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Hashimoto's, fatigue, PVC's and fine muscle twitching?

I am a 55yo male, who after feeling tired and foggy minded for several years, was diagnosed with Hashimoto's the summer of 2014 with a TSH of 15.5.  I was started on 50mcg Levo and felt minimally better only with regards to brain fog.  TSH then was tested at 11.5 and I was put on 100mcg of Levo.  After about 2 weeks at 100mcg the bottom fell out and began feeling terrible and started having continuous PVCs.  TSH was then tested and it was 7.  Doctor said this dose shouldn't cause PVCs.  Stopped taking Levo for a month hoping the PVCs would go away and was dealt with debilitating fatigue, coldness, depression etc that wasn't there two months earlier before taking any Levo and PVCs never went away.  This was the sickest I have been in my entire life and struggled to complete simple daily tasks.  After a month of not taking any levo, I was instructed by my doctor to start taking 100mcg again but constant PVCs and ill feeling forced me back down to 50mcg. I was then diagnosed with Hyperparathyroidism which was surgically corrected with the hopes that was causing the PVCs.  The surgery made me feel somewhat better but didn't do anything to stop the PVC's or fatigue but did allow me to increase levo without being on a death bed. However, upon increasing levo to 88mcg, I then began having muscle twitching all over my body that persists to today with the PVCs regardless of the dose.  Over the past 4 years, I have been up and down the dosage ranges of both levothyroxine and Nature Throid (50mcg - 200mcg levo & 1.5 gr - 4.0 gr of NT).  NOTHING has gotten rid of the fatigue, sleep disturbances, PVCs or muscle twitching.  Over the past 4 years, I have spent approximately $20,000 (parathyroidectomy, 2 ER visits, multiple EKG's and Holter's, echocardiogram (neg), nuclear stress test (false positive), heart catheritization (neg), dozen's of blood tests, deductibles etc.) out of pocket bouncing from doctor to doctor trying to find a Dr. who had a clue but they all seem completely ignorant to this disease.  I am as sicker today with more symptoms than I was prior to starting thyroid medication four years ago.  I can't tell you how many times Doctor's have said "your numbers look good, I recommend you stay at this dose" without even asking how I feel (which is usually terrible). I have spent the last 10 months dropping from 175mcg to 150mcg to 125mcg to 112mcg to currently 100mcg.  While the PVCs and twitching have reduced with these dosage reductions, they are still there every day as is the fatigue and general ill feeling.  I am now getting cold hands and feet, the ends of my big toes are going numb and depression is setting in which tells me I am now functionally hypo again.  I know I can't stop taking levo due to these symptoms but I also can't find a good dose in which I actually feel remotely well at.  In fact its been so long since I've felt good, I don't really remember how that feels as I haven't been there in years.  Does anyone else have Hashi's with fatigue, pvcs, muscle twitching and were able to find a solution to get your life back?

For what it's worth, here are my two most recent lab results:

125mcg:  (fatigue, PVCs, Twitching, ill feeling but better here than at 150mcg)
TSH = 1.07
FT4 = 1.3  (0.8 - 1.8)
FT3 = 2.9 (2.3 - 4.2)

112mcg:  (felt best here with lesser symptoms but all still there)
TSH = 1.7
FT4 = 1.2  (0.8 - 1.8)
FT3 = 3.1 (2.3 - 4.2)  Notice FT3 actually increased with less levo.

100mcg (been here 19 days and the fatigue, coldness, and depression are nearly debilitating).

I have already tried getting FT3 & FT4 in upper range but felt terrible there too and had major sleep issues.



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649848 tn?1534633700
COMMUNITY LEADER
Hi there... it sounds like you've been through the mill.  I'm sorry to hear that.

I have a few questions to ask you.  I hope you don't mind, answering them for me...

How long did you stay at the 125 mcg Levo?  

Have you ever tried a brand name of Levothyroxine, such as Synthroid or Levoxyl?  Some of us don't do well on some medications... some people react to fillers/binders or dyes in the meds; that could be what's happening to you.  

A lot of people do very well on Levoxyl and there's gel cap that's been out for a few years called Tirosint that has no fillers/binders or dyes so it's hypo-allergenic.  Tirosint is quite expensive but they do have a program for those who qualify to get it for free.  Usually, you can get free samples from your doctor to see if it will work for you, then you can talk to the company to see if you qualify for the free program.

That said, do you know what your labs were like when you were on Naturethroid?  

Your Free T3 is only at 42%, even at the higher level (on 112 mcg when it went up).  Most of us feel best with Free T3 in the upper half to upper third of its range; yours is only at 42% of the range at 3.1.  At the 2.9, of course, it's at rock bottom.  

In addition, the target for Free T4 is about mid-range, which is where your Free T4 was at the 125 mcg dose.  You turned upside down, huh?? lol

Have you ever tried taking a T3 med, other than the NatureThroid?  Cytomel?  If not, do you think your doctor would prescribe it for you?

Have you had vitamin B-12, vitamin D and Ferritin tested?  Many of us with Hashimoto's are deficient in Vitamin B-12 and D.  Vitamin B-12 deficiency causes the most horrible fatigue I can think of and both Vitamin B-12 and D are necessary for proper metabolism of thyroid hormones.  

Ferritin is the iron storage hormone and iron is also necessary for energy production, plus it's necessary for conversion of Free T4 to the usable Free T3.  

Without adequate amounts of these vitamins/minerals, we can't absorb/use thyroid hormones properly.  If you haven't had them tested, I'd strongly suggest that you ask your doctor to order the tests so you can supplement if levels are not adequate.  
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3 Comments
Hi Barb,

Thanks for the reply.

I stayed at 125mcg for 7 weeks and a day.  

Upon the start of my issues, I also thought dyes and fillers could be the issue.  I tried both Sandoz and Lannet generics and also just tried only using the 50mcg pills since they don't have dyes.  Also, NT doesn't have dyes and I had same issues on it.  My insurance won't pay for anything other than generic levothyroxine.

My NT results were:
1.5 grain (June 2016)
TSH = 2.51
FT4 = 0.7
FT3 = n/a

2.0 grain (Aug 2016)
TSH = 0.26
FT4 = n/a
FT3 = n/a

2.5 grain (Oct 2016)
TSH = .03
FT4 = 0.7
FT3 = 3.7

3.0 grains (Dec 2016)
TSH = .02
FT4 = .6
FT3 = 3.6

4.0 grains (Mar 2017)
TSH = .01
FT4 = 1.0
FT3 = 5.2 (high)

Ranges are the same as stated in my previous post.

When on NT, I couldn't get my FT4 anywhere close to midpoint without driving FT3 out of the upper range.  In fact, I could barely get it out of the bottom of the range!  Also, when on LT4, I have to get FT4 in upper quadrant to get FT3 at top of range and this resulted in constant PVC's and I felt terrible.  I have a spreadsheet of 4 years of tests and notes on how I felt at the time.  I'd be happy to send it to you if you would like to take a look.  Much to much to post here.

I have not yet taken any T3 other than NT.  My Endo will prescribe cytomel if we feel I cannot arrive at a good point on LT4, which I don't believe I will.  He does not know about my crashing on 100mcg yet.  I plan on contacting his office Monday to get the earliest available appointment to discuss.  With the recent coldness and depression, I have added  leftover 1/2 gr NT and I felt somewhat better, especially for depression and feet warmth in about 6 hours!  I then crash again a day or two later, presumably from the t3 wearing off.  This has happened twice now so I personally think that I need additional t3 in a more human-like ratio than NT since I couldn't raise my FT4 when on it.   I added NT this afternoon and am feeling better tonight.  I plan to do the same tomorrow.  If I continue to at least feel improvement, I believe that should be telltale in itself.  

I have not been tested for B12, iron, ferritin recently but did a couple of years ago and all were within range.  I did however notice that my B12 was 400 which was in lower third of range.  Vit D is good at 52.  Prior to parathyroidectomy it was 20.  I also plan on asking the endo for these tests as well as cortisol and any other adrenal tests he may think would shed some light.  He appears to listen and also tests for TSH, FT4 and FT3 and has stated that he is willing to have adrenal tests done.

Thanks,
d
Okay, so you took the 50 mcg pills without dye and that didn't make a difference, so it's probably not the dyes; that leaves fillers/binders.  You could call the manufacturers and ask what ingredients are in their pills; most will tell you or you can try a brand name... Most insurance companies charge for brand names at different tiers instead of simply not covering them.  

Another option is a website called GoodRx that I've used for some other things that insurance doesn't pay for.  With GoodRx, you print a free coupon and take it to your pharmacy for a discount on drugs.  I've seen huge discounts on some things.  It varies by area, but just a "for instance", in my area, the street price of a 90 day supply of 112 mcg Levoxyl is $96 at Walgreen's.  With a GoodRx coupon, the same 90 day supply of 112 mcg Levoxyl can be purchased for $36.74.  That's only $12/month, which I realize is more than generic, but it's still pretty reasonable.  You said you've already spent a lot of money in your quest to feel better; $12/month might well be worth it.

So that's one option...

As for the desiccated hormones (NatureThroid), it's not unusual for people to have to add a source of T4 when taking desiccated hormones, because the T3 is pretty powerful, so it will increase Free T3 levels, but leaves Free T4 lagging.  But if that didn't resolve the PVC's and muscle twitching, which may have been caused by fillers/binders adding one of those T4 meds may not resolve your problems either because you'd still have those same fillers/binders.

You can try adding Cytomel to your 112 mcg dose and see if the symptoms are caused by being hypo; sometimes it is.  A small dose of Cytomel (or its generic counterpart, liothyronine) - 5 mcg could make a big difference) since you need a good balance between Free T4 and Free T3.  Having one and the other really low doesn't work well for most of us.

The other option is as I mentioned previously - Tirosint, which as I mentioned, does have a program through with those who qualify can get the medication for free; you just have to contact them via the number listed on their website.  Most doctors can get free samples for you to try to see if it's going to work.  

I took Tirosint for several years when it first came out and did very well on it when I didn't do well on Synthroid or generics.  Unfortunately, I didn't qualify for the free program and my insurance wouldn't cover Tirosint, so when the price rose to in excess of $150/month, I could no longer justify it and had to stop taking it.  When I called the company, I was, basically, told that those of us who paid full price were subsidizing those who got it for free.  It's great that they have the program for those who can't afford it, but they drove me right out of the market.  :-(   Once I could no longer afford Tirosint, I switched to Levoxyl.  I've been on it for several years and have done as well as I did on Tirosint.  It seems that most people who can't take other medications do well with Levoxyl so if you don't qualify for Tirosint's free program, my recommendation is always Levoxyl.  I also take 5 mcg/day of generic T3 (Liothyronine) because I don't convert the T4 to T3 adequately; however, I only need a small amount of the T3...

You can also get Tirosint via a GoodRx coupon, but of course, it's not going to be nearly as inexpensive as, say, the Levoxyl I quoted above... The Tirosint website did use to have a coupon of their own that was good for so many refills though that lowered the price.  I'm not sure if that could be used with a GoodRx coupon or not.  I'd say probably not, but it wouldn't hurt to ask... anything to lower the price, right?

Your B-12 at 400 isn't high enough.  Most of us need B-12 at the top of its range in order to keep symptoms of deficiency away.  In fact, some countries consider anything below 500 as actually being deficient and my lab puts a note that says anything < 500 may present symptoms of deficiency.  Ferritin is the iron storage hormone and should be around 80-100.  Considering that you've had parathyroid issues, your vitamin D at 52 is probably okay, but I wouldn't let it go lower than that.  
Barb,  Thanks for replying.  Your reply was actually attached to my comment and I did not see it until today, Oct 5th!  I hope you can see my comment to Gimel below where I discuss latest findings in iron and B-12.  It appears I may be slightly deficient in both which I guess would explain why I can't get my t3 in upper range without also having t4 in upper range.  I have to take 10mg of omeprazole daily to deal with GERD and esophagitis, so that is likely also contributing to lowish iron and B-12 values.
Avatar universal
Sorry I am late to this party, but I just wanted to ask if you take your thyroid med the morning of the day of the blood draw for tests?    Also, at what dosage and FT4 and FT3 levels have you felt the best over the last few years?  
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1 Comments
Hi Gimel,  I take my thyroid meds first thing in the morning.  When I was on Nature Throid, I tested first, then took the medicine.  Now that I am on Levothyroxine, I have taken it before blood tests.  I have been taking thyroid medication, either Levo or NT, for four years and have never felt well.  

The best I felt was on 112mcg:  (felt best here with lesser symptoms but all still there).  Medicine was taken at 6:00am and bloodwork was done at 1:30pm.
   TSH = 1.7
   FT4 = 1.2  (0.8 - 1.8)
   FT3 = 3.1 (2.3 - 4.2)  Notice FT3 actually increased with less levo.

I saw my Endocrinologist three days ago and we have decided to go with 100mcg plus cytomel of up to 10mcg/day depending on how I respond.  100mcg straight T4 was too low for me as depression, coldness and fatigue were debilitating at TSH of 2.7.  PVCs and muscle twitching were better though.  

We also tested the following:

   Metabolic panel = all normal

   Cortisol Stimulation Test = normal.  Adrenals responded appropriately

   Ferritin = 106  (30 - 400 ng/mL)
   Serum Iron = 67  (35 - 1090 ug/dL)
   TIBC = 348  (222 - 409 ug/dL)
   Iron / TIBS (transferritin saturation) = 19%  (20 - 50%)  LOW
  
   Vit B-12 = 417  (>= 350 pg/mL)

I have an appointment with my PCP next Monday to discuss possible iron deficiency and likely do a CBC to see if I am actually anemic too or just have low iron.  Two years ago CBC was normal.  My father and his mother were both iron-deficient anemic with no cause identified.  I plan to discuss B-12 as well since it appears to be on low side of normal.  I know both of these can cause fatigue, but do you know if they can also cause PVCs and muscle twitching?  Something still isn't right.

Thanks,
D


Avatar universal
I would say that the main thing that is not yet right for you is your FT4 and FT3 levels.   The average thyroid gland produces the equivalent of 100 mcg of T4 and 10 mcg of T3 daily.  Since T3 is 3 times as potent as T4, that equates to 130 mcg of T4 (100 plus 3 times 10 = 130).  Due to absorption of thyroid med being less than 100%, that means on average a full replacement dosage would be higher than 130 mcg of T4 or equivalent.  In addition studies have shown that patients taking replacement thyroid med adequate to relieve hypo symptoms usually have a suppressed TSH level.   Also there was a recent, excellent study that quantified for the first time the effect of T3 on the incidence of hypo symptoms.  The authors concluded that,  "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range".

If your doctor is limiting your med dosage in order to keep TSH within range, that is incorrect.  In my opinion it would have been better to actually raise your T4 dosage to 125 and add at least 10 mcg of T3, with the goal of getting your Free T4 to mid-range, and your Free T3 into the upper third of its range, or as needed to relieve symptoms.  

If you what to confirm what I have said, click on my name and then scroll down to my Journal and read at least the one page overview of a paper on Diagnosis and Treatment of Hypothyroidism, A Patient's Perspective.  

In addition the next time you are tested, it would be good to test for Reverse T3 along with FT4 and FT3.  Also hypothyroidism is not just "inadequate thyroid hormone", but instead it is "insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to, thyroid hormone".  So you also need to assure Vitamin D is at least 50 ng/mL, B12 in the upper end of its range, and ferritin at least 100.
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1 Comments
Thank you for your reply Gimel.  What you state above certainly makes sense, and I have read this in several places before.  I have also read your research paper which I found to be very informative and logical.  Barb stated exactly the same as you (add T3 to 125mcg T4 to get FT3 in upper range) and I mentioned this to me Endo this past week.  He didn't seem to agree or at least didn't appear he had heard of this before.  He chose 100mcg and up to 10mcg of T3 to in order to keep TSH in range and be safe.   I am hoping that 100mcg t4 and 10mcg t3 will at least show some improvement since that is what a "normal" thyroid produces and its above the 112mcg in which I felt somewhat poorly but best comparatively.   It looks like I also need to address low iron saturation and lowish B12.  

FWI, I was on 137mcg T4 this spring and didn't feel well
TSH = .28 (.4 to 4.5)
FT4 = 1.4 (.8 to 1.8)
FT3 = 3.7 (2.3 - 4.2)

I was also on 175mcg T4 this spring and felt worse here than on 137mcg with PVCs driving me crazy.
TSH = .03 (.4 to 4.5)
FT4 = 1.7 (.8 to 1.8)
FT3 = 4.2 (2.3 - 4.2)

Respectfully,
D
Avatar universal
I expect that the 175 was causing PVC's sue to the relatively high FT4.   Mid-range, or slightly above is best.  Along with that Free T3 should be in the upper third of its range, or as needed to relieve hypo symptoms.    

Did you have any other symptoms at that time?
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Yes.  I was waking up every 2 hours throughout the night and had difficulties getting back to sleep.  I just felt "sick" at 175.   I also seemed to get out of breath more easily there too.
Avatar universal
You need to give your doctor enough info from the paper you read to get him off the TSH bandwagon.   Have a look at Recommendation 12 and 13 on page 13 of the paper  and consider giving a copy of the whole paper to your doctor.  
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1 Comments
Thank you.  Hopefully, I will improve with the addition of cytomel.  If I am still struggling at next bloodwork, I will certainly present your paper and discuss it with him.
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