I am really sick but no doctor can figure it out
▲ 433 r/GirlDinnerDiaries+3 crossposts

I am really sick but no doctor can figure it out

I’m a 30 y/o female. So at the end of March I had an episode where I felt faint and went to the hospital. They took my blood, and my white blood cell count was mildly high (15). From there, I followed up with my primary care who said eh prob a virus and reran my blood. Still high. CRP is also mildly elevated in case anyone knows what that is. They both go up and down but never normal. He then sent me off on my way to specialists. I’ve seen gastro, cardiology, hematology (3x), neurology, rheumatology and probably some other ology I can’t think of right now. I don’t feel good ever. Like not even an hour in the day. If I had a moment of feeling ok this would all be so much easier to handle. I have extreme fatigue, headaches, leg pain and sometimes low grade fevers upon waking. I also lost weight during this period, like a good amount - to which my primary care dr said “eat a burger”. He thought it was anxiety for the first 3 months. It wasn’t til recently that he changed his tune.

Ive had scans , bloodwork and anything you can name done by all these specialists. I have been through so much and it has been so stressful. My bf and I were SO close to getting engaged before this it hurts so bad. We also bought a new house during the time I was sick (i wanted to wait til I had my health figured out, but he convinced me it would be a good decision). So now I have a beautiful house that I still have boxes everywhere and cannot enjoy because I always am worrying and always feel like shit. I used to be a fun and energetic person and now I can’t do like anything. I can’t play pickleball or go to the gym like I used to.

On my bf, I also feel like my illness is ruining our relationship. We used to do sooo much fun stuff. Like weekend trips to wherever the hell we want. Travel, being active. We did sooo much. And now I’m too sick to do anything. I can go out to dinner or something like that but I’m not even having fun bc I feel awful. He is under so much stress with work and now he has a sick gf. Not even just a sick gf, one that has not been diagnosed and is going from specialist to specialist. It would probably be easier to support me if I had a diagnosis. There’s a special sense of hell of knowing something is wrong but not knowing what. Every specialist just says “not my area”. Someone is fucking wrong.

I worry about having cancer every day. I was tested for blood cancers but only the common ones I believe. I’ve had scans and no masses but what if they’re missing it. I worry about death. I worry that I’ll never feel good again. I do not want to die, in fact I want to live more than anything. I want my life back. I was so happy. But sometimes I think it would be easier to die instead of going through being a medical mystery. I miss myself so much. It’s been a bit over 6 months since I have felt normal. So long that I am grieving my life before this hell.

Another stressor is work. I really didn’t want to tell my boss, but I had to. I cried. I’m on intermittent fmla that only covers 1 day per week, and I only have 18 paid sick days left. My mom was hit by a car in April and I went on fmla for 2 weeks for her. That was at the beginning of this illness, and I didn’t feel good the whole time I was taking care of her. Thank God she is better now. But I am not. And now I have barely any fmla time. I am at work right now and I feel awful. I work in education and I was praying I would figure this out and feel better by fall because it is so busy and demanding. I do work a desk job bc though. If I had a physical job there’s no way I could show up. But every day is so fucking hard. I gag in the morning from anxiety. I wake up hot and feel sick but have to fucking go to work. I need the insurance. I have a mortgage now.

Anyway, this fucking sucks. If I make it out of this I will never take anything for granted again. When you are healthy you don’t realize the small things you take for granted. I really want to be healthy again. I want to be me again. I want to cook, clean, do activities.

Meal is depressing lean cuisine that I’m eating at work while feeling like shit. Thank you for reading. If you pray, any prayers would be appreciated. If you don’t, just good positive vibes would be appreciated.

Edit: I did not expect this to reach so many people. For those asking my wbc has been from 11-17 bouncing up and down. My crp the lowest was 5 highest 13.9 most recent 8. My platelets also are on the higher end going up and down from 300s-485.

I have had my vitamins checked. Ferretin was 14 but I brought it up to 70 with supplements. The hematoligst still prescribed iron infusions so I will get them done. She doesn’t think my symptoms match just low iron tho. And I don’t know why I’m iron deficient I have light periods and had a colonoscopy upper endoscopy so it’s not a stomach thing. Vitamin d was low but not too low 25 and I started to take supplements it went up to 47.

I’ve had an mri of abdomen and pelvis a brain mri and an mra of abdomen and all were ok the only findings were nonspecific.

I was tested for all tickborne diseases and had an extensive infectious workup.

I have no idea what is going to happen to me and I feel so hopeless and like giving up. but I just want to thank every single one of you that offered any type of suggestion or any reply at all. You have all made me feel less alone.!

u/Existing_Page_7101 — 10 days ago
▲ 1 r/Anemic

Am I iron deficienct? (No anemia)

Iron Bind.Cap. (TIBC)
505

UIBC
450

Iron, Serum
55

Iron Saturation
11%

Ferretin 70

Hemoglobin 13
I’m confused about these results. I also have elevated wbc and neutrophils up and down from 11.3-16.9. Most recently 11.8 for 5 months and feel like I’m dying. (Extreme fatigue, leg pain, headaches, severe decline in function). My crp is also 8.6.

reddit.com
u/Existing_Page_7101 — 1 month ago
▲ 83 r/haematology+1 crossposts

5 months of severe symptoms and undiagnosed. I can’t take it anymore.

I’m a 30 year old female 140 lbs 5’3. I lost 20 lbs during this illness. I had it all. Amazing bf that was about to propose, new house, great job. I feel like I’m going to lose everything. I have been ill since the end of March with no answers. I have awful symptoms: severe fatigue, headaches, severe leg soreness/achiness, I wake up hot, temp is often in the 99s. I feel so sick every single day. I have abnormalities in my bloodwork. My white blood cell count has been fluctuating up and down this whole time but it’s always high. Lowest was 11 highest was my most recent bloodwork last week at 16.9. My platelets are also on the higher side up and down from 300s-495. Most recent was like 380. My ferretin is 30.

I’ve been to every specialist you can name and they tell me it’s not their area. rheumatology, infectious disease, hematology, 4 different primary care doctors, neurology. I’ve had extensive bloodwork and scans and the only findings are nonspecific (crp, wbc). Scans had some nonspecific findings. My crp is mildly elevated at 8, esr normal.

I’m from NJ and my bf even flew us out to MN to go to Mayo Clinic. I only had 2 appointments, one with hematology and one with general medicine and nothing was figured out. Hematology again said it’s not their area but I don’t know if I believe them because my blood is consistently abnormal and all other areas were cleared. I do have a follow up online visit with the general medicine Mayo doctor Tuesday but I don’t know if he’ll be able to help me.

I am really struggling to keep working my full time job and I honestly may need to go on leave. I am not strong enough for this. I’m so exhausted and scared. Has anyone went through anything similar? I want to live so badly, but I can’t take this illness and the uncertainty anymore. I’m having awful thoughts. It’s hard for me to not fall into the “what did I do to deserve this?” rabbit hole.

If you have any suggestions about what may be going on with me please let me know

reddit.com
u/Existing_Page_7101 — 1 month ago
▲ 1 r/MPN

Elevated wbc and platlets for 4 months. Terrible symptoms. Doctors have given up

My symptoms are debilitating and ruining my life. I’ve posted on here before but I’m desperate for any more opinions because no doctor seems to be able to help me. I’m a 30 year old female experiencing debilitating fatigue, headaches and leg soreness/pain. Every day I wake up with a headache and leg pain and it doesn’t go away. Over the counter meds do not help. There’s not a moment that I feel good/normal.

Before the end of March I was a happy healthy person and pretty active. I have lost about 20 lbs since then and can’t go to the gym or do any activities I used to enjoy due to how crappy I feel. I am about to have to go on leave from work and I’m devastated. I was supposed to be getting engaged/married/having kids and everything has been on stand still. I have the perfect job, partner, new home and I can’t enjoy any of it and feel my life slipping away to a mystery illness.

I’ve been to every specialist you can name. Ive seen 2 hematologist. One of them offered me iron infusions even though my ferretin is 51 and iron saturation 20% and said go to rheumatology. One of them literally threw his hands up and said I don’t know. He said we could do a bone marrow biopsy if I wanted (who would want this😭) but he doesn’t think anything would come up. He recommended seeing a University hematologist so I called one that’s like an hour away and they couldn’t get me in til OCTOBER.

I have been blood tested for leukemia and lymphoma and other blood disorders (for example jak 2 calr mpn bcrabl were done and neg). I’ve gotten imaging done (ultrasound of abdomen, mri of abdomen and pelvis). Spleen is normal. I’ve gotten extensive rheumatology (anca, ana, rf etc) and infectious disease (all the tick borne diseases, hepatitis, hiv etc) bloodwork done and all negative. I’ve been to neurology who said it’s not neurological. The only things that consistently come up on my blood are elevated WBC (11-15 up and down). Most recently 12.4. And elevated platelets 300s-495. Most recently they were the highest they’ve ever been at 495.

In case it is helpful, my CRP was 13.9 in March, then 11 in July and most recently 5.5. I was happy this went down but I don’t understand why my wbc is not normalizing and I still feel awful. My ESR has remained normal this whole time at 5.

I also had an upper endoscopy and colonoscopy to rule out GI stuff. All good there.

I am so lost. I’ve been through so much in these past four months. Every day sucks. I want my life back so badly. I am so scared. I want to grow old with my partner. Any insight is appreciated

reddit.com
u/Existing_Page_7101 — 2 months ago
▲ 4 r/AskMedical+1 crossposts

Has anyone had elevated wbc for 4+ months? Platelets also high. Very symptomatic

My symptoms are debilitating and ruining my life. I’ve posted on here before but I’m desperate for any more opinions because no doctor seems to be able to help me. I’m a 30 year old female experiencing debilitating fatigue, headaches and leg soreness/pain. Every day I wake up with a headache and leg pain and it doesn’t go away. Over the counter meds do not help. There’s not a moment that I feel good/normal.

Before the end of March I was a happy healthy person and pretty active. I have lost about 20 lbs since then and can’t go to the gym or do any activities I used to enjoy due to how crappy I feel. I am about to have to go on leave from work and I’m devastated. I was supposed to be getting engaged/married/having kids and everything has been on stand still. I have the perfect job, partner, new home and I can’t enjoy any of it and feel my life slipping away to a mystery illness.

I’ve been to every specialist you can name. Ive seen 2 hematologist. One of them offered me iron infusions even though my ferretin is 51 and iron saturation 20% and said go to rheumatology. One of them literally threw his hands up and said I don’t know. He said we could do a bone marrow biopsy if I wanted (who would want this😭) but he doesn’t think anything would come up. He recommended seeing a University hematologist so I called one that’s like an hour away and they couldn’t get me in til OCTOBER.

I have been blood tested for leukemia and lymphoma and other blood disorders (for example jak 2 calr mpn bcrabl were done and neg). I’ve gotten imaging done (ultrasound of abdomen, mri of abdomen and pelvis). Spleen is normal. I’ve gotten extensive rheumatology (anca, ana, rf etc) and infectious disease (all the tick borne diseases, hepatitis, hiv etc) bloodwork done and all negative. I’ve been to neurology who said it’s not neurological. The only things that consistently come up on my blood are elevated WBC (11-15 up and down). Most recently 12.4. And elevated platelets 300s-495. Most recently they were the highest they’ve ever been at 495.

In case it is helpful, my CRP was 13.9 in March, then 11 in July and most recently 5.5. I was happy this went down but I don’t understand why my wbc is not normalizing and I still feel awful. My ESR has remained normal this whole time at 5.

I also had an upper endoscopy and colonoscopy to rule out GI stuff. All good there.

I am so lost. I’ve been through so much in these past four months. Every day sucks. I want my life back so badly. I am so scared. I want to grow old with my partner. Any insight is appreciated.

reddit.com
u/Existing_Page_7101 — 2 months ago
▲ 10 r/AskMedical+5 crossposts

I’ve seen every specialist you can think of and no one knows what’s wrong

My life is being ruined by an unidentified illness.

I’m sorry this is long, but I’m genuinely at a loss and hoping someone can help me understand what direction makes sense next.

I’m 30F, 5’3”, currently around 132 lbs. I was approximately 149 lbs in late March and closer to 155 earlier this year, so I unintentionally lost roughly 17–20 lbs over a few months. My weight seems to have stabilized recently.

This started with episodes of feeling faint/off in January, February and March. On March 24, I nearly passed out at work and went to the ER. Since then, I have not felt normal.
My main symptoms now are:
● Constant soreness/deep aching in both legs. Sometimes there are crawling, prickling or pinching sensations. There is no redness or swelling, and the pain does not change with activity, rest, position or squeezing the muscles.
● Daily headaches, usually around 5–6/10, switched sides
● Severe fatigue and lethargy. I feel floaty/detached and generally uncomfortable in my own body.
● Waking up hot most nights, but not drenched. My temperature often runs around 99–99.6, although I know that is not technically a fever.
● Approximately 17–20 lbs of unintentional weight loss.
● Increased eye floaters, although my eye exam was normal.

This has drastically affected my ability to function. Before this I exercised, played pickleball, cooked and had a normal life. Now I am exhausted and physically uncomfortable every day. I do have anxiety and take Lexapro, but these symptoms are constant regardless of my anxiety level and there are persistent abnormalities in my bloodwork.
CBC/inflammation trend:

My WBC has remained elevated since March, mostly due to mature neutrophilia:
● 3/24: WBC 15.0, platelets 408
● 4/7: WBC 12.1, platelets 396
● 5/4: WBC 13.7, platelets 357
● 5/14: WBC 11.3, platelets 417
● 5/27: WBC 14.6, platelets 399
● 6/25: WBC 14.1, platelets 444
● 7/3: WBC 14.3, platelets 447
● 7/13: WBC 13.7, platelets 456
● 7/23: WBC 13.3
● 7/29: WBC 14.3
● 8/4: WBC 12.4, ANC 8,581, platelets 495

My hemoglobin and MCV have stayed normal. CRP was 13.9 mg/L, then 11, then 9, and most recently 5.5. ESR has remained low at around 5–6.
My ferritin was initially 14 with a high TIBC and low iron saturation, but after oral iron it increased to 30 and then 51. I was never anemic, and correcting the iron has not improved how I feel. B12 was borderline at 259 but later increased to around 350; methylmalonic acid was normal. Vitamin D was 25.

Specialists and testing so far:
I have been followed by my PCP/internal medicine and have seen two hematologists/hematologist-oncologists. Both felt the leukocytosis was probably reactive or inflammatory.

Hematology testing has included:

● Normal peripheral blood flow cytometry with no increased blasts
● Negative BCR-ABL1 FISH
● Negative JAK2 V617F, CALR and MPL testing
● Normal LDH and beta-2 microglobulin
● Normal SPEP/IFE, serum free-light-chain ratio and immunoglobulins
● No enlarged spleen or lymph nodes on imaging

Saw gastroenterology and had an upper endoscopy on July 16. The duodenum was normal. Biopsies showed mild chronic inactive stomach inflammation, fundic gland polyps and mild reflux esophagitis. H. pylori was negative. Celiac testing, fecal calprotectin and stool infectious PCR testing were negative. I have a colonoscopy scheduled but am unsure whether the GI findings actually explain the systemic symptoms or blood counts.

I saw infectious disease. Blood cultures and testing for Lyme, TB and multiple tick/vector-borne infections were negative. EBV antibodies were consistent with an old infection, not an active one.
I saw neurology. My neurological exam was normal, and the neurologist did not think this was primarily neurological. Magnesium and riboflavin were suggested for the headaches. I have not had a brain MRI yet.

I saw rheumatology. ANA, RF, CCP, dsDNA, SSA/SSB, Sm, RNP, Scl-70, centromere antibodies and ANCA were negative. CK was normal, complements were not low, and hepatitis B/C testing was negative. Aldolase was one of the only remaining pending tests. Rheumatology prescribed a six-day Medrol pack as a trial for the leg pain, but I have not started it because steroids have made me feel mentally very strange in the past.
I also had a normal eye examination.
ER visits/imaging:
On March 24, a CT of my abdomen was read as normal but was limited by motion. Chest X-ray was normal. ECG showed sinus tachycardia/nonspecific ST-T changes.
An echocardiogram in April showed an EF of 55–60% with borderline global longitudinal strain of -17.2%.
A June abdominal ultrasound showed a 16.1 cm liver with a “beaver-tail” left-lobe variant wrapping around the spleen. The spleen measured 11.6 cm and was not enlarged.
On July 29, I went back to the ER because of the leg pain, headaches and overall illness. My neurological exam was normal and a bilateral leg venous ultrasound was negative for DVT. CT scans of my head, chest, abdomen and pelvis were offered, but I did not have them done at that visit.
I had an abdominal/pelvic MRI with and without contrast on August 3. It showed a normal liver and spleen, no masses, enlarged lymph nodes, obstruction or pelvic inflammatory process. However, it also mentioned a small amount of fluid in the hepatorenal space with presumed reactive enhancement along the liver capsule. The report called this nonspecific but said underlying bowel/peritoneal pathology was suspected and mentioned duodenal ulcer disease as a possible explanation. This confused me because my upper endoscopy shortly before the MRI showed a normal duodenum. There was also a small 0.7 cm uterine fibroid.
Current medications are Lexapro 20 mg, an oral contraceptive, oral iron, famotidine, Zyrtec/Flonase and lorazepam occasionally for sleep. I briefly tried gabapentin 100 mg for the leg sensations, but it caused significant daytime drowsiness without clear benefit.

My biggest question is: What could connect the constant bilateral leg pain, headaches, fatigue, weight loss, persistent neutrophilia, mildly elevated CRP and rising platelets?
Does this still sound most likely to be reactive even after more than four months? Would a bone marrow biopsy or additional hematology testing be reasonable, or does the MRI finding make GI/peritoneal evaluation more important? Is there another specialty or type of doctor who should be coordinating this?
I’m not expecting Reddit to diagnose me. I just desperately need a logical next step because every specialist seems to rule out their area and send me somewhere else

reddit.com
u/Existing_Page_7101 — 2 months ago
▲ 7 r/AskTheDocs+2 crossposts

4 months of abnormal bloodwork and no answers

30F—4 months of unexplained symptoms and abnormal CBC. What should be investigated next?
Since March, I’ve had constant headaches, deep soreness throughout both legs, severe fatigue, prickling sensations, poor sleep, reduced appetite/nausea, and waking hot/sweaty or sometimes cold. My temperature is often in the 99s.

I’ve lost about 20 lb, although my weight has recently stabilized.

For four months, my WBC has stayed around 11–15, mainly neutrophils (latest 14.3), and platelets have ranged from 357–468. CRP has been mildly elevated at 9–14, but ESR, hemoglobin, CMP, thyroid, LDH, and MMA are normal. Ferritin improved from 14 to 51 with iron.

Blood smear showed no blasts. Flow cytometry, BCR-ABL, JAK2/CALR/MPL, ANA, RF, Lyme/tick-borne testing, TB testing, celiac testing, and other infectious-disease testing were negative. CT abdominal ultrasound was unrevealing with no enlarged spleen. Endoscopy only showed mild reflux/inactive gastritis.

I’m seeing neurology and rheumatology and having an abdominal/pelvic MRI and colonoscopy. What possibilities or next steps would you ask doctors about?

This has been HELL :( every day is a struggle. My main symptoms are the achy legs, headaches and fatigue. I am constantly uncomfortable in my own body.

reddit.com
u/Existing_Page_7101 — 2 months ago
▲ 2 r/Anemic

Do I still need iron infusions?

Symptoms: headaches, sore legs, fatigue

In May my ferretin was 14. I took supplements and it went to 30 in early July. It’s now 51. Other results below:

Iron Bind. Cap. (TIBC)
Normal range: 250 - 450 ug/dL

490

UIBC
Normal range: 131 - 425 ug/dL
391

Iron, Serum
Normal range: 27 - 159 ug/dL
99

Iron Saturation
Normal range: 15 - 55 %
20%

Ferretin
51

B12
358

The hematologist prescribed 3 venefor injections. Would I benefit from that. Also , is my b12 low enough to cause symptoms?

Thank you

reddit.com
u/Existing_Page_7101 — 3 months ago
▲ 2 r/irondeficiency+1 crossposts

Do I still need iron infusions?

Symptoms: headaches, sore legs, fatigue

In May my ferretin was 14. I took supplements and it went to 30 in early July. It’s now 51. Other results below:

Iron Bind. Cap. (TIBC)
Normal range: 250 - 450 ug/dL

490

UIBC
Normal range: 131 - 425 ug/dL
391

Iron, Serum
Normal range: 27 - 159 ug/dL
99

Iron Saturation
Normal range: 15 - 55 %
20%

Ferretin
51

B12
358

The hematologist prescribed 3 venefor injections. Would I benefit from that. Also , is my b12 low enough to cause symptoms?

Thank you

reddit.com
u/Existing_Page_7101 — 3 months ago

Mystery Illness Ruining My Life- Mildy elevated wbc 3 mo

**30F — sick for 3 months, persistent high WBC. Please help :(**

I’ve felt unwell for about **3 months**.

Main symptoms:
Daily fatigue
Low appetite and weight loss - 160 last year this time, 149 when this illness started, 133 now
Waking up hot/sweaty, sometimes with low-grade temps
Headaches
Weird sore/restless feeling in my legs- this might be the worst symptom. I am so restless that I can barely function. I can’t even focus on watching TV. I just want to crawl out of my body it is sooo awful

My bloodwork has repeatedly shown:
**WBC ranging from 11.3–15.0- fluctuating up and down**
Mostly high **neutrophils, but in most recent monocytes were 987**
Platelets sometimes mildly high/high-normal, most recently 444
Hemoglobin normal
**CRP 13.9**
ESR normal
**Ferritin 14**

I saw hematology:
Flow cytometry normal
No leukemia/lymphoma seen on flow
LDH normal
Beta-2 microglobulin normal
SPEP/IFE normal
Free light chains normal
Genetic/molecular tests were negative:
**BCR-ABL1 FISH negative**
**JAK2 V617F negative**
**CALR negative**
**MPL negative**
Other testing:
ANA negative
Rheumatoid factor negative
Thyroid normal
Celiac negative
Abdominal ultrasound: no enlarged spleen or lymph nodes
Fecal calprotectin normal
GI pathogen PCR negative

GI wants to do an upper endoscopy bc they don’t know why my ferretin is so low or why I’m losing weight

I’m wondering what else can cause **persistent neutrophilic leukocytosis + elevated CRP + systemic symptoms. Living like this has been miserable :(**

reddit.com
u/Existing_Page_7101 — 3 months ago
▲ 13 r/BloodworkHackers+3 crossposts

Mystery Illness Ruining My Life- mildly elevated wbc 3 mo

30F — sick for 3 months, persistent high WBC. Please help :(

I’ve felt unwell for about 3 months.

Main symptoms:
Daily fatigue
Low appetite and weight loss - 160 last year this time, 149 when this illness started, 133 now
Waking up hot/sweaty, sometimes with low-grade temps
Headaches
Weird sore/restless feeling in my legs- this might be the worst symptom. I am so restless that I can barely function. I can’t even focus on watching TV. I just want to crawl out of my body it is sooo awful

My bloodwork has repeatedly shown:
WBC ranging from 11.3–15.0- fluctuating up and down
Mostly high neutrophils, but in most recent monocytes were 987
Platelets sometimes mildly high/high-normal, most recently 444
Hemoglobin normal
CRP 13.9
ESR normal
Ferritin 14

I saw hematology:
Flow cytometry normal
No leukemia/lymphoma seen on flow
LDH normal
Beta-2 microglobulin normal
SPEP/IFE normal
Free light chains normal
Genetic/molecular tests were negative:
BCR-ABL1 FISH negative
JAK2 V617F negative
CALR negative
MPL negative
Other testing:
ANA negative
Rheumatoid factor negative
Thyroid normal
Celiac negative
Abdominal ultrasound: no enlarged spleen or lymph nodes
Fecal calprotectin normal
GI pathogen PCR negative

GI wants to do an upper endoscopy bc they don’t know why my ferretin is so low or why I’m losing weight

I’m wondering what else can cause persistent neutrophilic leukocytosis + elevated CRP + systemic symptoms. Living like this has been miserable :(

reddit.com
u/Existing_Page_7101 — 3 months ago
▲ 4 r/Anemic

Low ferretin and leg symptoms?

Has anyone had sore feeling and/or shaky legs with low ferretin? I’ve read that it can be linked with RLS but my leg feeling doesn’t get better with movement or stretches. My ferretin is 14 iron is 92 and hemoglobin is 12.3.

I’m taking Thorne research iron pill once a day it’s only 36 mg. I imagine this will take a while to work. I was offered infusions but I’m too scared of the side effects. It was called injectafor.

More questions: do u know what your low ferretin is caused by?

Thanks.

reddit.com
u/Existing_Page_7101 — 4 months ago
▲ 2 r/Anemic

Injectafer? Should I not do it?

My ferretin is 14. Iron ok. Very symptomatic. Unsure of cause :( I have light-normal periods and haven’t eaten red meat in 3 years I’m not sure if that’s enough to explain. They’re having me go to GI

But anyway, injectafer infusions were prescribed for me. I am scared of side effects and it not working. I have some allergies to antibiotics so idk if I would react to this or if it’s totally seperate.

Please share experiences with injecatfer or just infusions in general.

Also, has anyone experience legs feeling weird/sore at all times and or weight loss with low ferretin?

Thank you. This sucks

reddit.com
u/Existing_Page_7101 — 4 months ago

Fluctuating wbc, low ferritin . What is going on:(

30F, 5’3”, currently ~131–133 lb. Previously around 155–160 lb. Duration: about 3 months.
Current meds: Lexapro/escitalopram 20 mg daily, lorazepam 0.5 mg PRN mostly at night (trying not to take this), oral iron supplement daily with B12 and vitamin C, birth control pill, allergy meds as needed. Gabapentin was recently prescribed for restless legs/sleep but I’m nervous about taking it.

I’m posting because I’ve had 3 months of feeling unwell with weight loss, abnormal labs, GI symptoms, and severe leg symptoms. I have seen PCP and hematology and have GI coming up, but I’m still trying to understand what direction makes the most sense.

Timeline / doctor visits
In late March 2026, I had a near-syncope/lightheaded episode at work and went to the ER. Around that time my WBC was 15.0. CT abdomen and chest X-ray were normal. Since then I’ve had persistent symptoms and repeated abnormal CBCs.
In April, I was still feeling lightheaded/unwell. My Lexapro was increased from 5 mg to 10 mg around early April.
In early May, my Lexapro was increased to 20 mg. Ativan/lorazepam PRN was also added later in May, mainly for sleep/anxiety.
On 05/27 I saw hematology because of persistent leukocytosis/neutrophilia and weight loss. They did a broad blood workup. Hematology later told me the “scary blood stuff” seemed ruled out and thought it looked reactive/inflammatory. They offered iron infusions because my ferritin was low.

On 06/17 I saw PCP again. PCP recommended GI evaluation/upper endoscopy due to weight loss and symptoms. PCP prescribed gabapentin for restless legs/sleep and said rheumatology would be considered if GI workup is negative.

I have a GI appointment coming up because of weight loss, appetite loss, morning gagging, stool changes, LUQ discomfort here and there and low ferritin.

Main symptoms
My main symptoms since late March:
Unintentional weight loss from about 155–160 in January lb to 131–133 lb
Reduced appetite- some days better than others but I am by no means starving myself
Morning gagging/dry heaving - I think this is anxiety
Fatigue, weakness, shakiness, “virusy” feeling
Waking up hot/feverish sometimes, not drenching night sweats
Headaches/head heaviness/scalp tenderness
Intermittent LUQ/left rib/upper abdominal discomfort, sometimes with burping
Stool changes: sometimes yellow/orange/loose stools, mucus/specks/undigested food, floating/greasy-looking pieces at times, constipation at other times
Severe leg symptoms, currently the worst symptom
The leg symptoms are what I most need help understanding. My legs feel heavy/sore/weird, sometimes hot, and I have an urge to move them especially at rest/night. But movement/walking does not really relieve it. It is more like I constantly feel my legs and can’t get comfortable. I’m wondering if this is true restless legs from low ferritin, SSRI-related akathisia/restlessness from Lexapro 20 mg, neuropathy/B12-related, or something else.

Weight timeline
Approximate weights:
Baseline in 2025/early 2026: 155–160 lb
03/25: 149 lb
04/14: 141 lb
05/02: 140 lb
05/20: 138 lb
06/05: 136 lb
Mid/late June: 131–133 lb
I stopped drinking alcohol in late March and my appetite has been much lower, but I have not intentionally been trying to lose weight.

CBC trend
Repeated CBCs have shown mild/moderate leukocytosis, mostly neutrophils:
03/24 ER: WBC 15.0, platelets 408
04/07: WBC 12.1, ANC 8,434, platelets 396
05/04: WBC 13.7, ANC 11,056, platelets 357
05/14: WBC 11.3, ANC ~8,180, platelets 417
05/27: WBC 14.6, ANC 11,607, platelets 399, monocytes 860
Hemoglobin 12.5, Hct 37.9, MCV 87
I am not anemic based on hemoglobin/MCV, but my ferritin is low.

Other labs
Ferritin: 14 ng/mL
Iron: 93 µg/dL
B12: 259 pg/mL
Folate: 18.7
CRP: 13.9 mg/L
ESR: 6 mm/hr
CMP: normal, including kidney/liver/electrolytes/protein/albumin
TSH/free T4: normal
Celiac testing: negative
ANA: negative
RF: negative
Fecal calprotectin: negative/normal
LDH: normal
Beta-2 microglobulin: normal
SPEP/IFE: normal
Free light chains: normal

Hematology testing
Hematology workup was reassuring/negative:
Peripheral blood flow cytometry normal
BCR-ABL1 FISH negative
JAK2 V617F/CALR/MPL negative
No enlarged spleen on ultrasound
LDH normal
Beta-2 microglobulin normal
SPEP/IFE and light chains normal
Hematology impression was that blood cancer/MPN type causes were unlikely and that the leukocytosis looked reactive/inflammatory.

Imaging / cardiac testing
CT abdomen in March: normal but did say “limited findings due to movement”
Chest X-ray: normal
Abdominal ultrasound 06/03: basically normal
Spleen not enlarged. Gallbladder/bile duct/pancreas/kidneys/aorta/IVC normal. Liver had a likely anatomic variant involving the left hepatic lobe.
Echocardiogram: EF 55–60%, no major structural abnormalities
Zio monitor: sinus tachycardia episodes only
Eye exam with dilation/photos reportedly normal

What I’m trying to figure out
My biggest concerns are the weight loss, wbc and the leg symptoms.

Questions:
Can ferritin 14 with normal hemoglobin cause severe restless legs or RLS-like symptoms?
Since movement does not relieve the urge/restlessness, does this sound more like akathisia than classic RLS?
Could Lexapro 20 mg be causing or worsening leg restlessness/akathisia, especially since the dose was increased during this illness?
Could borderline B12 contribute to leg sensations/neuropathy even without anemia?
What GI causes should be checked for low ferritin + weight loss + appetite loss/morning gagging/stool changes? H. pylori, gastritis, ulcer, malabsorption, IBD despite negative fecal calprotectin?
Does persistent neutrophilic leukocytosis with CRP 13.9 but ESR 6 fit a reactive/inflammatory picture?
What should I ask GI/PCP/neurology/psychiatry to check next?

I’m so scared :( and I want my life back . I was a happy and energetic person before all of this

reddit.com
u/Existing_Page_7101 — 4 months ago
▲ 4 r/haematology+2 crossposts

30F: low ferritin 14, WBC 11–15, CRP 13.9, weight loss, leg symptoms

30F, 5’3”, currently ~131–133 lb. Previously around 155–160 lb. Duration: about 3 months.
Current meds: Lexapro/escitalopram 20 mg daily, lorazepam 0.5 mg PRN mostly at night (trying not to take this), oral iron supplement daily with B12 and vitamin C, birth control pill, allergy meds as needed. Gabapentin was recently prescribed for restless legs/sleep but I’m nervous about taking it.

I’m posting because I’ve had 3 months of feeling unwell with weight loss, abnormal labs, GI symptoms, and severe leg symptoms. I have seen PCP and hematology and have GI coming up, but I’m still trying to understand what direction makes the most sense.

Timeline / doctor visits
In late March 2026, I had a near-syncope/lightheaded episode at work and went to the ER. Around that time my WBC was 15.0. CT abdomen and chest X-ray were normal. Since then I’ve had persistent symptoms and repeated abnormal CBCs.
In April, I was still feeling lightheaded/unwell. My Lexapro was increased from 5 mg to 10 mg around early April.
In early May, my Lexapro was increased to 20 mg. Ativan/lorazepam PRN was also added later in May, mainly for sleep/anxiety.
On 05/27 I saw hematology because of persistent leukocytosis/neutrophilia and weight loss. They did a broad blood workup. Hematology later told me the “scary blood stuff” seemed ruled out and thought it looked reactive/inflammatory. They offered iron infusions because my ferritin was low.

On 06/17 I saw PCP again. PCP recommended GI evaluation/upper endoscopy due to weight loss and symptoms. PCP prescribed gabapentin for restless legs/sleep and said rheumatology would be considered if GI workup is negative.

I have a GI appointment coming up because of weight loss, appetite loss, morning gagging, stool changes, LUQ discomfort here and there and low ferritin.

Main symptoms
My main symptoms since late March:
Unintentional weight loss from about 155–160 in January lb to 131–133 lb
Reduced appetite- some days better than others but I am by no means starving myself
Morning gagging/dry heaving - I think this is anxiety
Fatigue, weakness, shakiness, “virusy” feeling
Waking up hot/feverish sometimes, not drenching night sweats
Headaches/head heaviness/scalp tenderness
Intermittent LUQ/left rib/upper abdominal discomfort, sometimes with burping
Stool changes: sometimes yellow/orange/loose stools, mucus/specks/undigested food, floating/greasy-looking pieces at times, constipation at other times
Severe leg symptoms, currently the worst symptom
The leg symptoms are what I most need help understanding. My legs feel heavy/sore/weird, sometimes hot, and I have an urge to move them especially at rest/night. But movement/walking does not really relieve it. It is more like I constantly feel my legs and can’t get comfortable. I’m wondering if this is true restless legs from low ferritin, SSRI-related akathisia/restlessness from Lexapro 20 mg, neuropathy/B12-related, or something else.

Weight timeline
Approximate weights:
Baseline in 2025/early 2026: 155–160 lb
03/25: 149 lb
04/14: 141 lb
05/02: 140 lb
05/20: 138 lb
06/05: 136 lb
Mid/late June: 131–133 lb
I stopped drinking alcohol in late March and my appetite has been much lower, but I have not intentionally been trying to lose weight.

CBC trend
Repeated CBCs have shown mild/moderate leukocytosis, mostly neutrophils:
03/24 ER: WBC 15.0, platelets 408
04/07: WBC 12.1, ANC 8,434, platelets 396
05/04: WBC 13.7, ANC 11,056, platelets 357
05/14: WBC 11.3, ANC ~8,180, platelets 417
05/27: WBC 14.6, ANC 11,607, platelets 399, monocytes 860
Hemoglobin 12.5, Hct 37.9, MCV 87
I am not anemic based on hemoglobin/MCV, but my ferritin is low.

Other labs
Ferritin: 14 ng/mL
Iron: 93 µg/dL
B12: 259 pg/mL
Folate: 18.7
CRP: 13.9 mg/L
ESR: 6 mm/hr
CMP: normal, including kidney/liver/electrolytes/protein/albumin
TSH/free T4: normal
Celiac testing: negative
ANA: negative
RF: negative
Fecal calprotectin: negative/normal
LDH: normal
Beta-2 microglobulin: normal
SPEP/IFE: normal
Free light chains: normal

Hematology testing
Hematology workup was reassuring/negative:
Peripheral blood flow cytometry normal
BCR-ABL1 FISH negative
JAK2 V617F/CALR/MPL negative
No enlarged spleen on ultrasound
LDH normal
Beta-2 microglobulin normal
SPEP/IFE and light chains normal
Hematology impression was that blood cancer/MPN type causes were unlikely and that the leukocytosis looked reactive/inflammatory.

Imaging / cardiac testing
CT abdomen in March: normal but did say “limited findings due to movement”
Chest X-ray: normal
Abdominal ultrasound 06/03: basically normal
Spleen not enlarged. Gallbladder/bile duct/pancreas/kidneys/aorta/IVC normal. Liver had a likely anatomic variant involving the left hepatic lobe.
Echocardiogram: EF 55–60%, no major structural abnormalities
Zio monitor: sinus tachycardia episodes only
Eye exam with dilation/photos reportedly normal

What I’m trying to figure out
My biggest concerns are the weight loss, wbc and the leg symptoms.

Questions:
Can ferritin 14 with normal hemoglobin cause severe restless legs or RLS-like symptoms?
Since movement does not relieve the urge/restlessness, does this sound more like akathisia than classic RLS?
Could Lexapro 20 mg be causing or worsening leg restlessness/akathisia, especially since the dose was increased during this illness?
Could borderline B12 contribute to leg sensations/neuropathy even without anemia?
What GI causes should be checked for low ferritin + weight loss + appetite loss/morning gagging/stool changes? H. pylori, gastritis, ulcer, malabsorption, IBD despite negative fecal calprotectin?
Does persistent neutrophilic leukocytosis with CRP 13.9 but ESR 6 fit a reactive/inflammatory picture?
What should I ask GI/PCP/neurology/psychiatry to check next?

I’m so scared :( and I want my life back . I was a happy and energetic person before all of this

reddit.com
u/Existing_Page_7101 — 4 months ago