Worsening symptoms...menopause vs. complications of thyroid cancer

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!

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.

I am curious, have you ever asked your doctor to try a higher dose of Synthroid? My t4 blood tests have always been in the normal range, it has been the symptoms/side effects that has caused me to change dosages. At one point I was prescribed 125 mcg 7x a week and I was miserable. The fact that I feel so much better on a significantly lower dose of medicine made me realize that the blood work cannot be the only driving force for medication; I had to reduce the negative side effects. In my opinion, it is worth trying raising and lowering doses (with your doctor) to see if the changes are improvements. I don’t know what is considered a high dose of Synthroid, however for someone without a thyroid your dose seems kind of low (My mother was on 125 mcg 7x per week and she has her thyroid!).
As for finding a new endocrinologist, maybe the Mayo clinic can advise. My newest Endocrinologist does Telehealth. Although we have to continue to get annual/semi annual scans to monitor for cancer, however you might be able to get an Endocrinologist who uses telehealth for your appointments. Talking about side effects and medication is something that can be managed by telehealth so you might be able to have a doctor who is further away.
After being miserable with my own side effects and having them reduced by medication/dosage changes, I would definitely encourage you to keep looking at your medication and your dosage before you assume the symptoms are related to menopause or some other aging event. Good luck!

Thanks for the information. I have asked about a higher dose of Synthroid, but because TSH is at higher end of normal they won't adjust to a higher dose than my current 125 mcg x 6days/week. My current provider and I are scheduled to meet in a week to discuss hormones more. I am going to ask her for a referral to an endocrinologist that specializes in thyroid cancer.
I think Mayo is likely my next stop. It is worth the drive if I can get some answers and start feeling better.

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)

I’m afraid I don’t understand your doctor’s thinking. When my dose of Synthroid kept getting raised, the doctor was trying to get my TSH lower and lower….every increase resulted in lower TSH. When my TSH was very low I had a lot of symptoms so my new Endocrinologist was trying to get my numbers into the range where the side effects were reduced. If your TSH is at the higher end, the increase should cause the TSH to go down and MIGHT help with your side effects. Definitely ask for a referral for an Endocrinologist who specializes in Thyroid Cancer! if she does not give you one, you might want to ask the surgeon for it….no one should suffer without exploring changes in medications/dosages to see if the symptoms improve. Good luck!

Thank you Joy for sharing your story. I am so sorry to hear about your stroke and heart conditions. Some of the material I read talks about the connection between thyroid and high cholesterol, high blood pressure and diabetes type 2. That concerns me as I have never had had high cholesterol/blood pressure until my thyroidectomy/Synthroid txs.
It is hard to know which medical provider to listen to as they all say something different. After a move to a remote area in central Minnesota 4 years ago, I have found it difficult to find any medical specialists who understand thyroid cancer. I had a full thyroidectomy with lymph node dissection followed by two courses of Radioactive Iodine in 2016 & 2017. My original endocrinologist ONLY wanted me to use Synthroid so that is what I have taken since May 2016. Not until my refill a couple weeks ago did I try Levothyroxine because the pharmacy/family practice doctor can never remember I use Synthroid. In the past I have always made them change to Synthroid, but this time I decided what the heck...Synthroid doesn't seem to be working so I'll give Levo a try.
Have not had an Ultrasound since 2020 as again Family Practice Provider does not understand the need since TSH is in normal range. This is why when I see her in a week I am going to request a referral to an endocrinologist or someone who specializes in thyroid cancer.
Please take care and I wish you all the best with your future medical journey.
Gwen (Minnesota)

Yes, I don't understand the provider's reasoning either. This last appointment my husband went with and was very outspoken about trying to adjust Synthroid dosages, but she dismissed it and was trying to tie my symptoms to other conditions (menopause, nutrition, etc.).
I have a follow-up appointment next week with her and am definitely asking for a referral to an endocrinologist or thyroid cancer specialist. Thank you.

Hi there.
Thank you for replying.
TSH normal - that has NO relationship to whether you have your papillary? cancer returned or that the surgeon did not get all affected Lymph nodes.
I suspect 12 for me id nor cover 2 still growing. A 8mm and 7mm Lymphs. The other 19mm x 9mm calcified as well is a ? what is it. In CT Scans & Pet it shows behind the 2 Lymph Nodes. But any picture taken front on wouls. Last CT scan Radiologist read 7mm and 6mm Lymphs and the other 19mm x 8mm! I said to my surgeon iodine has shrunk them.
You are not been carefully monitored. After thyroidectomy I was ultrasounded at 3mths/6mthe/Yr then Yrly.
This protocol and the Surgeon should have ordered them. But I have had to remind my Surgeon yrly. I have started 6 weeks before it is due. I keep on.
Metasis forming must be prevented to spread and if you had Lymph Nodes affected already you are a candidate for an ultrasound FOR LIFE.
Often the RAI Treatment doesn't kill all spread Lymph Node cancer. There are 100 Lymphs 50 each side of your Thyroid.
It is your Surgeon who needs contacting. Speak to his nurses.
Even your GP can refer you to have checkups. I reckon. I was going to go through my GP if Surgeon didn't refer me for an ultrasound.
I'd have your GP do further tests. TSH, T3, T4 and Thyroglubin SERUM and Thyroglubin ANTIBODIES.
The latter give an alternative to checking on 'movement'. If they are moving up and you should have.0 - 1 SERUM 1-2 is suspicious and higher well it is growing/or regrowing.
Do get an ultrasound for reassurance and the above necessity tests done.
Down in T3 eat 2 brazil nuts per day.
Do take care.
An Endocrinologist just sorts out levels of thyroxine only NOT if cancer is growing.
In the report after your Thyroidectomy your surgeon should have stated yearly checks - ultrasound tests yrly.
Otherwise he/she has not done his/her job.
cheri JOY
p.s. stopping my Bisoprolol I can now take 100mgs not 125mg as my TSH is decreasing at 1.3 now.

Thank you for your advice. I appreciate your experiences.

I did have ultrasounds every 3 mos. for the first year and every 6 months years 2 & 3.
Year 4 I had an ultrasound done annually.

I am now on year 8 post thyroidectomy.
They did a large neck dissection and I had NO positive lymph nodes at the time of my thyroidectomy.
I will be seeking out another opinion.

Best regards.