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Persistent Low White Blood Cell Count and Hypothyroidism - any link?

MacG profile image
MacG
54 Replies

Diagnosed as hypothyroid in Jan 2013. Have just got some blood tests back and very disappointed to see that my white blood cell count has once again dipped - 2.9 (4.0-11.0). My Neutrophil count is 1.3 (2.0-7.5). I have also over the last several months been treated for anaemia, but that picture has very much improved of late (HB 139 range: 116-156, RBC 4.63 range 3.9-5.1), so surprised that WBC is low. Have been seeing a haematologist, but they only deal with my anaemia/white blood cell count, always backs off when I mention my hypothyroidism. Haematologist did point out that my anaemia/white blood cells seemed to work in tandem, dropping together, but on this occasion, doesn't seem to be the case.

Is there a link between compromised immune system and hypothyroidism? Can anyone suggest any reading?? or is it simply a case of the hypothyroidism makes me "run down"

For reference recently asked for a print-out after an appointment that shows that my WBC count has been "abnormal"/"critical" since 2000 over a total of 29 blood tests.

Any thoughts/observations would be most welcome.

Postscript: Do know that my Ferritin is low - as of May it was 24, expect it to have improved in the meantime as I have been continuing to take 2 x Ferrous Sulphate with Vit C every day.

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MacG
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54 Replies

I read somewhere that low white blood count can be associated with Lyme Disease? Maybe someone with more knowledge can jump in here and help me out...

MacG profile image
MacG in reply to

Thanks for getting back to me hampster1. Did you see the post by rosetrees 3 days ago on this very subject? I haven't been tested for Lyme Disease, but am due to see my GP in a couple of weeks and am wondering about asking for a test. I do go walking often and despite being really careful have managed to pick up a couple of ticks over the years. Removed them with seemingly no after-effects (eg: nasty rash or whatever), but there is something that is knocking my immune-system etc. etc...."out of kilter" and we just seem to be drawing a blank and I am beginning to wonder if it could possibly be this.

in reply to MacG

Beware of the Lyme tests in this country. Look at Natalia's response the other day regarding the Western Blot test. Lyme tests in this country are notoriously inaccurate.

healthunlocked.com/!/#thyro...

Lyme disease has certainly become one of my daughter's problems (again it was only discovered in the USA, not here) but we think this was because of her already compromised immune system.

Jane x

MacG profile image
MacG in reply to

Thanks for that. I have just had a look at Natalia's response and see what you mean.

merissa profile image
merissa in reply to

Hi Jane, I was bit by a tick had the rash but western blot was not conclusive, I continued to spiral down hill, muscles bones thyroid kidney to name few, I swear it was the bite. What would you suggest in terms of blood test and could you tell me where to obtain these please. Xx

tegz profile image
tegz in reply to MacG

Bulls Eye rash isn't always present. I've had a round weal after a bug bite that didn't heal for weeks -until Antibiotics did it.

I couldn't get a Lyme test -though I had it added to list,

Get one for certain -if you can get your Dr convinced.

Otherwise, consider going private for one.

Private cost to me £70 + consult fee- doing it Weds.

PS: Is it possible to post a pic on here?

MacG profile image
MacG in reply to tegz

Thank you for this tegz. Would be interested to hear what the outcome is.

My daughter's white blood count was consistently low for YEARS - in fact since she was a baby and had Roseola (she is now 33). No doctor was able to explain why this was the case. All they could say was "Oh she must be fighting an infection", but she clearly didn't have an overt infection like the flu, a cold, sore throat etc. To cut a long story short we finally discovered that she has had a seriously compromised immune system because of Roseola which is caused by the HHV6 virus and she still has it hiding in her system. It was only discovered after we went to the USA and she had special tests which search for chronic viruses, and yes, this was the root cause of her hypothyroidism and other problems and infections that she has since acquired.

I recommend that you read these posts and look at the further information I've made in them to see if they are relevant for you. We were amazed when we finally found the cause of my daughter's problems after so much time:

healthunlocked.com/!/#thyro...

healthunlocked.com/!/#thyro...

healthunlocked.com/!/#thyro...

Jane x

MacG profile image
MacG in reply to

Thank you so much for this Jane. I haven't even heard of Roseoia. Will definitely look into it.

Jomomma profile image
Jomomma in reply to

What kind if doc diagnosed these for ur daughter. I'm looking for direction for myself. I don't which kind of doc to see.

Jomomma profile image
Jomomma in reply to

What kind if doc diagnosed these for ur daughter. I'm looking for direction for myself. I don't which kind of doc to see.

Kiscomom profile image
Kiscomom in reply to

Hi, Can you tell me what test they used to find the HHV6 virus and or what sort of doctor you took her to? My 15 year old daughter has thrombocytopenia now (56,000), she has high antithyroglobulin (8) , white blood cell count on the lower side, also relatively low ferritin which seems to be decreasing. Her TSH is low side of normal .55, Free T3 normal 3.4, Free T4 normal 1.1 Reverse T3 is not back yet and she tested negative for Lyme. She used to have canker sores all the time and then she got the HPV vac last October and they disappeared....but all this happened too. That's what makes me think HHV might be lurking somewhere in her body and causing all this.

MacG profile image
MacG in reply to Kiscomom

Hi Kiscomom, Your query is showing in my mail box and I think it was "Hidden Administrator" who signs herself off as "Jane" above that you really wanted to speak to. I think if you click the reply button at the bottom of her post then I think she will be alerted. Please any administrators out there, correct me if I'm wrong. I hope you get sorted Kiscomom.

helvella profile image
helvellaAdministratorThyroid UK in reply to MacG

"Hidden" means no longer a member.

There is no-one to send a notification of a reply to!

janeb15 profile image
janeb15 in reply to Kiscomom

Hello, We went to see a doctor in the USA as we'd tried doctors in the UK and Europe for many years because of what we thought was just a thyroid/adrenal problem. However, he tested her for HHV6, Lyme Disease, Mycotoxins and various other things. These three tests were positive and he started treatment. It was the inflammation caused by these infections that had caused her thyroid dysfunction. Jane x

sandi profile image
sandi

Hi

I also have low white blood cell count, which dates from my hypot diagnosis BUT it could have been there before, or coincide with becoming hypo or even be the result of taking levo. I don't which since I had no prior blood tests to act as a control.

In my case it was monitored for a few years then, when there was no improvement, I had the dreaded bone marrow aspiration. The conclusion was that it is autoimmune neutropenia. The docs said not surprising since also am hypot - except that my hypot never diagnosed as autoimmune!

Most important is to ensure it is monitored.

A friend just had a bone marrow aspiration and he is hoping when they know the cause they can treat his fatigue - in my experience if it's autoimmune they won't treat as they don't believe it causes fatigue on its own. Personally not convinced.

Hope this helps

MacG profile image
MacG in reply to sandi

Thanks for your response Sandi. Although I have the information that shows that my white blood cell count has been "abnormal"/"critical" since 2000 and, as I said above, my hypothyroidism was only diagnosed in January of this year, I think I have had a long period of time where my hypothyroidism has been undiagnosed - could even stretch that far back......so who knows....

My haematologist has written back to my GP saying I have neutropenia, but does not specify any other detail.

I know that my hypothyroidism is a result of an autoimmune response.

I have recently changed GP and my new GP seems right on it monitoring-wise.....initial indications are that she wants to get to the bottom of this, which is a huge relief......my old GP just wasn't taking it all on board, so consequently had been struggling for years.

sandi profile image
sandi in reply to MacG

Think I was lucky that the haemo kept me monitored and although my levels weren't dropping further decided after a couple of years of the level being low to do the bone marrow aspiration. At least this confirmed it was autoimmune not a problem with white cell production.

This was at least a direct route to the answer saving lots of trial and error from GP! Of course there is nothing they can do about it because it's autoimmune.

High dose vit c is supposed to help and my levels have gone up slightly using that.

sarahstevenson profile image
sarahstevenson

This is an interesting thread. My Mum Hypo and T4 only treatment had persistent low white blood cell count and was told by her last GP that this showed she had "fibromyalgia rheumatica" and therefore prescribed her steroids - result enormous weight gain and little relief. She also had a complete medical encyclopedia of other signs and symptoms and was a very poorly lady.

I have autoimmune hypo and low WBC on some test results - due more tests in a couple of weeks.

Thanks for posting MacG

sandi profile image
sandi in reply to sarahstevenson

The scary thing about this seems to me to be that what you are diagnosed with or what tests you have or don't have appears to be more to do with which doctor you have - unless of course your Mum had other symptoms that led directly to that diagnosis.

sarahstevenson profile image
sarahstevenson

This is an interesting thread. My Mum Hypo and T4 only treatment had persistent low white blood cell count and was told by her last GP that this showed she had "fibromyalgia rheumatica" and therefore prescribed her steroids - result enormous weight gain and little relief. She also had a complete medical encyclopedia of other signs and symptoms and was a very poorly lady.

I have autoimmune hypo and low WBC on some test results - due more tests in a couple of weeks.

Thanks for posting MacG

MacG profile image
MacG in reply to sarahstevenson

Thank you for getting in touch Sarah. Would be very interested to see how things progress for you.

nobodysdriving profile image
nobodysdriving

Low white blood cell count is also connected with vitamin B12 deficiency

in reply to nobodysdriving

Really? That'll explain mine then ;-) I always put it down to being on Carbimazole.

nobodysdriving profile image
nobodysdriving in reply to

yes, I learnt this from this video: youtube.com/watch?v=BvEizyp...

in reply to nobodysdriving

Yes I've watched this before, very depressing case studies. I obviously glossed over the science bit at the time! So much to still learn.

in reply to

Meant to say thanks for the link. x

MacG profile image
MacG in reply to nobodysdriving

Many thanks for this and for the link below. It is interesting that you mention this. We have a family history of Vit B12 deficiency (pernicious anaemia?) have just been tested and awaiting results.

in reply to MacG

What test have you had done?

MacG profile image
MacG in reply to

Not sure. GP just said we will test your B12. Are there different tests??

in reply to MacG

The doc's probably done serum B12. This is a measure of all the B12 circulating in your blood. The problem with it is a large percentage of that is in an inactive form which your body can do nothing with. It also doesn't tell you anything about what's happening at tissue level. Also, the range is set extremely low so misses a lot of people that are deficient. So I guess what I'm saying is if you are in the low normal range, say between 200 and 500, you could still have a problem. Wait and see, and post your result when you get it. There are better tests - Active B12, MMA, homocysteine - that give a better picture of what's going on, but no gold standard test. And you have to pay for them. For autoimmune B12 deficiency (pernicious anaemia) they can do antibody tests for anti-parietal cells and anti-intrinsic factor.

MacG profile image
MacG in reply to

Thanks so much for this hamster 1. Knowledge is power!!

jes99 profile image
jes99

Hi MacG. I have had autoimmune Graves disease (hyperthyroidism) for 2 years and have been on carbimazole all that time. I have also got a very low white blood cell count 0.6 so am seeing a haematologist who is monitoring my blood count. Basically he said my neutropenia is also autoimmune, my body is destroying my white blood cells. i am told that once you have one autoimmune disease you are open to getting more :( The problem for me is the carbimazole has a side effect of destroying white blood cells so I now inject myself every week with G-CSF which boosts your count. This is non steroid, so no weight gain, and is working very well. My endo is trying to get me to have RAI but I am refusing so not sure how much longer they will allow me to have the drugs. The good news is I feel great with very little side effects from either auto disease. long may it last :)

MacG profile image
MacG in reply to jes99

Thank you for your response jes99. I am interested to hear that you are receiving treatment that is non steroid. What is RAI? Good to hear that your medication is working for you.

Che65 profile image
Che65

Hi. Just found this site. I Google Lwc count and Hashimotos. Mine is 1.8 with a consistent TSH less l than .01 for last four or more years. My daily life involves gut wrenching pain. Sick of being sick doesn't begin to e plain how I feel. That was last year's quote. Seen endocrinologists and countless doctors, the reporting of which is same as each and every blog on this page. nana died of toxic thyroid and dad is dying of amongst other ailments). I am now just seeing a naturopath. Does anyone have any answers

Pianoshan profile image
Pianoshan in reply to Che65

I've been told to go gluten free because of my hashimotos thyroid disease by my naturopath and M.D who also studies functional medicine.

Has anyone checked you for celiac disease or gluten intolerance to see if that's what's causing your pain? If a Celiac test came back negative, you may still be gluten intolerant. To see for yourself, go off of gluten for a few weeks and see if you notice an improvement in your pain/symptoms. Sometimes people don't notice the difference until they reintroduce the gluten back into their diet after being off of it for at least 3-6 weeks. My symptoms showed immediately and consisted of foggy brain, headaches, jittery etc.

The functional health M.D has recommended I read the book called " The Autoimmune Fix" by Tom O'Bryan, DC, CCN, DACBN

This is a fantastic book that is helping me to find the answers to so many of the questions I have about "WHY" my body is attacking its own thyroid. This book also covers the other autoimmune disorders as well.

I now have a better understanding of why my doctors told me to go off of gluten when I was diagnosed with hashimotos thyroid. Good luck!!

L_RN profile image
L_RN

I would be interested in an update to this post. I've been hypothyroid since 2002, diagnosed with Hashimoto's about 3 years ago.

I'm an RN in the US and am feeling very frustrated that I've recently discovered that I've been leukopenic/neutropenic for at least a year and none of the 3 different doctors who did blood work on me bothered to either notice or notify me of the abnormal WBC/neutrophil count. I was neutropenic (WBC 2.3 (4.1-10.9), neutrophil 0.73 (2.0-7.8) when I saw a rheumatologist at Mayo for chronic pain, and he said NOTHING to me. If I was a patient on my floor at my hospital the staff would be wearing masks to protect me from them! To make matters worse, he flat-out asked me if I thought my pain could be in my head. Being in the medical field does not mean that my issues are automatically psychosomatic. Ugh.

The good thing to come out of that doctor's visit was that I was able to identify that I had been chronically leuko or neutropenic for at least the past year. I had told my husband I felt like I was immunocompromised for a long time now and I finally feel like I'm not crazy.

So, if anyone has any opinions, experiences, or advice, please chime in.

For the past year:

WBC has run between 2.3 to 2.9 (4.1-10.9)

Neutrophil, between 0.73 to 1.2 (2.0-7.8)

RBC 4.32 (4.2-6.3)

Platelets 289 (140-440)

Hemoglobin 12.9 (12.0-18.0)

Hematocrit 41 (37-51)

Ferritin is low, at 29 (50-150)

ALT 63 (7-45)

TSH 2.5 (0.4-4.0), T3, T4 also normal.

All other CBC and CMP values are within normal limits.

I've recently gone to a hematologist, who is going to do a bone marrow biopsy next week, although he tells me it is optional and he isn't very worried about cancer. He thinks my low WBC count is related to my Hashimoto's, but I haven't found much evidence online about a correlation with chronic low levels.

I've tested negative for Lupus, Rheumatoid Arthritis, pregnancy, HIV (typical culprits of low WBC). He confirmed that none of my meds cause low WBC.

I've been having episodes of dizziness, cold sores, itching without rash, getting hot or sweating while sleeping, fatigue, chronic muscle and joint pain, and of course feeling like I'm constantly on the verge of getting sick.

I'd love to hear an update on this post since it was 4 years ago and you must have some answers by now! 🤞

MacG profile image
MacG in reply to L_RN

Hi L_RN,

Have just picked up your post. I'm out and about today, but will respond tomorrow when I have a bit more time. Sorry to hear that you are struggling with neutropenia. A compromised immune system is miserable isn't it. The news is good, my immune system MUCH better-have thoughts/opinions about that which I am happy to share.

MacG profile image
MacG in reply to MacG

Hi L_RN,

Like you I frequently (nearly all of the time) felt like I was going down with something, I felt washed out/achey - what I described as low-grade flu like symptoms. I was really careful about who I came into contact with (avoided people with colds) even got to the point where I avoided crowded places etc. but still seemed to go down with frequent colds/infections etc.

I was seeing a haematologist but was discharged as my ferritin (after iron supplementation) was consistently much better and my white blood cell count also improved. Occasionally my WBC has dipped a bit again since then but even though that is the case my immune system feels MUCH improved. Now I rarely have those awful symptoms I described above. I work with young people in crowded places and believe me they don't pay much attention to their behaviour when they have colds etc. but I seem to be breezing through. It's great! So what has changed for me?

Notably, I NEVER received any specific treatment for the low white blood cell count, but despite that fact things seem to have sorted themselves out. I have experimented with various things en route. Difficult to say what has helped, maybe it is one thing....maybe a combination, but here are my thoughts/experiences:

1) Get your ferritin sorted. To really get my iron count up I was supplementing with iron: two tablets daily most days and at the same time as I took an iron tablet I took 1000mg Vit C (to really help the iron get into my system). I no longer feel the need to supplement with iron as my periods stopped, but I still keep an eye on my iron levels (supplementing only to keep my ferritin optimal if I need to) but I still take at least 1000mcg good quality vit C daily.

2) September 2014 I gave up gluten. I follow a strict gluten-free diet. I did do a bit of research and came across something called autoimmune neutropenia. I never knew whether that was what was causing my problems, but I have Hashimoto's and I have said to my GP that autoimmune problems are "messy" and tend to spill out and affect various aspects of our health and she agreed. So I have tried to have a healthier gut. (I really want to take this further forward. I am coming across as lot of stuff about gut health/inflammation.....even the link with depression/mood.) Also on that subject, when my immune system was rubbish I was prescribed antibiotics for chest infections/water infections etc. I tried to avoid antibiotics if I could, but sometimes just couldn't manage without. Bad news! A nutritionist recommended some probiotic powders to at least put some good bacteria back into my system when I had taken a course of antibiotics. I don't need antibiotics these days. I am thinking of getting into kefir for consumption on a regular basis.

3) Have paid much closer attention to my general hormonal health. Like you I was really struggling with night sweats. You don't say how old you are in your post, but I wonder what your hormone levels are like? I now use bio-identical hormone cream which has really sorted out the night sweats. I had my levels of various hormones checked and got the cream through a private practitioner. The cream is made up specifically for me/my levels and, for example, also contains some DHEA. I know that at one stage my DHEA was low. I feel like I have brought several hormones more into balance and haven't just focussed on my thyroid. Although the initial cost of tests/consult were quite expensive follow-ups are affordable and the cream comes out at about £1 a day. Well worth it, I feel for the benefits.

4) I also supplement daily with folic acid, magnesium, B vitamins, 5000iu vitamin D3. Also some tryptophan/5HTP to help with sleep/mood balance. Sleep, although never a perfect science, is improved and this clearly helps with immune system.

5) The addition of 10mcg T3 daily to my T4. I went from 125mcg daily of T4 to 75mcg T4 and 10mcg T3 daily. I also did this in September 2014 and have stayed on this dose ever since. Notice that I have put T3 last on the list. I had the DIO2 test which showed I have the genetic polymorphism from both parents. I do think the T3 has helped, in that my body is no longer struggling to function without the correct thyroid hormones (my T3 was either below range/borderline prior to that little boost of 10mcg daily). But, I don't think that T3 is always the single answer. I do believe that it has been a combination of

1) Diet and supplements

2) Sleep and hormones

3) Ensuring that your thyroid is optimally treated

I hope you find some food for thought here. Please don't hesitate to get back to me if you want further information. It has turned into a bit of an essay......but I am very happy to try and help as I feel so fortunate to have got on top of that problem.

L_RN profile image
L_RN in reply to MacG

Thanks for responding. You’ve gone through quite a bit and I will need to do some researching, as we don’t commonly do some of the supplements you mentioned here in the US. I’m working today and tomorrow but will respond soon. Thanks again.

L_RN profile image
L_RN in reply to MacG

I work on an orthopedic (post-surgical) floor so I’m lucky that we rarely keep sick patients for me to be exposed to. But if someone has a cough I definitely mask up.

I’ve read a bit about autoimmune neutropenia and it mostly occurs in infants/toddlers and also resolves after 2 years. The blood tests I’ve had done were between November 2016-Nov 2017, which showed WBC between 2.3-2.9. The only other CBC I had done was in 2014 and my WBC was 3.4 so I know I’ve been at least mildly leukopenic for 3 years. And Hashimoto’s usually isn’t the cause of it. Typically, RA or Lupus are the culprits in adult autoimmune neutropenia. But I’m going to talk to my doctor about Sjogrens, since I have several of the symptoms and it can cause AIN.

I started taking Slow Fe and Vit. C but haven’t started feeling better yet. In fact, I’ve actually been feeling worse and am having shortness of breath.

I’ve been told by many friends that eliminating gluten will help with my GI troubles and my chronic pain. It’s just such a huge change for me to undertake. I hate cooking and meal planning and I’m a carboholic. I know I’m going to have to make dietary changes if I want to start feeling better. I also can’t take oral antibiotics. After one day my stomach gets torn apart and I can’t continue them, which of course is unsafe to not finish them.

I’ll be 39 soon and all my hormone levels are normal so I really don’t think that’s the source of my night sweats.

All my thyroid labs are in the middle of normal ranges so I’m hesitant to add thyroid supplements. But I’ll talk to my endocrinologist about my symptoms. I haven’t seen him in about a year because my thyroid labs come back normal each time.

MacG profile image
MacG in reply to L_RN

Hi L_RN,

Good to hear back from you. The route I am taking and plan on really pushing further forward is clean diet. There are two doctors in the UK that practice what you could describe as "sustainable medicine" and both concentrate on the power of a really good diet, which I am sure helps gut health and hence autoimmunity. The first is Sarah Myhill - she treats patients that other doctors have given up on and has written a few books. She has just brought out a book called the "PK Cookbook: Go Paleo-ketogenic and get the best of both worlds". You can see Youtube clips of Doctor Myhill talking about the Paleo diet etc. which will give you a feel for things.

The other doctor is called Rangan Chatterjee. He is about to bring out a book called "The Four Pillar Plan: How to Relax, Eat, Move and Sleep Your Way to a Longer, Healthier Life" (available end of December).

Don't know whether you will find any food for thought here.....

L_RN profile image
L_RN in reply to MacG

I guess I’ll be doing a lot of reading over the holidays. Lol

I will follow up here after the results of the bone marrow biopsy, which should be around Dec. 14, and after I’ve been on the iron and vitamin C a bit longer. Maybe by then I will have started to test a gluten free diet.

Thanks for your time.

MacG profile image
MacG in reply to L_RN

No problem, I'll certainly report back if I come across anything interesting in the meantime.

L_RN profile image
L_RN in reply to MacG

I had my bone marrow biopsy yesterday. Was shocked that it didn't hurt as much as YouTube commenters said it would, especially since I am a wimp when it comes to pain.

My WBC yesterday was up to 3.0 but my neutrophil count was 0.9 so I'm back to being neutropenic again. I have been feeling rather "blah." I had the doctor add on blood tests for Sjogrens and Celiac, just to rule them out. My diagnosis may come down to that of exclusion. 😕

MacG profile image
MacG in reply to L_RN

Hi L_RN,

Glad to hear that the biopsy wasn't as bad as you thought. At least it has given you a clearer picture about what is what.

Here's something I read just yesterday that I thought was interesting, a recommendation from Sarah Myhill who I mentioned above:

"....take vitamin C to bowel tolerance last thing at night; the idea here is that vitamin C kills all bacteria, yeasts and, indeed, viruses. It is poorly absorbed which, for this purpose, is ideal. The idea is take enough vitamin C to kill the millions of (potentially bad) microbes in the upper gut, but not enough to kill the billions and trillions of (good) microbes in the lower gut. Start with 2 grams at night, increase until there is slight diarrhoea, then reduce a little - that is what I mean by "to bowel tolerance".

I thought, why not switch taking my Vit C like this at night to help with the whole immune system/gut bacteria issues.

L_RN profile image
L_RN in reply to MacG

Per usual with hypothyroidism, I've had chronic constipation for years. My GP put me on omeprazole for my stomach because I took too many NSAIDS for the chronic pain I was having. But the omeprazole cured my constipation (small daily doses of magnesium in it). Within the past week I'd been having diarrhea. I thought it was related to the iron the hematologist put me on but now I think I'm struggling with a virus due to my neutropenia. So I'm going to hold off on intentionally inducing more diarrhea. Lol But I have been avoiding gluten for the past couple of days and my stomach feels better so far. It's very difficult to cut out of my diet because I'm such a carboholic. And it affects how I cook for my family too. I'm just going to stick with limiting gluten and avoiding sick people until my BMB results come in.

L_RN profile image
L_RN in reply to L_RN

I apparently didn’t come back and update with my BMB results, which happened to be negative for anything that would kill me in the nearby future (leukemia, etc). I got my first cold in the past 20+ years, over the winter. Other than that and getting cold sores more often than normal people, I’ve been in relatively good health. Had been having shortness of breath so I started on a new inhaler.

I had my follow up labs done this week and got my results today. WBC is 2.5 and Neutrophil count is 0.4 (2.0-7.8)! Under 0.5 is consisdered severe neutropenia. My doctor had his receptionist call me and said we’ll continue to monitor my levels and recheck in 3 months. Last time, he told me we’d do treatment if I went under 0.5 so I think I’m going to have to get a second opinion. I just don’t understand how I can consistently have such low numbers and not be severely sick. It doesn’t make logical sense.

L_RN profile image
L_RN in reply to MacG

At my last appointment with my hematologist he told me that even though my latest WBC (2.1) and ANC (0.3) were very low he still didn’t want to treat me unless I got sick enough to be hospitalized. Seeing my frustration, he recommended that I get a 2nd opinion from a hematologist at Mayo. So I did and the difference is night and day. My new doctor did a lot of blood work and retested my bone marrow biopsy samples and found that my results were NOT normal, as my first dr had told me. I had reticulin fibrosis in my marrow and my T-cells were slightly low. We’re going to recheck me in 3 months but he wants to redo my BMB around 1 year after the last one (Nov.). He thinks that I’m in the very early stages of developing lupus but it’s not detectable in any of the lupus labs right now. He thinks I’ll develop it within 5-10 years. But in the meantime he’s treating me with neupogen before our trip to London next week. We live in Florida so it would really stink to get sick so far from home.

So I don’t know what my body will develop in the years to come but I know more now than I did with my first doctor and this one’s treating me when my levels are low and going to keep a closer eye on me.

RoobyLoo profile image
RoobyLoo in reply to L_RN

Hi, I’ve been reading this whole thread because I too am experiencing low wbc (2.1 presently) after a very swift drop three months ago, along with weight loss, fatigue, low ferritin. I am 40, female, and very concerned. So much bloodwork has been done and now they are recommending a bone marrow biopsy, but I am having to fight Medicaid for it.

How are you doing now?

L_RN profile image
L_RN in reply to RoobyLoo

Try to not stress too much before you have answers. I know...easier said than done. The BMB will tell you the important stuff. Make sure you get some lortab or Percocet for the pain and something like Ativan (I got 2mg) to keep you relaxed, if you don’t have general anesthesia. I’ve done 2 of them now. They look worse then they are.

I’m 40 y/o and had all the same symptoms as you, except for the weight loss. That could be stress. I’m doing fine, although I’m currently taking neupogen shots every week and they can be painful so that stresses me out.

No abnormalities in your platelets or red blood cells? B12, folate?

RoobyLoo profile image
RoobyLoo in reply to L_RN

B12 and folate seem normal (B12 is 270; folate is 9.5) although some say the B12 is on the low side.

Platelets low; 150. RDW high, indicative of anemia, maybe goes along with my low ferritin. HGB normal at 12.5

I also have mouth ulcers (canker sores), headaches, night sweats...

My thyroid (Hashimotos, had it for 20 years) is pretty normal now on my NatureThroid, optimal labs, been solid for a long time.

Only thing they found on my PET scan four years ago was an enlarged thymus. At our age, thymus should be gone by now. So that’s occurring to me... maybe it’s that, or related.

My lupus tests were borderline positive, but some negative.

I honestly don’t know anymore. Trying not to worry is impossible. I’m a single mother of a five year old and can’t sleep with all this worry.

Thanks for replying so fast. I hope you’re closer to finding answers yourself. It’s a hard place to be, all this uncertainty.

L_RN profile image
L_RN in reply to RoobyLoo

I went through not knowing for about a year so I understand the worry. But my BMB’s were negative for cancer. I make plenty of wbc’s in my marrow so we know my issue is autoimmune. My doctor thinks I’m developing lupus, despite having a borderline positive ANA, with a cell pattern that more likely indicates scleroderma. For those, I’m not going to stress what isn’t happening now. For now, neupogen shots stress me out.

Neutropenia is common for people with autoimmune diseases like lupus and RA, except maybe not as low as mine is on average (WBC 1.9, ANC 0.14). Keep in mind that I’m a nurse in a hospital and I have never gotten sick from one of my patients. If you’re on my path, that’s one peace of mind.

What’s your ANC (absolute neutrophil count)?

HAMADAa profile image
HAMADAa in reply to L_RN

Hi

Thank you very much this is very very helpful

My wife is 40 year old and has hyperthyroidism

She had wbc of 2.1 and ANC of 0.3 to 0.8 for past 3.5 years

All blood work negative

No infections despite the fact she is pediatrician and sees sick kids all the time

Finally we have decided to do bone marrow biopsy as per hematology advise

My question is are you still taking neupogen??

Why was it continued as seems like u never had more than usual infections

What is your Mayo Clinic doctor saying now ?

Plz reply

Thank you !!!!!

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