Tuesday, February 28, 2017

Anemia begone!

Since February is a short month, this will be a short post with a quick but important update on me. As you may recall, in early 2016 I was diagnosed with iron deficiency anemia, which led to a series of tests to rule out internal bleeding as the cause. After having my entire GI tract cleansed, inspected, and photographed from one end to the other and finding no abnormalities, I was referred to a hematologist who had me start taking iron supplements in September. That seemed to turn things around as you can clearly see in the chart below:





I took the iron supplements from the middle of September through the end of December of 2016, which brought my hemoglobin up from 13.3 to 15.3. More importantly, my ferritin level increased over this same time period from 5 to 28. I was curious to see what would happen after I stopped taking the iron supplements, and I received the good news at my annual physical exam on February 24 that my hemoglobin went up to 15.9, which was normal for me before I started donating blood in 2013. The really good news is that my ferritin increased to 41.7 (normal ferritin level is approximately 24 to 336 ng/mL), indicating my body is able to store iron in sufficient quantities again. All the other numbers related to the red blood cells were within the normal range except one, which was barely outside the normal range.

I think it is safe to say the anemia scare is over and appears to have been caused by donating blood more frequently than my body could handle, although the frequency was within the guidelines of the donation center. Lesson learned there. And my kidney function is fine, so I can consider myself asymptomatic for another year. 



=====Monthly Blog Status Update=====

As of January 31, 2017:

Total posts: 174 (1 in January)

Total pageviews: 54,100 (~1300 in January)

Email subscribers: 14 (unchanged)

Total number of countries that have viewed the blog: 133

One new country viewed the blog in January:


Uganda
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Tuesday, January 31, 2017

Happy New Year!!!!!

Welcome to 2017 everyone. In keeping with my tradition, there are five exclamation points in the title since this is my fifth Happy New Year post in the history of this blog.

This post will be a recap of 2016, followed by some musings about where things go from here.

Here is what happened with the blog in 2016:
  • 11 new blog posts were written. (Down from 17 in 2015)
  • 6 articles were reviewed. (Up from 4 in 2015)
  • 24 additional countries visited the blog, bringing the total to 132. (That is more new country visits than occurred in 2015 (7) or 2014 (22).)
  • The blog received only 1 spam comment in 2016, which heaped a great deal of praise upon Dr. Ogun, the great healer, whose amazing herbal remedies cured the commenter of his KINDLY PROBLEM.

In personal news, at my annual physical exam in February of 2016 my doctor informed me that I had iron-deficiency anemia. That led to the following series of tests to check for sources of bleeding in my GI tract:

  • February: Colonoscopy and endoscopy
  • May: Small bowel follow through exam
  • June: Capsule endoscopy #1 (camera did not work)
  • July: Capsule endoscopy #2 (camera did work)

Since no abnormalities were found during any of those tests, I saw a hematologist in September who recommended I start taking iron supplements as a first step to see how my body responded. By late December my hemoglobin and ferritin were back in the normal range, as were the other numbers related to red blood cells, so I stopped taking iron supplements at the end of the year. We will see where those numbers are at my next physical exam in February.

That wraps up 2016. There are a few recent articles I still hope to review in 2017, and there are a few blog-related projects that I hope to make some progress on. And of course the big event in 2017 is the hereditary amyloidosis support group meeting in Chicago the last weekend of October. More information and a link to register for that meeting can be found here: http://amyloidosissupport.org/support_groups/familial.html. Hopefully we can have a large turnout for the Fibrinogen Alliance.


=====Monthly Blog Status Update=====

As of December 31, 2016:

Total posts: 173 (1 in December)

Total pageviews: 52,800 (~1400 in December)

Email subscribers: 14 (unchanged)

Total number of countries that have viewed the blog: 132

No new countries viewed the blog in December.
=====

Saturday, December 31, 2016

Familial or Hereditary?

Hello, loyal blog readers. This final post of the year will have an update on my health and a few other minor things going on in the world of amyloidosis.

First, it looks like I may not have a type of familial amyloidosis after all. I may actually have a type of hereditary amyloidosis instead. "But David, isn't familial the same thing as hereditary?" Generally speaking those two terms are synonymous and often used interchangeably. However, in terms of describing amyloidosis it turns out there is a need to make a distinction between the two.

According to the article Amyloid fibril proteins and amyloidosis: chemical identification and clinical classification: International Society of Amyloidosis 2016 Nomenclature Guidelines (1), in July of 2016, the Nomenclature Committee of the International Society of Amyloidosis met to make recommendations regarding the nomenclature for amyloid fibril proteins and the clinical classification of the amyloidoses. These recommendations are necessary to standardize how to refer to the various types of amyloidosis. For instance, this committee recommended that the term "senile systemic amyloidosis" be replaced with "wild-type ATTR amyloidos" now that the wild-type TTR protein is known to be the cause of that disease.

Regarding "familial" vs. "hereditary" the committee made the following recommendation:

The terms “hereditary amyloidosis” and “familial amyloidosis” refer to different entities. The term “hereditary amyloidosis” should be used when there is a mutation in the fibril protein gene itself, e.g. ATTR, ALys or AFib. The term “familial amyloidosis” should be used when the syndrome occurs in a familial setting due to mutations in genes expressing non-amyloid proteins, e.g. AA amyloidosis.

So if the mutation is in a gene that expresses an amyloid protein, such as fibrinogen, that is considered hereditary amyloidosis. On the other hand, if the mutation is in genes that do not express amyloid proteins, that is considered familial amyloidosis. I do not know enough about what are now considered familial types to go into any more detail on those or discuss how they differ from hereditary types like AFib, so I will just leave it at that and try to use "hereditary" instead of "familial" going forward.


Speaking of familial, I mean hereditary amyloidosis, the next meeting in Chicago has been scheduled for October 28 and 29 of 2017. You can find more information about this meeting and register for it at this link: http://amyloidosissupport.org/support_groups/familial.html. I plan on arriving Friday, October 27, in time for the Friday night meet and greet.

Regarding my health, you may recall from the previous blog post that in October my hemoglobin had increased to 14.3 (within normal range) and my ferritin had increased to 15 (still a little low). I continued taking two iron supplements per day and saw my hematologist, Dr. C, on December 16. My hemoglobin increased to 15.3 and my ferritin increased to 28.1. The normal range for ferritin is 22 to 415, so my ferritin was back in the normal range, as were all the other measurements of things like red blood cell size. So I am going to stop taking the iron supplements on January 1 and see where my numbers are at my annual physical exam in February of 2017.

Next month's post will be the 2016 wrap-up.

=====Monthly Blog Status Update=====
As of November 30, 2016:

Total posts: 172 (1 in October)

Total pageviews: 51,400 (~1300 in November)

Email subscribers: 14 (unchanged)

Total number of countries that have viewed the blog: 132

One new country viewed the blog in November:

Bosnia & Herzegovina
=====


(1) Sipe JD, Benson MD, Buxbaum JN, et al. Amyloid fibril proteins and amyloidosis: chemical identification and clinical classification International Society of Amyloidosis 2016 Nomenclature Guidelines. Amyloid. 2016;23(4):209-213.