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I seem to have a dark cloud following me which I am trying, at the very least, to maintain a sense of humor about......
I had a visit with my PCP for my routine exam since I was overdue. A small lump was found in my breast and now I need a mammogram and ultrasound. sigh. I just had the ultrasound for the suspicious node in my neck. The official report for my endo on that one is the FNA biopsy was non-diagnostic and the thyroglobulin in the needle washing was undectectable. It is thought the image on the ultrasound is possibly a surgical clip. Another ultrasound scheduled in three months to monitor. The surgeon did not indicate the use of clips for my thyroidectomy so it is simply unknown.
I pointed out my continued fatigue- the 1- 1 1/2 hour daily naps and the severe hair loss. I know my thyroid meds is out of my PCPs arena but I don't know how else to respond to the "How are things going?" question. Not fine at all. My PCP did oblige my request for testing my ferritin levels which came back at 13 (normal 8-252). I did start taking an iron supplement but so far haven't noticed anything but an upset stomach, even when taken with food. My PCP said I am anemic and referred me to a hematologist to investigate the cause. I know nothing about anemia but after answering a few questions she said she has no explanation as to why I am anemic. I don't have heavy periods so it's not due to blood loss and my blood cells have remained constant in size. I'm doing a poor job explaining it but she looked at my blood count history and said if were related to an iron deficiency there would be a decline in my numbers and there is not. I had a difficult time concentrating on what she was saying because I got hung up on the "what next" feeling for potential cancers.
I couldn't determine if she was suspect of something more serious or just felt bad that she had no answers for my continued complaints. I commented that I started a new job in which the physical requirements are demanding and it just plain stinks to struggle so much. In addition to the quality of life issues and strain on my family since I am spending most of my free time sleeping- which leaves little time for them. My drowsiness isn't simply being sleepy- it's an almost drunk feeling like I am so tired I'm going to pass out if I don't go take a nap. I can push through the day because there is no choice but it catches up with me when I get home. Hopefully I will get some good answers next Friday and not have some new boogie-man of a disease. Then again, if I follow suit with my past labs I will show that everything is A-OK fine.
Another odd issue is muscle pains in my legs and a major flare in my hands/wrists. They are sore and feel stiff and swollen but there is no visible inflammation. I use a magnesium oil spray as my deoderant and spray it on the bottoms of my feet at night.
Anyone with any understanding of what my PCP may be thinking would be appreciated. I flat out asked her if she had anything in mind that caused her to write the referral but she said it was simply because she could not give me a reason why I have it and it would be good to have checked out. I respect her dearly since she does care and seems upset that she cannot do more to resolve my complaints. She made a comment that showed she had an open mind even if she is confined by the current medical community. She told me it was in her medical books from the 1980's that women who complained of severe menstrual cramping were unaccepting of their femininity. She explained it can take time for opinions to change and hopefully sometime soon down the line there will be new information available that will help me. She gets it and from her shoes- she must be as frustrated as me.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
My guess would be that your PCP recognizes that low ferritin probably has a lot to do with why you are always tired, and she wants to be as helpful as possible, but she really doesn't know why it's low, so that's why she wrote the referral.
Sometimes things just are what they are. My red cell count is always below range, but my doctor isn't concerned. So I try to ignore it.
I hope your tests begin to provide more definitive results, and they'll be the results that you want to see, of course.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I did a little more searching on the subject and one reason can be absorbtion issues due to celiac, etc. that explanation would make sense to me. I was thinking there might be something new. It would be great if that was the reason I am dragging non-stop. There are quite a few symptoms on the list that are also on the thyroid list. Trying to figure out which belongs where is the challenge. I am feeling a bit more optimistic now.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hey Deb,
I'm sorry to hear of the troubles you are having. I seem to sound a lot like you so I'm chiming in. My hair has been falling out for the past 3 years and no one can tell me why. My braid is so thin I'm now jealous of just one of Willie Nelson's braid. Thyroid numbers and anti bodies always normal. I have many symptoms of both hyper and hypo thyroid.(More hyper, i'm thin, pounding heart, insomnia, hair loss, fatigue, cold extremities, low body temp). I too came down with extreme fatigue and found my ferritin to be at 9. All other numbers were normal and the doctor didn't seem concerned (which tends to make me more concerned) and told me to take iron. I don't have heavy periods either. Cycle has changed since MC. Lighter and closer together. I started taking a supplement called Blood Builder by Mega Foods. I havn't had any stomach upset with it. It is free of MC ickies and is made out of actual food instead of muffler shavings. I take it with supper and seem to do better at night with it. My ferritin recently tested at 35. It took about a month of taking it for the extreme fatigue to subside. That being said my hair is still falling out ( always coincides with ovulation and periods ), and I too found a lump in my breast which they just removed and found to be benign thank god. I still am very fatigued some days and have swollen hands and wrists. What is going on? I don't eat anything packaged so I don't think I'm secretly getting glutened? I'm wondering if I need an endoscopy to check for H.Pylori. I have symptoms of gastritis when I eat meat and stomach burning at night. I'm just ignoring it for now. Too many things at once! I work 12 hour days at a busy hospital and it is all I can do to get through some days. Not everyday....just some. Anyway hope this helps and I'm thinking about you sister!
Brandy and others here gave me some good iron info. Your iron is way too low too. I REALLY dislike the words "normal range." My PCP at least recognizes that being on the borderline of not normal warrants some attention. It's sad that I had to bring it up first after reading suggestions here, but that just seems to be the way it goes. I'm thankful for everyone here because I'd be clueless.
Sorry to hear about your troubles, I can relate. The hair loss goes way beyond vanity.
I see the hematologist on Friday so it will be interesting to see what his interpretation on my situation is. I had a bottle of 65 mg iron equivalent to 325 mg of ferrous sulfate in the cupboard. I now remember why I stopped taking it before- the nausea is bad, even if I take it with a meal. I went through years of daily non-stop nausea before I found this site and learned dairy, eggs, and soy were the culprit. It is one feeling that makes me miserable.
I hope I will find some useful answers to share!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hey Deb,
I think it was Chris Kresser who said a good ferritin number for females is around 40. You definitely don't want it in the 200 range as that can get dangerous in my opinion. But do share anything you have learned about iron or thyroid. Both seem to be complex. And I'm a slow learner.....
Hey Deb,
I just found an awesome podcast from Chris Kresser, it's on the web under RHR: testing for SIBO, Graves disease, and all about anemia. He goes into great detail about anemian and talks about LDN in the Graves disease section. Awesome info and anemia is very complex and poorly taught in the medical community....of course.
I will have to look that podcast up and do some learning.
I don't think I said I was aiming for the 200's but if I did, that's not what I meant. The lab results show the normal range ending in the mid 200 range. There were warnings about self treating for iron deficiency which I totally understand. I would at least like to see how I feel in the 40 range if not a bit higher.
I learned today that there are a number of bleeders on my dad's side of the family and a history of breast cancer on my mother's side. All good info to know.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb wrote:I learned today that there are a number of bleeders on my dad's side of the family
FWIW, I'm a member of that club, but as far as I'm aware (at least in my family) the serious bleeding is reserved for male offspring.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hmmm, my Dad and three uncles were noted with the problem. My Dad also has clotting issues and experienced clots in his lungs, a kidney, and has a permanent clot in his leg that they won't attempt to remove. How you can be both is sure an oddity.
The self pity train has been making frequent stops by my house and I've been reminding myself that I'm not the only person to go through multiple issues. Not that I take comfort in other people's struggles but it puts things in perspective.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I had major issues with iron deficiency and anemia when I was first diagnosed with MC. It took several months for my numbers to even budge. The body takes several weeks to make red blood cells using new iron. Your body (generally) won't start storing iron until the anemia has resolved.
I think your doctor referred you to the hematologist because she honestly has no idea as to what could be causing the anemia. Apparently anemia among women is very common, but it usually follows a specific pattern. If you don't follow that pattern, things get confusing. For example, iron deficiency can make red blood cells smaller, but b12/folate deficiency can make them larger, so someone with both can have a very large distribution of cell size, with a normal average. When I was referred I sort of freaked out and called a cousin who is also a PCP. She said she will often refer patients to a hematologist when their bloodwork is "wonky". It's almost always nothing major, but you really do need to know the cause of the anemia so you can start an appropriate treatment plan.
One warning about the hematologist. Usually a hematologist treats blood cancers so be prepared to see the word "oncology" all over the place. Not what you're there for so ignore ignore ignore.
New topic, but have you been tested for H Pylori? I ask because this infection caused my anemia. Really anything that damages the duodenum can lead to anemia. I would bet this has something to do with absorption.
If I were you I would not take ferrous sulfate. A pharmacist should be able to point you towards alternative iron supplements that don't cause nausea. I think I already mentioned this in your other thread, but at first the only supplement that worked for me was Proferrin. I realize it's 10x the cost of ferrous sulfate, but worth it to avoid the nausea and pain.
I try to keep my ferritin around 60. My hair stopped falling out around 30 level, but I didn't notice regrowth until 60. I've heard conflicting opinions on what a "good" level would be.
I think it is great you are getting referred to the hematologist! Low ferritin and anemia is heavily linked to IBD's inflammatory bowel disease and also to celiac disease. I agree with the others I would not be unduly alarmed.
These articles are pretty scholarly (except for the livestrong one) but I just wanted to show the heavy linkage between IBD's and low ferritin/anemia.
I can't say I really understand them.
When you talk with the hematologist I would put that you have an inflammatory bowel disease on your intake form. Mention how long you've had MC.
Toss in the terms inflammatory bowel disease in your conversations. (I don't think a lot of medical professionals have heard of MC or get that it is an inflammatory bowel disease.) Don't forget to mention the relentless fatigue.
I forgot to mention that I felt dramatically better when my ferritin number hit 40. I felt almost normal in terms of energy. I stopped supplementing when my score it 40--not due to medical advice....just on my own.
So sorry for your continued troubles, Deb. I have nothing to add to the suggestions you've received regarding your anemia. Have you had a test for Rheumatoid factor or antinuclear antibodies? I would suggest these for elimination purposes. You mention painful joints and rheumatoid arthritis is often accompanied by anemia.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
Then again, if I follow suit with my past labs I will show that everything is A-OK fine. 
She explained it can take time for opinions to change and hopefully sometime soon down the line there will be new information available that will help me. She gets it and from her shoes- she must be as frustrated as me.
), and I too found a lump in my breast which they just removed and found to be benign thank god. I still am very fatigued some days and have swollen hands and wrists. What is going on? I don't eat anything packaged so I don't think I'm secretly getting glutened? I'm wondering if I need an endoscopy to check for H.Pylori. I have symptoms of gastritis when I eat meat and stomach burning at night. I'm just ignoring it for now. Too many things at once! I work 12 hour days at a busy hospital and it is all I can do to get through some days. Not everyday....just some. Anyway hope this helps and I'm thinking about you sister! 
