Synthroid &CLL

[Minda1941]

Hello All

Ive been in stage 0 with numbers climbing slowly. Anyone taking med for thyroid? Ive been on synthroid for more than 30 yrs. Wondering about connection to CLL

[shazie]

I have been on thyroid meds since I turned 21 and I am 57 now. I was overactive and now it is underactive (I take Synthroid). I don't know about any correlation. How often do you take Synthroid (7 nights)?

[wroxham-gb]

Welcome to the site Minda and I hope you get lots of replies.

I have taken the throxyine for a number of years for an under active thyroid. It wouldn't surprise me in the slightest if there was a connection, as the thyroid is a gland. As to proof - no I have none but someone may come on with supporting data.

As a tip for when you post again lock the post to community only. You will get more replies very likely.

Best wishes

Sue

[MsLockYourPosts Passed Volunteer in reply to wroxham-gb]

You can lock the post if you click on the little down arrow (OK computer folks - what is the proper name for that little thing I call an arrow) and edit your post to community only - bottom of the post.

[cllady01 Former Volunteer in reply to MsLockYourPosts]

Pkenn, not a computer folk or geek, but I call that an upside down caret:

a mark (^, ‸) placed below the line to indicate a proposed insertion in a printed or written text.

I know that isn't correct, but hey--it works for me.

[Cllcanada Top Poster CURE Hero in reply to cllady01]

I believe it is called a down arrow... ⌄

In a pinch a V works... better... if bold V

~chris

[Peggy4]

I've had medication for an under active thyroid for about 8 years I'm not aware of any link.

Peggy

[Minda1941]

Thanks Peggy!

[thelutondodger]

Hello Minda1941,

perhaps a coincidence but a very recent GP prescribed blood test has indicated that although I have a good reading of the thyroid activity the hormone level from the brain that triggers the thyroid to do it's job is high. This, apparently, indicates that the thyroid is having to put in more effort necessitating a thyroxin pill in the foreseeable future. Both GP and Consultant were unsure whether there was a CLL or chemo connection. I didn't force the issue as both said it was borderline and they would watch.

I was stage 3 and started treatment the day after diagnosis (following a pre-op blood test) and celebrate that I am 9 months in remission following FCR (6 sessions spread over 9 months last year) I am experiencing fatigue (pretty profound some days) and some cognitive deficits (sequencing, memory and problem-solving - local known as brain-fuzz or what's that old git up to now!)

My blood levels are all low - just below the normal range in most cases - red blood and platelets - below that - both touching about 100.

I'm 65, male and live in UK. Still keeping up the daily exercise and cycling. Finding walking tough due to leg pains and some breathlessness. Otherwise living the post-chemo-remission-retirement joy!

Best wishes to you,

Roger

[Minda1941 in reply to thelutondodger]

Good to hear from you.Thank you!

[annabelle63]

I'm on the same. I never put the two together

[united777]

I was diagnosed with Thyroid cancer and Lymphoma at the same time. When my Thyroid was removed a biopsy was performed & was diagnosed with SLL/CLL. Both endocrinologist & oncologist were emphatic thyroid cancer & SLL/CLL were unrelated. I have always had my doubts.

[SouthFloridaLady in reply to united777]

Goodness, pretty frightening. I hope that you are doing well.

[cllgirl]

Hi! Sorry to hear about your increasing numbers. I, too, have been on Synthroid for 30 years and now have CLL/SLL diagnosed almost 7 years ago. I have been taking Ibrutinib for the last three years. I don't believe there is a connection, but I think the low thyroid may be contributing to the fatigue from the CLL and Ibrutinib.

[NoClew]

I cannot comment about synthroid and cll, but I'd like to mention cytomel, another thyroid hormone that may have relavence for cll patients, female in particular but not exclusively, where our risk for breast cancer is increased.

I began taking cytomel around 1982. I was diagnosed with breast cancer, the first time, in 1995. Diagnosed with CLL in 2008. W/W, but I increased my diligence for reading all my script inserts, even my old friend cytomel. The very last line, in very very small print, stated "while there appears to be a strong correlation between long term use of cytomel and the incidence of breast cancer, it has not been proven". Consulted both my endocrinologist and oncologist immediately. Told that cytomel in large doses causes breast cancer in lab rats, but we cannot prove so in humans. No worries.

4 years later, 2nd breast cancer diagnosis, new, not recurrance. Immediately yanked off cytomel. Still no proof.

Just a heads up, read inserts, be vigilant and persistant, stay strong and healthy!

[SouthFloridaLady]

I was advised to take my thyroid medicine in the morning with a large glass of water, fifteen minutes before I eat. No vitamins until four hours later. Of course, I inevitably forget to take the vits!

[shazie in reply to SouthFloridaLady]

I know for fact thyroid meds must be taken on empty stomach. I take them between 2-3 in the morning. If you take PPI or any antacids for stomach make sure you give it a window between 4-5 hours from your thyroid meds.

[SouthFloridaLady in reply to shazie]

All this can make one crazy! 😜