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4451049 tn?1387153437

Lethargy with lower body temperature, cognition?

I recently barely finished a very low dose, 6 month course of Isotretinoin- that I got online w/o a script. The fatigue gradually increased throughout the course to the point that stimulants became completely ineffective and I could barely get out of bed. I figured the drowsiness would subside upon discontinuation of the medication. Well it's been a week now and I'm disoriented, freezing cold, completely lethargic, my ears snap, crack, and ring here and there. I feel horrible!! I feel like I've been without sleep for a month, even though I have been sleeping fine. My temperature has always ran low, but I'm not really sure when to be concerned. Any ideas as to what might be going on or what kind of medication I should take? I started taking an iron supplement, even though I'm predisposed to hemochromatosis and I don't feel any better. I'd really appreciate a reply! Thanks!!
9 Responses
Avatar universal
Isotretinoin is a notorious liver stressor, and fatigue and brain fog are typical liver symptoms.  

Choline is the liver's favorite nutrient and phosphatidylcholine or Lecithin is the best way to get large amounts of choline to the liver.  Eggs have more PC/Lecithin than about anything else you'll find (other than lecithin supplements), so upping your egg intake (a couple of eggs 3 times a week)  for a month or so might help.  

SAM-e is also well documented as a liver super-nutrient, but it is expensive.  It is recommended that vitamin B-Complex be taken with SAM-e to prevent high homocysteine, and B-Complex is also helpful to the liver.  

Low doses of any/all of these supplements would be advised if your liver is tired.  More is not better.  

Hope you're feeling better soon!
4173379 tn?1355356551
You're predisposed to hemochromatosis and you're taking an iron supplement hoping to feel better???????

Do you understand what hemochromatosis IS?

How do you know that you are predisposed to HHC? Family history? Diagnosis for yourself?

Let's start there...let me tell you this...if you HAVE HHC and you're taking iron....STOP!

You will kill yourself a lot quicker than the disorder will...

Please get back to me ASAP...my husband was just diagnosed and it was in his family on mother and father's side. He got it from his parents.

I look forward to talking to you soon!
4451049 tn?1387153437
Yes, I totally understand hemochromatosis!! My dad died at the age of 47!! His dad died at the age of 44!! AND, both of my dad's brothers currently have it!! I just had a serum ferritin test, and it seems to be okay. As prominent as it is in the family, I probably need to have the genetic testing done but its somewhat expensive. I wont pay for doctors, I order my own labs online and go to a lab for my own blood draw. When I get the results, I have to put the pieces together. I don't think that it is nearly as common in females anyhow.. While I have some of the basic knowledge of the disease, I'm still sort of shady on how my dad had hemochromatosis as well as iron deficiency anemia, but it is possible and complicated. So just remember that, and so the normal treatment of phlebotomy is not an option if your husband happens to be anemic. Also, Vitamin C increases iron absorption so he needs to watch that. Let me know if you have any questions!  
4451049 tn?1387153437
Thanks!! I was kind of thinking along that route. I've actually been taking Choline. My symptoms also resemble hypothyroidism too, which makes it hard to differentiate.
4173379 tn?1355356551
Hi there, sorry to hear about your Dad. My husband's Dad died from complications of HHC as well, and no one knew at the time that is what it was. But my husband was just diagnosed about 2 and half months ago. Genetic confirmation. His mother is also a carrier. So he got it from both parents.

Ferritin is not the only test you need to have done. You need to have TIBC, transferrin saturation and serum iron.

When you said you are taking iron supplements it led me to believe you didn't understand what HHC is all about. Iron is the LAST thing you want to take. As is Vit C as you mentioned. My husband is not anemic. He had high blood counts. That is not the case for everyone. Due to phlebs he is now slightly anemic,but his counts come back in between phlebs, but this does not reflect the amount of iron he has as storage in his body.

Being anemic does NOT mean you are iron deficient!! Two seperate things. There are many genetic and other conditions where a person is iron loading and anemic at the same time. Treatment for people with anemia and iron loading (like thalassemia or sideroblastic anemia, need to take chelation in order to get iron out as they cannot tolerate blood draws).

A person can not be iron deficient anemic and have hemochromatosis. Likely he had anemia from another source, could have had another condition that is called anemia with iron loading...this is common in people who have anemia to get misdiagnosed as iron deficient anemic because their blood counts are low and so dr prescribes iron supplements, infusions or even blood transfusions, which kills the patient even faster. It is a scary thing that drs are missing this and prescribing the wrong treatments.

My advice is for you to read up on iron deficiency versus anemia, take a close look at your  blood tests, determine why the dr has diagnosed you as anemic...there is a reason a person is anemic, inherited or otherwise, and then get the appropriate treatment.

It is JUST as common in females as males...women usually find out later than men due to having menses every month and so naturally get rid of iron  due to monthly blood loss. Most men are diagnosed in their 40's and 50's and women in their 60's and later, after menopause. But women, as men, can be symptomatic for many years without the dr finding the cause, or misdiagnosing them with other health issues.

The pituitary gland and the thyroid gland are the two most affected adrenal organs affected by iron overload. So having thyroid issues and signs is not uncommon. Many people who have hypothyroidism and or Hashimoto's also have been diagnosed with iron overload.

I have some excellent research and information on HHC and as well as other iron loading disorders, and links to sites where you can read up on how iron is studied in people with anemia and also in people with iron overload, like hemochromatosis.

I would be happy to share with you regarding your tests if you get them and what they mean and also optimal levels of each.

I would love to help you out with this, for by sharing we all learn from each other.

Take care...C

4451049 tn?1387153437
I understand that Ferritin is not the only test I need to have done, however it is an inexpensive starting point. Serum iron was in with a CBC/diff that I had done, but I don't think that it is a very accurate assessment of the disease given I had been supplementing iron. It's been 11 years since I went through this with my dad, and so I was much younger and inattentive at the time. I just remember his anemia being quite severe. His blood counts were extremely low and he even would pass out from time to time. I suppose it could have been from another source. I'm certianly no scientist, but If you thoroughly investigate hepcidin-ferroportin axis and all the cellular components and interactions as well as mutations, you might understand some of the possibilities. My research always goes well beyond the basics, I'm always trying to find the end but it's never ending. It's interesting though.

I wasn't diagnosed as anemic, I had labs done and everything seems within normal range for the most part. I will send you the results. I'm uninsured and finances are tight, so no doctor is involved. I could very well have hemochromatosis, I have a lot of the symptoms and I'm at that age now that I need to find out. All I know is that I didn't think I had a lot of energy before Isotretinoin. After isotretinoin, the fatigue is beyond anything I would have imagined.

Thanks for your help!  
4173379 tn?1355356551
My best wishes for you...I would love to help as much as possible...whatever I can do. You are in the States?

Avatar universal
Panda is right.  I have anemia, but iron is still slightly ABOVE optimal levels.  Good luck to you!
4451049 tn?1387153437
Thanks!! I understand that there are different types of anemia. I guess I'm NOT anemic since all my lab values are within normal range. Maybe I should have phrased it as iron restrictive anemia as sometimes seen in severe Hemochromatosis when the other forms of anemia don't really fit. The bodies iron storage is excessive, yet it can't release enough iron to maintain efficient red blood cell production. So in an essence it's not iron deficiency but rather iron restriction, which has the same consequences but more difficult treatment.
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