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Hypo with new weird symptoms

I have been hypo since I was I was 17; I am now 35.  I was prescribed Synthroid and other than fatigue and plantar facititis on occasion I never experienced any other symptoms.  In January of this year my muscles started feeling as if I had ran a marathon the day before, I developed plantar facititis in both feet and my hands felt stiff.  All tests came back normal except my TSH ultra sensitive was .35 which on their test was hyperthyroid but I was kept on the 125 mcg of Synthroid and my ANA 320 speckled.  

I then saw a functional medicine doctor and she ran a celiac screen and it came back positive.  I immediately went off gluten and due to many other deficiencies went on many supplements.  The first two weeks I felt wonderful; then I started being freezing all the time.  My fatigue increased, my psoriasis on my scalp went crazy, my skin was oily but dehydrated.  I developed painful tendons in two of my fingers that causes them to be stiff and swollen.  My overall body pain increased as well, my entire body at night feels overworked and painful especially my arms.  I have knots in some of my muscles in my upper back.

I finally went to a new Endocrinologist b/c I was so sick, I just felt awful.  She tested me and my TSH was 12; she also said what I really needed was T3 but I can't find the other levels right now, I have to look for them.  She upped my T4 to 137 mcg and changed the medicine to Tirosint and started me on 30 mcg of compounded T3.  I am starting to feel a little better but my muscles still hurt and I am taking 800 mg of Ibuprofen 2x a day.

Any suggestions??
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1756321 tn?1547095325
Reasons for needing to adjust medication: progression of autoimmune thyroid disease, dietary fiber or soy protein supplements, H pylori infection, atrophic gastritis, proton pump inhibitors, celiac disease, short bowel syndrome, lactose intolerance, intestinal giardiasis, various drugs, iron and calcium supplements, weight gain, estrogen, poor cellular response to thyroid hormones.

Absorption issues are high on the suspect list for the increase in medication since you have Celiac disease. A very informative article "The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying" is worth reading. This is a few cherry picked excerpts...

"The University of Chicago has one of the leading treatment and research centers for Celiac Disease in the U.S., so my jaw dropped when they posted this:

“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal.”[1]."

"So should Celiacs eat a gluten-free diet?

Yes… gluten is still the kryptonite in Celiac Disease, don’t ever eat it.  Following a gluten-free diet is a requirement for treating this autoimmune condition… but you can’t stop there.

This evidence clearly shows that only following a gluten-free diet doesn’t fix leaky gut, gut inflammation, or a damaged gut lining.  That means the gluten-free diet isn’t enough to treat Celiac Disease patients and anyone using it as the only protocol is at risk for dying much sooner than they should…"
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Avatar universal
Just curious.  Do your muscles feel better upon waking?  Is it after moving around they begin to cramp and hurt?

A new doctor switched me to Armour in February and some of my severe muscle pains resolved, but not all.  This has been going on for over a year.  

I kept going back to my new doctor.   I didn't leave anything out.  After a night with a pulse ox recorder this last week I found that I sleep 22% of the time below 88% and drop into 69% oxygen saturation. My pulse climbed to 140 bpm at the 69%. I would have never thought that was going on.  During the day I am a normal 97 - 98%. She said each night I am causing muscle damage (among other).

Until the sleep study I will be on oxygen at night.  But it doesn't get here until Monday and I feel terrible.  

I have gone the supplement route, muscle relaxer, everything.  Ibuprofen just stopped working. I was angry with my doctor that she wouldn't look at adrenals, reverse Ts, etc...But I sent along with taking the pulse ox recorder home.

Even the sleep tech I talked to said it was impressive she thought of oxygen drops for muscle pain.

I also have pages and pages of blood tests.  I have had muscle studies (EMG) nerve studies (NCS), MRI for possibly MS, CT scans.  

Just thought I would add.....At one point I kept increasing my Armour til I was up to 120 mg....I still felt terrible and couldn't tolerate it that high.
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Avatar universal
I have never heard of CoQ10; I'll have to research it.  I know my thyroid is out of whack because sometimes I will literally start freezing... shivering, teeth chattering.  My body is rebelling.  My doctor will recheck my levels in 6 weeks.  Also back before Christmas before all this, the nurse at my former doctor's office accidently filled my synthroid @ 200mcg and told me my levels had been changed.  So after taking it for a couple months, then being put on correct dose my TSH was .350 so my body is just messed up.  However if my level was that on 200 mcg what does that mean for my thyroid in general?  I see most taking much lower doses, so is my thyroid that damaged??
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1756321 tn?1547095325
Chelated magnesium (magnesium glycinate) is magnesium bound in a complex of glycine and lysine so it's easily absorbed and highly bioavailable.  The RDA for elemental magnesium is 420 mg/day for men and 320 mg/day for women.

You may still have malabsorption issues due to gut inflammation. Your pain may just be related to low thyroid hormone.  Another thought is low CoQ10.  Of significant note if your doctor has prescribed a statin (cholesterol lowering drug). Statins lower CoQ10 hence why up to 75% of statin users experience pain.  CoQ10 is vital to the production of ATP.
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Avatar universal
It says chelated magnesium 200 mg from 2000 glycinate \ lysinate che late.

The stiffness in my shoulders and front of chest is agonizing.  And upper legs.
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1756321 tn?1547095325
What type of magnesium supplement are you taking? And how much elemental magnesium is in the supplement?
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Avatar universal
Thanks!! I'm taking magnesium but maybe I need a liquid for better absorption?? I'm taking around 1600 mg under doctors orders but no change really.  But they're pills?
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1756321 tn?1547095325
Didn't C & P enough lol...

Free T3 reflects the biologically active form of T3 that can generate production of energy (ATP - adenosine triphosphate).  
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1756321 tn?1547095325
I"m going to be very lazy and copy and paste one of my old answers...

For muscles to completely relax, filaments must lengthen and separate and this requires energy (ATP). ATP must be bound to a magnesium ion in order to be biologically active. So two of the causes of tense muscles are low levels of magnesium and low thyroid hormone.

Ah C & P - great invention. :) When you have enough ATP is the answer. Hopefully that isn't not too long but if you aren't absorbing well that is going to cause problems.
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Avatar universal
Wow who knew.  I just feel as if my entire body is broken unless I take 800 mg of ibuprofen in the morning and before bed.  

How long until I should notice a difference or rather until my levels are regulated??
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1756321 tn?1547095325
Anything can happen with thyroid disease. :) But yes i would have to assume you have Hashimoto's thyroiditis.

"It has been shown in studies that the prevalence of celiac disease in patients with autoimmune thyroid disease is 4-15 times greater than that in the general population. Various findings for the prevalence of celiac disease in Hashimoto's thyroiditis have been reported, between 3.3% and 4.8% in adults.

According to a 2007 study published in the World Journal of Gastroenterology, patients with Hashimoto's thyroiditis should be screened for celiac disease and patients with known celiac disease should be screened for Hashimoto's thyroiditis." - Celiac Central - Thyroid Disease

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Avatar universal
Thanks for the feedback.  I always take my medicine 1 hour before I eat with water only.  

Thanks, Red Star, I just wanted confirmation that these symptoms could be thyroid related.  I am hoping the medicine adjustment will help.  Could all these things happen while already on medicine if it is fluctuating??

I did not know Synthroid could be an issue either until someone at the celiac group said something about it and I called Abbott.

Other than antibody testing are there any signs of Hasimoto's?
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649848 tn?1534633700
COMMUNITY LEADER
I've never heard of anyone with celiac not being able to take synthroid; nor have I ever heard of cross contamination with gluten.

telus2 -- it's entirely possible to go from TSH of 0.35 to 12 on the same dose of medication, in a short time.  If Hashimoto's is present, antibodies can speed up/slow down the destruction of the thyroid and as the destruction progresses, med doses have to be changed.
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1756321 tn?1547095325
Your weird symptoms are listed hypothyroid symptoms. Just an example here...

"10. Muscle and Joint Pains, Carpal Tunnel/Tendonitis Problems.

Aches and pains in your muscles and joints, weakness in the arms and a tendency to develop carpal tunnel in the arms/hands, tarsal tunnel in the legs, and plantars fasciitis in the feet can all be symptoms of undiagnosed thyroid problems." - Top 10 Signs That You May Have a Thyroid Problem - About Guide

Celiac disease causes inflammation in the lining of the small intestine (most of the nutrients from ingested food are absorbed).  Celiac disease is a noted cause of interfering with thyroxine absorption.  Gluten is found in many non food products as well. Best to not lick postage stamps. :)  
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Avatar universal
It would be extremely unusual for your TSH to go from 0.35 to 12 on the same synthroid dose.

If you take your synthroid with food or drink you will have poor absorption of the synthroid and that could make you go hypo. It happened to me.

Supposed to take synthroid 1/2 to 1 hour before breakfast...

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Avatar universal
And I am unsure about the antibody testing.  I will have to ask my parents.
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Avatar universal
Thank you for the response.  I actually went to this doctor bc she was recommended by my aunt.  She switched the T4 on my request bc synthroid my have cross-contamination with gluten so I needed a new medicine. (I am a celiac).  i just relistened to her message and she said I was "quite hypo" and that I needed more T4 but what I really needed was T3.  I can't see her anymore bc we are moving and the distance would be even greater.  (I traveled over 6 hours).  I don't know anything about the dosing for T3.  The nurse just called me and said she'd have to call me back with my levels.  I feel ok.  I just don't know what to expect and I would do anything for the muscle pain and stiffness to go away.

I was tested for RA and the RA factor was negative.  My primary care doctor says my issue is tendonitis which causes trigger fingers and has nothing to do with my joints.  I just want to be well.  
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649848 tn?1534633700
COMMUNITY LEADER
Personally, I think your new endo changed too many things at one time and you may be headed for trouble.

I agree that your TSH of 12 is too high and indicates hypo, however, I do not agree with changing a medication brand, dosage, plus adding a whole new medication, all at the same time.  Furthermore, 30 mcg of T3 is a pretty hefty dose and people don't need that much, particularly to start with.

Typically, T4 med is decreased by 25 mcg for every 5 mcg of T3 med.

IMO, your new endo should have used a more practical, less drastic, approach, making only one change at a time.  If she wanted to switch you to Tirosint, she should have done so, without raising your dose or adding the T3.  Being a gelcap, Tirosint is more fully dissolved and absorbed than pill type medications.  Many people find that they actually need a lower dose of Tirosint than they did their pill type medication, for this reason.  

After changing the medication, she should have requested another set of labs in 6 weeks to see how you were doing.  At that point, she could then have increased the dosage, to 137 mcg, if need be, but still should not have added the T3, at that point.

Once the T4 dosage was adjusted as well as could be, she could then have added a small dosage of T3 (typically, 5 mcg is a starting dose), increasing as needed and testing 5-6 weeks after each change/addition.  

With all the changes being made at once, you have so many variables, it will be hard to figure out what steps to take if/when you hyper.  With that much T3 med as a starting dose, make yourself aware of the symptoms of hyper and be ready to react to them.

Please post your FT3/FT4 levels, with reference ranges, when you find them. Do you know if you have Hashimoto's?  Have you been tested for RA?

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649848 tn?1534633700
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