[msmanatee]

#1017863

I just want to thank everybody here for this amazing board. I have been drenching myself in it for over a week! Newly diagnosed sub-clinical hyperthyroid female here.

In late March, about a week after moving into a house, I developed annoying eye symptoms. Optometrist confirmed eye allergy, prescribed antibiotic trial, Pataday, and a steroid for swelling. Mold was discovered in the a/c, which was replaced, ductwork and house scrubbed, and the itching went away but swelling and vision got worse. I began having random meltdowns and I’m a cool chick. I even went to a Traditional Chinese Medicine practice but the accupuncture to the sinuses, well… whoa, no.

A month ago I saw an ophthalmologist who found no allergy, suspected Graves and sent me for blood work. On to an endo with more blood work and the uptake scan. Basically my T3s and T4s are normal, TSH is .01 or less, TSI is 349. Scan diffuse 46% no nodes.

A couple of years ago, palpitation episodes began (went to ER after chest pains, when nitro made me feel better instantly but they found nada). The week before that I’d been driving on the interstate and literally went blind for about five seconds, no warning, just long enough to realize it was probably the end and calmly tell my daughter to prepare to take the wheel, but then my vision returned to normal, BAM! I still get palpitations when absolutely nothing is going on sometimes, more lately. But no beta blockers because my heart rate is usually on the low side, just the occasional POP. The only med I’m on now is prednisone oral (40mg) and pred drops.

Right now the difficulty of assembling a team that can agree and communicate with each other is my preoccupation. I’ve seen five specialists so far and am told I might need three more! I’m thinking about going for a consult at Mayo or somewhere where everybody works as a team. Maybe I’d pursue treatments at home after achieving some kind of consensus (if that’s possible). I am so befuddled I didn’t even think of that myself, my brother did (normally that would be my job). Anyhow was wondering if any of you have done that and if it’s a good idea or not.

I keep thinking being sub-clinical is no big deal compared to what many of you have been going through but my TED is advancing with a lot of muscle involvement and the docs seem alarmed. They want me to get a CAT scan asap. The endo wants thyroid surgery, one of the eye docs wants RAI, nobody’s suggested anti-thyroid drugs and I’m still not even hyper, technically. :” title=”Question” />

Meanwhile I’m looking for a pedestrian-friendly non-moldy new place since I’m a single mom of one still at home who needs to go places… Thanks for listening (and sorry for the long post; I’ll condense in future).

[Kimberly]

#1061353

Hello – About 15% of patients experience eye symptoms *before* they end up with thyroid involvement. There is some controversy over whether subclinical hyperthyroidism should be treated, as suppressed TSH can be associated with bone density and heart issues. However, the usual approach is to “wait and see” – with periodic follow up testing to see if you progress into “overt” hyperthyroidism with elevated T3 and T4.

There is also some controversy over whether bringing antibody levels down (which can be accomplished with surgery or Anti-Thyroid drugs) can have an impact on TED. RAI actually causes the antibodies to spike during the first few months after treatment. Also, the new guidance from the American Thyroid Association and the American Association of Clinical Endocrinologists notes that “…Methimazole or thyroidectomy are also recommended treatment options in each of these scenarios [referring to different degrees of eye involvement], and they are the preferred choice of therapy in patients with active and moderate-to-severe or sight-threatening GO.”
There are clinics that specialize in Thyroid Eye Disease in San Diego, CA and Ann Arbor, MI. If you’d like to send me a private message, I can get you the info. (We don’t directly post doctors’ names on this board).

[msmanatee]

#1061354

Kimberly wrote:Hello – About 15% of patients experience eye symptoms *before* they end up with thyroid involvement. There is some controversy over whether subclinical hyperthyroidism should be treated, as suppressed TSH can be associated with bone density and heart issues.

Thanks for your reply, Kimberly. I think I read that on another thread, too. I guess I need to understand the connection between TSH and bone density and heart issues better. As well as the pros/cons of ATDs vs. surgery. Back to searching!

[snelsen]

#1061355

He is my dismal experience with having subclinical hyperthyroidism. But I don’t think it is typical. You can see the pattern of my Graves’ at the end of this post. My TSH has been suppressed for years, but I have to have the replacement hormone or I become a zombie who cannot eat food. But that is recent.
Over the years, I have felt well, had no symptoms of being hyper (after my thyroidectomy, being euthyroid with no replacement for 30 years, then needing a little Synthroid. This is over a period of 40+ years. I am aware of the issues with having a sustained suppressed TSH. But I felt great.

So finally, a year and 1/2 ago, I agreed to decrease my Synthroid from 125mcg until my TSH was at least in the low normal range. I agreed to do this because of increased risk of osteoporosis and afib. My T3 is always normal, T4 is sometimes slightly elevated. As we decreased the Synthroid, I became pathologically cold, felt sluggish, could not stay out of bed. TSH did not change. Then I could not eat. Felt like a basketball was under my ribs. I felt very hypo, but was losing weight because I could not eat. i saw a GI doc. Had an endoscopy, was fine. Had a gastric emptying study, and the food had not left my stomach in 12 hours! Which is why I could not eat, was losing weight. Diagnosis gastro paresis, related to being hypothyroid (or not having enough thyroxin circulating, who knows? Because my TSH remained suppressed whether I was at 150 mcg or 77. As mentioned above, I did all this reluctantly,for I felt great at 125mcg, to reduce the risk of osteoporosis and slight increased incidence of afib.
I could not live not eating, and did not want a gastrostomy tube, so we increased my Synthroid.
I guess there is not much take-home message from my experience, except that i have subclinical hyperthyroidism WITH replacement, and I cannot live without it.

I completely understand about the docs not talking to each other. Assembling a team is tough. I considered going to some well know clinics who work with TED patients, but there are way too many eye appointments to consistently do that. I pretty much asked around and shopped around the city for the best people available to my knowledge. I am having this experience with TED, which I developed two years ago (50 years after my Graves’ dx at the age of 23.) I had increasing symptoms of TED, most of which you have mentioned, plus crippling double vision, horrible light sensitivity and lots of tearing. It has been my experience that endos immediately refer to ophthamologists if they suspect TED. Endos don’t follow it or treat it. But they do follow Graves, and all things thyroid.
My orbital CT showed extremely fibrosed muscles of the eyes, no surprise to anyone. If you do have TED, you definitely need to be followed by a neuro-ophthamologist, and preferable a strabismus surgeon all the way through the active phase. The surgeon follow up, will measure, and sometimes treat with prisms, if you have double vision. If you don’t have it, you probably don’t need to be followed by a strabismus surgeon (almost always a pediatric ophthamologist.
But you DO need to be followed by a good neuro-ophthamologist if you had a TED diagnosis. There are a small % of people who develop optic neuropathy (pressure on the optic nerve) which means treatment with an orbital decompression, no matter which phase you are in. Otherwise, any surgical procedures should be done after the active phase (meaning that your eyes are stable, not changing anymore.) If you have TED, I can tell you that it finally gets to a stable state, where your eyes are not getting worse. That is step #1.
I have done a lot of due diligence with both situations. It is simply hard to have Graves’ or TED. But at the end of the day, there is usually improvement, and the strabismus surgery to get rid of my double vision was absolutely wonderful.
I am not sure if any of this is specifically helpful to you, but this site is all about sharing experiences, so there may be something that is helpful.
Shirley

[msmanatee]

#1061356

That is an incredible saga, Shirley! I can’t even quite take it in and can’t imagine how difficult it has been for you but thanks for sharing. I do have osteopenia but not sure about my heart. How crazy is it that Prednisone mimics the heart symptoms and makes me as jittery as a cat.

There is no doubt I have moderate (to mildly severe :” title=”Question” /> hard to say) TED. My eyes do not bulge out but feel as if they do. They were rather deep-set to begin with, and on the small side, so only people who know me are shocked. My pressures keep getting measured at 30. They ache a little all the time and sometimes I get sharp pains in them. At times they get very aggravated and teary, other times very dry no matter how much artificial tears I pour into them. I get other weird visual effects (dimming, odd light) but so far they always recede.

On the other hand I would say I don’t have double vision unless I try to look up or sideways so the range of normal is decreasing at a noticeable clip. One of the reasons I’m now living on this board is because I’m afraid I soon won’t be able to visit. I’ve spent the weekend printing and writing notes.

So far I’ve only seen a regular ophthalmologist, fortunately a very sharp one. Tomorrow I’m to see a neuro-ophthal who is also an oculo-facial surgeon, who I’m told wants to do more testing and order the CATscan. I see both tomorrow because this second doctor doesn’t check eye pressures!?!

To be honest, as terrifying as all of this is, the worst is not knowing how to gauge my prognosis or rather, to plan for the future. I’m really in a bad situation to be going blind, with no adults to depend on and a teen dependent on me. Reducing stress seems impossible at the moment.

[jansm]

#1061357

I completely understand the difficulties in finding a team of physicians to help, and getting them all to communicate — or at least transfer records and test results. I live in a very large metropolitan city, and thought it would be so easy to locate any type of medical treatment I would need. It was very frustrating when a physician would refer me elsewhere, but be slow or completely refuse to share or transfer all medical records to the fellow physicians they suggested. I soon learned to request copies of everything sent directly to me so that I could have them in hand to take to other physicians. My local endocrinologist, whom I love dearly, even encourages me to do so.

In retrospect, I would go to a facility with all disciplines under one roof if there is one convenient to you. I ended up traveling almost 1000 miles to have strabismus surgery at Mayo, since there were no physicians in my area willing to undertake my complex situation. What we learned there about my condition, confirmed the fact there were lapses in judgement and care due to lack of communication between local physicians. I cannot say enough wonderful things about Mayo, but also know there are many other all inclusive clinics and facilities. I researched several, but had more experience with Mayo due to other relatives’ and friends’ experiences there. I also found the physicians at Mayo willing to share information with my local physicians in the case I am unable to travel or need more immediate attention. Since such facilities deal with patients from all corners of the country and world, they seem more willing to coordinate and put the patients’ interests first, and not their own egos.

It was my eyes and an aching far back behind them that first appeared — long before any other symptoms. At the time, my normal opthamologist was booked for 3 months. So, in the interim, I went to an optometrist just for a quick check-up and to rule out anything serious. Big mistake. He informed me that it was just part of natural aging! Even looking at my chart and noticing that I was hypothyroid and on Synthroid, he never considered the possibility of a connection. Unfortunately, neither did I. I use my eyes a lot due to my hobby and work in needlearts. I could easily understand they might just be overused, but did not consider myself "aging" at 54. Before my appointment with my regular ophthamologist rolled around, we determined this was something much more serious and involved. I have now learned not to be afraid to ask questions, push for answers and search for the best treatment available no matter where it may take me.

[msmanatee]

#1061358

Hi Jansm, yes you are definitely tapping into my fears regarding records and communication! So far the only significant lapse was the optometrist treating me for allergic conjunctivitis for two months with zero benefit. But two of the docs argued over which of them should prescribe oral prednisone and the endo made a few mistakes in her notes. Perhaps not significant errors but still worrisome, like my aunt had three autoimmune diseases but just one is noted. But I am getting very picky along w/ my cranky so not sure I can even evaluate my own judgment! I am just glad I’m not yelling at anyone anymore. ” title=”Smile” />

I don’t live near Mayo but can get there for a consultation. My dad has had multiple surgeries at MD Anderson Cancer Center in Houston but coordinated local care otherwise and he’s still going strong at 82. There is a medication clinical trial at U Michigan also being run through Mayo and I’d like to know more about that.

If anyone has had radiation therapy to the eye sockets, I’d really appreciate a Chime In. I can’t see that the predisone is making any difference and might rather try that than sitting around waiting for orbital decompression to become necessary.

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