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Discussion Starter · #1 ·
Hello – I was so excited to find this forum. I’ve posted my story, lab results and questions below. I’m sorry it’s so long – thank you for reading if you do! I would so appreciate any advice!

The backstory
I’ve had debilitating muscle and joint pain since the birth of my daughter 14 years ago. I’ve seen every type of doctor – conventional and holistic – and done tons of different therapies (PT, acupuncture, osteopathic and chiropractic manipulations, mind-body stress-relieving techniques, psychotherapy, elimination diets, testing for Lyme, SIBO, viruses, etc.) only to come up with no reason for this.

In January 2021 I sat down, wrote down every little thing that is wrong with me and found that I have over 20 symptoms of hypothyroidism that have developed over the years. (Muscle and joint pain is only one of them – they run the gamut of restless legs, chronic hives, missing outer third of eyebrow, fatigue, eczema, inability to lose weight, etc.). I looked back through my health records and found that I’ve always had normal thyroid labs, but I started looking online and learned about the controversy around the lab ranges.

The endocrinologist
After seeing an endocrinologist who looked at my current labs and said that she didn’t think I would find a hormonal cause, she told me to exercise more, ask my PCP for a prescription for Gabapentin (I didn’t yet) and do a trial medication of 50 mcg of levothyroxine. She told me to come see her again, and the office was so booked they could only schedule me 16 weeks later. (I didn’t go.)

The naturopath
Before taking the thyroid medication, I decided to get an opinion from a naturopath. He looked at my list of symptoms and said that this was enough for him to prescribe thyroid medication. He surprised me in several ways. He agrees with conventional doctors that TSH is the gold standard test, but he tends to look for a range between 1-2. He also said that he has had many patients who have had “normal labs” and hypo symptoms, and when they take the medication, they get better. When it comes to treatment, he said that, when he went into naturopathy, he thought he was going to treat first with natural desiccated thyroid extract. But he found that it created sub-optimal results in his patients. So his method is to try T4 first, then try adding T3 and then switch to natural desiccated. He also said that he would start slowly at a low dose and consider switching brands if there are side effects. In addition, he considers medication as the treatment and that dietary methods and supplements will not help. (Of course, he is a proponent of a real food diet for EVERYONE, but in the case of thyroid disease, he said that it cannot be treated with nutrition alone.)

The medication
Since the naturopath is not covered by my insurance, I ended up going back to my primary care physician with this information. He was amendable to trying this with me, especially since he has one patient who has normal labs and takes a combo of T4 and T3. In a way, I feel like he’s letting me take the wheel on my treatment plan, which is both a relief (after having been through so much) and a bit scary (not knowing if I’m barking up the wrong tree here).

In June, I started on 25 mcg of generic levothyroxine. Immediately, my restless legs of nearly every night for the past two years decreased in intensity and only occurs 5-10 times a month. It’s actually so much less intense that it often doesn’t wake me up anymore – sometimes I only feel sore legs in the morning after being woken by my alarm. I have made no other changes than the medication, so I can’t explain it away with anything else. Also, for the first 3 days of the medication, I had a very slight decrease in my aches/pains. It didn’t last, and I chalked it up to just being hopeful, like a placebo effect. (But now I’m not so sure? Maybe my body is hungrily asking for more thyroid hormone?!)

After my doctor raised the dosage to 37.5 mcg and then to the current 50 mcg, I haven’t experienced any other improvement. In fact, my muscle pain seems worse. I realize this is a very low dose, but I’m starting to wonder how much I should tinker before giving up.

My questions for the community are:
  • When do you decide to try a different brand of medication to see if there’s any improvement? I’m on generic levothyroxine. Is it worth switching to something like Synthroid now, or should I be more patient?

  • When do you decide to add T3? I get the sense that most doctors wait until the patient’s labs look bad or start experiencing hyper symptoms. Is that what you did? I’ve been reading the books by Dr. Kenneth Blanchard, and he recommends most of his patients take a very small amount of T3 with their T4.

  • If you take T3 with T4 (the Dr. Kenneth Blanchard way, which is so tiny that I believe it needs to be fulfilled in a compounding pharmacy): Is it easier and just as effective to just get a small amount of natural desiccated instead?

  • For anyone with the symptoms of muscle and joint pain and stiffness: The pain I have is near constant in my back, neck, wrists/hands, knees, etc. When I go swimming, I immediately feel the pain almost go away – and it’s not the swimming as exercise, it’s literally just getting into water and feeling the weightlessness. If I truly have hypothyroidism/Hashimoto’s, would this happen?

  • For those who said that their medication caused their muscle and joint pain: Was this an overall-type of pain, or was it specific to locations near the center of the body (like hips, low back) or wrists/knees? I feel myself getting worse in these problem areas, but I can’t tell if that’s just because I’m getting more hypo or if it’s side effect of the medication.
Lab results:
My most current results with lab ranges are:

March 2017 (old, but includes antibody tests before starting a Paleo diet):
  • TSH = 1.96 (0.465-4.68)
  • Free T4 = 1.23 (0.75-2.09)
  • Free T3 = 3.96 (2.77-5.27)
  • TPO AB = 6 (0-34)
  • TGAB = <1 (0-0.9)
January 2021 (fasting):
  • TSH = 2.26 (0.465-4.68)
  • Free T4 = 1.08 (0.75-2.09)
  • Free T3 = 3.87 (2.77-5.27)
  • TPO AB = 0.3 (0.0-0.9)
April 2, 2021 (non-fasting, 2:45 p.m., ordered by endocrinologist):
  • TSH = 1.7 (0.465-4.680)
  • Free T4 = 1.01 (0.75-2.09)
  • Total T3 = 0.9 (0.9-1.8)
April 26, 2021 (non-fasting, 1:30 p.m., ordered by naturopath):
  • TSH = 2.33 (0.450-4.500)
  • Free T4 = 1.16 (0.82-1.77)
  • Free T3 = 3.0 (2.0-4.4)
  • TPO AB = <9 (0-34)
  • TGAB = <1 (0.0-0.9)
June 2021 (non-fasting, 11 a.m., after 5 weeks of 25 mcg levothyroxine):
  • TSH = 1.49 (0.465-4.680)
  • Free T4 = 1.04 (0.75-2.09)
August 9 (non-fasting, 10:30 a.m.; after 5 weeks of 37.5 levothyroxine):
  • TSH = 1.5 (0.465-4.680)
  • Free T4 = 1.03 (0.75-2.09)
  • Free T3 = 3.62 (2.77-5.27)

If you’ve read this far, thank you! I appreciate any feedback that you have!
 

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Welcome to the forum!

I take both T4 and T3 hormones.

Has anyone checked your Ferritin levels? Low ferritin causes restless leg - I had this issue and once the ferritin levels were addressed ( iron supplements then ablation) my RLS completely resolved.

The reason you may have hypo symptoms such as muscle aches is that your FT levels both FT-3 and FT-4 should be minimum 1/2 range up to 3/4 range depending on how you feel. I suggest withholding thyroid hormone prior to lab draw and consistency on time of lab draw for most accuracy since keeping a lab tracking sheet is invaluable when trying to dial in thyroid hormone replacement meds. Fasting or not does not really matter with thyroid lab draw's but taking or not taking meds prior to draw is something to pay attention to.

Your most recent labs show you are hypo and not even at 1/2 range for either FT.

If you decide to add T3 hormone , Ferritin and D levels should be at least 3/4 range to avoid any side effects from adding the T3. Also, since FT-4 will also increase make sure when beginning addition of T3 to not exceed 1/2 range

Has anyone ordered a scan of your thyroid to determine why it's not functioning? I'm wondering if you have nodules impacting function.
 

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Discussion Starter · #3 ·
Thank you very much! Yes, my ferritin and vitamin D levels were:

April 2, 2021:
  • Vitamin D level, total = 42.9 (range = 30-100)

April 27, 2021:
  • Ferritin, serum = 42 (range = 15-150)

So, if I did my math correctly, it looks like I’m quite low for both.

From your personal experience in finding these ranges, what book/source has been best for you in figuring things out?

No, I have not had a scan of my thyroid. Both my primary care doctor and the naturopath did a check in the office and did not feel anything. (The endocrinologist didn’t even lay her hands on me.) Is it common for a hands-on palpitation to miss the nodules and that I should request a scan because I have so many symptoms?

Thanks!
 

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I have found 3/4 of range works better for me on both those labs. Do you have any thyroid labs with ranges you can share.
 
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