It's been a hypothyroidism nightmare since 1 pembro infusion (a.k.a., 'Keytruda', an immunotherapy drug to treat cancer) killed my husband's thyroid over a period of about 3 months (late September - mid Dec.). No one caught the fact that the 'tipping point' from hyper- to hypo-thyroidism had been reached a few days before Christmas. We ended up in the hospital in Rochester on Dec. 26 for three days, getting treatment for symptoms — excruciating pain/difficulty breathing/rapid heartbeat/edema/swelling — rather than having treatment for the CAUSE of those symptoms, namely hypothyroidism. Consequently, the steroid (dexamethasone) and the other meds (gabapentin) he was given for pain did NOT address the underlying problem, but in fact added to them (increased swelling, which actually produces more pain), along with another layer of complexity, sky-rocketing blood glucose into the 300-400 range.
So, on January 25, we ended up back in the hospital down in Rochester (again) for another 3 days. This time they looked at his thyroid levels from his blood work and gave him synthetic thyroxine. Upon his release, we were given a prescription for synthetic thyroxine. However, the Mayo pharmacist had not written "Dispense as Written" (D.A.W.) on the prescription, so back at home the pharmacist substituted a different generic form of the drug which did NOT WORK! My husband plunged back into the black abyss of hypothyroidism symptoms within three days, and we found ourselves in the ER at United Hospital in St. Paul on January 30, where they insisted on attributing his symptoms to Congestive Heart Failure, which would have been a logical conclusion to jump to — except for 3 things (God forbid we should let facts get in the way, right?): his troponin level was negative, his electrocardiogram was fine, and his echocardiogram was actually better than the one he'd had done 6 months ago! We kept telling every medic that came into the ER that he did NOT have chest pain, he had chest pressure, yet they kept insisting on focusing on his heart. aaaagh!
We kept insisting that the problem was likely uncontrolled hypothyroidism. Once somebody FINALLY listened to us, they admitted him to United Hospital and gave him the appropriate medication (the same generic medication he'd gotten in the hospital at Mayo that had worked well), so he improved and was released from the hospital after 3 days. Problem was that even though the doctor had written "D.A.W" on the new prescription, the local pharmacy did not have that formulation on hand. So we had access only to the old pills from before his hospitalization for 3 days. Aaaagh!
FINALLY, we got the correct generic! It turns out there are 23 different manufacturers of generic synthetic thyroxine, and each of them can act differently due to the different binders, fillers and coatings used on the tablets!! With any hormone, bioavailability and absorption times for the hormone to take effect can be vastly different. Synthetic thyroxine is synthetic T4, the precursor to the active hormone, T3. But T4 must be converted in the body's tissues into T3 before any appreciable improvement occurs, and that conversion process has to reach optimum levels before my husband will feel much better. So, he's a long way (perhaps 3-4 weeks) from being stable. It has been and will continue to be a roller coaster for a while.
Now, because of the cancer, we have restarted "Pembrolizumab" (a.k.a. 'pembro', a.k.a. brand name "Keytruda") — one infusion every three weeks until toxicity or remission occurs. We're just praying to God that the oncologist is right when he said to us: "The pembro killed your thyroid last fall, but it did NOT attack your kidneys or your liver, and that's a good sign. Your liver and kidney values are good, and your TSH and T4 are going in the right direction. So you can take pembro again. And statistically the pembro has shown that more people are helped by pembro than they are by the other immunotherapy drug ("atezolizumab", a.k.a. Tecentriq)."
Hmmmm.... that may have a certain sort of twisted logic, I thought to myself, but I'd prefer to have science, not statistics as the reason for taking the pembro. I'd like to know the scientific mechanism for why some people respond to a drug favorably and (especially) why the few other people who did NOT respond to the drug favorably did NOT do well on it. So, I asked if they had ever done an assay on my husband's tumor to determine his tumor's phenotype (whether it had predominantly expression of PD1 or PD-L1 factors), which I thought would be a critical piece of information, since 'pembro' targets PD-1 on the T cell surface and 'atezo' (the other immunotherapy option for us) targets PD-L1 on both the tumor and the T cell. Nope, they hadn't/couldn't/wouldn't have or get that information. Hmmmm.....
So, like I said, we're hanging on prayer and trusting God to guide us. All this is stuff I never wanted to learn, but given our experience, I've had to be vigilant and ferret it all out because of mistakes that have been made by the medical folks in the past 4 years. We're hugely grateful for all the medical people, but they are also fallible human beings and subject to 'group think' and to the potential to treat 'obvious' symptoms rather than underlying causes and to taking something at face value because it seems 'logical'. Then, there's the insidious connection with 'big pharm'.....
My husband has now had his pembro restarted, and he's been a mess for 6 days. Since the symptoms following the infusion are oddly like hypothyroidism (even though he has continued to take his levothyroxine), I'm wondering if there's anybody else out there who has both hypothyroidism and is on pembro immunotherapy? Are the symptoms I'm seeing in my husband — chills, fever, dizziness, delirium (probably caused by the fever), fast heartbeat and breathing, extreme muscle weakness, dark urine, stomach pain — caused by the pembro or by the hypothroidism, or by some vile synergy between the pembro and the levothyroxine?
Sorry to go on and on. Probably t.m.i. you didn't care to know. But the instructions said to "Please be detailed." So there ya go.
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