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kiwidinok 01-21-2013 01:04 AM

what should I do?
 
I have been having trouble for a while and doctors have not been to helpful. My counts have been steadily going down. My cycles were never heavy and no more than 3 days max. In August of last year I had a 21 day cycle, then in Sept one that last 30 days. In Oct I had one that was 28 days. My gyn did an ablation in Nov 2012 and I have not had a period since. I was on 325 mg of iron for over six months prior to the ablation and took iron supplements for over a full year in addition to that. My pcp had me stop the 325 mg the middle of Dec and said I should no longer need it and to just eat a bowl of fortified cereal.

I have moved and am seeing another PCP he ran an extensive panel. My ferritin serum is a 5 and my HB is a 9. In Nov. my HB was a 10.3 and my Ferritin was an 11. According to both my gyn and my prior pcp my counts should not have gone down after the ablation.

I have recently started loosing my hair and am sooo exhausted. This new primary care wants me to have a spinal tap. I tested very high on my CRP and ESR for inflammation. I have been running low grade fevers in the evening, having horrible night sweats (that my gyn says is not related to hormones)and a dry cough for over six months. My question is: with the recent drop in my ferritin serum should I insist on getting a referral to a hematologist? Your thoughts are much appreciated. I really feel like crap and have no energy at all!

Thanks in advance,
K

Heatherx5 01-21-2013 04:52 AM

Re: what should I do?
 
[QUOTE=kiwidinok;5120397]I have been having trouble for a while and doctors have not been to helpful. My counts have been steadily going down. My cycles were never heavy and no more than 3 days max. In August of last year I had a 21 day cycle, then in Sept one that last 30 days. In Oct I had one that was 28 days. My gyn did an ablation in Nov 2012 and I have not had a period since. I was on 325 mg of iron for over six months prior to the ablation and took iron supplements for over a full year in addition to that. My pcp had me stop the 325 mg the middle of Dec and said I should no longer need it and to just eat a bowl of fortified cereal.

I have moved and am seeing another PCP he ran an extensive panel. My ferritin serum is a 5 and my HB is a 9. In Nov. my HB was a 10.3 and my Ferritin was an 11. According to both my gyn and my prior pcp my counts should not have gone down after the ablation.

I have recently started loosing my hair and am sooo exhausted. This new primary care wants me to have a spinal tap. I tested very high on my CRP and ESR for inflammation. I have been running low grade fevers in the evening, having horrible night sweats (that my gyn says is not related to hormones)and a dry cough for over six months. My question is: with the recent drop in my ferritin serum should I insist on getting a referral to a hematologist? Your thoughts are much appreciated. I really feel like crap and have no energy at all!

Thanks in advance,
K[/QUOTE]

I think it's amazing how different Dr's can be on this situation. I started feeling sick 8 months ago and found out I had anemia, my ferritin was a 2 believe my iron was a 18. Hemoglobin/Crit both really low. I have had heavy flows my whole life. I guess it's just something that caught up to me.

I had an ablation December 10, 2013 and have not have a period for 2 months. My last check my ferritin was a 33 prior to ablation, that is after taking iron for 8 months and continuing to have heavy flows. My OB says even with a ferritin of 33, normal hemoglobin/crit I can plan on taking iron for [U]another year[/U] to get my numbers (specifically ferritin) back up where it needs to be.

Your ferritin is much to low and this number takes months and months to raise. I can't imagine doing it without iron, it's a long hard road even while taking iron. A bowl of cereal is not going to help you, sorry. I would definitely seek the advice of a hematologist if I were in your shoes. Most people don't report feeling well until ferritin reaches the 50's even 70's and this number takes months to go up.

kiwidinok 01-21-2013 05:13 AM

Re: what should I do?
 
Hello Heather,

Wow, really another year? I am so exhausted I actually slept close to 20 hours yesterday! I feel just spent. I am going to make an appointment with my new pcp and talk to him about trying to get a referral to a hematologist.

I am not sure why he wants the spinal tap done, I guess in light of other symptoms.
My next question since it takes so long to get the iron up orally when they are at level not at as low as mine, is this when a hematologist is more inclined to go the transfusion route to boost you up?

Got to say-loosing my hair like this is not on my top 10 list:(

Heatherx5 01-21-2013 05:23 PM

Re: what should I do?
 
Yes another year and truthfully I don't want to take it for another year. The hairloss can be directly related to the ferritin. I never really noticed and thought it was normal, luckily I have thick hair but I do notice a spot on my head that is more bald and it's so depressing. I lose tons of hair too. It sucks. I would say yes where your numbers are lower they may be more inclined to give you an infusion over the oral route. Infusions are much faster. :)

fufu 01-21-2013 06:37 PM

Re: what should I do?
 
I have anemia myself, my hemoglobin was at 88 and my ferratin too low to even measure, this was last May. I never did well on iron pills so i never took them, i started taking a natural product from the healthstore called Nulife Hemoplex, 2 months ago i dd a blood test and only got my results today. My hemoglobin is at 144 and ferratin is at 17. This natural iron product has changed my life, my counts are all normal and i feel great again, and the best thing is no side effects. My doctor cannot believe that i brought my levels so high in only 6 months. Please try this product it truly works.

Heatherx5 01-21-2013 08:47 PM

Re: what should I do?
 
I actually switched to hemaplex 2 months ago as well as got an ablation. I'm taking the slow release kind though and it says only to take one a day. I figured slower release made more sense since your body can only absorb so much iron at a time anyways. In theory the slower release the more is absorbed rather then all at once. I'm glad to hear it worked for you! I need to make an appointment and get my numbers checked.

kiwidinok 01-21-2013 11:01 PM

Re: what should I do?
 
Hi Heather and FuFu,

I saw my pcp today. He had over looked my ferritin, HB and iron test because I have some other serious issues going on. When he looked at the numbers he put in a referral today to the hematologist/oncologist for me to be seen in the next couple of days.

He said that the only thing now that would bring my levels up would be a transfusion, oral medication would not work. He also said he was sure that the hematologist would be doing a bone marrow biopsy on me.

I am glad I called and got in this morning but nervous about going in. My pcp said he felt I was going to need transfusions for several months however, it would be up to the hematologist to decide...

Heatherx5 01-22-2013 07:10 AM

Re: what should I do?
 
I will be keeping you in my thoughts! Everything will work out.

kiwidinok 01-22-2013 07:28 AM

Re: what should I do?
 
Thank you Heather, I hope so too!


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