Molly b.'s Goiter and Hyperthyroid

I hope the following information will be of help to anyone who has a hyperthyroid condition. Hyperthyroid disorders don't always require the same treatment that I had. Multinodular goiter is treated differently than Graves' Disease - I had no medication options.

February 1997: I started waking up early. At 6 instead of the usual 8 or 9 am. I blamed it on the noisy people next door. I was extremely tired by afternoon. I blamed it on lack of sleep. (My husband has Periodic Limb Movement Disorder and it wasn't diagnosed until July 1998 - but that's a whole other webpage, when I get around to it). The family complained that I was grumpy. I snapped, "I am not!" I was absent-minded, and often felt like my IQ level had dropped. I'd been overweight for a few years - in hindsight, very possibly hypothyroid but never diagnosed, reaching a weight of 140 pounds. Until that weird overweight thing, I'd weighed 110 pounds from the age of 12 until I was 40. I thought the weight gain was our family trait of 'middle age spread'. Suddenly without any dietary changes, I had to buy smaller sized clothes every 3 weeks or so. I would feel ravenously hungry at times - as though I hadn't eaten in 3 days - although I might have eaten a sandwich, or even a complete meal a couple of hours earlier.

May 1997: I went to a doctor about feeling faint, dry eyes and weight loss. A series of blood tests showed that I was hyperthyroid. An appointment with a specialist was scheduled for October. I was given a prescription for Ativan, to take as needed, for 'anxiety attacks' which were really just rapid heartbeat reactions caused by the hyperthyroid symptoms. Five months is a very long time to be hyperthyroid with no treatment. Long term untreated hyperthyroidism can result in heart damage and more. If you have a hyperthyroid condition, don't delay getting it treated. I wouldn't have waited 5 months, if I'd had a choice. (This is what health 'cutbacks' do.)

June 1997: An ultrasound revealed that I had both a multinodular goiter and a thyroid cyst. There was a family competition going on here, I guess. My mom had a goiter for years and exhibited hyperthyroid symptoms. She had a thyroidectomy in 1971. My older sister had a cyst removed in the 1980's. She was euthyroid (had normal thyroid hormone levels) but the cyst was interfering with her breathing. The doctor prescribed Synthroid for about a month in an attempt to flood my thyroid and trick it into no longer producing thyroid hormone. It didn't work. I guess my thyroid was too smart for that. (Some sources say this is not an appropriate treatment for hyperthyroid patients.)

October 1997: I went to the specialist. By then I'd lost about 25 pounds, (from 120 lbs. in May, to 95 lbs.) If only I could bottle and sell 'hyperthyroidism weight loss' products. Except that it would be a health risk. The specialist ordered a Technetium 99 test. There was no need to fast before this test. This is a real blessing to anyone who has the 'starvation symptom' of hyperthyroidism! A radioactive substance was injected into my arm - I'd worried it would be injected directly into my thyroid. Within minutes the lab technicians were able to observe the iodine traveling through my thyroid. There were no 'cold ' areas, which would have indicated further testing was needed for thyroid cancer.

November 1997: The specialist's secretary called and told me I would be started on 20 mgs of Tapazole per day.

December 1997: I was scheduled for RAI ( Radioactive Iodine Therapy ) in early December. If the RAI worked, it might also shrink the goiter and cyst. I had to stop taking Tapazole 4 days before the appointment and then resume it 4 days after the RAI. The RAI was administered at the hospital in the nuclear medicine lab. I couldn't have anything to eat or drink from midnight the night before until the appointment time, but there was no hospital stay involved. The radioiodine was provided in what looked like an old soup tin - I'm sure it wasn't - and I had to sip it through a straw. This was followed by a couple of glasses of water. Then I went home again. I was told to have a TSH blood test every month. The December TSH results were normal.

February 1998: The specialist's secretary called and said that the January TSH level result was high. I was now hypothyroid. I had to stop taking Tapazole and begin 75 mgs of Synthroid daily. After 4 weeks I had to have another blood test. This would be necessary every four weeks, the Synthroid dosage to be adjusted as required, to give TSH level results in the euthyroid range. This was the expected result of the choices I had - either surgery to remove the thyroid or RAI to shut it down to stop the hyperthyroidism.

March 1998: TSH levels were within normal range. I noticed I felt much calmer than last year at this time when I was hyperthyroid. I was still trying to gain some weight. I had reached 108 pounds just before I started on Synthroid, but lost 5 pounds shortly after that. I remembered that when my mother had thyroid surgery, the specialist told her to make sure that she warned her children they would most likely develop thyroid problems eventually too. It seems that my thyroid condition occurred so slowly at first that I didn't notice the symptoms that I should have been watching for. Once the signs were obvious I was too slow-witted to identify what was happening. I guess the doctors I went to during that time for other things were too! If thyroid conditions run in your family try to make sure you pay attention to any symptoms that arise.

April 1998: TSH levels were .25. Normal levels for TSH tests here are .2 to 6.0. My Synthroid has been adjusted down to 0.05 mg from 0.075 mg. The doctor said the dosage works just opposite of what one might think - Lower thyroid hormone replacement dosages cause higher TSH values.

May 1998: I have more energy, feel less tired and no longer have muscle aches. My eyes haven't felt irritated. I think there's less hair fallout than even a couple of weeks ago. I weigh 108 pounds - a slight gain. My fingernails have been growing fast and sometimes my voice is quite hoarse. I'm having trouble swallowing once in a while and there's some pain on the right side of my neck where the cyst is located. I've been getting very hungry at times. I've been waking early the last few days which may be caused by (not-thyroid-related) back pain. I've started going to a chiropractor for treatment of pain in my left shoulder blade - no positive results from the regular medical profession. The pain feels like there's a knife in my back. This has been an on and off problem for several years. Does somebody somewhere have a voodoo doll with my name on it?

June 1998: I heard nothing from the specialist after the May TSH test so I can only assume the results were in the normal range. I wonder what the T3 and T4 results would be if they were monitored too. I'm not sleeping in any better but I've gained another pound ( hurray - one more and I'll be at my old, normal weight ). I've recently figured out that I'm coughing at night and/or in the early morning sometimes. This has happened off and on for a long time - I'd blamed it on smoking too much the previous day. Funny how we blame smoking for a lot, but it's not always the cause. Coughing is probably waking me up. I guess it may be another symptom of a goiter and cyst.

July 1998: I returned from a few days' visit with my sister. I did a lot of walking and really noticed an improvement in my physical condition. A year ago I'd have been out of breath, had a pounding heart and aching leg muscles. If only I wasn't still waking up at 6 or 7 am every morning.

October 1998: I'm feeling better. I'm busy with a lot of things. I had no energy to do very much at all a year ago. My regular visits to the chiropractor have been worthwhile. I cleaned the bathtub this morning and never once hesitated, worrying that I would be in pain by afternoon. My TSH levels have been normal. I insisted on having an ultrasound done in August as I was still getting discomfort in the area where the cyst is located. I asked my family doctor for copies of the ultrasound results which are now posted on another page on this site. The chiropractor said he thought the discomfort was probably muscles and it seems he was right. My dry, uncomfortable eyes problem has been gone for a couple of months - maybe permanently? I've finally started to sleep in until 8 or 9 am like in the 'old days'. I don't know if that's because of the thyroid treatment or the back/neck chiropractic treatments. Maybe it's both. I weigh 108 pounds, still not quite up to my old normal 110.

January 1999: I now weigh 110 pounds which is what I consider my 'normal' weight. It's been just over a year since I had RAI. I would really like to know - now that I'm feeling so much better and back to a semblance of mental alertness - why the doctors didn't start me on Tapazole and on medication to alleviate the awful hyperthyroid symptoms I had between May 1997 and October 1997 (a 5 month wait until I received treatment when the specialist finally had time to see me). It seems ridiculous that the family doctors/general practitioners I went to during that time let me suffer and just passed the buck ("Nothing we can do, you must wait for your appointment with the specialist", they said). If I'd been a cat with a hyperthyroid condition (cats can have hyperthyroid problems) I'd have got into a veterinarian in less time. There'd have been humane societies to see that I got immediate medical care. I haven't had any coughing in the middle of the night episodes. I think the May/June problems with this could be an allergy - something that's not in the air this time of year, or possibly house dust - the house is cleaned more often now than before.

April 1999: I'm waiting on a callback from the specialist's office. Since I've been going to the lab once per month for a TSH test since January 1998, and had only that one Synthroid dosage change one year ago, I don't think I need to go in every month. The staff at the nearest lab are always in a big hurry to go on to the next lab rat - I mean patient - so they never let a person use that little cotton ball long enough to stop the bit of bleeding from the needle. A couple of months ago the bandaid came off when I rolled my sleeve down. I didn't notice that until I got home. Luckily the blood didn't permanently stain the sleeve:( Last month, for the first time ever, I had some swelling in the area where they took the blood sample. I've never had that happen before, but I guess it's not unknown, nor anything serious. I now weigh 114 pounds. Is this good or not? Am I going to have a weight problem?! Other than a low sodium diet during my first pregnancy for temporary health reasons, I have never had to diet in my life. (Except for a time when I couldn't afford food - but that's a whole other webpage, when I get around to it).

Later in April: I received a call from the specialist's office staff. The TSH tests have all been normal, so I'll only need to have a blood test every 6 or 12 months now. The specialist is turning things over to my regular doctor and won't be involved any longer.

September 1999: Nearly time for a six month TSH test. I'm feeling okay, and am up to 118 pounds. Not sure when this weight gain happened. I'm not used to having to weigh myself, but I suppose anyone who's on thyroid hormones really should weigh themselves regularly, just to catch any potential hyper/hypothyroid symptoms early.

October 1999: I stopped going to the chiropractor last summer, after pains started in my hand, arm and wrist, in addition to the intermittent back and shoulder pain. I'm waiting for an appointment with a rheumatologist, taking Celebrex (celecoxib) - an anti-inflammatory, and using an ice pack often. The 6 month TSH test result was normal. I'm 119 pounds now. I'm comfortable with this. I refuse to worry until I gain at least another 2 or 3 pounds, which may be next February or so, according to my calculations...

July, 2000: The TSH test in March 2000 was in normal range, and I feel fine. Between January 2000 and early April 2000, my weight increased to 122 pounds. [ I was hungry all the time, and constantly 'nibbling' on something }. From mid-April until now, I've gradually lost 8 pounds. I've not felt like snacking all the time. [ Could be due to summertime, warmer weather and sunshine?? } I now weigh 114 pounds, again. I've also started an exercise program, for the past 6 weeks. It was recommended by the specialist I went to, for my back pain. The diagnosis was weak muscles, not arthritis. { I suppose I should be glad about this, but I find it almost embarrassing. Who knew such pain and discomfort could be caused by bad muscle tone?? } BTW, the exercises help, and I feel better already.

Update May, 2001: Still normal TSH levels, and I'm 109 pounds, just can't seem to gain a couple more, although I'd like to! I've continued to exercise, 3 times per week. It's helped the back pain considerably.

Update February, 2002: Well, over the past few months, [since November, 2001] the doctor's tests revealed that I've entered menopause [I'm 48 years old]. I've been prescribed Premarin, and am taking it mainly for the 'feel like I'm going to get dizzy' feelings I've had. This symptom, as well as early morning hot flashes and mid day cold chills have all been alleviated. I quit smoking [using nicotine patches]. I've experienced weight gain, but since Premarin may cause an increase in weight, and quitting smoking always causes at least a small increase in weight, I'm not too surprised that I've gone from weighing 110 pounds in September, 2001 to a current [February 1] weight of 126 pounds. Since an increase in weight can mean that the dosage of Synthroid [or other thyroid hormone replacement pill] will need to be changed; and because an increase in weight *may* be a sign of hypothyroidism; I plan to have my doctor check my TSH levels, just to be safe. He did that test along with the FSH, which showed I'd entered menopause, in November, and the TSH was fine then.

Update February 9, 2003: My TSH levels continue to be in normal range, despite the fact that I've gained a total of 50 pounds since I quit smoking, 15 months ago! I weigh 160 pounds, and have never been this heavy in my whole life. In high school, I weighed 110, and that's what I weighed when I quit smoking.

Everyone tells me how good I look, so I can only assume I looked terrible at 110 pounds lol! [110 pounds is about 8 stone, and 160 pounds is about 11.4 stone, for those of you in Britain].

I've done a bit of research on weight gain, and have learned that by the time a woman reaches the age of 40 or 45, her metabolism begins to slow down, and weight gain does occur -- so don't go blaming the thyroid, ladies! It *may* not be!

Thankfully, I have not experienced any dizzy spells in quite some time, and even the hot flashes seem to be getting farther and farther apart, so perhaps I'll be able to stop taking Premarin soon. Menopause symptoms can last for 10 years or more, but may disappear long before that...so I'm hoping.

The back pain gets bad if I don't exercise for a few days, but I'm okay as long as I do the stretching exercises, and use weights -- I used to use 3 pound weights [upper body exercises] but have now got 5 pound weights, as the 3's were too light.

April 26, 2003: I haven't gained any more weight, at least, just holding steady at 160 pounds. I've discovered that the Zyprexa medication I'm taking can also cause weight gain. So. between quitting smoking, Premarin, and Zyprexa, I have no way of knowing which might have been involved in the weight gain! Oh well, I will watch my diet, and not eat too much junk food. Luckily, I love veggies, and will try to eat sensibly.

Update December 29, 2003: I am still on that same dosage of Synthroid, no changes there. I've begun a Pilates routine and continue with my modest weightlifting program as well. I've cut back on the dosage of Premarin to the lowest available, and so far no night sweats etc.

I weigh 157 pounds, without any special diet plan. This New Year's though, I intend to cut out all the potato chips and so on, in an effort to lose a few pounds.

Update June 16, 2004: No change in my weight, and I'm still on the same dosage of Synthroid. It's been difficult to get into exercising lately - with the nicer days, I spend more time outdoors, in the yard, but I only sit or garden a bit, no other exercise! I am still on the weakest dosage of Premarin ( 0.3 mg ) While I tried cutting back on that dosage, I began to get really bad night sweats, so I guess I'll be on it daily for some time yet. It turns out that some medications, including Zyprexa have a 4 to 10% chance that they will cause weight gain -- I do think this is so, in my case. The back pain has abated greatly -- in fact, since I am *not* exercising very much lately, I don't have nearly the discomfort that I used to have - yay!

Update October 2, 2004: It's time I began to exercise again. My sister and I will be travelling in England, Scotland, and Denmark next year, for a two month period. We will be doing a *lot* of walking, and will haul our belongings about in back packs. This calls for some stamina and strength, so I am beginning a training program that will involve stretching, weights, and Pilates exercises. We will be getting to the U.K. and back on the Queen Mary 2! While my sister has crossed the ocean 6 times, always on board a ship, (she is afraid to fly) this is a first for me.

Update March 12, 2005: Just recently had three toenails on my left foot surgically treated for ingrown/overgrown nails. Still recovering, so no exercise program started yet! Oh, and sis has a major ear problem, and may need surgery this year, so our trip overseas is postponed indefinitely.

No change to my Synthroid prescription, although I have gained more weight - up to 170 pounds!

Off the Premarin now, even though I get hot flashes upon waking quite regularly -- there was a report in the news recently that estrogen use can cause incontinence! Another reason to stop taking this stuff! Wish me luck, that the hot flashes don't become unbearable -- I really don't want to be back on that medication...

Update May 12, 2006: Still at the same weight...I really have to try a diet and exercise plan...I did start to exercise regularly and eat more veggies and fruits beginning in January, but then I started an amateur radio class and with all the studying plus the classes, I stopped exercising. Have had severe hot flashes the past month, and am almost ready to ask the doctor for a Premarin prescription again - except that every time this happens, and I think the hot flashes are here to stay - they stop for a couple of months. So I am going to try to hold off on the pills for now.

There are no plans from my sister regarding that trip. Maybe my husband and I will do some travelling next year, although he has ankle problems and may decide to have surgery on them within the next year...

Update November, 2006: No change. Still on the same thyroid hormone replacement dosage. And back on Premarin. No more hot flashes now! What a relief, lol.

February 2007: No change. Still on Premarin. My weight has remained about the same. Since we are travelling to Germany and Denmark in May, and we are going to be walking a lot, I have started an exercise program, using a home gym, and a Gazelle.

September 2007: Had a wonderful time in Germany and Denmark in May. I had no trouble walking, so despite the weight I guess I am not in as bad shape as I thought, or the exercise in preparation paid off. I now have a treadmill, and boy! does that give a good workout! I recommend one to everyone!

August 2010: My weight had gone up to 184 pounds. With a change in eating habits - breakfast, a high fibre cold cereal and soy milk, and lunch - piece of fruit or green salad or yogurt, snack of high fibre fortified bar in the afternoon, and less food on my plate at dinner, I have lost 5 pounds, and plan to lose more. I have recently signed up at Medhelp.org and I'm using the food diary and weight diary. This is free, can't beat that!

No Premarin anymore, and while I did try a natural product called Promensil for a while, I stopped using it as well. Still get a few hot flashes, but not as many.

November 2010 update: I have lost 17 pounds!

September 2011 update: I have lost 50 pounds. Regular exercise, mostly on the treadmill, weights occasionally, and a 1200 calorie a day diet. I am 127, with a goal of 120 pounds. Still tracking weight, calories and exercise at Medhelp.org For those interested in finding out what their daily calorie count should be, see the Mayo Clinic page.

molly b.