[geminous13]

#1017901

I wrote a very long-winded post, (through tears, no less) but I’m guessing that I did not post it correctly, as it did not show up.

Anyhow, I would like to say ‘hello’ to all and mention how much I have enjoyed reading your posts. I had a feeling of connection when I discovered this board just a few hours ago. It is as though I am not alone in this journey!

My story with GD began about 7 years ago. I was 22 years old when I was diagnosed and due to the extreme severity of my symptoms I had an immediate RAI treatment. I lost my insurance just days after the treatment and fell extremely ill from lack of thyroid replacement. I have ran the gamut of symptoms – from hot, anxious, tremor, heart palpitation-maniac, to cold, dry, lifeless victim. I took myself to the ER after 10 months of feeling like hell – and finally admitting I was going to be in a coma if I didn’t do something about it! I was started on Synthroid (I have since switched to Armour), which made me immediately feel better just knowing I had started the healing process. After the medications took effect, I felt like a new person. I was truly grateful for everyone and everything in my life. I started trying new things, meeting new people and picking up new hobbies. This has since all changed. . .

About a year ago I noticed in a photo that I had TED in my left eye. It hit me like a ton of bricks. I look at myself in the mirror every day when I get ready for work/school and before I go to bed at night. How had I never noticed it? It is the strangest thing – to this day I still cannot see it in the mirror, just in photos and videos. I have spent the last year avoiding pictures, social events and even looking people in the eye. I am on the verge of depression (although I am too strong to admit that even to my closest confidant). I am reaching a point where this is possibly going to effect my love life (a relationship of 6 years – we met shortly after my RAI and he has been on the ride with me since).

I guess I am looking for advice. I am really not sure of how the progression of TED works. Does it ever resolve itself? Is surgery the only option?

Also, Does anyone have opinions on thyroid extract (the kind that can be purchased OTC)? I have been trying to research whether or not this could be helpful with GD. There are many different brands and kinds (ex. thyroxin-free). Could this replace the Armour that I am on now? I switched to the Armour on advice from my endo at Emory in Atlanta (I wish I still lived near there!) who stated that it could help with my hair loss and weight issues – which, it has. I am just concerned with the toxins that are in the pigs that this drug is derived from are harmful for me. There are New Zealand hormone-free, grass-fed, bovine thyroid extracts available that seem like they might be a better option. If not a replacement for my thyroid, could they be a good addition for supplementation?

I am obviously not skilled in endocrinology, but have found it to be an exhausting, almost OCD, hobby. You can get a lot of mixed ‘facts’ from various sources – even the medical professionals that you seek. This is why I am pleading the advice of those who know best – my fellow GD companions. I will continue to read your posts and reply if I feel I can be of service. If you have any questions for me, please feel free to ask.

Thank you dearly to all who take the time to read this!!!

[Ski]

#1061556

Hi geminous,

Sorry for the lag in getting your post up for responses ~ we get a lot of spam, so we require an approval process before a member’s first post can be revealed (saves you from clicking into a lot of advertising, believe me…).

In any event, we’re so glad you found us! TED is definitely an emotional issue as well as a physical one ~ some of the eye doctors we’ve heard at our conferences have tapped into research that shows TED patients are more depressed even than cancer patients! How we look has so much to do with how we feel about ourselves, how we present ourselves, how comfortable we feel relating to people, that it can be really debilitating when that starts to go crazy.

I can’t spend too much time replying right now, but I’ll get more in depth later (or someone else will jump in) ~ I just wanted to tell you that there is a definite disease curve with TED, and many patients with small changes end up reverting to their normal look without any intervention (I did). In the meantime, do whatever you need to do to be comfortable ~ limiting wind/dust/sun exposure will help, and dark sunglasses can be a godsend when you’re among others. Remember always my favorite advice from Bobbi: she had some eye issues, and spent some time looking in the mirror to decide what "look" worked best. Bottom line: a smiling Bobbi looked better than all the others. So smile. ” title=”Very Happy” />

As far as your thyroid hormone replacement ~ you need thyroxine, that’s what you’re taking replacement for, so you should not abandon a thyroxine pill for one without thyroxine. There is a real cottage industry around "thyroid support" supplements, but they are not regulated or proven to "solve" anything. Best to go with those that have been vetted, especially in the absence of your own thyroid to produce thyroid hormone. The best answer is to get your levels normal, and then find YOUR normal within the gargantuan normal "range." Your doctor needs to be a team member in adjusting doses ever so slightly to ensure you find YOUR normal. A symptom diary (kept daily and shared with your physician at appointments) can definitely help.

By the way, your thyroid hormone replacement and thyroid hormone levels have nothing to do with your TED symptoms ~ they follow a separate course entirely. Treatment for one does nothing for the other.

[snelsen]

#1061557

Hi, TED came into my life a couple years ago. Welcome to this wonderful forum! It is so supportive, and has accuracy and support that is wonderful. So glad Ski has written to you. I don’t have a ton of time right now, either, but will write more extensively later in the day. She is "right on" about the hormone replacement. So I suggest you do not consider any other form of addtional treatment or substitute. More about that later. Basically, after you RAI, you had little or no thyroid hormone, and the plan has to be to replace it in the right amount for you, your body. That is determined by how you feel, plus thyroid [b]labs[/b]. If there is any dose change prescribed an endo or primary care doc, you must wait at least six weeks, 8-12 weeks even better, to have labs that accurately represent the amount of thyroid you have for your body.

Re TED, short answer for right now. Do you have access to a neuro-ophthamologist, and/or a regular ophthamologist (not optician who can do some preliminary tests to see if you have TED? As Ski said, TED symptoms are all over the map. TED generally runs a predictable course of active (or hot) phase, and inactive (or cold phase.) In TED, antibodies are made to specifically attack the eyes (in very rare instances, the shins of legs) When you see the eye doc, think about any other symptoms you may have–light sensitivity, more tears than usual, dry eyes, double vision, to name a few.
There are lots of treatments for TED, most of them occur when the active phase is done.
When you say you have TED in the left eye, what do you mean? Do you mean it looks bigger, or that is bulging a little bit?
At any rate, you have hope, we will slug through this with you, and I hope we can get you to a place where you will begin to go out more. You can have a social life, good friends. I am the first person to say that TED has been very hard to have.
But it gets better.Shirley

[geminous13]

#1061558

Thank you Ski & Shirley – I truly appreciate the words of encouragement.

To Ski: Last fall I met a woman who complained of her GD. I later found out through conversation that she too had TED (in both eyes) that she said had resolved on it’s own. She actually carried around her laminated driver’s license from 30 years ago as a reminder of what it looked like! I would have to say that in that moment I was able to mellow out *a bit*. My hope is that, like yourself and this stranger, my TED might resolve on it’s own. I would have to agree with Bobbi – my TED is a lot less noticeable when I smile ” title=”Very Happy” />
If you don’t mind me asking Ski, How long did you have TED before it resolved?

To Shirley: There is actually an ophthalmologist who specializes in oculoplastics surgery near me. I was fortunate to have had an appointment with him just over a year ago (when I still had health insurance). He took measurements and photos of my left eye (which has u/l lid retraction and proptosis). I think I went to his office expecting him to be able to wave his magic pen and write a prescription to ‘cure’ my TED. I was devastated when I left his office.

I will continue on with my investigations. I am happy to know that I now have others to share stories with and ask advice. Thank you again!

[Author]

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