis. Sometimes I'm convinced it's back, while other times I'm equally convinced I'm overreacting. I used to be able to brush aside worries like this so easily, because for years and years I kept telling myself it was nothing serious. I thought I would never need surgery because I didn't have bad enough Crohn's; and so on and so forth. I needed a doctor to spell it out for me, and the one time a doctor actually did that, I found ways of rationalising it away.

Now it's so, so, so much harder. @Smd79 - Honestly, I can't tell. I have significantly more abdominal discomfort than I did last year, but the output itself hasn't changed much. Stoma looks about the same as well. I have had a few moments of real pain, but those are few and far in between, and I don't know if it's caused by Crohn's or something else. All very vague. However, my Crohn's did start up very mildly the first time it appeared; really, 1 liquid stool a day, that was all! It was amazing I got a diagnosis in retrospect, but I did. While the diarrhoea got slowly worse, it still continued to be really mild for a few more years until I became ill in 2005.

I do have Hashimoto's, which is another autoimmune disease. Even tried asking on a thyroid board yesterday if Hashimoto's could cause low ferritin; nobody seemed to know for sure, but some people did report having low ferritin, among other things. Think I have to assume for now that my drop in ferritin could be due to either Hashimoto's or Crohn's and at the moment there's no obvious way of telling.

The neuropathy is bugging me. My GP is away for 3 weeks and consultants are literally impossible to speak to outside of appointments in the UK. I can, however, bug the unhelpful IBD nurse instead. Provided she hasn't gone on holiday too.

Edit: Urgh, my stomach has been hurting fairly badly for the past hour and I'm feeling quite nauseous as well. Had bland food all day, apart from a side-salad at lunch. Never got this crap last year, so cranked right now. Pretty sure food is having trouble getting through somewhere, but if it was a Crohn's inflammatory stricture, I'd expect my CRP to have risen and it hasn't. Stomach pain getting even worse... urgh, I'm gonna make a cup of hot weak tea and try to shift this bugger.

Post Edited (NiceCupOfTea) : 6/2/2014 5:45:16 PM (GMT-6)

I think you need to annoy anyone who will listen so that you can at least have your concerns heard by the GI. If you have to pester the nurse then so be it. As we both know, It is always possible for the crohns to come back so if you are having any flare like symptoms, it needs to be checked out right away. I am on meds right now, but I don't know how you feel about going down that road again.

Cheers folks.

If you saw my other thread, you'd have seen it was a partial obstruction :-/ My abdominal symptoms are similar to what I had with a Crohn's stricture, except milder. However, if it's a Crohn's flare-up, then there are no systemic signs of it: no fevers or raised CRP. It's just bugging me.

Don't want to cry wolf by playing up my symptoms, but don't want the IBD nurse to completely fob me off either. Bleurgh.

@Smd79 - I don't fancy going on meds again, given how little they did for me before surgery. They might work better with milder disease, but, honestly, I doubt it.

@answers - Yeah, I feel on your last sentence. Not that I ever smoked, but I felt much healthier in the early years of my Crohn's than I do now - could also eat anything. Obviously that changed at some point, 'cos I would never have had surgery if it hadn't, but yeah: miss the days of feeling like I barely had a disease at all.

Technically, not having a colon shouldn't make any difference to nutrient absorption, since most of our nutrients are absorbed in the upper small bowel, including iron. The only things colons absorb are water and a few electrolytes. That said, the effects of having a colectomy upon metabolism are still poorly understood: my former hospital is doing a study on this, which I hope it finishes.

www.controlled-trials.com/ISRCTN76735966

I read the Wiki entry on hyperaldosteronism and am now 93% convinced I have it... >.>

I admit your concerns do seem a bit extreme. There, I said it. Because I myself have Crohn's disease, anemia often, and hypothyroidism. You _can_ take iron with Synthroid, you just have to take it later in the day. And yes, many iron pills are upsetting to the stomach, but there are also many slow-absorbing ones that I find are just fine with food. Low thyroid hormone can cause the symptoms you have, like tingling extremities and cold limbs. Anemia is not such a rare thing that I would be particularly concerned.