Thyroid Disorders Community
Hypothyroid and Muscle Issues/Weakness
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Hypothyroid and Muscle Issues/Weakness

Hello everyone,

I was hoping someone could comment on my situation and let me know if I am on the right track. It is a bit of a long story, but not too long compared to some.

I started having ankle pain in July 2012 following an ankle sprain 4 months earlier. Pain went away initially after the sprain. I stopped all activity and began physic/chiro etc.. The ankle would not heal and I began getting right ankle pain as well in the same area in September 2012. Again, physic and such did not help. MRIs, etc came back negative.

In November 2012 I pulled my right hip/TFL. In December 2012 I began having right arch pain after climbing the stairs one day. In January 2013 my left knee started hurting after doing some stretches from physio. It seemed whenever I wanted to ramp up training something else happened.. sigh.

In January my MD ran a whole slew of test, but not a thyroid test. However, I went to a naturopath and asked her to test my TSH FT3 and FT4 due to my own research. Turns out my TSH was 5.98 and FT4 was 15 (12-22 range) and FT3 was 4.2 (2.6 - 5.7 range). As per all our doctors unless you have a good one I started on Synthroid 25 mg last month (april 1st) for thirty days and was sent for blood work after the 30 days. After 30 days my TSH was 2.5 and my FT4 was 17 (12-22) and FT3 was 2.8 (2.2 - 5.7). So it appears I am getting the t4 required, but I may have an issue converting it.

Upon reviewing and reading up on the condition I asked my MD if I could try ERFA and he agreed, so he started me on 60mg a day. I take my ERFA in the a.m 1 hour before breakfast and I don't take nay supplements until lunch. I currently take a multi vitamin (veggie), 400mg of magnesium, 4000 IU of vit d, AOR Thyroid Support, Rhodiola 500mg x 2 a day.

I have been taking ERFA for 7 days now and I have experienced no improvements. I find after I do any signficant activity my muscles are seriously weak for a few days until they recover. My ankle, hip, knee, foot have not improved at all. My energy has improved slightly and I feel less moody, which is good.

I have two kids under 3 and it is challenging to get around, but I do it.

Obviously, I need to wait more time for the ERFA to kick in, but I think I will ask for another dose increase, possibly 1.5 grains (90mcg) next time I go for blood work depending on what the FT3 says. My wife is a massage therapist and I go to physio, however, none of my muscle  issues in my ankle, knee, hip, or foot have improved.

I also got tested for hashimotos but the test came back negative. I get lots of sleep 8+ hours and I have no issues going to bed at all. I don't have any issues getting out of bed.

I've read a lot of posts on here about thyroid and muscle recovery/pain/injury and I would appreciate any feedback you have.

Thanks in advance,

Ryan
22 Comments Post a Comment
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649848_tn?1357751184
Is your initial FT3 typed correctly?  If so, FT3 actually decreased on the synthroid, which is quite odd.  25 mcg synthroid is only a starter dose and I'm sure your doctor planned on increasing as your body got used to the med. I think it's too soon to diagnose a conversion problem, but since you've gone to the ERFA, that may be a moot point.  

It's not unusual to have muscle/joint aches/pains when hypo.  It takes 4-6 weeks for T4 med to reach full potential in your body, then you  have to give your body time to get well once your levels begin increasing.

What test was done that ruled out Hashimoto's?  There are 2 of them that have to be done or you could be misdiagnosed.  The tests are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).  Some people have one or the other, some have both, so without both tests Hashi's can't be ruled out.  Of course, your treatment won't change; it's just that you'll know that your thyroid will continue to produce less hormones as time goes on, so your meds will have to be adjusted periodically.
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Avatar_m_tn
Thanks for replying. Yes that is my initial FT3 reading. I thought it was fairly normal as well. I had both tests done i believe but I will confirm with my naturopath.

I just read a lot about how good T3 is so when I saw my second lab test and it was 2.8 I wanted to try the ERFA. Do these muscle pains actually go away? I know it has only been a short period of time. I've never had anything wrong before besides a little acid reflux a few ears ago and pneumonia a few times in my childhood. I'm a 28 year old male.. Although it feel like 70 some days. Glad to know there is support here.
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649848_tn?1357751184
Okay, I just wanted to be sure there wasn't a typo in that FT3 result......

Yes, do make sure both of the antibody tests were run.  Hashimoto's is the # 1 cause of hypothyroidism in the developed world.  Like I said, it won't change your treatment, but at least you'll know that your thyroid will steadily decline until you will be completely dependent on the medication.  There are a few people that have it, without antibodies.  

Have you had a thyroid ultra sound to determine whether or not you have a goiter (swollen/inflamed thyroid) or nodules?  Both are very common with Hashimoto's and are usually nothing to worry about unless physical characteristics are "odd", but it's still nice to know whether they're there or not.

There's nothing wrong with ERFA.  We have quite a few members, currently, on it.

I can't guarantee that all the pain will go away, but once you've had a chance to let the hormones settle in and do their thing, they should start diminishing. I used to have horrible pains, that my doctor said were age related arthritis, but a lot of them went away when I started on thyroid med.  Chances are, you may have to tweak your thyroid med a few times before you get it right.  It's frustrating, but pretty much goes with the territory; the important thing is having a doctor who will work with you and test/treat clinically.

Oh, I meant to ask you -- what is AOR Thyroid Support?  Was it prescribed by a doctor?  Does the rhodiola help you at all?  I took it for a long time and it didn't seem to do anything.
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Avatar_m_tn
Thanks again.

AOR Thyroid Support is a mixture of iodine, selenium, zinc and other supports. My naturopath recommended it to help assist the thyroid. Although I read iodine for autoimmune thyroid conditions can cause flares and make condition worse I haven't felt that way being on it.

I have felt both to be useless in my opinion, since it is not helping me convert T4 to T3.

I will need to lean how to develop patience as I understand this is a long process. It is very fascinating to learn about, although sometimes very overwhelming.

I just uped my vit d as well so I hope that helps although I haven't had it checked. I read emulsified vit d is the best if you have digestion issue. Oh my son is calling ttyl!!
Thanks again.
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649848_tn?1357751184
You're right that iodine can make Hashimoto's worse, but it doesn't for everyone.  I do have Hashimoto's and I also take a supplement that has iodine.  I've had no ill effects from it.

Selenium has been shown to help with the conversion of FT4 to FT3.  Zinc is necessary for quite a few body processes.  You don't know if the supplement is helping you convert or not, because you don't know for sure that you  have a conversion issue. It takes a while...... I've been on selenium for about 4 years and when I'm taking it regularly, my FT3 tends to be higher than when I'm sporadic.  

You might want to consider a good magnesium supplement.  Magnesium is known to help with muscle/joint aches/pains. It's also calming.  Get magnesium citrate or glycinate, not oxide as that's little more than a laxative.  Calcium may also help with the pain.

Yes, you're right; this can be a long process, so you have to have patience; then when you run out of patience, find some more, because you will always need it.
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Avatar_m_tn
Thanks. I will continue taking the supplements I am on until my ND says to stop. I find it amazing ND's know so much more about the body than Dr's and they don't have as much school.

I have been taking 400mg of mag glycinate for about 2 months now.

I also forgot to mention I have put on 10 pounds since July and I have some cold intolerance, fatigue, and irritability/feeling down. All common to hypo.

I will ask my MD about the ultrasound and see what he says. He is very receptive of my wants/needs and is not arrogant, so I lucked out there. I will try calcium as well, my multi has 400mg, but that is probably not enough.

The multi I am on is top of the line it is called NHF Multi SAP. I find when you see a ND they always recommend top of the line supplements.

I see a lot of people here recommend waiting 4-6 weeks before increasing doses. The STTM page recommends possible increase after 2 weeks.

What are your thoughts on that? How long did it take you to figure everything out?
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649848_tn?1357751184
I'm off to bed because it's late in my world and I'm kinda old, but I did want to respond to this comment:

"I see a lot of people here recommend waiting 4-6 weeks before increasing doses. The STTM page recommends possible increase after 2 weeks."  Is that where you got the idea that you need desiccated (ERFA)?  Some desiccated meds do recommend increasing at 2 weeks, but you need to go by the manufacturer recommendation, not a website that's not part of the manufacturer.

T-4 meds take 4-6 weeks to reach full potential in the blood.  Meds with T3 tend to work more quickly, but that's not a given for everyone.  I'm on a T3 med and it took quite a while for my levels to get where I needed them to be and then stabilize at a point that feels comfortable to me.

There are no hard and fast rules; it's all about what works for you and make you feel the best.  A lot of getting where you need to be is experimental, because we're all different so, sometimes we have to go outside the box; almost none of us have been textbook cases; that's where the patience comes in.  What works for me, probably won't work for you; all I can do suggest various things/dosages to try, then you have to discuss it with your doctor.

"How long did it take you to figure everything out?" I was dx'd in early 2008 and because of bad doctors, etc, it's only been the past year or so that I really feel "well"......sounds like you're lucky enough to have a doctor that will do what you ask..... maybe it won't take you so long -- that's always our hope.

Oh, and I have to mention that my "recovery" was pretty much due to members of this forum (some no longer active) that gave me the information/hints I'm giving you.  We do it in hopes that others can get there more quickly than we did......
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Avatar_m_tn
To be honest I started on a desiccated med because my T3 levels were low on the latest blood test. I also read a lot about people who suffered from years of being on T4 only meds, so I wanted to try it.

The manufacture doesn't make any recommendations. It's like taking it sublingual. I don't believe any company would come out and say that but I could be wrong.

I'm glad you got help from here. That I why I signed up.
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649848_tn?1357751184
One site I saw recommended that ERFA be increased within the first 4 weeks. If the manufacturer doesn't make any recommendations, you should discuss increases in med, with your doctor, based on current levels of hormones.

You might find that you have better luck with the med, if you split your dose and take 1/2 in the morning, the other 1/2 around noon, with your vitamins/minerals at bedtime.  Many of us on T3 med find that by splitting our dose, our T3 levels stay more stable throughout the day, since T3 has a tendency to enter the blood stream relatively quickly, then it's gone in a few hours.

When are you scheduled for retesting?
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Avatar_m_tn
Thanks a lot for responding!

I see my MD in three weeks, which is exactly 4 weeks after my dose increase. I will see what the results say and increase if required.

I have a pharmacist friend who said if I was going to split it I should get the 30mg pill. He said he would order it for me.

Do you take food with your supplements at lunch? I didn't want to split it for that reason, but you find it works okay?

I've also heard t3 has a short half life.

I can't say I feel better yet, but I also don't feel worse. I've been doing too much around the house and yard as I'm paying for it. My wife doesn't sympathize with me too much, but she is learning about this too.

Thanks for all your advice :)
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798555_tn?1292791151
FYI:

The actual hormone in prescription dessicated porcine meds is basically the same. Really. The difference is in the fillers. Some brands get specific in dosing directions, some do not. The fillers is what makes some work better and some not.

Armour is the most informational. The info PDF on the Armour site does say to increase 15mg per 2 weeks. And it sounds like STTM supports this idea, for a good reason, natural pork thyroid takes the body some time to get used to. Increase to fast and you might feel hyper and worse than you were to begine with. Very seldom is any thyroid hormone med is started at full dose. There is usually the starter dose, its from that point that dessicated is best increased 15mg per two weeks up to the next level to be tested at. Many people have done this with comfort and success.

Erfa makes a great product, there instructions are , well, lacking. They don't even mention taking sublingual, and it works best that way. I have used Erfa for three years after experiencing supply issues with four other dessicated brands in the past (two of which are no longer in existence). Its with all that changing that I learned to respect the 15mg per two week "suggestion" - after going hyper from too much to soon. We assume Drs know all this, I never met ONE that did.

Erfa splits easier than the US manufactured dessicated brands. Many people just get 1 grain pills and use this for the 'building blocks" of whatever your dose is now or will be in the future. Why bother with the limited sizes that desicated meds come in? They dont offer enough sizes for certain needed doses. A daily dose can be fine tuned with in 15 mg by splitting a 30mg in half or a 60mg (1 grain) into quarters. I use 135mg per day from 60mg pills (2 1/4) that I just put in a micro pill container.  I did have a Dr suggest this, and its way easier than changing the script every time I increase.

This way my dose is optimal. That is impossible with the offered sizes of mg's. You really need to think of the T4 as a weekly dose divided seven ways since its the storage hormone. And what little difference there is in T3 from splitting a 60mg into quarters (15mg) you wont notice.

Many people dont feel better till at least one month or sometimes longer on dessicated. I didnt "max out" my symptom relief till after about one year on Erfa, but my thyroid and adrenals were a mess at the time.

Erfa, as well as the pre '09 formulation of Armour did help my muscle and tendon pain a lot, but did not eliminate it. With any T4 only med, I felt like I had a straight jacket on and was tested for other diseases at that point. I have done a lot of muscle and tendon work to help this and decided to learn trigger point therapy, active release and myofacial release myself to deal with this - slowly getting better. 400mg of magnessium glycinate with malic acid before bed helps too.
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Avatar_m_tn
Okay so I don't know if I am going crazy but I honestly feel worse since being erfa. Is that normal? My muscle issues feel worse along with leg twitching more than usual.

Am I under medicated? I was on 25 mg of synthroid and I am now on one grain of erfa, which is equal to 32mg of t4 and 8 mg of t3.

Or perhaps I didn't go up quick enough? Synthroid started march 29, erfa started on April 28.

Thanks for your help.
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798555_tn?1292791151
You really cant judge a thyroid med in one week. Some people do feel worse on any dessicated the first month. Your cells are still looking at this new hormone wondering what to do with it. Many have to just tough it up for that period. Its just something you have to deal with in order to see the light at the end of the tunnel.

Even if your med was a perfect dose, your body still is not used to it, and you would not feel good.

I felt bad for 2 to 3 months, since I was very hypo and need to increase slowly.

I increased to fast from being impatient at one point, and went hyper for a while- that was worse!  

I have never been on that low of med, (cant help you in that area) I was very hypo when diagnosed.

easy to get confused- you were on 25 mcg of synthroid not 25mg. Synthetic is in mcg, dessicated is in mg, different measurements.
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Avatar_m_tn
Thanks Moose. Appreciate the help and reassurance! Yes it was a starter dose of 25mcg. I will be more patient.

I also got only one test for the Hashimotos done. My level was 10 so my ND said not to bother with the other test (Tpo) I believe.
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798555_tn?1292791151
"My level was 10 so my ND said not to bother with the other test (Tpo) I believe"

TPO and TgAb are two separate thyroid antibodies. Just one positive test can mean Hashimoto, dont need to test positive for both to have it. Most Drs just go ahead and test both at the same time. It is a good idea to find out if you have Hashi.
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Avatar_m_tn
Okay. Thanks for the information. When I asked my ND if we needed to test for both she did not seem impressed even though I am paying for the blood work. She said my antibodies were so low that it wouldn't warrant testing further. However, I will go to my MD and ask since I won't have to pay for it either.

I guess I am not used to demanding tests as I always though Dr's knew everything. I am learning otherwise. Thanks again for your time.
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Avatar_m_tn
Hi All,

I'm back after my recent blood tests.

Good news my TSH dropped to 1.23 and my FT3 is 5.1 (2.9-6.0) and my FT4 is 9.6 (7.2-21.0). I have felt slighlty better the last 7 days with seldom knee/hip pain while doing more physcial work.

However, I have some other news I got a reading back for high ferritin. My levels were 328 ng/l. Anything over 300 is considered iron overload. I did some follow up blood work and my total iron storage capacity is 66 (range  45-63) and my transferrin saturation is at 35%. My ND thinks it might be an early sign of hemochromatosis, which would explain the joint/muscle pain as well as hypo issues and LDL/HDL cholesterol issues.

Just wondering if anyone has experience with iron overload issues and being hypothyroid.  

Here are my results:

Iron : 23 (10-26)
UIBC: 43 (19-51)
TIBC: 66 (45-63)
Iron Saturation: 35%
Transferrin: 2.9 (2.1-3.6
Ferritin: 328 (80-300)

Thanks again for your help :)

Ryan
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Avatar_m_tn
Just wondering if someone could comment on my results.

I am currently on 90mcg of Erfa have been for 6 weeks.

My latest blood work is:
TSH .15 (low)
FT4 is 9.5 (12-22)
FT3 is 4.1 (2.2 - 5.9)

I am still having joint/muscle pain and I believe I need to get some direct t4 supply as it is very low. However, my MD receptionist said he would not increase dose, so I will likely have to go in and discuss this with him.

What are your thoughts adding 25 mg of t4? I don't want to go hyper, so I may have to lower my T3 meds down to 60 while adding the t4.

I am questioning now whether I ever even needed direct t3 as my first test results indicated a good t3 supply. My initial TSH was 5.98 and FT4 was 15 (12-22 range) and FT3 was 4.2 (2.6 - 5.7 range).

Please help and thanks in advance.


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Avatar_m_tn
Not an area I know much about, but in doing some reading, I think your first concern should be the possibility of hemochromatosis, as mentioned by the doctor.  The reason I say this is that it fits with the pattern shown on in this link. Your high ferritin is a strong indicator, along with the high TIBC.  

http://labtestsonline.org/understanding/analytes/ferritin/tab/test

Then if you go to this link, there is lots more info on tests, symptoms, treatment etc.  Note that joint pain is one of the symptoms.

http://labtestsonline.org/understanding/conditions/hemochrom


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Avatar_m_tn
Thanks. I've had my levels retested and the ferritin went down to the 175 level so my MD said it could have been an infection or ongoing inflammation. I've donated blood a couple times too with no avail.
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Avatar_m_tn
I was more looking for any help with the latest thryoid blood work. I think my MD is scared becuase my TSH is .15.

My FT4 is in the tank and I don't take the T3 in the morning before the blood test, so I know the FT3 is actually a bit higher than stated above.

any comments/suggesitons? I think I am going to try to cut back 30mg of Erfa and add 25 mcg of t4.
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Avatar_m_tn
I was actually looking up the conversion at it should be 30mcg of erfa to 50 of t4.
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