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Hashi's w/night Hyper Episodes since off Armour

Hi Everyone:

I'm having a tough time phrasing this question without writing a very long post but here goes:

I got a Hashi's dx 4 yrs. ago from high Tg and TPO ab's with normal thyroid function lab (TSH around 1.5).  I was 46 y.o. and 2 yrs. post partum and got increased fatigue, hair loss and muscle fatigue when I weaned my son, then peri-menopause sx's too.  I also had episodes of 4am waking/palpitations/adrenaline surges/internal shaking/anxiety/diarrhea/vaginal pain/lower bowel spasms.  These episodes came every 3 to 6 months and lasted 4 days to 2 weeks.

A wonderful ND (I'm in a state where they can rx) helped me back to feeling good over the next two years with hrt, Armour/NatureThroid and Isocort.  Whenever I got the shaking episodes, they always responded to adjusting my hrt (increase estrogen +/or decrease progesterone).  I was very stable on all hormones as of last year for 8 straight months.  When Armour went off the market, I went on compounded SR T3/T4 and had recurrence of shaking episodes very severely that did not respond to increased estrogen.  Dr. tried many things: reduced dose, switch to Erfa, switch to Synthroid over 3 months, to no avail.  Every time I stopped thyroid the episodes got better but my TSH climbed, when I was shaking, my TSH came down again.  For the last 5 weeks I've been off all thyroid and the episodes have become a little less intense but more frequent...more like a day on, day off, few days on, day off, etc. Latest labs have my TSH climbing up to 3.

The episodes seem to involve pulse and blood pressure variations a lot but not sustained high of either.  I tested negative for pheochromocytoma and adrenal antibodies.

Dr. has me on beta blocker and Xanax generic to cope with sx's and try to "slow my system down" for 2 weeks in preparation for going back on NatureThroid now that it's back on the market.  (We're both leary of Armour since it's back on the market..don't know about the 'reformulation').  They are not helping much...sometimes take the edge off the anxiety from the symptoms but not the symptoms ie palps, etc.  They lower my pulse about 10 points but only for a few hours.

We are thinking that although my body did seem to get an excess from the initial replacement dose of compounded T3/T4, that these are hypo sx's from missing the suppressive dose of Armour that I had finally achieved last year.

Does anyone have any experience or wisdom to share about this?

Thanks in advance!

Terri


13 Responses
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393685 tn?1425812522
TerryQ - I think the doctor went in the wrong direction and should have concentrated on the HC and adrenals.

The thyroid NDT shortage made your issues more complex and flopping those meds with the HC is probably why you spiraled backwards.

Hay - try changing your diet to high proteins, no ( absolutely NO SUGAR) and eliminating additives.

Helpful - 0
1299122 tn?1281040416
OOPS, I see that you posted you've been off the Isocort a few weeks. I read through the posts again - it's a lot to pull together!
I looked up Propanolol and read that it is to be used with caution in patients who are diabetic or have thyroid conditions, especially hyperthyroid.
How are your D3, calcium, magnesium & B12 levels? Low calcium & magnesium can affect heart rythum.
Have you had an ultrasound of your thryoid to see if you have nodules?
Honest to goodness, if t was me I'd try to get off everything but the thyroid med because once the thyroid hormones are balanced, the heart palps, anxiety, insomnia etc will probably subside.
The endocrine system is so interconnected & delicate, I don't know how it could be balanced with taking multiple hormones and other medications.
I guess I am sceptical of most doctors pharmaceutical knowledge - I have been prescribed meds that should not really be used together a few times.
Our livers can only process so much.
What was your condition/symptoms that initially required the prescriptions for estrogen & progesterone (perimenopuase?) and then the thyroid meds?
I know you stated you gave birth to your child, and then weaned him...but what happened to start all of the meds? The fatigue & anxiety? Weight gain? Hair loss?
Have you been checked for diabetes? (I ask because I had gestational diabetes with my last child)
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1299122 tn?1281040416
Terri,
Was there a specific reason the doctor placed you on such a dramatic hormone replacement therapy? I mean, the estrogen & progesterone? I ask because I've read that estrogen competes with thyroid hormone and when your body is estrogen-dominant it wipes out the effects of the thryoid hormone. Also, isn't Isocort intended for short term use?
I was diagnosed with Hashis (after months/years of wondering what was happening to me) I remember the hyper episodes - trembling, anxiety, insomnia, heart racing. I know this, thryoid hormone would not have helped one bit while my thyroid was slinging hormones from the nodules that had formed.
Thats the difference as I understand it - that Hashis is difficult to treat because of the fluctuations in hormones. Add estrogen & progesterone and your body may be overwhelmed.
Anyway, my thoughts is that your endocrine system is over stimulated by all the hormones you are taking. Estrogen therapy is intended to be short-term now based on research from back in 2002 (Women's Health Initiative) report.
I think that if you are feeling hyper, you may not be needing the thryoid meds right now. The way to tell is the FreeT3& FreeT4 tests.
All the symptoms you mentioned above can occur when you are hyperthyroid - the muscle fatigue, diarhea sounds hyper, not hypo.
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Avatar universal
I have been on ERFA for over a year, I have severe itching on my scalp.  My hubby has a severe facial twitch....any thoughts about what we can do?  I am on 3.5 grains, he is on 2.5 grains.
Thanks
Helena
Helpful - 0
798555 tn?1292787551
I went through something similar to your deal. I've had Hashi for 11 yrs, but sympomatic for 25 till I went on origional Armour. My saliva cortisol is not perfect, but my blood cortisol is. Go figure.

I was on several brands of dessicated for one year due to the shortage. The last brand, it seems my body does not like. So I switched to ERFA, and it has taken a while. On the reformulated NT, wierd things were happening. Labs said very hypo (TSH of 58 at highest) but I felt hyper, could not sleep. I was tired and wired simultaneously. But not drowsy - strange!

I found out that there are different ranges or stages of hyponess. I little hypo- I'm tired, fatigued. A lot hypo- its like I'm functioning on adrenalin -maybe its the body in survival mode as adrenal takes over? But my blood cortisol was in range though.

On Nature Throid I was going hypo by the labs, but I had reactions to the reformulated NT. Felt hot, shaky and sick 1 hr after taking it. Downhill battle.

I first switch to some leftover dessicated med (a discontinued Armour copy) that worked in the past to see if I improved. I did. Then I switched to ERFA and still felt hypo-hyper but labs got better. And I started to feel better per each week, not day to day. I recorded symptoms per med dose to understand what was happening. I'm still hypo at 16 tsh two weeks ago, better than 58 mid march.  

1)So your trouble started when you switched to compounded, when was that (month)? I'm thinking that is the issue.

2)And what are your lab #'s. Then (feeling good) and now (feeling bad)?

I have no idea how hypo you are, but I know it takes time depending how far in the hole you are. And lots of patients and hope. Can be very miserable and scary - one morning my vision was really affected - the lights were half out!

I know nothing about Propanolol and only very little on adrenal, Hashimoto -yes.
Helpful - 0
734073 tn?1278896325
I saw in your first post that you were thinking of switching to Nature-Throid now that it is becoming available again in pharmacies. Not to make things harder on you, but thought you'd need to know that it has now been reformulated like the Armour was. If the Nature-Throid is scored down the middle for dividing, then you have the new formula. The changes made are very similar to the changes made in Armour and many are reacting to the changes in the same way  (not so good symptomatrically, with a lower t4 on it). The verdict is still out there but proceed cautiously! Maybe you should give Erfa another shot, but add it in slowly and divide it between 3 doses per day. Everyone feels it is very similar to the old good Armour and it did great for you, so maybe the Erfa will to if you take it slower and give yourself more time (could take several months-2 weeks is not long enough to tell and switching back and forth on meds can set you up for real failure- consistency and time is key!)
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Avatar universal

Hi LazyMoose:

Thanks for this reply,sorry I just saw it!  I am just learning how this forum works.

I'm not sure I understand your comment about antibodies.  I took it as a good sign that mine reduced to almost normal while I was on Armour the last four years.  You're saying the level isn't so important, just the yes or no you have autoimmune issues?

I've been off all thyroid for about five weeks.

Yes I will dig out my last lab and post it.  

OK...that is interesting what you're saying about ramping your dose back up.  I think that is what I will be doing soon.  How is that working?  If you got hyper feelings when you were hypo, did they eventually disappear?  Or did you just start back on the thyroid with the hyper feelings anyway?  Did they get worse before they got better or did it help right away?

I just had two nights without symptoms after my doctor adjusted my estrogen/;progesterone ratio (more progesterone at night).  It seems to have helped a little.  

I sent in an adrenal test last week.  I've been off all Isocort for a few weeks.

How long have you been hypo?  Do you have Hashi's?  How high has your tsh gone?  I'm shocked that my symptoms have been so strong even though my labs are mostly in subclinical ranges.

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798555 tn?1292787551
Dont get bent on the antibodies, you have them or you dont, the way it is.

1)So you have not been on any thyroid med for how long?

2)Do you have a lab during this time you can post?

I went through a weird hyper/hypo period - still recovering after deliberately going hypo to get the old med out. Now ramping back up on a new one.

Extreme hypo labs can result in some hyper feeling. By extreme I mean having one of the free's off the bottom of the range - (gone).
You can get so hypo that you cant sleep, and can be jittery also. Muscle tightness and pain can set in too.

Its hard figuring out thyroid with adrenals. I'm still learning about adrenals myself.
Helpful - 0
Avatar universal

Thank you for your reply!  I so appreciate it.  I am at my wits end.  I have a small child to care for and this is significantly hampering my ability to do so.

I can see I didn't really phrase questions.  I am having a hard time writing my history concisely with the right amount of detail. I can't think as straight with these shaking episodes going on.  I apologize in advance if this post is too long.

I did a 24 hour saliva test four years ago at diagnosis and was below range in all 4 quadrants.  I was put on Isocort and it helped tremendously with the fatigue.  But back then I was fatigued and had hypo and perimenopausal sx's.  I took Armour, hrt and Isocort for nearly four years, had to adjust the dose every few months and finally felt like I got it dialed in last year when my TSH went to about .5.  During the last year I had decreased the Isocort from 5 or 6 per day down to 1 or 2 but had not done cortisol retests.  We had assumed my adrenals were recovering.  I had taken supplements to heal them and gotten more rest, gentle exercise, etc.

All the trouble started after I was on the compounded T3/T4 for several weeks.  At first it felt good-like stronger and more sustained energy than the Armour.  Then I started feeling strange sort of almost electrical energy zippy sort of jolts in my system randomly through the day.  Then it turned into the horrible middle of the night waking episodes lasting all day.  We thought it was too much thyroid med.  So we switched, decreased, then went off altogether.  I was on Erfa and Synthroid each only for a couple weeks because each time I tried any amount of seemingly any kind of thyroid med it made the symptoms more intense.  We assumed it was because I had too much in my system, even though my labs did not look that way.  My labs looked good when I was in an episode and my tsh climbed when the episodes stopped.  But when I stopped all the meds and still got the episodes we became confused.  Now, even though I've been on almost no or no thyroid for over two months, I am still having early morning sudden waking with internal shaking, palpitations, nervous/panic/impending doom sensation immediately upon waking, diarrhea, no appetite, weight loss.  Now my hair and nails are getting brittle, hair loss starting up again, itchy scalp, body aches.

I'm now on Propanolol 10 mgs. twice a day and it doesn't see to be helping much...maybe making the intensity gradually less but sx's almost constant everyday now, some breaks in afternoon/evenings.

I do not have the crushing fatigue I used to have now.  It's more of a shaky jittery feeling inside...like all my muscles are contracting at once inside my body combined with occasional waves of fatigue...not a good hyper, not a normal feeling.  It feels like the gas and brake pedals are on my insides at the same time, ya know?

Have you ever heard of someone taking compounded t3/t4 and it taking this long for it to work out of their system?  Could it be that taking it for a month could take more than 3 months to work out of my system?

My Dr. wants me to repeat the cortisol test and do an additional sample in the middle of the night when I wake with severe symptoms.  Maybe we've guessed wrong on the cortisol?!

Could this be all about the cortisol?

Since I've been off thyroid meds my TSH has been creeping up.  It's now been above the reference range for the first time.  (My tg and tpo antibodies consistently came down while I was on Armour the last four years.)  Do these symptoms sound a variant of hypo symptoms?

Terri

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Avatar universal
Thank you!  I am feeling pretty desperate with these symptoms for the last four months severely.  I'm going to keep at it though!

Terri
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798555 tn?1292787551
I'm not exactly sure what your main question is but.......There have been mixed remarks on compounded meds. You tried several others, we dont know how long though?. ERFA seems to work well since its the closest to old Armour as you can get. How long were you on that?

Heart palps can be from hypo too.

Have you ever had a 24 hr saliva adrenal test?
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Avatar universal
I do hope you can find some answers.  
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