Link Between Iron Levels and PH

[jen-cueva]

Thanks, Colleen! This is a very interesting and informative article. I do have low iron ( iron deficiency anemia). I have to get iron infusions as my body wasn’t absorbing the real iron pills.

I have a Hematologist on my care team and have for several years. I just completed my last series of iron infusions on New Year’s Eve. My appointment last week, he said that my iron levels continue to drop and I’ll need another series between now and September. We will base it on my labs and if I’m craving ice (which I do when it’s extremely low).

My PH doctors have never contributed it to PH or vise verse, I have anemia in my family history, so they say it is the cause that but my Hematologist thinks that my PH meds are contributing to my anemia.

[Colleen]

Jen, now that you mention it I vaguely remember my son having an iron infusion before but I can’t recall if it was pre or post transplant. I would say anemia is probably hereditary for him as well since I have always struggled with it. I struggles bad with anemia when pregnant with him…good grief…could that be a connection? Who knows!

How did you do with the iron infusions. Did they make you nauseous at all the way iron supplements can?

I wouldn’t be surprised if certain PH medications contribute to anemia because the iron deficiency my son has now is contributed to his transplant medications.

[jen-cueva]

LOL Colleen, no the iron infusions do not make you (or me) nauseated or constipated as I know the oral iron can do often.

Who knows what came first? We may never know, just do what we have to do and move along, lol

[Brittany Foster]

Hey all,
Surprisingly even with such low amount of nutrition the last 6 months, my body has adjusted and a lot of my nutrient levels and my blood counts are surprisingly okay and in normal range. It’s so shocking to me how much the body tries to adapt and “level out” even when you don’t think you’re giving it enough especially when there is lack of the essential vitamins and nutrients. My PCP was actually very surprised that things looked okay. The red blood cell count is always slightly low for me, but not anything that would need treatment (thankfully) because I have had an iron infusion a few times in the hospital and it BURNED like crazy!

[Colleen]

Wow Brittany, that’s great! The body is truly an amazing machine!

[jen-cueva]

Wow, Brittany! that’s definitely is amazing news! Our bodies never seem to amaze me! They tend to be so durable!

Ohh yes, those iron infusions can burn. Usually if they have the infusion rate too high. I had one nurse who did that to me at my last one in December. Ouuchhh…I let her know quickly, lol

[Brittany Foster]

I’m like a durable battery at this point haha! And you’re right about when the infusion rate is up too high. It is definitely noticeable ! They have to run a lot of medications slowly for me or else they risk the veins blowing. Happened to me a few times and I had an infiltrated IV. Especially IV benadryl or it is quite the head rush if they put it through too quickly !

[Colleen]

Brittany, when my son needs an infusion of any kind we have to go slow because of his veins and also because he just always seems super sensitive to whatever they are administering. He occasionally needs IVIG infusions and he has to be admitted for those so they can slowly give it to him over 18 hours. If they go faster he gets so sick, especially with a migraine that can last for days.

You’re like a durable battery…that’s funny!

[Brittany Foster]

I get migraines really easily from infusions too. Something that always gave me an awful headache and migraine after is when I get a CT scan or MRI with contrast. For some reason I have an awful neurological reaction to the contrast. This is actually marked as an “allergy” for me so usually I get the IB benadryl before a scan so it helps (might just put me to sleep and that’s why I think it helps haha!)

[jen-cueva]

Too funny Brittany, I often say I’m like the ” energizer bunny” minus the energy lol

Yes, my veins are small and now full of scar tissue, I imagine that your son has this issue too, Colleen. I know with all Brittany has been through, it’s really hard on your veins.

Interesting about the contrast, I haven’t had issues with this but the last few years I’ve not been to have the contrast due to kidney issues. Oh Brittany, Benadryl knocks me out too, lol

[Brittany Foster]

Jen,
What do they do about the sensitivity to the CT contrast? Is there something different that they use when they need to do a study with the dye or do they just avoid that altogether for you?

[jen-cueva]

As far as the contrast, I just have had to have tests without contrast. Although these didn’t offer the best images, it was better than just not having the tests, per my doctors. I know last year, they waited until my kidneys were at a certain level ( little improvement) and then allowed me to have the test. My CKD ranges from stage 3-4, I’m trying to keep it more in the 3 range as I know, then that’s when I have the least issues.

[Aunt Lizzie]

I am a bit late in getting into this discussion but just read the article 28 April 2021 on Iron Supplementation and impact or not on PH. Very interesting. In the last 8 years no doctor has mentioned the possible connection between PH and iron deficiency but I have had low ferritin 3 times and an iron infusion in 2016 and another due next week. Last one perked me up no end and hope this one does too. I know when it is low, I have no stamina. I don’t think it changes my 6MW or other functions though. Docs usually start looking for areas of possible blood loss with colonoscopy or endoscopy, or urine and feacal tests. Nothing ever shows up there. I had a very bad case of Shigella dysentery back in 1984, 2 years later my heart started playing up, but it wasn’t until 2012 that PH was diagnosed. Shigella knocks your innards about something awful. I have always suspected this as causing a number of gut and heart problems.

[Colleen]

@auntlizzie there is no such thing here as being late to a discussion. In fact, we encourage revisiting former topics so new members have a chance to benefit and contribute to them. Thank you for bringing this topic back to the top.

I’m curious if since reading the article if you have plans to discuss iron deficiency with your doctor?

[Carol Volckmann]

Hi @colleensteele. Thank you zcolleen for you and Jen bringing up iron/PH again. I gad not seen this. My iron levels tanked – my iron saturation went down to 8 – not too good. My Pulmonologist had suggested nearly 2 years ago that I have iron infusions, guess I can no longer push that away.

How was your weekend at the shore with your girlfriends. You were in my thoughts all weekend thinking of you just being able to let go, laugh feel joy and feel refreshed. Sadness too was/is important, but I am glad you were able to have sometime to see beyond that!

Lots of warm hugs, light and love ❤️.

[Terry]

Just read your post Aunt Lizzie and it was a wow moment.
At one stage during my quest to find out why I could not breath I was sent for a bronchoscopy and my iron levels etc. were so low I was kept in hospital overnight and given an iron infusion ,blood transfusion and diagnosis I was losing blood somewhere.Subsequent Colonoscopy and Endoscopy showed nothing .

I had an aunt lizzie. Sheep farmer. Dad sent me there on holidays sometimes. Each morning breakfast was eggs, lamb chops and glass of milk. The catch was we had to go outside in the freezing cold to milk the cow , collect the eggs and retrieve the chops from the Coolgardie safe hanging in the tree.
A sheep was dressed once a week off the same tree.
We reckoned she was so tough that that was where the saying tin lizzie came from.
Its not you is it Aunt Lizzie ? Na can’t be.

[Aunt Lizzie]

Well I started a reply to both you Colleen and Terry but the Cookie window came up and wiped me out (I think), so here goes again. Yes I am definitely going to speak to my various doctors about the possible connection between low iron and PH – a no-brainer now.
Terry I loved your post. Took me back to a Station out of Broken Hill. Tough mutton, and a good fry-up for breakfast. Wonderful for the arteries, eh? Now was that your Aunt Lizzie or the sheep you thought of as Tin Lizzie? Also, we had a holiday shack down at Aldinga in SA. No services laid on so it was a quick dip at the beach to keep clean and a long-drop down a dusty path. Rabbit stew for dinner and of course a good fryup for breakfast. Oh yes, and no I am not your Aunt Lizzie although I may be old enough to be.

[Colleen]

@auntlizzie those darn cookie windows. I’m sorry you type your comment twice.

It’s a small world how you and @terry are not far from each other. I’m enjoying the conversations between the both of you. Keep them going!

[Terry]

Hey Liz. Hang in there mate and stick to your guns to get answers. Most docs. eyes glaze over when you say PH.
I was going to say especially in SA as they still practice blood letting for headaches but I know its not true.
Would you believe we came from just up the road from you in Mallee country.

[Carol Volckmann]

Aunt Lizzie. I totally agree with Terry. Don’t let the doctors dismiss what is the obvious. PH and PAH does link with low iron levels. I have not had to have an infusion yet, but do take high levels of iron 3x per day.You might go on line with the Mayo Clinic or others and show your doctors the findings. By the way, just love the written journey you and Terry shared!
Carol

[jen-cueva]

Hi @cdvol3gmail-com, this is another topic about iron levels and PH. As you may recall, several members struggle with this issue.

How are our Mates doing in SA, @auntlizzie and @terry? Your descriptions about the old, old days and Aunt Lizzie were hilarious. Thanks for brightening my very early Wednesday morning. Hehe.

I hope you all are doing well this week.

[Carol Volckmann]

Thank you Jen @jenc for the link of iron and PH. Guess thar is why my Pulmonologist suggest I have the infusions nearly 2 years ago. My iron saturation level is down to 8. Not so good. Thanknyou again for the link.

Hope all your scoping went well today and you’re on you’re way home to cozy in and rest. Time for Tacos and milkshakes can come later – maybe not in that order 🤔! Hehe

I am going out to get some spinach and lots of it!🥦🥬🫛 top it off with ice cream 🍦 😋

Bug warm hug and positive energyvfor positive results 💖

[jen-cueva]

Hehe, @cdvol3gmail-com, I didn’t get any ice cream until this morning. The procedure took longer than I thought, and even with a tiny amount of light anesthesia, I was out when I got home most of the evening and then went to bed.

I ate half of a grilled cheese that Manny made me about 9 PM when I woke up to go to bed. For some reason, I wasn’t hungry after the procedures.

All good, just a few polyps removed and sent for biopsy. Otherwise, good again for ten years. Now, why can’t all procedures be good for ten years? Thanks for your sweet support and positive thoughts, my friends.

Yes, ma’am, you better eat all the extra spinach and ice cream, of course. Hehe. Your iron certainly needs to be replenished if it’s at an 8. Mine was a 7 or 8 once when I had mine. That infusion may boost you a little so you’re not so exhausted.

Please let us know when this is scheduled, my dear PHriend.

[Carol Volckmann]

Hey sweet friend @jenc so glad to hear your procedures went well and now you can put those procedures on the back burner for 10 years. See, one thing about being 79 they tell you don’t worry about it, you’re done!

Sending you thoughts of “negative” for the biopsies on the polyps.

How are the rest of your labs holding up? Good positive wishes and thoughts coming your way.

I have a tel/med appointment with PCP next Wednesday and the following Tuesday with my Cardiologist. I am going to ask her to refer me to a Gastroenterologist who specializes in digestive issues. She had done so a year ago and I pushed it aside.

Have a yummy dinner tonight 😋 and sweet dreams with Manny right  beside you! ❤️

[Colleen]

@jenc happy to hear things went well today. I remember not being very hungry after mine. I think it’s all the yucky stuff you have to drink beforehand. It takes a while for your body to be ready to consume anything else. That’s my theory anyway.

[Aunt Lizzie]

Hi Jen and others,  Yes, I’m doing well these days – doctors keep saying I’m stable, so that keeps me happy.  Will need a new pacemaker shortly and am not looking forward to that, but everyone says this procedure is not as bad as when they put the first one in.   I’m a bit of a boring person these days.   If you’re reading this Terry – I’ll be heading down to SA next week and will give a wave as we go through Pinnaroo.  I love that area.   Cheers for now.

[jen-cueva]

Hi @auntlizzie, I’m so sorry to hear about the need for a new pacemaker soon. I hope and pray it is a simple procedure and you can get home shortly after.

Boring? That’s not bad. That means you haven’t been running around to multiple appointments, right? What about your DIY projects? I can’t imagine you, our DIY Queen, boring. Hehe

Thanks for the update, and please keep us posted on your pacemaker appointment. Is that next week? Or is that a pleasure trip? Cheers and hugs back to you, my PHriend.

[Colleen]

Thank you @cdvol3gmail-com @auntlizzie for updating us on your Iron deficiencies. When is it decided that you need infusions? Do they only suggest that when you have a condition like PH?

I’ve struggles with Iron deficiency anemia since childhood. It was so bad when I was pregnant I had to express my wishes of what I would want if the decision had to be made between my life or my baby.

I can tell by increased bruising when my iron levels have dipped. Do you experience this too? Other than supplements I have never done infusions.

[Carol Volckmann]

Hi Colleen @colleensteele I guess I find it difficult to believe that your doctor has not prescribed iron infusions since you have been diagnosed with iron deficiency anemia. Further you have been struggling with this since childhood.

I am certainly not a medical professional, but just googling the levels I have and look at what the Mayo and Cleveland Clinics say. I would think your doctors would have you on infusions very so often. If you google iron deficiency you can see what the norms are for the iron levels and saturation.

Colleen you have so much on your plate right now, but my best advice would be to call in or mychart your doctors with your latest test result readings.

There is a link to PH but that is just one link.

It is well worth it for you to check this out. I know you say you keep putting your health issues off i.e. going to the dermatologist etc. Please take care of you too!!! With love ❤️,  Carol

[jen-cueva]

Hi @colleensteele, I’m not a doctor, but in my case, my body wasn’t absorbing enough iron from foods and supplements to keep my anemia at a reasonable level. This is why my infusions were started.

My hematologist would order more detailed labs, like total iron, ferritin levels, etc. When it started decreasing again, he knew it was time for infusions. It was every 3-6 for several years. Now, it’s not as frequent.

I hope this helps you understand better. But with you being so anemia, that sounds scary when you were pregnant. When was the last time they checked your iron? Maybe have them done before you head to NJ and get that done before you move. Although I know you already have so much to do, my dear friend. You could need infusions if you’re extra fatigued, cold, pale, or bruising(yes), weak, headaches, etc..

[Carol Volckmann]

Hi again @colleensteele I was just thinking about your symptoms of iron deficiency. I have not had any brusing and have not had any infusions yet but I guess my levels are so low that looks like I will need them.

My Pulmonologist put me on iron supplements 325mg 3x/ day and it did help. I was reluctant to have infusions. My PCP had me taking just one/day. So… ???

I cannot begin to imagine what you must have gone through while pregnant and having to possibly make a choice. Colleen my heart goes out to you, you have gone through so much.

I hope you are able to reach out to your doctor before moving. Positive thoughts and wishes for the very best outcomes ❤️❤️

[Colleen]

Thank you @cdvol3gmail-com . Except for when I was pregnant and nursing I don’t think my iron deficiency is worrisome. My major symptom is bruising. On a light note…when Cullen was younger he thought it was funny to press his thumb on my arm or leg and see if the next day I would have a bruised smiley face. Sometimes it worked! It never hurt when he did this, it’s just that is how easily I bruise sometimes.

How are you feeling Carol? Are you doing ok?

[Carol Volckmann]

@colleensteele Hi Colleen, you always amaze me. You will always find the funny bone – Cullen when little making a happy face with your brusing!

Thank you for asking. I have not been feeling very well: very tired, fatigued, weak and my bloating just is not going away. I think a lot of those issues are due to how low my iron levels and saturation percent are. Hopefully I will be able to reverse this either with oral or infusion meds.

My bloating issue has resisted all possible combos of antibiotics so, what is next I have not idea, but there must be a next!!

I am hoping today finds you doing okay especially after such a grand weekend at the beach. Jersey shore water will be warmer !!

It all has to be so overwhelming for you. I hope you are getting much needed help and that you are being kind to yourself. Sending you warm hugs filled with love ❤️.

[Colleen]

@cdvol3gmail-com darn, I was hoping maybe you were starting to feel some improvement. I hope you are getting complete care and that all of your doctors are monitoring you. As you know, one thing can effect the other so they need to all be on board and pro-active in helping you through this.

Make sure you rest…that included constant rest if that is what you need right now!

[Terry]

G’Day Y’all, I was going to give you lot a rest from my ramblings  for a year or two but Jen here gave me a kick up the tail so to speak. Hey Jen I gather your having a bit of a rough time. Just as well your tough hey. Re the topic , I am about to arrange for an infusion due to low iron , again. I remember when I was complaining I could not breathe to every Tom,Dick and Harriet and being told I had mild emphysema and was bleeding from somewhere and had cameras stuck up everywhere .Of course I had PAH and low iron which goes hand in hand for some of us. Last three months have been a challenge. Boss has a.fib. along with hht . Nearly lost her. Cant take thinners and danger of clots due to drugs for hht.
Saw PAH bloke ,did blow hard as you can tests and 6 min walk . Alls good. Had regular blood test for iron level and Temporal artritis check a few weeks ago. WHAT , iron down and one of the markers for TA up . Doc. Mentioned that nasty word Prednisone ,I said forget it so he rang  the Rheumatologist who treated me for suggestion. I heard the word Halo.  Whats this halo businessI asked ,only saintly dead people have halos. Na I had a halo ultrasound to check on the temporal arteries.  Another blood test next week.  He had considered another MRI of the brain but as the previous one showed I had nothing between the ears decided it a waste. Saw the cardiologist yesterday. Pressures up a little bit and the ticker is beating ok . Oh and worst of all I crashed the boat docking. A seniors moment. Oh well even monkeys fall out of trees sometimes . AND please keep safe y’all with the terrible weather your having keep it up there north of the equator , na further north please.   See rambling again. See ya.

Hey Lizzie, I can see ya waving mate.

 

[jen-cueva]

Oh no, @terry, I hate to hear about the issues The Boss Lady has been having in recent months. Wow, that’s so frightening. How are you both doing now, Mate?

It sounds like it’s time to schedule and get your iron infusions. How many does your doctor usually order? That certainly will also affect our breathing.

Before I was diagnosed with PH, my PCP thought my breathing issues were caused by anemia. It is possible, but not with all the other symptoms I was experiencing. He was wrong, and thankfully, I was diagnosed soon after that.

On no, you crashed the boat, Mate! You better stop looking at the beautiful ladies in their swimsuits at the dock! You know it was that and blaming senioritis. Hehe. You better stay safe, my PHriend.

All is okay here; I hope to have a quieter few weeks with appointments.

Thanks for updating us and, of course, for the laughs. Take care of yourself and that lovely Boss Lady, Mate. Let us know when you have your appointments scheduled.

[Colleen]

@terry as much as we like to discuss the positive please remember these forums are to help everyone through their difficult health journey. Please, never hesitate to update us about the good, the bad and the in-between. Post every day if you need and feel up to it!

You and your wife have been through so much! I’m sure worrying about each other while trying to take care of your own health sometimes takes a toll on both of you. Is there anyone helping the both of you even if it’s just running errands?

I know prednisone is horrible for it’s side-effects and yet usually helps whatever cause it’s prescribed for. My son and I have a love-hate relationship with it. So, did you officially dodge prednisone or is your doctor keeping that card on the table?

Good luck with your upcoming appointments. Give us a heads up once they are scheduled so we can offer our support.

[Aunt Lizzie]

Hi Everyone,  Jeez Terry you’ve got a lot to deal with – chin up.  Hope the Boss is well too.   My Pacemaker will be replaced in next couple of months, as my battery runs down.  We’ll be driving to SA to see all the old friends and relatives that like me are starting to fall to bits.  A favourite part of the visit is with 2 old girlfriends when we buy fish and chips and sit on the beach at the Grange and watch the sun go down in the West.   As to iron infusions, I too was a bit nervous about this, but had absolutely no problem.  First one back in 2017 took a few hours, next one about 2 years ago was much quicker, perhaps an hour or two.   I can tell when my iron is low by my Ferritin levels in blood tests, but lack of stamina is the main thing and pale skin.   If the ferritin is not shown on blood results, my iron looks OK, so I always insist on ferritin being checked.  Then, Docs always want to stick cameras into every place they can think of but they never see any actual bleeding.  I believe its our medication causing low iron, rather than the actual PH itself.  I may be wrong.

Cheers all

[Terry]

G’Day Colleen, Thanks for your words of encouragement. Actually I am very mobile, you know, go and get the paper for the boss every morning, do some shopping , get take away three times a week (I can’t cook , well perhaps eggs on toast. When the boss was away many years ago I cooked dinner for my  three young daughters  baked beans on toast . They refused to eat. I had cooked up the wrong beans yuk) , wash floors ,  make beds ,mow lawns, walk 2 ks 5/7  ,go sailing . Its hard work being a housewife.ha.  As you well know sometimes the best solution to ones own ailments is to worry about someone else. I’m really good. Unfortunately I need regular blood tests to moniter markers for  temporal arteritis although I know when its knocking on the door as my scalp becomes tender so prednisone really is my nasty friend . My bosses issues with hht and afib are not for here but mate I’m having a picnic in comparison to her and what I read on this forum.  Keep up the great work mate

 

[jen-cueva]

Hi @terry, you’re so right! Our caregivers find themselves thinking like you, too. I’m also guilty of this, too.

“As you well know sometimes the best solution to ones own ailments is to worry about someone else. I’m really good. “

We tend to keep busy with something to keep our minds from worrying about our issues. We worry about others. You’re such a wonderful housewife. I know the Boss Lady appreciates all you are doing to help as you recover. That was such a frightening time for you both. I am thinking of you both and sending you positive thoughts and prayers, Mate.

Please take care of yourself. Poor kids! You made the wrong beans; that’s hilarious! Hopefully, you went for takeout after that mishap!

How many can relate to Terry’s comments to @colleensteele?

[jen-cueva]

Just wanted to share some information that @scott shared in an update about this topic. Scott has years of experience with PH and HHT. We are grateful for his shared knowledge and experiences.

He says, “Unfortunately this is an issue known well by many patients with HHT as over 50% are anemic and/or iron deficient. That number is probably significantly higher among those with HHT and PAH due to the bleeding effects of PAH medicines. Many doctors are not as aggressive as they should be at times and having low ferritin itself is a problem so iron supplementation should be considered even when hemoglobin and iron levels are ok.

Often pills are not tolerated or do not work well enough and infusions are generally safe and very effective. There are a number of iron products available. Some deliver much more iron than others. Non-heme iron supplements tend to have GI side effects and should not be taken with food or coffee, tea, etc. Heme iron is much easier on the GI system and can be taken with food. Studies have shown that taking oral iron every other day and in the morning is the most effective. If levels are not responding to oral supplementation, IV iron should be considered.”

[Carol Volckmann]

Thank you @jenc this was very helpful. I will certainly talk with my doctor about Heme iron taken every other day in the AM. I do not know what HHT is – would you explain please. And thank Scott for his input.

Weekend coming up – maybe feet in the sand! And maybe Friday night Taco 🌮 night!! Hugs.

[jen-cueva]

Hi @carol-alexander, my apologies; I’ll link some information about HHT, a genetic disorder, with abnormalities the blood vessels below.

CDC-HHT

PH and HHT- PHA

I put my feet in the sand and did a short bike ride in La Jolla yesterday. It was a beautiful day, even with the busyness of tourists trying to soak up those last days of summer.

Manny grilled fajitas last night for family dinner, so we enjoyed a Taco Tuesday a few days early. We also had a lovely Italian dinner for KK’s birthday Friday night after my wild child skydived out of a plane earlier that morning. You better bet this Moma was anxious until she texted and said, “I’m alive, Mom and Dad, love you both so much.”

I thought of you, @colleensteele, when she ordered the seafood special at the delicious Italian place. It was a huge plate with all the seafood and pasta. She couldn’t finish it!