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Worsening symptoms...menopause vs. complications of thyroid cancer
Thyroid Cancer | Last Active: 2 days ago | Replies (14)Comment receiving replies
As someone who is trying to find a medication with minimal side effects….I tend to think you should try a different medicine. Synthroid gave me a lot of side effects. the doctor tried raising my dose and lowering the dose but I had a lot of negative side effects. Tirosint is supposed to be the medicine with the least amount of fillers but I had an extreme reaction with it.
I had a partial thyroidectomy so half of my thyroid is still working and I am very sensitive to medications. At the current time, I am taking 50 mcg of Levoxyl 4 x per week (at one point I was prescribed 125mcg of Synthroid and feeeling miserable!) The doctor wants to use the 50 mcg pill (rather than smaller mcg pill) because it eliminates the coloring aspect (the dyes can affect some people). I had been taking Levoxyl 5 x per week and the doctor just said that I might be able to go down to 4x per week (No medication M-W-F) to see if the side effects improve.
I was also referred to a rheumatologist because the Endocrinologists and the surgeon feel that something else might be influencing me. Initial testing seems to point to another concern that could be causing some of the issues (and not side effects of medication) but I had to change Rheumatologists so I need to have more tests.
After changing doses and medications many times I have to say that it is worth trying different medication until you find one that gives you minimal side effects. The Levoxyl has eliminated many of the extreme issues and I am now trying to improve a few of the remaining issues. The colors of the pills change by dosage and my doctors all have commented about trying to use the white pill to eliminate the dye….thats why my dosage is to skip days instead of lowering the dosage to a different pill. I had a lot of side effects on Synthroid and my Endocrinologist said that a lot of people have issues with it, which surprised me…..everyone seems to take Synthroid! (I have not tried generic versions).
One thing I will mention is that following my surgery, my first Endocrinologist kept increasing my dose of Synthroid to “keep your TSH as low as possible to prevent cancer.” I just kept feeling worse and worse with side effects. I had to request a new Endocrinologist because the doctor was looking at blood tests and not listening to symptoms. The new doctor had me stop taking the medicine to see if anything improved and it did (right away!) The new Endocrinologist said he would try and get my numbers closer to what they were before surgery. We found that when my TSH number is very, very low (to prevent cancer regrowth), I have more side effects and feel terrible. The low TSH is not causing the issues, it just seems to go with the issues.
Finding the right medication and the right dosage is very tricky for some people. In my opinion, maybe you should ask your doctor about trying another version of medication. When my side effects were really bad, I found that keeping a symptoms chart with the dosage and the blood levels a good way to see changes. It is not good to just assume its your body aging…..the side effects brought on by medications and dosages being too high or too low can be severe and adding more medication (BP, cholesterol, etc) is not getting to the root of the cause.
Definitely look into changing medications and ask the doctor to consider your dosage…..minor adjustments can make a big difference. Good luck!
Replies to "As someone who is trying to find a medication with minimal side effects….I tend to think..."
Hi
It's very frustrating.
I refused 'suppression of my TSH.' and RAI Treatment post Thyroidectomy. (Total with 12 lymphs removed with a dissection of the lymph bed (2 lymphs affected withe papillary cancer)
The Endocrinologist also tried to delay my operation until 6 months but my surgeon and anaesthetist said NO ASAP.
So I got to work things out with my lovely surgeon.
5 years 3 months down the track after stroke, coming up to 5 years in feb.
My medication was the cheap levo .. which comes in bulk but very difficult to keep my TSH where my surgeon wanted. as the 25mg was Synthroid I changed fully to that/ Advantages were supreme. Sealed container, kiddie lock, condensation pallet inside, easier to get 1 out at a time. Proved to be reliable in the dosage. So I take 2 and 1/2 50s as it is WHITE. I have allergy to sulphur and others have Sulphites and Aluminium. My rash is disappearing over time.
Try 50s.
Also if you read Br/Dr Gary Clayman he advocates low risk for further malignancy keep TSH to low normal. I keep mine at 1.5ish. On my 4th year In have 2 lymphs calcified 8 and 7 and a 19mm x 9mm? Thymus also calcified. Tests to see whether they are growing and a Pet scan where they didm't take up iodine so didm't light up - this investigation is inconclusive. Another 6 mthly CT Scan with iodine is ordered. The other thing to watch is the Thyroglubin serum and antibodies level but I understand its harder to use these when you have some thyroid left in.
I read that it is better to have the whole thyroid removed as like mine when surgeon saw only the carcinoma in right lobe, another saw specks in the left.
Although this is 'food for thought'. Please keeo this in mind but it should be seen eventually in tests.
Also are you taking your levo correctly.
4 hours from food or milk or iron. I have mine in early am. Then wait 1 hour after for food, no milk, iron.
I take the Synthroid under tongue. It dissolves within 20 mins. I take my B12 Solgar like that but they are sublingual muggets. There is one in synthyroid but not brought into NZ.
With above directions I should not have seaweed, soya, tofu, too many greens. Read all about Mr Gary as he is the top surgeon for thyroid in the world.
Sadly my surgeon is retiring but I will stay under a surgeon rather than an endocrimologist. No thanks,
She prescribed Metopolol at Stroke when I said NO it will make me breathless, It did and caused pauses at night. I struggled 1 year 5 months later my request for a heart specialist was met and I was changed then left. Beta Blockers don't control my heart Rate. I have damage now.
I hope that you are being checked via ultra-sound for any developing changes. Papillary grows 1mm a year!
Please take care. Joy. (NZ)
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Thank you for sharing your experience. Have never tried anything but Synthroid as my original endocrinologist was adamant I NOT use a generic. Just a couple weeks ago my provider inadvertently renewed my Rx for Levothyroxine instead of Synthroid so will see if that makes a difference. I am at a higher dose of 125mcG 6 days/week.
I would like to get a second opinion from another endocrinologist. Original endocrinologist was in Sioux Falls and we moved to MN 4 years ago. Visited with local endocrinologist but he is planning to retire soon. Live in north central Minnesota, so not certain who a good thyroid endocrinologist is. I am willing to drive if I can get in with a reputable endocrinologist with thyroid cancer experience.