New member - completely lost

[frisby]

Hi everyone,

I really need some advice from everyone - I've been diagnosed with Thyroid Eye Disease but all my results for thyroid function have come back as normal.

My eyes started to protrude in October 2008 and I'm still having problems, despite seeing an opthalmologist and endocrinologist.

I've been told that nothing can be done and that I have to live with it - my main problem is that I don't exhibit signs of being either hyper or hypo thyroid.

I'm am completely confused about how I can help myself with diet - do I eat cruciferous vegetables in the hope that I'm hyper, but this may cause problems if it's Hashi's rather than Graves.

My gut reaction is that I'm hyper as my symptoms worsen if I eat anything rich in iodine. In fact I had to have iodine drops inmy eyes a few days ago when I saw the eye doctor and I feel worse than I have for weeks.

I'm also Celiac and have been gluten free for coming up to 9 months - yet still no sure sign that my eyes are going to get better.

I honestly don't know where to go from here.

Sorry for the long message, frisby

[Andros]

Hi everyone,

I really need some advice from everyone - I've been diagnosed with Thyroid Eye Disease but all my results for thyroid function have come back as normal.

My eyes started to protrude in October 2008 and I'm still having problems, despite seeing an opthalmologist and endocrinologist.

I've been told that nothing can be done and that I have to live with it - my main problem is that I don't exhibit signs of being either hyper or hypo thyroid.

I'm am completely confused about how I can help myself with diet - do I eat cruciferous vegetables in the hope that I'm hyper, but this may cause problems if it's Hashi's rather than Graves.

My gut reaction is that I'm hyper as my symptoms worsen if I eat anything rich in iodine. In fact I had to have iodine drops inmy eyes a few days ago when I saw the eye doctor and I feel worse than I have for weeks.

I'm also Celiac and have been gluten free for coming up to 9 months - yet still no sure sign that my eyes are going to get better.

I honestly don't know where to go from here.

Sorry for the long message, frisby

Hi there frisby and a hearty welcome to you!

I am so sorry about what is going on w/ your eyes.

It is not true that nothing can be done but let's back-up for a moment.

What kind of tests have you had run? Any antibodies tests such as TPO (antimicrosomal antibodies), TSI (thyroid stimulating immunoglobulin) which is diagnostic for hyperthyroid, Antithyroglobulin Ab, Trab (blocking and stimulating{TSI}) which is often found in Graves?

Here is some info..........
http://www.suite101.com/blog/daisyelaine/1074

Now, back to the eyes..........; we need to have the results of those "normal" tests and the ranges also if you can. Different labs use different ranges. Plus, you can have TSH, T3, T4, FT3 & FT4 come back in normal ranges while at the same time the antibodies are running amok. Further more, treating the thyroid while very very important, in and of it's self does not treat the eyes. It is a separate infiltration of antibodies and autoantibodies which are attacking the orbits of the eyes.

Now as to what can be done. You can have steroid drops, you can be put on a Prednisone pack, you can have radiation to the eyes concurrent w/ Prednisone which usually stops the infiltration dead in it's tracks (it did for me) and you also can have Kenalog injections.

I must say that if your Ophthalmologist has not offered any of the above options, I would see out another Ophthalmologist that has experience with this sort of thing.

I take it you are on no medicine for hyperactive thyroid or otherwise? Have you had a sonogram or a radioactive uptake scan? Have these things been offered to you? If not, they should be.

Very worried for you and glad you found us. I am sure others will have input as well.

Good for you about the gluten free diet. I have been gluten free for so many years, I cannot remember now. All I know is that it was a good choice and I sure don't miss anything that made me feel bad, that I can guarantee.

[frisby]

Hi Andros,

Thank-you so much for taking the time and trouble to reply to my message - it's very much appreciated.

I'm not on any meds at all - all I'm taking are Vitamin D and Folic for a deficiency possibly caused by being Celiac.

I was told that steroids weren't an option due to the side effects and the drops were ineffective, to be honest I would have preferred the option to at least disprove that theory.

I'll get myself organised and post all the blood-work that's been done - I'm just so confused by it all. I've reserached on the net and can't seem to work it all out.

I understand that the thyroid can be stimulated by the immune system to secrete too much hormone and that the auto-antibodies attack the back of the eye. But is there a feedback loop? In other words are more antibodies produced if the thyroid is hyper?

I've noticed a strange ache in the middle of my brain, but just assume that's down to the thyroid again, but need to check with the endo that the pituitary's not involved.

The strange thing is that I can maintain weight, but not on my face (quite wasted), all tests are negative including anything like HIV, so I'm assuming that it could be the thyroid, but why would it only seem to affect the facial muscles so markedly?

I'm beginning to ramble, but thank-you so much for your time - I'll post all my lab results and hopefully I can go from there.

[GD Women]

Hello and Welcome,

I have TED. It hasn't gotten any worse or better since I first noticed it 10 years ago. Through some old photos it could be possible that I had TED way before diagnosed with GD. However, in another photo at the age of approx 4 or 5, looks like my neck is swollen with goiter, so another possibility could be that I have had thyroid disease at early age. Perhaps swinging from hyper to hypo to hyper until diagnosed 12 years ago.

I eat cruciferous vegetables all my life and it did not stop my GD or TED. You'd have to eat tons of them daily for years before improvement is seen, if any. This is more like a myth than reality.

To add to Andros link, check out the below links as well. You might have "euthyroid Graves’ disease"

Thyretain™ TSI Reporter Bioassay also important for helping to diagnose euthyroid Graves’ disease. In this condition individuals show symptoms of thyroid eye disease although they have normal thyroid function. However, these individuals typically have high concentrations of both TSI and blocking TSH receptor antibodies. In this case, the blocking antibodies prevent TSI from causing hyperthyroidism, and both types of antibodies contribute to the autoimmune eye condition called Graves’ ophthalmopathy. Consequently, patients have normal thyroid function tests (TSH, FT4, FT3) with symptoms of Graves' ophthalmopathy.
http://autoimmunedisease.suite101.com/article.cfm/new_blood_test_for_graves_disease

Euthyroid Graves' disease is a condition characterized by the signs and symptoms of thyroid eye disease in the absence of thyroid dysfunction.
http://autoimmunedisease.suite101.com/article.cfm/euthyroid_gd

Other NONSURGICAL TREATMENT suggestions
Topical ointments and artificial tears may soothe the eyes.
Preservative free and sterile lubricant eye drops and for night time and for sleep liquid gel lubricant eye drops with 0.5% methylcellulose and/or hypromellose eye drops for lubrication.

Use cold eye packs for swelling, such as frozen peas which can be refrozen and used over and over again, just don't eat them later because of the repeated freezing.
Sleeping with the head elevated and using diuretics can reduce swelling.... raise the head of your bed with a 2x4 or 4x4.
The use of plastic shields at night can help prevent drying of the cornea if the eyelids cannot close during sleep. Tape your eyes shut with non-abrasive tape. Tinted glasses with side guards will help protect the eyes.
(I wear sun glassed rain or shine. Swimming, waterskiing, windsurfing - all the time).

Here are two tricks models use:
For eye swelling or bags use preparation H.
Use light shadow on your good eye and dark shadow (preferably brown) on the bad eye
light shadow makes the eye appear larger and
the dark shadow makes the eye appear smaller....maximizes - minimizes.

Topical Medication
Steroid Drops
Corticosteroid drops may help improve symptoms of moderate to severe dry eyes. Steroids reduce the inflammation responsible for dryness. However, chronically using a steroid may lead to side effects in some individuals, and is not a long term option.

Immunosuppressive Agents
Cyclosporin eye drops may also improve inflammation of the eye tissue resulting from dry eyes. Cyclosporin is an immunosuppressive agent that reduces the activation of T-cells found in tears that are responsible for inflammation. Cyclosporin, when used as a topical drop, does not cause the systemic side effects seen with the oral form of the drug. It takes several months of using the drops to see improvement.

Oral Medications
Antibiotics
Oral antibiotics can help to treat the conditions resulting in the compromised quality of the tearfilm. Antibiotics like doxycycline or minocycline, may actually help improve the lipid layer of the tears. They work by improving production and secretion of oils by the meibomian glands as well as by reducing inflammation of the glands. Oral antibiotics need to be taken for several months to achieve their full therapeutic value.

Nutritional Supplements
Omega-3 fatty acid and plant oil, such as borage and flaxseed oil, may help improve lipid and mucin layers of the tears. They may also render an anti-inflammatory effect. It may take several weeks to months to achieve an effect.

Antioxidants and essential nutrients
such as Vitamin, A, E, and C, and B6 may play a part in promoting normal ocular surface conditions,
as well as lacrimal gland health.
0.5% solution of hydrocortisone may prove beneficial when used for a brief period as eyedrops three times daily in combating some of the local irritative phenomena



Good Luck and keep us updated!

[Andros]

Hi Andros,

Thank-you so much for taking the time and trouble to reply to my message - it's very much appreciated.

I'm not on any meds at all - all I'm taking are Vitamin D and Folic for a deficiency possibly caused by being Celiac.

I was told that steroids weren't an option due to the side effects and the drops were ineffective, to be honest I would have preferred the option to at least disprove that theory.

I'll get myself organised and post all the blood-work that's been done - I'm just so confused by it all. I've reserached on the net and can't seem to work it all out.

I understand that the thyroid can be stimulated by the immune system to secrete too much hormone and that the auto-antibodies attack the back of the eye. But is there a feedback loop? In other words are more antibodies produced if the thyroid is hyper?

I've noticed a strange ache in the middle of my brain, but just assume that's down to the thyroid again, but need to check with the endo that the pituitary's not involved.

The strange thing is that I can maintain weight, but not on my face (quite wasted), all tests are negative including anything like HIV, so I'm assuming that it could be the thyroid, but why would it only seem to affect the facial muscles so markedly?

I'm beginning to ramble, but thank-you so much for your time - I'll post all my lab results and hopefully I can go from there.

It is true that treating the thyroid problem assists in treating the eyes but does not in and of it's self stop the infiltration. Most certainly the whole body has to be treated.

And yes, the more hyper you are is because of the antibodies on the rise. And it is a catch 22.

Boy, my face was ruined. I empathize with you on that one.

Perhaps the pain you feel in the center of your head is from periobital edema but you would be very wise to have some one check out the pituitary gland. By all means do so.

I have nothing but time and if I can help, I am glad to do so.

[frisby]

Hi again,

Sorry for all these posts but this is about the only means of advice and support I have at the moment.

I'm still waiting for the lab results to be sent to me - but can I ask a quick question?

I haven't been told if I'm hyper or hypo - the main problem I've had is with my eyes, last week I saw the eye doctor and had to have iodine eye drops administered (she was called away and they had to be given twice). The upshot is that I felt worse than I have in a long time.

Initially I was very nauseous and lost 3 pounds in weight over two days - my face has become extremely thin (it maybe that it shows more than on the rest of my body). Initally I thought, it was now cut and dry and that I'm hyper, here's the thing I also have constipation but my hair is becoming finer.

It's just so difficult when I'm faced with a consultant that seems unwilling to discuss what's going on and how I can do something to feel well again.

Is it possible to be hypo and have these symptoms of weight loss after a dose of iodine?

Sorry for the long post again.

[Andros]

Hi again,

Sorry for all these posts but this is about the only means of advice and support I have at the moment.

I'm still waiting for the lab results to be sent to me - but can I ask a quick question?

I haven't been told if I'm hyper or hypo - the main problem I've had is with my eyes, last week I saw the eye doctor and had to have iodine eye drops administered (she was called away and they had to be given twice). The upshot is that I felt worse than I have in a long time.

Initially I was very nauseous and lost 3 pounds in weight over two days - my face has become extremely thin (it maybe that it shows more than on the rest of my body). Initally I thought, it was now cut and dry and that I'm hyper, here's the thing I also have constipation but my hair is becoming finer.

I've been advised to take Bugleweed by a nutrionist, as it should help to block the iodine and reduce the hormone, but if I'm actually hypo I'm obviously doing exactly the wrong thing and could make matters worse.

It's just so difficult when I'm faced with a consultant that seems unwilling to discuss what's going on and how I can do something to feel well again.

Is it possible to be hypo and have these symptoms of weight loss after a dose of iodine?

Sorry for the long post again.

First of all, I love posts!! Can't you tell?? The more the merrier. So don't worry about that. I have the time and it is no trouble to help someone if I can.

That said, it is possible to be hypo and lose weight. Many do. Conversely, some with hyper gain weight. I was one of those much to my dismay.

The iodine may have put you in a tizzy. To be honest with you, mostly, iodine is contraindicated for those of us with "autoimmune" thyroid disease for a myriad of reasons.

Contraindications
Do not use bugleweed if you have an underactive thyroid condition or are having your thyroid examined by a physician
http://www.drugs.com/npp/bugleweed.html

I would tread carefully when it comes to taking herbs.

[frisby]

Hi again:ashamed0001:

Finally received my results today: I'm having problems copying them on the boards, but these I think are the most important:

TSH - 2.23 (0.3-3.18)

T4 - 20.00 (13.1-21.3)

IgA - 3.61

IgG - 10.18 (7.00-16.00)

IgM - 0.60 (0.4-2.3)

I'm no expert but the T4 looks pretty close to being the high end of normal.

[Andros]

Hi again:ashamed0001:

Finally received my results today: I'm having problems copying them on the boards, but these I think are the most important:

TSH - 2.23 (0.3-3.18)

T4 - 20.00 (13.1-21.3)

IgA - 3.61

IgG - 10.18 (7.00-16.00)

IgM - 0.60 (0.4-2.3)

I'm no expert but the T4 looks pretty close to being the high end of normal.

Some feel well w/TSH where yours is at and others not. "Most" of us feel best w/TSH down around 1 or less.

Now, that T4 is Total 4 which means it has bound, unbound hormone and possibly rT3 (reverse T3) as well. So, it is mighty hard to tell what portion your unbound hormone which is available for cellular uptake might be.

For future reference, Free T4 and Free T3 are the unbound hormone which is available for cellular uptake and that result gives a very clear picture of what is going on.

This site may prove helpful to you if you wish to familiarlize yourself with the various thyroid tests.

http://amarillomed.squarespace.com/howto

Seems like everything is in order w/ the other 3 tests. I found this interesting and you may also.........

http://www.labtestsonline.org/understanding/analytes/antibody_tests/glance.html

I do wish you could get the doctor to run TPO (antimicrosomal antibodies), Thyroglobulin Ab and TSI (thyroid stimulating immunoglobulin.)

[frisby]

Hi Andros,

I'd be dangerous if I engaged my brain - the T4 is FREE, does this make a difference?

Thank-you for those sites - they're really helpful.

[Andros]

Hi Andros,

I'd be dangerous if I engaged my brain - the T4 is FREE, does this make a difference?

Thank-you for those sites - they're really helpful.

It sure does make a difference. The Free T4 is high in the range and that is good if the patient does not feel hyperthyroid. Furthermore, it is strange to see your TSH so high when the Free T4 is so high in the range which is making me think that you are not converting FT4 too well and the only way to find out would be to get a Free T3 test run.

Plus, these kinds of numbers are "typical" in a person who is flitting back and forth from hypo to hyper. It is my suspicion that you may be headed towards hyperthyroid. A TSI (thyroid stimulatining immunogloblulin) lab test would be most helpful here to determine that.

Hugs,

[frisby]

Thank-you so much - you're a life-saver Andros.

I now have something to work on and don't feel quite so confused or lost.

I'm seeing the endo in a fortnight and will ask about the T3 and TSI.

[Andros]

Thank-you so much - you're a life-saver Andros.

I now have something to work on and don't feel quite so confused or lost.

I'm seeing the endo in a fortnight and will ask about the T3 and TSI.

Okay; Please make sure that is FREE T3 and of course the TSI. That would be very very good.

Do you at times feel hyper? Like trouble sleeping, heart palps, fast pulse, hot, maybe a bit shaky?

[frisby]

I think it has begun to be hyper - I have problems with sleep, fast pulse, heart etc and weight loss. It hasn't been too noticeable until the iodine incident and it just went through the stratosphere. The last few days the main problem apart from the above has been a pain that seems to be localised in the middle of my brain. I know that sounds strange, but that's honestly how it feels.

I have a feeling that if it is hyper at the moment it's relatively mild.

[Andros]

I think it has begun to be hyper - I have problems with sleep, fast pulse, heart etc and weight loss. It hasn't been too noticeable until the iodine incident and it just went through the stratosphere. The last few days the main problem apart from the above has been a pain that seems to be localised in the middle of my brain. I know that sounds strange, but that's honestly how it feels.

I have a feeling that if it is hyper at the moment it's relatively mild. I think this was where the nutritionist felt the bugleweed would come into its own, if it's currently either mild or subclinical.

That is why we see such disparity between the Free T4 and TSH. When the "Frees" are high, we usually see the TSH very low. I happen to know for a fact there is also a lag time. One does not catch up to the other to put it another way.

I do hope you wait on that Bugleweed. I don't think that would be a good thing and it could "skew" any further tests you may have as well.

[frisby]

Hi everyone - I've been doing some digging around on the net and just have a quick question about my results.

I know at the moment before the other tests are carried out I'm walking around in the dark - but if I do have a problem converting T4 to T3 would this only suggest hypo rather than hyper problems?

The normal TSH is what worry's me - surely if I were hyper this would be low.

[Andros]

Hi everyone - I've been doing some digging around on the net and just have a quick question about my results.

I know at the moment before the other tests are carried out I'm walking around in the dark - but if I do have a problem converting T4 to T3 would this only suggest hypo rather than hyper problems?

The normal TSH is what worry's me - surely if I were hyper this would be low.

This would depend on what antibodies and autoantibodies you have. There are "Binding, Blocking & Stimulating" autoantibodies and antibodies. It is a very very difficult field of study.

At a certain point, in regards to autoimmune thyroid disease, the antibodies tests are often more telling than the usual thyroid panel. To put it in simpler terms, the hormones are confused and don't know which way to go; up or down.

Getting TSI would either rule in or rule out hyperthyroid.

[Andros]

Hi everyone - I've been doing some digging around on the net and just have a quick question about my results.

I know at the moment before the other tests are carried out I'm walking around in the dark - but if I do have a problem converting T4 to T3 would this only suggest hypo rather than hyper problems?

The normal TSH is what worry's me - surely if I were hyper this would be low.

Have not heard from you in a while; hope everything is okay? If you are around, give us a shout!