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Bloodwork all over the place: Autoimmune, Hypothyroidism, Epilepsy+

Posted by laneyh @laneyh, Aug 1, 2022

Hi, I’m currently seeing 5 specialist and will help give some insight on bloodwork issues. My diagnosed areas that have been on going are Hypothyroidism(50yrs), Epilepsy(45yrs, controlled 10), and Microscopic Colitis (2yrs). All of a sudden since developing the Colitis my thyroid is all over place. Went from 150mcg to 100mcg back to 130 mcg pill. My Depekote levels are up and down. My Ferritin has been a 6 sometimes raising to a 9 and the rest of iron is low, all of WBC is low including platelet count. I find it strange I can pin point the day my WBC started dropping, it was 6 years ago when I had CDIFF, been tested for again. To top it all off my ANA is 1280 but Autoimmune diseases (lupus, RA , ETC) are ruled out. I do not have cancer and the hematologist is baffled. Does anyone have changes in bloodwork with Menopause(Drs tell me no). I’m so tired of getting bloodwork all the time and no answers. I’m tired period! Not to mention I lost 70 pds this year but it was much needed. I weigh what I weighed in high school! Any insight would be great. Thanks

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 20, 2022

@laneyh, I hope you don't mind, but I expanded the title of this discussion and moved it to show in multiple groups including Autoimmune Diseases, Endocrine System, and Epilepsy in the hopes of attracting more responsese.

I'm tagging @astaingegerdm @gingerw @pbt @carolyne @jakedduck1 and @tlfrench who have some or all of the same conditions as you. Perhaps they also share the experience of bloodwork variations.

Laney, are these fluctuations new for you?

REPLY
1 reply
laneyh | @laneyh | Aug 20, 2022
In reply to @colleenyoung "@laneyh, I hope you don't mind, but I expanded the title of this discussion and moved..." + (show)
@colleenyoung

@laneyh, I hope you don't mind, but I expanded the title of this discussion and moved it to show in multiple groups including Autoimmune Diseases, Endocrine System, and Epilepsy in the hopes of attracting more responsese.

I'm tagging @astaingegerdm @gingerw @pbt @carolyne @jakedduck1 and @tlfrench who have some or all of the same conditions as you. Perhaps they also share the experience of bloodwork variations.

Laney, are these fluctuations new for you?

Jump to this post

Thank you and yes new to me in the last 2 years.

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becca13 | @becca13 | Dec 25, 2024

My platelets are at 28 my Dr cut my Divalproex in half ,I am also on Zonisamine and Lamictal
So I am hoping I can get it under control by changing meds by process of elimination , I have a bone marrow biopsy tomorrow- I do not want more meds lol🤦🏻‍♀️

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kayabbott | @kayabbott | Dec 26, 2024

I am 70 and collect afflictions as well. Idiopathic epilepsy for 50 years (I'm at very low dose: 75 mcg/day extended release Keppra). Regarding the first post, if she was on Dilantin (phenytoin), that can increase ferritin (iron buildup in organs) because it is metabolized by the liver. Keppra mostly slaps the kidneys around a bit. My hypothyroidism is for 20 years, no telling why, but do battle it out with my PCD over TSH levels (more energy and better weight control at 1, she prefers closer to 3). I have collagenous colitis, a brand of microscopic colitis that laneyh (@laneyh) has; it is likely tied to the celiac that I have had for 15 years. Going off gluten was enough to control the celiac (genetic, it was triggered by H1N1 and stress), but my colitis flares happen with elevated stress, legumes, NSAIDs, ACE II, Statins, and who know what else. It is important to keep a food diary to track down triggers. I also have MGUS, but it hasn't caused me problems yet. I try to manage the herd of afflictions with diet, exercise, enough sleep, fun stuff, and managing stress.

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1 reply
momx5dea | @momx5dea | Dec 26, 2024
In reply to @kayabbott "I am 70 and collect afflictions as well. Idiopathic epilepsy for 50 years (I'm at very..." + (show)
@kayabbott

I am 70 and collect afflictions as well. Idiopathic epilepsy for 50 years (I'm at very low dose: 75 mcg/day extended release Keppra). Regarding the first post, if she was on Dilantin (phenytoin), that can increase ferritin (iron buildup in organs) because it is metabolized by the liver. Keppra mostly slaps the kidneys around a bit. My hypothyroidism is for 20 years, no telling why, but do battle it out with my PCD over TSH levels (more energy and better weight control at 1, she prefers closer to 3). I have collagenous colitis, a brand of microscopic colitis that laneyh (@laneyh) has; it is likely tied to the celiac that I have had for 15 years. Going off gluten was enough to control the celiac (genetic, it was triggered by H1N1 and stress), but my colitis flares happen with elevated stress, legumes, NSAIDs, ACE II, Statins, and who know what else. It is important to keep a food diary to track down triggers. I also have MGUS, but it hasn't caused me problems yet. I try to manage the herd of afflictions with diet, exercise, enough sleep, fun stuff, and managing stress.

Jump to this post

I also have Hashimoto PBC and Celiac
I only can keep my TSH and T3 normal with C-thyroid USP Natural Thyroid at any Compounding Pharmacy and yes you will have to pay cash but so worth feeling better!

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Dec 27, 2024

Wow! Some of you have a lot going on (“herd of afflictions”). The original poster mentioned having 5 specialists. My only suggestion for this dilemma is to try as much as possible to make sure these specialists are part of the same healthcare system or at least have access to each other’s records. They need to know your whole health history and be willing to collaborate with each other for an integrated treatment plan(s) for you. You sure don’t need to experience any unnecessary complications or contraindications.

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2 replies
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Dec 27, 2024
In reply to @cehunt57 "Wow! Some of you have a lot going on (“herd of afflictions”). The original poster mentioned..." + (show)
@cehunt57

Wow! Some of you have a lot going on (“herd of afflictions”). The original poster mentioned having 5 specialists. My only suggestion for this dilemma is to try as much as possible to make sure these specialists are part of the same healthcare system or at least have access to each other’s records. They need to know your whole health history and be willing to collaborate with each other for an integrated treatment plan(s) for you. You sure don’t need to experience any unnecessary complications or contraindications.

Jump to this post

Now I’m getting a screen message saying “Attention Required
Add text to your reply”

I’ve never seen this before and I can’t seem to reply at all!

REPLY
kayabbott | @kayabbott | Dec 27, 2024
In reply to @cehunt57 "Wow! Some of you have a lot going on (“herd of afflictions”). The original poster mentioned..." + (show)
@cehunt57

Wow! Some of you have a lot going on (“herd of afflictions”). The original poster mentioned having 5 specialists. My only suggestion for this dilemma is to try as much as possible to make sure these specialists are part of the same healthcare system or at least have access to each other’s records. They need to know your whole health history and be willing to collaborate with each other for an integrated treatment plan(s) for you. You sure don’t need to experience any unnecessary complications or contraindications.

Jump to this post

True, all but one of my doctors are in the same medical network (including being from many countries, and all sizes, ages, and colors) the outlier can access the info, and I keep her updated. It is also important to research one's maladies and treatments. Doctors don't always know incompatibility of meds/treatments/foods with complex competing afflictions. I've seen the limitations of medicine starting when I was 13 and my ruptured appendix was diagnosed as constipation.

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