Biotin and Hypothyroidism

My doctor and I discovered an issue with biotin supplements and I felt like I needed to share my experience. He now asks all his patients who are on levo/synthroid if they take this vitamin.

If you have good TSH numbers but still feel terrible and are taking biotin please keep reading.

I have been meaning to post this for about a year. While this is old new for me I thought it might be helpful for someone else.

In my case I am on levothroxine .75 mcg and cytomel 5 mcg. At the time of the following lab work I was taking the following vitamins, too:

  • Vitamin C
  • Biotin
  • Selenium
  • Glucosamine and chondroitin
  • B-12

My friend suggested I was taking too many vitamins and to have a sit down with my doctor, so I did. I emailed him my list of vitamins before hand and h printed out all the medical info on the above vitamins for our appointment.

This is when we both discovered that BIOTIN can give false low TSH numbers. Yes. You read that correctly.

Like many hypothyroid patients I was taking the biotin to “help” with my thinning hair and eyebrows.

He had me stop taking biotin for a month and retest.

I went from TSH 1.4 to TSH 8.1!

We couldn’t believe it. He had me double the cytomel (now two 5 mcg pills) and retest in a few weeks.

Here’s what I was taking. Max strength 10,000 mcg per pill (I was taking 1 a day for about 6 months). My doctor ok’d this over the phone but he didn’t ask what strength and I didn’t know that was important.

Please, please if your numbers look “normal” but you still feel bad and you take Biotin please consider talking to your doctor, stopping Biotin, then retesting after 1 month.

YMMV, but it might make a big difference for you. It has for me.

Sources: I can not find the article that my doctor printed off his his own database, but try googling these phrases:

  1. biotin interference on tsh and free thyroid hormone measurement.
  2. Biotin TSH
  3. which revealed that biotin may interfere with the most commonly used thyrotropin and thyroid hormone assays. “

The above article tests the impact on children so the dosages mentioned are for a child. Still, by looking at the numbers we can still see how it could impact an adult.

Biotin dosage on the test subjects: “2 to 15 mg per kilogram of body weight per day) [more] than the dietary reference intake in children (5 to 25 μg per kilogram per day)” because of inherited metabolic diseases they had.

Now that I am no longer taking biotin:

  • I can now wake up at/around 8 when before I could barely crawl out of bed at 10.
  • I am not feeling motivated to run/jog again yet, but I am able to take a walk or use my rowing machine 1- 3 times a week.
  • I have experienced no weight loss, but I do feel better than I did when I was taking the biotin.

 

Overall, My TSH went from 1.4, to 8.1 after Biotin was removed, then back down to 0.71 on after Cytomel was upped to 10 mg a day.

It’s worth asking your doctor about it if you take biotin.

Remember- the only person who truly knows your body is you, and you’re also your best advocate. So, arm yourself with information, take good notes about your symptoms and stay optimistic!

 

Advertisements

My Thyroid Cancer Diagnosis and Treatment Timeline

I am a healthy woman who was diagnosed with thyroid cancer at 29. I do not smoke, drink alcohol rarely, avoid fast food, and exercise frequently.

Cancer is scary. While thyroid cancer is treatable it leaves us with completely new bodies. Nothing works like it used to, and trust me…that is frustrating.

I am writing about my experiences in a series of posts because I hope it can help somebody else who develops this condition.

One question I am always asked is “how did you discover you had  cancer?”  Well, that’s an interesting story.

People want to know how I found out I had a problem, so here’s my diagnosis and treatment timeline.

 

Late December 2012:

I went to the emergency room from work because I suddenly had pain with breathing. I called the nurse line and was told that because of my birth control I could be having a pulmonary embolism.

David was on the flight line, so I drove myself to the ER.

After several hours and many tests they discovered the real problem.

I had thyroid nodules/cysts that had gotten so large on the left side of my throat that that they had nowhere to swell too on my small frame, pushing the swelling into my lungs and throat.

Other symptoms that developed prior to this ER visit was a very pungent body odor. It wasn’t regular BO. It was worse than that. I actually blogged about it here.

Thyroid nodules are prevalent in my family, so I wasn’t too concerned.

I was released from the ER and told to schedule a referral to an endocrinologist.

February 2013:

More ultrasounds and tests in January.

By February I had the needle biopsy, but it was only done on the largest nodule. It came back clear and this doctor said he did some sort of DNA analysis on me and I am very low risk for cancer.

The swelling was controlled  over the months with an as-needed steroid medication.

We moved to Japan in November 2013.

January 2014:

The doctors here in Japan noticed that I had not had a followup since last year and made me go through the tests again.

I really wasn’t trilled about it, but went ahead with it.

The ultrasound showed the left nodule had grown quite a bit, and had visible black spots.

I had another needle biopsy, and it came back clear.

However, I was urged to consider tissue biopsy, so I did.

My nose was broken when I was 5 years old. During the consultation for my thyroid the doctor noted that he could also fix my nose.

The same doctor would perform a septoplasty, but he got military orders to move later this summer. This meant he would not be able to do my nose work unless we acted fast.

I asked him to do both the thyroid lobectomy and the septoplasty at the same time because I really felt he was the best surgeon for the work.

May 2014:

He agreed, and I had both procedures done May 28, 2014.

Strangely I had no symptoms (other than the swelling in my throat) until about 2 weeks before my surgery date.

I started having trouble waking up and getting moving. I started feeling the need to take naps, and I started feeling very unusual- not like myself.

The tumor that was removed was a little over an inch long and had big black spots.

The tissue biopsy results revealed stage i thyroid cancer- papillary with a follicular variant. The tumor was t2 in size.

June 2014:

I had the second surgery to remove my other thyroid on June 30th. The masses on the right side that were removed also had possible spots.

July 2014:

Despite the spots, the right side had no cancer.

August/September 2014:

Received a small dose of radioactive iodine at an Army hospital in Hawaii. This should have destroyed any remaining thyroid cells that were left in my body.

I will have regular blood work and yearly body scans to check for cancer. The radioactive iodine treatment does increase my risk of getting other types of cancer, but at the moment I am all clear.

My septorhinoplasty and thyroidectomy

In the spring of 2014 I discovered that my thyroid cyst from last year turned into a tumor and was growing steadily.

I am at an air base in Japan on my husband’s military orders, so first I had to go off base to a Japanese hospital to have the needle aspiration biopsy done because the base hospital couldn’t provide this service.

The surgeon at Yokota still needed to examine me first and noticed that I had a severely damaged nose from an injury I received in kindergarten. A girl hit me over the head with her heavy 1990’s lunchbox complete with an old, heavy thermos and my nose has remained broken ever since. After he performed some initial breathing tests I was amazed at the difference that being unobstructed made and he agreed to revisit my nose problem after I had some more work on my thyroid done.

The second appointment was a consultation at St. Luke’s International Hospital in Tokyo, about 2 hours one way by train. I had to visit the bi-lingual doctor, then the surgeon for the needle biopsy, then re-visit the first Japanese doctor so that I could get the results back in English. February and March were exhausting with the back and forth appointments.

The FNA (fine needle aspiration) here was an experience I’ll never forget because Japanese medicine doesn’t use anesthesia like American medicine does. The doctor looked at me and said “don’t breathe, don’t swallow, don’t talk”  before shoving he long, thin needle into the left side of my throat. The needle could have been short, for all I know-it just felt like it was a foot long. My brain had no time to register what happened, so the pain didn’t come until an hour later.

He gathered cells twice (he called the needle insertions “punches”) and that still only took 10 minutes; the same procedure took 45 minutes with anesthesia last year in America.

The FNA results came back clear for cellular cancer, but the doctors were concerned with what we couldn’t see so I was sent back to Yokota to biopsy the tumor itself.

Here is another difference between eastern and western medicine; the Japanese doctors did not want to remove any part of the thyroid and only wanted to only take the tumor, but all the American doctors wanted to take both the mass and half my left thyroid.

Now I was faced with the decision of the actual surgery. I received a referral to the naval base even farther south (about 3.5 hours by train one way) and it was the same process. A consultation, a return trip for the surgery, and a lengthy stay.

I was really frustrated with the idea that I would have to miss more work to go even further away so I emailed the ENT surgeon I first met at Yokota.

This was around late April and as it turns out my surgeon was set to leave Yokota Air Base in July, so that is why my referral was for the naval base. I was able to talk with the surgeon and get him to accept my surgery before he left- both of them, actually. We decided that he would do both the  septorhinoplasty and thyroidectomy at the same time. The  thyroidectomy took priority, of course, and would be the first procedure he would do for me.

My surgery was the morning of May 28, 2014 and this is the story of my surgery and recovery.

I have never had surgery before, except for having my wisdom teeth removed, so I was pretty anxious about being down for so many weeks.

Luckily all of our bills, deposits, and withdraws are automatic so I had nothing to worry about there. I highly suggest you put as much of your life on “auto pilot”  as possible, it will make your life so much easier.

I finished graduate school a few weeks ago, so I have no loose ends to tie there, either. I only had to get my work assignments and tasks set up so that I can easily have someone followup on my work.

10363643_843783570044_4196833399806725655_n

Wednesday after waking up from surgery

It took 3 times to get the IV into my arm, and my wrists have the bruises to prove it.

The last full day I remember is Tuesday, and that feels really weird to have lost so many days.

Immediately after the surgery I felt great, which really alarmed me because I wasn’t sure if that was the drugs, or if I really did feel okay. I was eating, walking, and sleeping relatively well. I had crackers that night, and the morning later was able to eat everything on my hospital tray.

The incision on my throat is fine, and I have minimal pain and discomfort. I can’t really put my head all the way back, but that’s no big deal.

My nose? That’s another story. I never expected the most painful and irritating of the two procedures would be my nose, even though I read about nose work beforehand and expected the itching. I’ve got both a nose cast on the outside and splints on the inside, and the itching is driving me crazy.

May 31 was the worst day for swelling so far because it felt like my nose was going to break my cast in two. I was able to get the swelling down with ice packs throughout the night. June 1 I was reduced to putting on gloves while I slept because I had been waking up scratching my nose and the rest of my body like crazy.

The next day I had to file my newly-grown nails down quite a bit just to avoid accidentally hurting myself. Benedryl isn’t dealing with the itching anymore, either, but luckily I had a prescription for itching already.

I’m taking my pain medicine on schedule, and have not needed to take the full dosage but a few times, so I’m happy with that.

Overall it feels like have serious sinus pressure and/or a cold because of the nose pressure, my need to carry around a Kleenex to catch drips, and having to sleep propped up at at angle so I can breathe.

The saline flushes 4 times a day has already become my least favorite thing to do during this whole recovery process.

By Sunday the bruising is starting to change colors from black to yellow. My nose cast comes off this coming Wednesday and I’m really excited about that.

I have had some light numbness on my left fingers since the surgery and have read that it might be a calcium deficiency, but I’ll wait for my doctor to monitor my thyroid levels to see what he thinks.

Wednesday 6/4

1 week post-op and I had the cast and splints removed today.

The ends of the splints are wider than my nostril is, so the initial pull was both painful and satisfying as it passed though. There there was the weird sensation of what felt like pulling spaghetti through my nose (that was the rest of the splint).

Then I had to experience that again on the other nostril. While it didn’t hurt enough to make me cry from pain, the pulling and tugging around my nose area made my eyes water and tears began to run down my cheeks.

Then the cast came off. I expected that to hurt worse than the splints, but the cast was no big deal. Immediately after everything removed I recognized how freely I could breath.

My doctor says that my recovery experience isn’t typical and that I am bouncing back earlier than most people do. Now this could just be him trying to make me feel good, but I wanted to mention it here since other people may have a harder time than I did.

I was cleared to go back to work as soon early as Friday and I will be back to scuba diving and will get to try sky diving in about 2 months post-op.

I asked about the light numbness in my fingers and he said that, considering I had 2 procedures that was about 4 hour long, that he thinks the tingle comes from how they position your hand tightly against your leg during the surgery and that the tingling sensation should go away in a few weeks.

While I know I am swollen, I see a big difference already- no crooked nose and no bump! And most importantly, I can breathe correctly!

DSC_3932

2 weeks post-op 6/11

Wednesday 6/11

Today marks 2 weeks post-op.

6/4 was the last day I used the pain medication, so I’ve been managing my pain very well. Most of the bruising is gone and I’m only left with some light yellowing on my cheek and the throat incision.

The numbness in my fingers is nearly gone and I’ve been able to crinkle my nose when I smile for the past few days, as well.

About 4 days ago I noticed a very strange droop/sag in both cheeks and I panicked.

It looked like I needed a facelift before I was 30. I emailed my doctor and he said it was likely just swelling and not to worry.

In the days since the swelling has indeed gone done and my cheeks are starting to look normal again.

I still have some swelling around my nose and cheeks and a little numbness on the tip of my nose, but I’m still breathing well and everything seems to be working out.

I did, however, get news yesterday that my biopsy results did come back positive for cancer.

The tumor had papillary thyroid cancer with a follicular variant. The doctors say that this is very treatable and My husband and I are staying positive and we both feel really good about it.

I’m scheduled for another surgery later this month to remove my right thyroid just to err on the side of caution. I’ll be on a thyroid supplement for the rest of my life, but it’s better than the alternative.

The other thyroid will be biopsied, as well, but it will be about another 2 weeks from the date of surgery to find out if they discovered any more cancerous tissue.

I will keep this post updated.

3 weeks, 2 days post-op

3 weeks, 2 days post-op

—————————–

Monday August 4

It’s August now and I’m recovering pretty well. The tip of my nose still feels pretty stiff, but it’s not painful or uncomfortable.

My second thyroid surgery was successful and I was told I am cancer free at the moment, so that’s great news. That scar is healing up nicely and I feel so much better without the cancer in my body.

I did end up gaining 4-6 pounds after the second surgery, but I am working on getting that under control. Sometimes a few pounds take more work to lose than double-digits.

Overall I’m glad to have had the procedures, even though surgery and recovery took up the majority of the summer. I’m having some trouble remembering that it is August already because it still feels like the beginning of summer for me.

I hope writing about my experience can help someone who is looking to have either of these procedures done!

If you’re about to have one of these operations done-stay strong. Wishing you a smooth surgery and recovery.