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 Hypothyroidism or Hashi's?

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CreepyCrawly
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PostSubject: Hypothyroidism or Hashi's?   Tue Nov 22, 2011 12:05 am

I just found out that I also have hypothyroidism and Hashimoto's with IIH

I just found out that I also have hypothyroidism and Hashimoto's. This is troubling to me, as I have been doing fairly well for the most part with my Diamox Sequels, but now am being told that to clear my cell receptors of RT3 and to get thyroid hormone into my cells (and supress Hashi's antibodies) I have to take Cytomel (synthentic thyroid T3 hormone). I know hormones have a lot to do with IH, and I am afraid of taking the hormones, and them messing up my head. My neuro-ophthalmologist who is treating me for the IH made me get off of all birth control hormones, which I don't know if that helped at all or not. I had been getting the depo shot, and he had me stop. About 9 months after I quit the shot he had to double my Diamox dosage, so it seems unlikely to me that the shot was making the IH worse. At the same time, I don't really want to go start taking a bunch of hormones when I know hormones can make the IH worse. Maybe taking the hormones, and giving my body what it needs though will actually help?

Does anyone else here have IH and hypothyroidism/Hashi's? I can't seem to find much information on these two issues occuring simultaneously. My thyroid doctor doesn't know ANYTHING about IH, and while I haven't yet spoken to my IH doc (neuro-ophthalmologist) about the thyroid issue, I doubt he is going to know a whole lot either.
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Heidi
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PostSubject: Re: Hypothyroidism or Hashi's?   Tue Nov 22, 2011 1:17 am

I don't know of any sufferers with either hypothyroidism or Hashi's, but I've been and read up on it, and from what I have learned, both are treated to help you keep your hormone levels normal. The reason why birth control is recommended not be taken, is because it can cause Secondary IIH. This is because of the estrogen in most birth control pills.

I would suggest the best thing to do would be to contact the IH Research Foundation, as they may be able to advise and give your more information. I'm sorry I cann't be more helpful but unfortunately I've been unable to find anything on the internet or in medical articles cited online.

I wish I could be of more help. Give the IH Research Foundation a try, becauser they may know more about it, and may even advise what information to give your doctors.

Here is the link to contact them. Contact the IHRF

Heidi hug
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medmisfit
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PostSubject: Re: Hypothyroidism or Hashi's?   Fri Nov 25, 2011 3:13 pm

I do have hypothyroid, although I don't think anyone has ever related it to IIH other than the weight gain. They are linking IIH more w/ hormones, so I guess it makes sense. I wasn't diagnosed w/ it until well after my IIH diagnosis, so I will definitely be looking into it. IHRF is a great resource and they usually connect you w/ resources, if unable to answer your questions. Let me know if you find anything interesting, and hang in there!

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Julie
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BananasMom
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PostSubject: Re: Hypothyroidism or Hashi's?   Thu Dec 08, 2011 7:00 pm

I have hypothyroid, but not Hashimoto's as far as I know. This is another condition (like my PCOS) that I was diagnosed with long before the onset of my IIH, and it does not appear to be related. I take Levothyroxine (Synthroid) daily for control of this condition, and they adjust my dosage of it periodically by checking bloodwork. For me, I really believe managing this condition as well as my PCOS contribute in a positive way to managing my IIH. I hope it will be the same for you! *hugs*
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jbird25

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PostSubject: Re: Hypothyroidism or Hashi's?   Mon Mar 07, 2016 7:04 pm

Hello! Have any in this thread made any progress dealing with IIH and thyroid issues? I've had IIH almost 4 years, and last summer had thyroid completely removed due to cancer, as well as presenting with Hashimoto's. As you all have said, finding a doctor that is able to understand how the conditions interact and how treatment interacts is difficult - they all defer to the other without much being accomplished. Anything you've discovered may help! Thank you!
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