Hi all! I feel like I’ve posted a lot lately…my apologies, but you all are a wealth of info. I did weekly B12 injections from October to mid March. Started twice weekly (per neurologist’s instructions) mid March and still on that schedule. The increase has drastically improved my neuro symptoms. I also have iron deficiency without anemia and am being followed by a hematologist for that issue. At the beginning of February my ferritin was still low so they increased my supplement intake. I had a couple of great weeks and the end of March/first of April but the last couple of weeks I have had increasing joint pain, fluid retention, exhaustion, increasing palpitations (I’ve been checked out by a cardiologist and they were less frequent during those two good weeks), muscle cramps, night sweats, and chills. All of these I had at some time or another before being properly treated for iron deficiency and B12/PA.
I have an appointment with my hematologist this week and have already had my bloodwork done. Unfortunately they didn’t run folate or potassium as they have the past two times. Could either of these be my issue? My WBC is in range but lower than it has been. Ferritin is still slowly increasing. What other testing do I need to push for or options to explore. I’m so frustrated since I was feeling so much better. I made sure to rest a lot of the weekend but it didn’t help.
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lambuth_eagle
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The only thing I can suggest is have Iron with vitamin c (apple juice) on an empty stomach before tea or lunch and avoid dairy, calcium and caffeine for at least an hour.Did you keep a diary of symptoms and food etc when you felt well ?
As for further blood tests yes perhaps folic acid other than that I really cant help, but I do hope you find the solution soon.
Yes, I take my iron first thing in the AM with apple juice. I don't drink caffeine and don't have any dairy or calcium for several hours after. Usually not until lunch and even then I don't usually have dairy until dinner.
Thanks for your reply and suggestions! Glad to know I'm on the right track, even though I seem to have a set back.
I'm truly sorry that things are not good for you at the moment, if only our bodies could talk to us instead of inflicting more pain !I hope you find out what is wrong soon .
Heart rhythm/function does depend on potassium and low potassium causes cramp. You will also be exhausted if you don't get enough - a sort of cloying tiredness.
How old are you? Could it be hormone changes? (All/any of your symptoms!)
Any idea of your blood sugar levels? (Night sweats and chills especially, but exhaustion, and joint pain too, possibly)
What are your vitamin D levels like? (joint pain, especially)
Not sure about the fluid retention - heart function? Kidney function? Electrolyte imbalance (back to your potassium & magnesium/sodium/calcium again)? Hormones?
Have you asked on ThyroidUK on here? The people there are phenomenally knowledgeable.
Because the day has a "y" in it? 🙄 Sorry - but it feels like that sometimes! There's bound to be a reason for it but tying it down is so difficult at times, isn't it. Last year I was reasonably well for a month in April/May time and again in September/October, and the rest of the time I felt dreadful, fighting something! It's so tantalising when that happens! You know you can be reasonably OK... it's just working out how to get there and stay that way!
I have an embedded virus which causes shingles type symptoms which is terrible. I now take antivirals every day to keep it under control and that's improved things a lot. I have a tenancy to get cysts in my tissues and my body doesn't behave well when it's growing a cyst! I'm not saying you've got these problems but am just illustrating how it is possible to have weird and wonderful things that confuse the picture.
I'm always battling to work out what symptom is attributable to what and so work out how best to fix it/get around it. And just when I think I've got a handle on all my pre-existing problems, suddenly something new crops up and it's another new, steep learning curve!
I'm sorry I can't offer anything specific but hope you find an answer soon. Please let us know if you do get to the bottom of it as it helps us to help others - and ourselves!
Thanks so much for your reply. I appreciate the thoughts and compassion! It certainly is frustrating to not know which is issue is causing what. Hopefully my hematologist will help me get it figured out. If not, I'll check in with my neurologist and see what he thinks. He's amazing.
Some of this could be attributed to hormones...I'm 43. Not sure about how my cycle is since I had an ablation in October to help with the low iron/ferritin issue. But yes, that's a possibility, but I don't have hot flashes during the day. My teenage son actually just said to me, "I think you aren't tolerating cold very well. You get cold a lot."
Vitamin D was last checked a couple of months ago and was 43.3 (range: 30-100).
I've been checked out by a cardiologist (two week heart monitor and echocardiogram) and all looked fine. She actually knew more about iron deficiency than the first hematologist I saw! Ha! I would assume kidney function is fine based on all the bloodwork I've had done over the past year and no one further checking that out.
As far as electrolytes...they were last checked in February (other than Magnesium which was checked in August):
I'm really pleased that your vitamin and mineral levels are good - that's a great start. Nothing obvious was shouting at me, they were "maybe" ideas and that's probably why.
The night sweats was more suggesting itself as sugar levels - but that might just be because I've had a week of hyper and then hypo symptoms, which includes the cold night sweats, so it's towards the front of my mind. Do you get very thirsty and need to wee a lot, particularly at night? If so, or you have any other symptoms from the list, the test to ask for is an HbA1c test.
Like with the vitamin and mineral levels, sugars can fluctuate quite widely and you might get random days with symptoms when your levels are extreme, while you can still test "in range" on a good day - but this doesn't really explain ongoing issues.
Now you say about not tolerating the cold as well, it even more convinces me that asking on the Thyroid UK site would be a good idea. I know that certain problems don't always show up with the first line tests but the guys there are so brilliant, they will definitely help and have more, better knowledge than me - on a whole host of things, as well as everything thyroid! After this message (it often crashes my reply if I do it within the message) I'll try to tag Helvella who runs the group and Marz. I wonder if Polaris has seen this - she has a lot of all-round knowledge too?
I'm so pleased that you have a good neurologist, cardiologist and a useful haematologist - you are very lucky! Last year I had an experience with a cardiologist who I think has lost the plot and have had a 2nd referral to another one who is also brilliant - and very knowledgeable on vitamins and minerals (as I think they should be, but!) so I now know what you mean about getting a good one!
Thanks for your kind and thorough reply! Saw the hematologist today. Nothing on the labs is indicating what is causing my current symptoms. She did tell me to increase my vitamin D for a couple of weeks then I'll increase my iron again and see how that goes. Otherwise she wants my PCP to do some specific bloodwork such as TSH, Free T4, A1C, ANA, Sed Rate, and CRP. We'll see what comes of it.
I would only agree with deniseinmilden that VitD might be worth looking at for the joint pain? Fluid retention can have so many causes, so it isn’t easy to find a solution. Generally heart or kidneys are the main suspects. You could try a calcium and magnesium supplement for the cramps? Sorry I can’t offer more help. A lot of things I find are trial and error, give something a try to see if you feel any better.
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