[Tissy]

#1058840

Hello, I was diagnosed with Graves Disease about 6 years ago when my thyroid hormone levels went sky high and I was given Radioactive Iodine. This resulted in me having hypothyroidism and I take replacement thyroxine.

The dose I was prescribed, 125 mg, has never changed and at each blood test I am told I am in the normal range.

However, right from the start I have felt tired despite falling asleep in the chair and sleeping all night, my weight is steadily increasing, I have itchy skin on my shins, my eyes are often puffy, I have very little energy, I know my memory is not what it was, I don’t retain new information easily, and my eye sight is pretty awful, I wear glasses for driving, reading and TV. Sometimes I feel dizzy, and even typing this is making my head ache.

I really feel that my thryroxine levels are too low. Surely if I had lived for many years with a higher level, my range would be higher. However the GPs tell me it is my age, and they offer me appointments with nutrionalists. The puffy eyes, I am told, are due to pollen allergies.

I really feel like no one is listening to me. I am only in my 50s and I want to be normal again. I would really like to know if anyone has presented any new evidence or research to their GP. I am so tired of being sent away.

Many thanks in advance for your help.

[snelsen]

#1170336

Hi, so glad you found this board/forum. i am compelled to write a quick note to you now, and perhaps more later. I’m walking out the door in a few minutes.
To begin-if you have not done this, I suggest you begin to keep you OWN medical record file at home. You need to complete a medical release of information form, or whatever they call it where you are. This is a form you complete to request that your (I suggest) labs and the notes of any visit you had to the doctor be sent to your home address. The labs should have the ranges next to the lab results. You will be much more informed that way.

Do you have an opportunity to find an endocrinologist? If you need to get a referral, ask the doc who is most likely to make the referral. Do everything you can to find an endo who works with Graves patients.

Sometimes it is helpful to say where you live. And there are some references in recent posts by Kimberly telling you how you can find endos in your area.

I am just a fellow patient here, not giving advice, really, but it sure does seem to me that you have hypo symptoms, no matter WHAT the labs say.
It is not clear to me if the way you feel now, is the way you have felt from the very beginning of when you began the thyroid hormone. And this is one of the reasons you really would profit from seeing a good endocrinologist, armed with your history and your symptoms.

For eyes-because you have Graves’. I suggest you make an appointment with a neuro opthalmologist for a baseline work up of your eyes and their symptoms. In the meantime, eye drops, lubricant at night might help.
You can probably do your own experimenting with allergy medicine, take it faithfully, see if any of them help.

It seems you need a sympathetic, compassionate and knowledgeable doctor, to help you slug through this, and whatever the cause, help you feel better.
The skin on your shins is another sign that all your stuff is Graves’ related.
Having said all I’ve said, do you have any chance of seeing a good endo? It sure sounds like the doc you see is not helpful for you at all. You want to feel better.
Shirley

[Tissy]

#1170337

Thanks for your reply, its good to have something to focus on and I will request copies of my records from the GP.

I am in the UK, and I am sure I can get to see an endocrinologist. I have seen one before I had the RAI, but not since. I need to get myself in gear.

Thanks again, its good to somewhere to share.

[Kimberly]

#1170338

Hello and welcome! I agree with Shirley’s comments about getting copies of your medical records. Make sure that your doctor is testing Free T4 and T3 in addition to TSH. Once you are stable and feeling well, TSH testing alone is the standard practice. However, since you are still having symptoms, it’s certainly worth testing T3/T4 as well to see if that can shed some light on what is going on.

Below are links to the referral sites that Shirley mentioned. These are mostly U.S-based, but I believe there are some listings in the U.K. as well. Hope this helps!

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

American Association of Clinical Endocrinologists
http://www.aace.com/

American Thyroid Association
http://www.thyroid.org/

On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. Be sure and select the specialty “thyroid dysfunction” when doing a search on this site. On the thyroid.org site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.”

[Tissy]

#1170340

Thank you once again for your support. I am so pleased to have found a forum for Graves Disease. I am in the UK, but have not found a support forum based here for Graves.

I have been to my GP, and have requested that I be referred to an endocrinologist, the same one I saw several years ago before I had RAI. My GP arranged for blood tests and, wouldn’t you guess, my thyroid levels are still in the normal range. Other tests were negative.

I am still waiting for the results of an antibody blood test. Do you know why I would be given this blood test? it is already confirmed that I have Graves Disease.

My shins are still itchy, and my upper eyelids are feeling quite sore, flaky, puffy again this morning. I often feel short of breath, and foggy. Does this make sense to anyone?

It seems my request to be referred to the endo has been shelved. My GP suggests I have mild depression and will feel better when the sun shines.

Any advice would be appreciated. I really don’t want to be seen as a hypochondriac, or waste my GP’s time.

Thanks in advance. x

[Kimberly]

#1170339

Hello – We’re just fellow patients here…but I wonder if since you seem to have some eye and skin issues, the antibody testing might have been done as a preliminary step before referring to an ophthalmologist or dermatologist. Graves’ can potentially affect both the eyes and the skin on the front of the shin…even if thyroid hormone levels are normal.

Obviously, you would need a referral to a specialist to determine for sure if these symptoms are related to Graves’.

The bottom line, though, is that YOU know your body and you KNOW when something isn’t right. Please keep fighting until you find someone who will work with you to get some relief.

[Tissy]

#1170341

Thank you, Kimberley x

[Bobbi]

#1170342

If those shins are itchy, you can often get some relief by moisturizing well. Get a thick, creamy moisturizer. Apply it to WET skin. And do this two times a day (a.m. and before bed). Also, before bed, you can apply the moisturizer and wrap your shin in plastic wrap to hold the moisurizer in. It does a wonderful job of softening and soothing. I put petroleum jelly on wet skin at one point (and then wrapped) to get extra moisturizing effect. But a good, creamy moisturizer can work also.

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