CLL and Thyroid

[rafew]

Good morning. I was diagnosed with hypothyroidism a few years before CLL and have been taking levothyroxine [175mcg], I am currently on Acalabruitnib and at my last lab, my TSH dropped to 0.05 and the T4 went up to 1.8 - We've adjusted the levothyroxine to 150mcg and waiting to find out it's effects on those numbers. My question is has anyone else [with hypothyroidism] had a drastic swing in their TSH during CLL treatment? Just curious. Thank you.

[Ginajetta]

dealing with similar on imbruvica. Doctor still trying to adjust.

[Justasheet1]

rafew,

I developed Hashimoto’s prior to CLL treatment and as soon as I began treatment my Hashimoto’s disappeared.

I haven’t needed levothyroxine since though they test my levels every year.

Jeff

[rafew]

thank you, I appreciate your information. The TSH test was done by my hematologist looking for some correlation with the increase in fatigue I’ve been experiencing. I have put a call into my primary to ask if we should look at this further. Dropping my Levothyroxine to 150 fromm175, does not seem (to me) to be an answer to this.

[Walkingtall62]

Hi, I was taking 100mcg thyroxine when I started Acalabrutinib over two years ago. All during Covid days, and I eventually got very tired/fatigued, probably even miserable. After recent test doctor suggested I reduce thyroxine to 75mcg. Wasn’t too happy to do this because of the tiredness. But I did. I am amazed how my energy levels changed for the better. Happy to go out, I get more stuff done and am feeling so much better. I am amazed and very happy. Good luck

[UKfulloflife]

Hi - I was diagnosed with Hypothyroidism over 30 yrs ago and CLL 11 years ago. I'm currently on my 3rd lot of treatment and can't say as it has ever affected my TSH levels. interesting thought though - will have a thorough check of my records, just to make sure!

[YelvertonDevon]

finding this thread interesting I had Hyperthyroidism prior to CLL diagnosis. Coincidence or not?

[rafew in reply to YelvertonDevon]

it does seem a large number of people in the CLL population also have thyroid issues

[tekusa]

I was diagnosed CLL Aug 2014. My TSH was increasing very slowly and earlier this year stated taking Levothyroxine. Still no CLL treatment, but likely will start in 2 years or so. I have many lymph nodes swollen in my neck. They thyroid doctor I visited believes the two are related, but can't say for sure. I hope like jeff once I start treatment it will go away. The Levothryroxine does improve my tiredness. I should have started it sooner.

[atblank]

I am on Imbruvica but have not had this problem. Over the years I have been on Synthroid it has been adjusted a few times, but I have never had a drop like that. I hope you get it figured out.

[Tirawa]

It took me 4 years to finally have my natural path order the appropriate test when five endocrinologist refused to to find out I was hyperthyroid. I'm currently doing nothing but herbals for it. We have had some discussion about medication my T4 is high my other levels are relatively all right although having had covid in June has really messed with my blood work. I work with the natural path that specials in endocrinology. She herself has been hyperthyroid for over 30 years and treated it alternatively and been extremely successful. I also work with an oncology natural path and then we'll be seeing a new CLL expert in January. I'm currently on weight and watch on a plant-based organic diet taking a goodly amount of supplements for immune system as well as other things. So far except for swollen lymph nodes which started after my covid vaccine and 2021 I'm doing very well I surely hope it continues. If anyone here is hyperthyroid I would love to get to chatting with you a support group would be fabulous

[AussieNeil Partner Administrator in reply to Tirawa]

Please be extremely wary of using any immune system supplements. Everytime I investigate how an immune booster works, I find that they stimulate lymphocyte production. When you have CLL, you do not want more CLL B lymphocytes. CLL is a relatively rare cancer, so while you may have done well finding a naturopath who has a thyroid condition, they don't have CLL. There are around 200 blood cancers. In my experience of administrating this community, time and time again I find members who consult a naturopath do not get appropriate guidance on supplements to help with CLL, but they may help other unrelated blood cancers.

Naturopaths also nearly always distrust vaccinations, which I find quite weird, because vaccinations actually use our body's natural ability to recognise and respond to natural parts of viruses, bacteria, etc. Even more natural is the use of weakened viruses and bacteria that are less capable of making people ill, (but they can make us seriously ill, which is why we should avoid them). So vaccinations use a natural process of showing our bodies what can make us sick, or even kill us, so our bodies will recognise the viruses and bacteria and fight them - ideally neutralising them, before they can make us ill.

Neil

PS I checked your profile and see that your lymph nodes never went down after the J&J vaccination. This indicates that you are probably IGHV unmutated, which means that your CLL is probably likely to similarly respond to supplements in the same way.

[Tirawa]

My father was a researcher pharmacist. So I grew up in a medical family. I am doing as much as I can naturopathically because my body does not metabolize Pharmaceuticals well plus I have a history of type B hepatitis. There are very very few Western medicine doctors especially experts in their field that know anything about nutrition or supplementation whereas many of the natural paths and nutritionists that are not linked to quote unquote Western medicine have hours and Decades of training. In Arizona Natural paths are fully licensed by the state and not somebody just hanging a shingle saying I'm a natural path. My natural path that works with me on my thyroid is working with six CLL patients and their experts and has helped to keep them and watch and wait for between 4 and 10 years so far. My natural pathog oncologist used to work at the Cancer Treatment Center of America's he is also published and has numerous CLL patients that he works with alongside with their experts. So I understand what you're saying but each and every person is extremely different in their Healthcare needs and their battles. For me if I had to go on Western medicine for CLL right now with what is out there it would probably kill me. I have had two CLL experts already tell me it would be extremely difficult to treat me because of my history with Pharmaceuticals and my Hepatitis B and hyperthyroidism.

[Eliotf]

Rafew,

I too was dx with Hashimoto's decades before my CLL. generally speaking the non-chemo CLL treatments do not affect the thyroid issue or medication. Make sure you take the T4 2 hours after eating and one hour before eating. In the big scheme of things most people wake up and take their levothyroxine, then wait for half an hour to an hour to eat breakfast. If you are talking any form of calcium, take that at night before bed as the Calcium does degrade the T4. There are 2-3 test for each item: TSH, T4, T3 and thyroidgnobulin. ask your doctor to do all of them. If the TSH is a bit out of wack it is not as important as how you feel and the tests of the T4 levels. there are people who have way out of wack TSH but are doing great. everyone is different. foods that have a lot of iodine affect the levels: seaweed, spinach are just two of them. Also remember that the tests are a snapshot in time and it matters the trend over the time. Your tests should be done prior to eating and taking your pills, so fasting, first thing in the AM.

[Adlucy]

I have been taking Levothyroxine for many years and was diagnosed with CLL in 2020.

I take 100mg now. It was at one time 125. I am also TP53 mutated and have13q deletion. I have not had any treatment as yet.

[crystalbeach]

Not a drastic change. However, I have changed my rx for thyroid. I used to take just Synthroid but was heavy, tired, etc. Read "stop the thyroid madness " and also follow the site online. "STTM". There is more to it than T3 and tsh. There is also a FB page with loads of help. I found I can't convert t3 to the active form, T4, which us what runs the body. So now I take 75 mcg T4 spread out thru the day, and 25 much Synthroid . Works for me! Everyone is different. I lost 70 lbs, have more energy. I encourage you and your doctor to read the book. My tsh and T3 are very low, but my T4 is perfect, and Reverse T3 low as it should be.

[rafew]

Thank you all for your comments. I have learned quite a bit by the discussion. I am getting my TSH checked in a couple of weeks and I'll have to ask about T3. It's not something I've heard of before, but in reading about it further, there seems to be some research into low T3 and poorer disease prognosis. Again, many thanks.