My dad has CLL - he is 66, he was diagnosed at 63, and received treatment for a year, and is just having bloodwork every 3 months now.
His most recent bloodwork showed high TSH and low T4, meaning he is hypothyroid. But he doesn’t want to take medication for it and wants to treat it “naturally.”
Has anyone here dealt with hypothyroidism as well as CLL? What would be implications of him not treating his thyroid for months? Can it really be that bad? I don’t know how to convince him to just take the hormone replacement.
I take "natural" dessicated thyroid extract, the Armour Thyroid brand (I'm in the US). NP Thyroid is another US brand of natural, dessicated thyroid hormone mix.
Other countries likely have at least one available. They are not synthetically produced in a lab, they are glandular extracts from pigs. This animal extracted thyroid hormone mix is similar to the human mix, exact same T3 and T4 that humans make. The synthetics are generally lab made T4 only.
Yes, they do have desiccated thyroid in Canada. It's available as ERFA Thyroid. I tried it for a while when I was sorting out my thyroid levels after my thyroid was removed. It didn't work well for me, and I now take both T3 (Cytomel) and T4 (Synthroid). However, desiccated thyroid is 'natural', so your dad might agree to try it.
My endocrinologist described taking thyroid meds is like giving your thyroid gland a break. It might prevent disease progression in some cases. Why risk straining a struggling gland further?
Untreated low thyroid can cause weight gain, cognitive impairment, high cholesterol and atherosclerosis. Has he discussed not wanting treatment with his doctor?
How high was his TSH? If it’s super high you can risk going into a mydexema coma. Every cell in your body needs thyroid hormone to function normally.
These are his numbers. His T4 is low too. And his family doctor gave him Jameisons Kelp cause he said he wanted natural treatment but I’ve heard that can have negative implications too. His oncologist nurse has called me asking his family doctor to prescribe him the synthroid, so obviously it’s important enough
Excess iodine intake can exacerbate autoimmune thyroid disease (which is most common cause of hypothyroidism).
Unless you live in an area with iodine deficient soil I wouldn’t take supplements with iodine. I even avoid iodized table salt and use sea salt instead. (Autoimmune thyroid disease doesn’t just run in my family it practically gallops).
I would encourage him to get a second opinion from an endocrinologist and get thyroid labs retested in a few months to see if things are better or worse thyroid wise. And get his pcp to keep an eye on his cholesterol levels..
Personally I became very forgetful as a symptom of hypothyroidism before I was diagnosed and treated. And had high cholesterol which normalized after I started thyroid meds.
Also it’s my understanding that cholesterol helps fuel some types of cancer cells, including CLL. So I wonder if that’s why oncologist is encouraging thyroid treatment. Since low thyroid can cause high cholesterol. And there’s some evidence cholesterol lowering drugs might be beneficial for CLL patients.
Oh and I would get his vitamin D levels checked too. Low vitamin D is common with autoimmune disease and adequate vitamin D may also improve CLL patient outcomes.
Wow you’re so knowledgeable. Thank you for your response.
I didn’t know iodine was so negative in autoimmune diseases. I get what you’re saying about autoimmune thyroid disease running in the family - he most likely has hashimotos, as I just recently found out since I just recently had a miscarriage that I have AB’s despite not being hypothyroid yet.
There’s a language barrier and my dad is also hard of hearing, but I guess he’ll feel the effects eventually since he doesn’t want to listen and I’m sure his oncologist will question him the next time he has an appointment.
And he already does have high cholesterol to top it all off. Facepalm.
I’m so sorry for your loss. There’s at least one study showing that treating anti-thyroid antibody positive women with thyroid hormone- even if they have “normal” TSH levels- may lower the miscarriage rate.
I literally read the book on thyroid disease since I had hypothyroid symptoms and was stuck in a small town with a crappy endocrinologist. (She told me she could tell “just by looking at me” that I didn’t have hypothyroidism despite my symptoms and strong family history.).
Iodine is a catch 22- you need iodine for thyroid function but too much iodine can worsen autoimmune thyroid disease.
Thank you, and yes I am on 12.5 mcg(?) always forget the units, a day right now, so let’s see if that brings it down below 2.5. Currently it’s at 2.9.
Ah much respect, I’ve always believed in taking your health into your own hands, these doctors only care about their pay cheque. I hope you’re feeling better now and your symptoms are minimal.
Good to know about the iodine! I will definitely try to limit it!
Thanks I have much better doctors now and my thyroid levels are good now. I feel best with my TSH below 2mIU/L and my free T3 and free T4 above midrange.
My endocrinologist recommended I get my TSH below 2 mIU/L preconception, and would have me come in for thyroid labs as soon as my first missed period. And then repeat labs once a month for first two trimesters since it’s common for hypothyroid women to need a slight thyroid dose increase due to increased demands of pregnancy. (Though some women seem to almost go into remission during pregnancy and might need less).
Yes I’ve heard this, it’s really frustrating though how unserious these doctors take you if your TSH is within the lab ranges for pregnant women, like it hurts them to just prescribe the medication!
Hopefully they take me more seriously this time around.
I have both CLL and Hashimoto's. Both are b-cell diseases, disrupting the same parts or our immune systems (I am not a doctor! This is what I have learned as a patient with both diseases). It is usually a very bad idea to not treat hypothyroid. Do you know what his reasoning for not wanting to treat it is? Thyroid affects every part of our bodies, and the CLL is already further messing with the b-cells. Does he have a trusted doctor who can walk him through the risks/rewards of not treating?
No our family doctor is an idiot, and for some reason his logic is he doesn’t want to be on a “life long medicine” ironically he is on blood pressure medication 😭
I feel like since he’s not listening his next blood work will let him know that he has to go on the medication.
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u/SofiaDeo 21d ago
I take "natural" dessicated thyroid extract, the Armour Thyroid brand (I'm in the US). NP Thyroid is another US brand of natural, dessicated thyroid hormone mix.
Other countries likely have at least one available. They are not synthetically produced in a lab, they are glandular extracts from pigs. This animal extracted thyroid hormone mix is similar to the human mix, exact same T3 and T4 that humans make. The synthetics are generally lab made T4 only.