For those without a thyroid

[Annegirl1919]

I’m curious if after having your thyroid removed you suffered from muscle/joint pain. Do you still? Has it resolved? If you had it and were able to get it under control, I’d love to hear what worked.

[Lalatoot]

I have some sort of thyroid but had RAI.

Muscle and joint pain were debilitating till I added T3 to my levo. Only a little T3 to make up for my inefficient conversion.

[SeasideSusie Remembering]

Annegirl1919

Are you on thyroid hormone replacement after having your thyroid removed?

If so what dose?

What are you latest results, including reference ranges for

TSH

FT4

FT3

Muscle and joint pain is very often low vit D.

We Hypos often have low nutrient levels.

Have you had the following tested, if not it would be a good idea to do so (either through your GP or privately):

Vit D

B12

Folate

Ferritin

[humanbean]

When did this muscle/joint pain start? Was it almost immediately i.e. within days after surgery?

When some people have their thyroids removed they may end up with one or more of their parathyroid glands being damaged or removed as well. The parathyroid glands (there are four of them) control calcium, phosphorous and magnesium levels in the body. I'm not sure about phosphorous, but having low levels of calcium and/or magnesium can cause tremendous problems with muscle spasms, pain and cramp.

You might find this link of interest, although I'm sure there are probably better links.

patient.info/hormones/thyro...

Having had your thyroid removed you should have had your calcium levels monitored until they settled down after surgery.

[Annegirl1919]

my b12, vit-d, ferritin, folate-all good. Labs look great-

Tsh: .5

ft3: 3.11

ft4: 1.33

I have used t3 medicine. When it’s high enough, I have no pain, but when it’s high enough, I feel it affecting my heart, and I feel crazy. I have ups and downs all day, as the doses peak and fall. I hate it. I tried an extended release compounded version, but that took hours to work, but kept me up all night. So I’m currently weaning off it because I’ve been on ndt or a t4 med plus a t3 med all but the first 4 months after my surgery (when, ironically I don’t think I had pain). But with this weaning, the pain that was gone is back in full force. I want to believe my body will figure out how to use the t4 and my muscles and joints won’t ache and burn like they are currently.

[Jazzw in reply to Annegirl1919]

Do you have the ranges for those blood tests? FT3 looks like it could be too low. But it’s hard to say without the ranges.

And are you sure your B12/D/ferritin/folate results are great? “In range” is often far from optimal—the ranges are ridiculously wide in some instances. For example, you’ll need your ferritin level to be halfway through its range for your body to find it easy to make use of T3 or to convert T4 to T3.

[humanbean in reply to Annegirl1919]

my b12, vit-d, ferritin, folate-all good.

Sorry, but past experience on the forum is that doctors tell patients that results are all good just because they are all in range - they could still be miles away from optimal. So we've learned to ask for the actual numbers and reference ranges. You'll have to humour us.

If your heart goes too fast when you take T3 there is a possibility that your iron and/or ferritin are too low.

[Annegirl1919 in reply to humanbean]

I take iron every day and get iron infusion. Iron and ferritin are about halfway in range-honestly higher than they’ve ever been, even when I was healthy.

[Jazzw]

That’s going to depend on the circumstances.

Many doctors, and indeed endocrinologists (who you’d hope would know better but often don’t) routinely prescribe thyroid hormone replacement according to TSH alone, seemingly oblivious that the TSH level doesn’t tell the whole story and can often present a very misleading picture. So, many many many patients are left to cope as best they can on too little thyroid replacement hormone, trusting their doctor when told their results are “in range” and that it can’t be the level of thyroid medication to blame. Instead many doctors seem hellbent on diagnosing everything from depression to menopause rather than considering whether the prescribed levothyroxine dosage is too low.

If you’ve had a wonky thyroid for a while (prior to it being removed) or if it’s been a while since it was removed, the chances are you’ll have low levels of B12, folate, Vit D and ferritin). A side effect of poor thyroid function or undermedication is poor gut absorption of nutrients. Low levels of any one of those will cause big problems.

So you could have one, some or all of these issues—insufficient thyroid hormone replacement and low nutrients. You’re probably going to have to turn detective to find out (alas, it’s unlikely your doctor will put in the effort).

What’s your story (if you don’t mind sharing)? Have you been without a thyroid for long?

[Annegirl1919]

Ft3 is above 1/2 way in range. I have a very thorough doc whose mom has Hashimoto, and so she doesn’t just look for in range. I have a hemotologist and have gotten iron infusions the past two years, so my ferritin is as good as it can be. It has been 5.5 years since my thyroidectomy. No thyroid problems before that.

I am most curious if anyone had muscle and joint pain that resolved with time on t4 only medicines. Maybe with massages or some other non-medicine treatment.

[Jazzw in reply to Annegirl1919]

I’m glad you have a doctor you trust. I would say that just above halfway might not be high enough for your FT3. Undermedication symptoms can look and feel a lot like over medication (my heart rate and blood pressure only returned to normal when my FT3 rose to the top of the range).

And sadly, levothyroxine is very often not enough for thyroid-less people. Thyroids produce a small amount of T3 in their own right and when you don’t have that any more, over time you’re going to miss it.

[Jazzw in reply to Annegirl1919]

Oh - and what about Vitamin D? Vit D deficiency is often the cause of aches and pains...

[Marz in reply to Annegirl1919]

What is the range for the FT3 ? Based on many posts/replies I have seen over the years - it looks low. The symptoms you mention could be low VitD and Low T3.

[Annegirl1919]

Also, Just for info-I’m definitely not undermedicated currently. Definitely bordering on overmedicated. Times of shaking, jumping awake with rapid heart rate, etc. Still the muscle and joint pain.

[Annegirl1919]

Except, I haven’t been without t3 in these 5.5 years except the first 4 months. I have had ft3 all the way from not in range to way over range and have felt awful at every point. Which is why I’m wondering if anyone has had muscle and joint pain that went away on just t4 medicines. I guess maybe if people are doing well on a t4 medicine, they probably aren’t in this forum, huh? 🙃

[Jazzw in reply to Annegirl1919]

That does tend to be the way. People who do well on levothyroxine don’t go looking for answers on Internet forums. Lucky so and so’s! 🙂

[Annegirl1919 in reply to Jazzw]

I know!!! I just wonder if my doc gave up on t4 too fast. They told me the first 6-12 months would be hard (a vast understatement), but 5.5 years later having tried every t3 combo under the sun, I wonder if I should have stuck the t4 out longer than 4 months. Given it the 6-12 they said it would take.

[Jazzw in reply to Annegirl1919]

Have you ever been on T3 only? Some people don’t do well on any amount of levothyroxine.

[Annegirl1919]

Vitd: 75, range 30-100

Frt3: 3.11, range 2.3-3.8

[Batty1]

Sorry your having pains!

I had a thyroidectomy in 2016 and crippled with body pains ever since. Two years ago after multiple Rheumy appts I was finally diagnosed with psoriatic arthritis, which was brought on by thyroidectomy (hormonal related) so Im told.

My only recourse was biological meds (I inject monthly) hasn’t 100% resolved my pains and Ive used drug store TENS Machine helped a bit and vitamins (D3,K2 and Magnesium) helps a bit too.

I really feel being properly medicated (based on how you feel) and not just a lab test would make all the difference in the world.... but at last the endos or Gps only follow the labs.

Im on 100mcg T4 and 10mcg T3 with a added 50mcg per week (Still have pains) I have had pains on T4 only and Combo and I now have a burning skin sensation which Im told could be Allydonia Fibromyalgia but Im not sure and I don’t know if its worth pursuing. Are you menopausal?

[Annegirl1919 in reply to Batty1]

I am so sorry!!!! This sounds horrible! No, I’m not menopausal.