Body gone crazy after iron infusion

Hi all, been lurking, time to post now.

the only experiences with anxiety over the last 15 years are chest pain and arm pain, and diahrrea when I'm stressed about something. I can have a panic attack by reading about disturbing medical things (eg. iron infusions) and that involves flight, heart rate going mental, bowel evacuation, shaking etc. I have health anxiety.

I was diagnosed as anaemic 6 months ago and had an iron infusion, against my wishes, as I hate hospitals, needles and any medication going into my body (I'm very sensitive to stuff). 24 hours after, I started to feel really lethargic and heavy, weak, nauseus, moving was so much effort. Went to GP, was told to go home and come back if not better. Few days later I'm in ER, and was diagnosed with hypophosphatemia. (after I'd done extensive research for the previous 3 days and told the ER nurse to test for phosphate levels). Anyway was given IV phosphate, hooked up to a heart monitor, and sent home with a script for phosphate supplements.

After taking one of these phosphate tablets, I could feel my upper left chest go tight. Every single time.
One night ~ 2am I was woken up with a giant skipped hearbeat and was so terrified I was going to die that I stayed awake for hours.

Since then its all got worse. Once a week I'd have this breakdown, where I'd get weak, nauseus, light headed etc. Each time I went to the ER they did a lot of blood tests and said go home. A visit 2 weeks later to the ER resulted in being told to go take a stemetil - no other tests done, everyone thought the symptoms were from low phosphate.

so in January when I was in ER again, the phosphate result was ok. So now we have no idea whats causing the problem.

Gastroenterologist has no idea whats going on (and said he never heard of anyone getting hypophotphatemia, even though I've read a heap of studies where its shown to be common, plus its listed in the side effects list of the medication brochure thing)

In early Feb I got hit with sudden blurry vision, light headedness, shortness of breath, feelings of thirst and escessive urination, headache, brain fog, big random heartbeats, tightness in chest etc. Went to GP, they did ekg, and glucose tests. No problems, go home, come again some time. I went to the ER instead, and managed to get admitted under the gastro that organised the infusion. Had a heap of tests (blood tests every day for 2 weeks), echo test, mri of head. Nothing found.

Ended up being told I could discharge myself, and it was clear they had NFI what was going on.

The week after I got out of hosp was terrible. Nausea on and off, weakness, muscle twitches, muscle aching, shortness of breath, headache, brain fog, could hardly walk, all the symptoms were worse. A hot shower brings on all these symptoms. If I get cold, I get shivers so bad I can't get warm again for hours.

Went to see various doctors and kept getting told anxiety. I never had these issues before I had an iron infusion, maybe my nervous system has been so sensitised having so much iron suddenly that its gone beserk. But nobody can tell me whats going on.

Managed to get back to work after 3 weeks off, but I was in such a bad way. One day a nerve in my stomach twinged, I had the feeling I was going to pass out rush up and down a few times, and the chest tightness/ gonna die type feelings. An ambulance was called, and I was mortified at making a scene at work :-(

I've been prescribed diazepam and found that it did suppress some symptoms.

So I'm at the point now nearly 3 months later where some things have gotten a bit better, but I get new random symptoms. The latest ones that started a week ago are a tight throat, feeling like I've been punched in the stomach and want to throw up, and the continuation of the big/skipped heartbeat thing.

Now on half a 0.5mg Clonazepam in the mornings. but finding that if I dont keep taking it, the symptoms are there waiting for me when it wears off. I hate taking medication and I don't want to get addicted either.

I'm terrified of leaving the house, the train trip to work is absolute torture (especially if its an express that doesnt stop at a station every few minutes in case I need to get out)

I don't know if its anxiety/panic as I keep getting told, or if its something else related to nervous system malfunctioning due to the iron. I just want my life back again. My horses are bored as I haven't been able to ride them due to being so unwell.

Hi Poines and welcome.

I too am sorry to hear of the health anxiety issues that you are currently suffering.:( It can be scary and confusing to deal with symptoms...and to differentiate between anxiety and a medical issue.

It sounds to me like you are dealing with anxiety symptoms...this is supported by the fact that your benzo provides relief from your symptoms...

...however, that does not mean that you should not continue to rule out any other physical issues that could be contributing to how you are feeling.

For example, you were anemic...did you find the cause for this? The hypo phosphate levels could be related to this due to an absorbtion issue in the GI for example. Other conditions such as an eating disorder would need to be addressed if this is a contributing factor...

So doing all you can...both for the physical aspect, and in treating the anxiety is key.

Hibee gave you excellent advice in that therapy is an important step to consider for long term anxiety management...so if this is a possibility, please pursue it! :)

You mention undergoing your infusion against your will...are you a minor? If so, are your parents aware of your feelings/experiences? Do you have support for getting the help that you need?

Let us know how else we can help...and please post anytime. We are here to support!

Scaredy Cat

Can anxiety symptoms be constant ? I feel like my medication isnt doing enough today, and if I don't take another half tablet after lunch, by 430pm I've got the tight throat, sick feeling and tight chest which progresses to skippy hearbeats.

I thought anxiety attacks were more of a random thing that comes on suddenly then goes away?

Poines,

If you are having constant or acute anxiety, then you may want to ask your doctor about switching from your benzo to another or A/D or anti-anxiety. Vistaril, and antihistamine used off label to treat anxiety attacks is a consideration...

...it performs similarly as a benzo, but does not have the dependency risks.

As far as your iron infusements...if you have an intrinsic factor issue (you can't absorb the iron through the GI tract) is sublingual dosing a possiblility for you?

...and finally as far as non medicinal help for the anxiety...using the coping skills available here (see link below) in our Resources can really bring relief is practiced regularly.:)

https://www.healingwell.com/community/default.aspx?f=9&m=104206

I hope that you will continue to keep us posted as to your progress...and share with us anytime for support and understanding.:)

S.C.

Hi. Did you get this figured out? Were you by any chance taking b vitamins?