Drug Interactions, Pembro And Levothyroxine (Top voted first)

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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Thank God for you, cuz your husband would be in a heck of a shape w/o you! You are right on target with how T4 medication works. Something is not right about Pembro. Looks like it's making him sick(er). I would check his cortisol levels asap. You can do this by saliva but will take a while, so a blood draw at 8am would suffice and give a clue. You can purchase these online and just take the order to Labcorp. Also how much T4 is he taking? And who is the mfr of his generic T4? Thyroid works w/ adrenals. You must get his cortisol level checked ASAP. Morning 8am is best. WalkinLabs, PrivateLabs Md, RequestaTest, all those websites sell a morning cortisol test. Pembro is not sounding good, and you are instinctively seeing bad side effects. Can't tell ya how many times I got those feelings when my dad was put on various meds (for other reasons) and he was better when he went off of them. Get the cortisol test. Just like docs being hard up to avoid thyroid testing, they are the same w/ cortisol (a life-saving test).

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Re: Lil Dipper (# 1)

Thank you for your advice re the adrenal test and the info on how to get it done, because I hit a blank wall when I asked the doc if that test would be a good idea, given his reaction to the pembro. My husband is taking 100 mcg of levothyroxine (an oval tablet mfg. by Mylan) once a day in the a.m.

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Re: WB (# 2)

Sounds like a reasonable dose. But usually one starts out smaller and works their way up. Maybe it was just too much at once. Have to get TSH, Free T4 and Free T3 tested quite often in the beginning. Most MD's don't have the slightest idea about cortisol, it's as if they've been taught that it's 'scary'. Give me a break, it's one of the only bio-identicals in it's class, yet they use prednisone like bubble gum. It's a very serious issue, cortisol, and knowing what it is, is imperative, esp. since he's now taking Levothyroxine. Just check the insert on the Levo, says right there "contraindicated for those with adrenal insufficiency". So if the cortisol is low, it needs to be supplemented. Def check the labs out yourself. Buy it, print it and take to Labcorp or Quest the next day. Results are fairly quick and you don't have to wait for a doctor to get back to you.

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Re: Lil Dipper (# 1)

Wow, a wealth of information & opinions based on other's experiences. I know nothing of what you are going through with your husband's medical issues. I can say as the wife of an injured worker who has other medical concerns, making the original back injury an ongoing concern. He hasn't been able to work for four years so everything has fallen on me; financial, emotional, nutritional, etc. All I can say is be as diligent as you are able, keep every piece of medical paper & ask for the one's that aren't readily offered to you. I now keep everything in binders for each & every bit of support he can get. Try to get some time for yourself as well be it a hobby you like or spending time with a special friend or family member. Try to treat yourself kindly & with tenderness and know that it might feel like it at times but you aren't going through these struggles alone. Warmest thoughts to you.

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Re: Lil Dipper (# 3)

Thank you! You have just confirmed what I had already suspected. I had forgotten about the warning on the Levo, though!

An update: You will recall that my initial post to the chat line was 2/19; and the very next afternoon, on 2/20, I had to take my husband to the ER because the symptoms described in my post got even worse! It became clear that he was in the midst of a very severe adverse reaction to the pembro! The pembro had caused his immune system to attack his lungs, producing ‘cloudy diffuse opacity' (pneumonitis) and acute-onset pulmonary embolisms! He was in the hospital for 9 days with intravenous prednisone to reduce the inflammation, antibiotics in case it was pneumonia or other infection, and a heparin drip! Of course, the prednisone made him swell up like a toad, so he was also on constant diuretics to reduce the edema. Now he’s titrating off of the prednisone (now at 1 tab 2xs/day for two weeks), but the edema is still a huge issue. Because I feared that the adverse immune response from the pembro might not stop with the lungs but might also attack his adrenals, I asked the doctor at the hospital if a test of his adrenal function could be done. Nada. Based on your comments and our experience, I will be taking your advice and going to Labcorp tomorrow. Thank you!

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Re: Lil Dipper (# 1)

Autoimmune disease and thyroid are tricky as you have to catch the levels off at the right time. hashimotos causes lots of inflamation and results go up and down and can thrw body out of wack. i was allergic to levythyroxine and had allot of those symptoms. now am on Synthroid and up to .75 daily. levythyroxines coating on pill may cantain accacia plant and it is prone to mold and people who are environmentally sensitive tend to get allergic reactions. i am allot better on synthroid and learning to understand Hashimotos. i get chest pain off and on and have had an myochardrialinfarction. it helps to diagnose and keep at any unusual sizes and inflamation of thyroid as my levels go up and down even affecting bloodpressure. you do not have to be Asian to have Hashimotos. it is the name of the man who discovered the autoimmune disease. be stong and advocate for your alls health. get personal drs notes for learning and researching for yourself.It is allot of hard work, eat healthy and maintain vitamins and learn from qualified herbalists who are willing to share their knowledge. any support helps. God Bless

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