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Dear Fellow Patients,
Hope you all have a pleasant weekend. I’m feeling very confused and unsettled since I learned that my TSH about 4 weeks ago had increased from 0.51 to 11.2 without any change in my daily doze of Tapazole of 20 mg q day. My latest TSH done just a few days ago was 14.0 and now my Tapazole was decreased to 15 mg q day. I’m just wondering if this change could be due to the steroids I’ve been on since mid May of this year when I received 15 infusions of 1000 mg of Solumedrol IV and the high doses of oral Prednisone I’ve been on since mid July — 60 mq q day, but now on 40 mg q day. My white blood count is still very high at 19,000 — I’ve been told that the normal range is 5,000 to 9,000. I don’t have any obvious infection. Do you think the steroids have finally “caught up with me” or that something else is going on with my thyroid. So far, the endocrinologist hasnt been able to give me an answer. Have any of you experienced a similar dramatic increase in your TSH? and, if so, what explanation did your MD give you. I plan to pursue this next week and try to get some answers. I’m extremely fatigued to the point that it’s difficult for me to climb stairs and stay awake after 9:00 PM. Could I suddenly become hypothyroid without having had any surgical treatment or RAI? Any info you might have would be most helpful. Thank you again for “being there”. NinaHi Nina,
It sounds like you have a very complex situation going on (taking Prednisone and Tapazole), and if your doctor can’t give you an explanation, of course no one here is going to be able to. Keep asking questions and perhaps you’ll be able to pin him down. Do let us know what you find out.
For what it’s worth, in my experience fatigue could easily be from being suddenly hypothyroid. Generally when I’ve been on high doses of steroids I’ve felt quite the opposite (energized and “high”), and have only felt a lack of energy when I went off the steroids. You could be different though, as the fact that your white blood cell count is high can contribute to fatigue.
Prednisone DOES inhibit the immune system. That is precisely the point of giving it to people with autoimmune diseases: to slow down the antibody attack. The disadvantage to this is that it also inhibits the good antibodies that protect us from bacteria and viruses, making them work harder to have the same effect.
Tapazole (and other antithyroid drugs) also work in a different way somewhat as immunosuppresive drugs, lowering the number of thyroid stimulating antibodies in many people; in some eliminating them completely over time. In rare cases it can suppress the immune system too much, causing a dangerous rise in the white blood cell count.
It’s possible that your TSH was rising because the Tapazole was working to lower your antibody count, and it was naturally time to lower your Tapazole dose. This is to be expected in the course of your treatment, and most people are maintained on a much smaller dose than this after the initial treatment.
Many people can maintain on as little as 5 mg per day, and if they take more, become hypothyroid. It sounds like your treatment is going well so far. If your requirement for Tapazole failed to lessen, it would be a sign that you probably were on a long road if you hoped for a remission.
I hope this answers some of your questions. Again, let us know what your doctor says.
Dianne W
Online FacilitatorDear Diane,
Thanks so very much for your response and the info you provided. Perhaps I should have explained that I have a moderate to severe form of Graves Eye disease, which became a crisis in mid May when it seemed that my optic nerve was affected — thus endangering my vision permanently. I’ve been told that only about 5 percent have the optic nerve involvement. That’s why the eye MD insisted on the IV infusions of SoluMedrol — I had a total of 15 between mid May and mid July. Orbital deompression surgery was strongly recommended, but, because I was so fearful of this invasive surgery with potentially serious side effect, Iwas given the option of orbital radiation treatments. I did have a total of 9 treatments and they seemed to have helped, but the radiologist wanted me to continue on the oral Prednison for a few months with a slow taper. That is what I’m doing now. My TSH remained below 0.6 until about a month ago. At this point my eyes seem to be stable. Perhaps I made the wrong decision re not having the eye surgery as now, maybe, I wouldn’t be on the steroids. Do you think my condition sounds serious
because of the dramatic change in my TSH. I do have minor cold symtoms, but nothing serious. I don’t want to seem like I’m over-reacting to the sudden change in my TSH, but must admit to being concerned. I’m generally healthy except for hypertension, but am not a young person —I’m not 66, and never had any symptoms until April of 2006 when my right upper eye lid was puffy. The Graves wasn’t diagnosed until the Fall of 2006. I was found to have nodules on the thyroid in 2002, but all the tests showed that they were “innocent” and probably would never be a problem. I was very shocked to learn that my thyroid had become toxic. I hope this additional info helps. I will let you know what the endocrinologist says when I talk to him early next week.
Thanks again for your response. NinaDear Nina,
I had read your previous posts and was aware of your thyroid eye disease and that this was why you are on steroids. That fact that your TSH is rising should be a sign that your hyperthyroidism is now under control—a little too well, in fact. Again, check with your doctor on that, as I can’t say what is happening in your case, but in general that could be what it means.
It’s not good for our eyes to be hypothyroid either. I imagine your doctor is lowering your Tapazole dose to bring your thyroid levels back a bit higher toward the normal range. Your TSH should fall toward normal when that happens.
Whether or not you will want the orbital decompression surgery may be a difficult decision. I found it’s nothing to be afraid of, but many of us who’ve had have it done were able to wait until our eyes had time to settle into the “cold phase” rather than on an emergency basis when the disease is active, threatening the optic nerve.
I’m sure you’ve made your decision based on the best information your doctors have given you in your individual case. If at some time in the future you want the decompression, you can still have it done. For me, it was the surgery that helped the most for improvement both in comfort and appearance. I thought it was worth it for those reasons alone, and the surgery wasn’t as bad as one might think to go through or recover from. Perhaps you will have enough improvement from your current treatments that you won’t need it. I hope so. At the very least, I hope the treatments will stabilize your eye disease.
The eye disease can be a long and difficult road, or it can resolve well and go smoothly, and unfortunately there’s no way to predict what will happen. I’m sure you’re aware that smoking makes the eye disease worse, but other than that, there’s little a person can do that can help make it better, other than follow your doctor’s recommendations and use comfort measures to keep eyes from drying out (drops, ointments, masks or taping at night), and if swelling around the eyes is a problem, elevate the head of the bed at night.
I understand that all this is scary, when you have no idea what may happen with your eyes and the doctors don’t explain exactly what’s going on. I remember feeling really lost and out of control at that point, and quite a bit angry. I can learn to cope with difficult things that happen to me, but how can I cope when I don’t know what’s happening? For me, fear of the unknown was the worst.
So what I really had to do was learn to take one day at a time (as they say) and not borrow trouble from the future. I’m still needing to do that, as eleven years later I’m still having eye surgeries and am retired a year early on disability because of severe dry eye and double vision, among other problems. This is not what I envisioned for my life. (Jake knows all about this kind of struggle!) But all we have is today, and to have the BEST day we can, in spite of what our health brings. This disease is not who I am.
It sounds to me like your doctors are on top of things, and probably need to explain to you better what the treatments are supposed to accomplish and what they ARE accomplishing, and then perhaps you will feel better about it all. When do you see your doctors next?
Dianne W
Online FacilitatorDear Diane,
Thank you so much for your message and the time and thought you put into it. It was most helpful and comforting. My Tapazole dose has been reduced to 15 mg q day — from 20 mg q day and I will be having a repeat TSH test on 08/21/2007. Also, a ultrasound of the thyroid was ordered and will be done on 08/21. The endocrinologist was somewhat concerned re the increased size of the thyroid. I’m feeling a bit more energetic than I was a few weeks ago, but still don’t feel like myself. I’m still taking 40 mg of Prednisone q day, but this will be reduced to 30 mg starting next week. My eyes seem to be somewhat stable at this time — I imagine this could be due to many factors including the radiation, the steroids, and my changing thyroid function. I try to take one day at a time and treasure each day — I feel that, in some ways, I’m not giving enough love and attention to my husband, who had prostate cancer surgery last year and is experiencing some emotional effects from the surgery — such as his sexual functions. My lack of energy, etc. hasn’t helped, but I’m determined to try to remedy this in some way. My dear mother passed away about 2 years ago — she was my best friend. I wish I could relive the last 6 months of her life so I would have been more attentive to her emotional needs, not just the physical, etc. I know regrets like this are normal. Thank you again, Diane, for sharing your thoughts and experiences and your comments re the decompression surgery, which I decided Iwould have if necessary to save my eye sight. Most sincerely, NinaNina, I’m glad to hear you’re feeling a little better, and hope all goes well with your thyroid ultrasound. With everything you have going on with your body, I find it admirable that you’ve spent time thinking about your husband’s emotional needs regarding his prostate cancer surgery. I hope he’s as attuned to your needs as well, and I’m sorry you have grieving and regrets over your mom’s death at this time too. Sounds like you’ve got good perspective on these issues, though.
Any chance you can make it to the conference in Cincinnati in October?
Dianne W
Online FacilitatorHello Nina; my heartfelt sympathy for all that you
have been going through, you are doing the right thing
by taking one day at a time and concerning yourself with
the needs of others. I heard someone say once ( always look
through the front windsheild of life not the rear window )
sounded like very good advice to me.I’ll close with this poem
I’ve been through the valley of weeping the valley of sorrow
and pain but the God of all comfort was with me to help and
sustain.
My Best LouisaI’ve been reading the post lately and it’s talked about the levels of TSH. I had my thyroidectomy back in June of this year and Orbital Decompression in October. My reason for the post is the fact that I haven’t been on any type of thyroid medicine for the past 4 months due to my totals on TSH. They have been, .003, .003, .000, .001. I go see my Endo if a few weeks and I just had more blood work done this week. Is the TSH that important to your recovery? Thank you.
Diane
Hi Diane,
If you’ve had a thyroidectomy, you didn’t say if you are on thyroid replacement or whether your doctor says your blood levels of thyroid hormone are normal, or if you’re still hyperthyroid, so I’m answering your question as a general reference.
The TSH normally reflects whether we are getting the correct amount of thyroid hormone in our body tissues. If we are not getting enough thyroid hormone, the hypothalamus senses this and tells the pituitary gland to produce more Thyroid Stimulating Hormone (TSH), so the TSH number goes high when we are hypothyroid. When we are hyperthyroid, or receivng too MUCH thyroid hormone, the hypothalamus senses this and tells the pituitary to stop production of TSH, and the number goes very low.
You are saying that your numbers are very low. This can indicate either that you are still hyperthyroid or it can indicate that your pituitary gland THINKS you are still hyperthyroid (when you actually are NOT).
It is possible for those of us with Graves’ Disease to have a very low TSH that would usually indicate hyperthyroidism, even when we are hypothyroid or when we are adjusted on thyroid replacement hormone. I had a non-detectable TSH for over six months after I became hypothyroid after RAI.
Doctors used to think that the pituitary sort of “went to sleep” because it had been hyperthyroid for a long time. However, they noticed that this only happened in Graves’ Disease patients and not in other patients who were hyperthyroid. They now have good reason to believe that it’s the antibodies themselves causing the TSH to remain low, and it’s the people whose antibodies remain high after treatment who have these suppressed TSH readings.
If yur doctor has normalized our thyroid levels, having a TSH level that’s still artificially low shouldn’t affect our recovery. The main problem with this is that the best way for our doctors to tell whether our thyroid levels are optimal is by testing our TSH levels, and if the TSH isn’t responding, they have to go by our Free T4 and Free T3 levels instead, which are not as accurate (as there is a wide range of normal).
In time following treatment, most people find their TSH will become responsive again and their doctor will be able to use it to test blood levels.
Dianne W
NGDF FacilitatorCan anyone explain TSH 3rd generation? I understand (?) TSH, but not the 3rd generation.
Thank you for any help,
JulieOK. “Third generation” refers to a type of testing for TSH currently used — it can detect significantly less thyrotropin (TSH) than earlier types (or generations) of testing techniques. “First generation” test techniques, for example, could not show quantities of TSH less than 1.0 mlU/L . Second generation techniques — developed in the 1980’s — could determine significantly less TSH, in a shorter period of time: 0.1 mlU/L. Third generation tests can detect 0.01 mlU/L.
So, basically, the test simply detects more minute quantities of TSH and helps the doctors with our treatment issues.
Bobbi — NGDF Online Facilitator
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