[KimberlyOnline Facilitator May 15, 2017 at 11:01 am Post count: 4288]

#1184006

Hi Jill – Sorry I missed this post! You might also consider posting this on the main forum with the subject “Husband With Graves'”, as it will probably reach a wider audience.

Having thyroid levels out of balance absolutely affects emotions, so hopefully, he is getting good medical care.

Wishing you and your husband all the best.

[mojon March 31, 2022 at 2:18 pm Post count: 25]

#1186350

Hi all,
It’s been several years since I checked in. I have some ongoing problems with labile BP and really difficult lightheadedness that Dr’s. have no answer for and is difficult to treat. I’m wondering if it is part of ongoing autoimmune disorder, related to Graves?

History: Head/Neck cancer in 2014. After radiation & chemo was diagnosed with Graves Disease with Thyroid Eye Disorder (GD with TED) in 2015. Went from hypothyroid to hyperthyroid. After TED burned itself out, Thyroid numbers settled down and had successful eye muscle surgery (2017). Thought that was the end of it. Then started having problems with BP which was labile (high and low) and lightheadedness. Efforts to treat have been mostly unsuccessful. If I take BP meds and BP goes down, I am so lightheaded I can barely get off the couch. Been to all kinds of docs, including heart. They can’t find any answer – why or what to do about it. Endocrinologist did some tests and said she couldn’t find anything that might explain it.

So even though my Thyroid numbers look O.K., could this be long-term or ongoing result of autoimmune response, or Graves? Anyone else have anything like this? THANKS!

[KimberlyOnline Facilitator March 31, 2022 at 5:59 pm Post count: 4288]

#1186351

Hello – I’ve seen some articles linking hypertension to autoimmune diseases, but haven’t seen research specific to labile hypertension. You might also consider joining the GDATF’s closed Facebook group (go to Facebook, search for @GDATF – and then click “Join Group”). That group tends to be more active, so you might get some more responses. Hope you can find some relief.

[mojon March 31, 2022 at 6:05 pm Post count: 25]

#1186352

Thank you Kimberly!

[David Eckman November 21, 2022 at 2:26 pm Post count: 1]

#1186364

Good Day –

62 year old male, recently diagnosed with Graves and TED. Discovered my case because of double vision and after several visits to primary care doc, optometrist for eye test and prisms, endocrinologist, neurological ophthalmologist, blood tests and MRI’s, I am ready to start Tepezza.

Hoping for the best!

Dave

[KimberlyOnline Facilitator November 21, 2022 at 2:29 pm Post count: 4288]

#1186366

Hello and welcome! Let us know if you have questions. This forum has been pretty quiet of late, but if you are on Facebook, we also have a pretty active closed group there as well as a social wall on onegravesvoice.com (a collaboration between Graves’ Disease & Thyroid Foundation, rareLife Solutions, and Horizon Therapeutics.) We have members on both sites who have experienced double vision, including some who have been treated with TEPEZZA.

[Curt February 13, 2023 at 11:27 am Post count: 2]

#1186385

Thank you

[Curt February 13, 2023 at 11:28 am Post count: 2]

#1186384

Hi all,
I’m here because I feel lost. Not sure anyone else feels this way. Here’s my story;
Started out being diagnosed with a thyroid storm in 4/20 during the pandemic. Thought it might be COVID symptoms or just getting old LOL! (I was 51). When I almost fell off a ladder and couldn’t get my breath I finally saw my PC and he was on it (so thankful for him). Started Methimazole, beta blockers etc. 1st endocrinologist I saw recommended RAI immediately and I said I needed to know more before I decided to do that. Changed diet and found a lot of information without scientific backing out there. After a year with this endocrinologist and another thyroid storm I left this Dr (BTW, the Dr had a great bedside manner which made it difficult to leave) and with the help from my PC found the endocrinologist I’m with now. In the meantime I started having eye issues and was diagnosed with TED and started Tepezza in early 2021. Tepezza initially worked and life seemed to start to get back to normal. Within 3 months after the last infusion I had relapsed and was dealing with hearing loss and a whole host of other side effects from my treatment. Went on infused steroids with no luck. Finally after almost 3 years on Methimazole my doctors and I decided it was time to do a thyroidectomy (all hormone levels weren’t normalizing and TSI was always high). My main reason for the thyroidectomy was hoping that it would get my TSI in check helping my eyes get better. Also, I’m very active (Mt bike, snowboard, camp etc), have a 14 year old I try to keep up with, and with my vision issues it makes things difficult at best. After the thyroidectomy my eye condition worsened dramatically and TSI level went up (my endocrinologist was perplexed to say the least). I was besides myself. Went back on infused steroids which helped initially but didn’t last. TSI is finally starting to go down, which could be because of the steroids, we’ll see in the near future. This past week my ophthalmologist has suggested to possibly try radiation therapy. Has anyone had RT? If so how’d it work for you?? Good luck to all of you and shoot any questions at me. I’m pretty much an open book.

[KimberlyOnline Facilitator February 13, 2023 at 11:41 am Post count: 4288]

#1186388

Hello and welcome – This forum (and this thread in particular) has been a bit slower of late, but you might also be interested in our groups on Facebook and at onegravesvoice.com.

Some patients do get treated with orbital radiotherapy, which can provide relief from swelling and double vision. A couple of caveats are that patients with diabetes should use caution, and also there is typically a “lifetime limit” of this type of radiation, due to a theoretical risk of developing tumors. You can read more in this document by doing a search for “radiotherapy”.

https://www.liebertpub.com/doi/10.1089/thy.2022.0251

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