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From hypo to hyper? Confused and frustrated

Hi there – this forum has some seriously wise and experienced people and I would love some input since I don’t get much from my doctor. I don’t feel absolutely awful, but not great. I’ve felt better, and worse. Wondered if any of you have experienced something similar in your thyroid travels. I was diagnosed with Hashimoto’s in 2006 after complaining of fatigue and was put on levothyroxin. In 2011 I asked my very conventional doctor if she could switch me to Armour, and started at 30 mg. Didn’t feel great and called the manufacturer to find out what dose was comparable to 75 mcg levo and they said 45 mg, which is what I’ve been on since. About a year ago my doctor told me my TSH was a bit high again (4.4) and wondered if I wanted to try 60 mg so I thought I would, since I still felt tired & lacking in energy. Within a few days I was feeling very sluggish and told my doctor about it and we agreed I would go back to 45 mg.

I haven’t achieved the energy levels I could hope for on thyroid medication, but I get by. Life is busy with work, 2 college boys living at home, husband, karate, the gym, a crazy foster dog, &c. In March 2013 I had a wicked knee injury (torn ACL, torn MCL, torn lateral meniscus, bruised condyle, fractured tibial plateau) and had surgery 3 months later to reconstruct the ACL and trim the meniscus. Have had a hard time springing back after that. Minor stresses became harder to deal with. I found an integrative medicine MD late last summer, hoping he would explore possibilities like adrenal fatigue with me; he did some tests including 24-hr urine collection for cortisol (not what I would have chosen but I didn’t speak up). He said my cortisol was “fine” but he was going to try treating me for AF since my symptoms matched. He said we could try some natural supplements or we could cut to the chase and try a low dose of hydrocortisone. The only thing the HC did for me was add 4 pounds to my weight so we stopped that. Then he stopped taking most insurance plans including mine so we didn’t get very far before I had to stop going to him (or pay $150 per visit no thx).

A few months later I was still not feeling well – not tired so much as sluggish and not much energy. I bought Alan Christianson’s book, The Adrenal Reset Diet and put myself on that eating plan this January: 25-30 mg protein at each meal, a serving of healthy fat, unlimited amounts of a bunch of different kinds of vegetables, and healthy carbs such as beans, quinoa, squash, brown rice, berries (1/4 cup at breakfast, ½ cup at lunch, ¾ cup at dinner). It didn’t take long before I went from 125 pounds (I’m 5’6” and post-menopausal and had that pesky post-age-50 fat pad on my middle) to 110 pounds. I am super happy about that and it has not been hard to maintain it. Since having my twins 20 years ago I’ve had a tendency to put on weight and when I hit around 126 I’d go on a diet and go down to 120 or 118 or very occasionally 116. I haven’t weighed 110 since I was in my 20’s. But I didn’t achieve the “abundant energy” referred to in the book. I had started feeling sluggish in the fall and if anything I have just gotten worse.  And whereas I used to feel cold a lot, I noticed that I always seemed to be overheating.

Next stop was another integrative medicine outfit in my town on 23 March 2015. This one is a rather large, busy clinic. They ordered a bunch of blood tests, including a blood cortisol test that requires a fasting 8 am blood draw and a 4 pm draw the same day (haven’t done that one yet; they did all the rest of the blood draws at their clinic). They looked at the tests done by the other guy last summer and noted that my Vitamin D was deficient and put me on 5000 IU/day. They recommended a prescription for 60 mg Armour, and that I take 45 mg 4 days/week and 60 mg 3 days/week. They also prescribed low-dose naltrexone (LDN) to “balance the immune system” (an anti-nuclear antigen test last summer was 640).

So I get the LDN and the new Armour and I go home and start reading up on LDN. It says at the LDN website that Hashimoto’s patients should start at the lowest dose, 1.5 mg, which is what my prescription is for. It says we should watch out for symptoms of hyperthyroid since the Hashimoto’s could resolve while on LDN and one should be prepared to reduce thyroid medication quickly if this should happen. I thought, okay, what ARE the symptoms of hyperthyroid?

I looked that up and holy cow. They are the symptoms I’ve had for the last 8 months. I felt exactly the way I did when I was on 60 mg of Armour last year. Sluggish. Out of breath. For some reason I never made the connection. And it never occurred to me to wonder why I was heat-intolerant when cold-intolerance was supposed to be my hypothyroid lot in life.

So I think, what if instead of raising my dose of Armour, I were to lower it? That’s where I am now. I’m taking 30 mg a day in a split dose. I’m taking 5000 IU of Vitamin D. More lab results came yesterday that say I’m manganese deficient and should take 10 mg/day for 30 days (I can’t imagine how I can be manganese deficient with all the leafy greens and nuts I eat but okay). And I’m not taking the naltrexone, at least not yet.

I haven’t done that cortisol blood test and decided to skip it and order a saliva test kit instead (just ordered it yesterday).

I feel better on the lower dose of Armour, and my thermoregulation is a bit better, but I still don’t feel right – I still get out of breath if I’m stressed (e.g. if I’m out walking the crazy foster dog and she sees another dog or person and goes ballistic and I’m trying my darndest to keep her from pulling me off my feet [again]. Once I make it into the house I almost have to lie down to recover). When I bend over and then straighten up I feel like passing out. My blood pressure in the doctor’s office is around 110 over 65, pulse 60-65. When I take my bp at the grocery store kiosk it tends to be 90’s/40’s. Maybe that is inaccurate.

What else? Numbers:

I don’t have that many numbers available.
April 2014:
TSH 4.42, ref .270-4.2
Thyroxine Free 4, 1.2 ref 0.8-1.6
July 2014:
Ferritin 79 expected 13-150
TSH 3.3 expected 0.270-4.2
Thyroxine Free 4, 1.2 expected 0.80-1.6

No recent thyroid numbers except antibodies which were checked for the first time ever last month:
Antithyroglobulin AB is 22 (reference <60)
Thyroid peroxidase is 251 (reference <60)

I don’t know what to make of the antibodies. When I have seen people with Hashimoto’s report thyroid peroxidase it’s in the thousands.

I’m sorry this is so long. I just wondered if anybody recognises herself or himself in this and if so, have you figured it out and are you feeling better? The integrative medicine clinic is very busy and I couldn’t get a follow-up appointment until the end of May. My primary care doctor retired and my new doctor has said she doesn’t know much about thyroid and adrenal issues and suggested I go to this clinic. I don’t have 100% trust in the clinic since their idea of a good cortisol test doesn’t match mine and I don’t think they dug deep enough before suggesting I needed more thyroid medication when I now feel like I needed less. Perhaps the Vitamin D deficiency which I’m sure is of long duration has done some damage that will take time to repair and I’ll feel better in a few months. I think my diet is really good – plenty of protein and vegetables and appropriate fats and carbs and a lot less sugar than I was eating before. But I would really love to feel better! Thanks so much for any insight…
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649848 tn?1534633700
COMMUNITY LEADER
Not to worry about the competing site... just so you understand whenever you post a link, if it gets astericked out, that will be the reason.  We also have to be very careful of the sites we do research on...

DHEA is one of the hormones that you don't want to be too high, as it can cause some unwanted side effects.  DHEA is the precursor to testosterone and high testosterone can cause women to grow hair in unwanted places, to become overly aggressive, overly muscular, etc.

Likewise with cortisol... too high levels can contribute to weight gain and other things we really don't want to have happen to us.  
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Avatar universal
Oh dear - I wasn't aware of that competing-site thing. My apologies.

I somehow/somewhere got the impression that one's numbers should be in the upper part of the ranges. A graph came with my report and it shows the normal DHEA level by age (I missed that at first). Mine is a bit higher than normal for my age (my DHEA-age is 10 years younger than my actual age - maybe I like that ;) ). I will see what my practitioner says when I see her next month.

Meanwhile, I feel better on the lower dose of Armour, but not super. I hope to get all this sorted soon! Thanks for your thoughts Barb- I appreciate it.
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649848 tn?1534633700
COMMUNITY LEADER
The url you posted was astericked out because it's a competing site and references/links to it are not allowed here.  That said, it appears that they are merely making an observation, they don't have reference ranges from a lab or anything.  They don't know for sure that they people they're referring to, have healthy adrenal function or not.

You really have to go by the reference ranges that came on your lab report and according to that, your results are all within the ranges.  I might agree that the 2 evening ones are a little closer to the top of the range than desirable.

I don't see where you're getting that DHEA should be in the upper quarter.  Even the link you posted says above 8, which yours is... It's normal for DHEA to decline as we age.

As I noted in a previous post on this thread, it's normal for the adrenals to kick in to try to take up the slack when the thyroid is failing, as it does with Hashimoto's, so it's not surprising that your adrenals would be slightly off.  Once you get your thyroid hormone levels back to a place that's right for you and everything rebalances, your adrenals should go back to normal on their own, since they aren't so far off, now.  
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Avatar universal
Didn't know the url would be asterisked out - it was at stopthethyroidmadness.
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Avatar universal
Okay I found an answer at http://www.*************************/lab-values/:

"We noted repeatedly that those will healthy adrenal function will have the following saliva results:

8 am: at the literal top of the range.
11 am-noon: in the upper quarter, and often about a quarter below the top.
4-5 pm: mid-range
11 pm to midnight: at the very bottom.

A DHEA above midrange is good, we saw, but 8 can mean the adrenals are compensating for a problem."

Going by this, my numbers are not where they should be for anything. Not absolutely terrible, but enough to cause problems. Now I just have to figure out what to do about it :)

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Avatar universal
My DHEA/cortisol test results came back:

DHEA: 10.4 (range 2-23) (age-dependent)
a.m. cortisol: 6.8 (3.7-9.5)
noon cortisol: 2.1 (1.2-3)
evening cortisol: 1.4 (0.6-1.9)
night cortisol: 0.9 (0.4-1.0)

If I'm going by the idea that I should be in the upper quarter, the DHEA is low, the morning and noon cortisol should be a little higher and the evening and night cortisol are okay. Is that about right? Or should I be in the lower quarter for the evening and night? Thanks for any comments.
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649848 tn?1534633700
COMMUNITY LEADER
:-)
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Avatar universal
Thanks Barb! I'll correct that asap.

M.
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649848 tn?1534633700
COMMUNITY LEADER
Thank you for that vote of confidence...


MCMinWMA... Vitamin D needs to come from Vitamin D3 capsules... While I take Nordic Naturals for the fish oil, I've never taken the ones containing Vitamin D, because you need ALL vitamin D3 since that's what your body uses. There are other brands that contain only vitamin D3 that would come more highly recommended.
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Avatar universal
Thank you Faith - I appreciate that. I'm definitely taking the D and B-12. The D is in the form of 2 Nordic Naturals fish oil capsules that have 1000 IU each, and 3 1000 IU capsules of Trader Joe's Vitamin D/D3. And I'm trying to be patient!

I don't have much in the way of bone and muscle pain though.
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Avatar universal
I'm not well-informed like Barb, and I do seek her knowledge for myself, but I just wanted reiterate what she said about Vitamin D and B12.

I'm concerned that some people hear a recommendation for a vitamin when their symptoms are so horrendous and they may discount the value of such a "cheap and easy" otc remedy. I'm hear to say their affect makes a huge difference and resolves a lot of muscle and bone pain quite quickly. Even if you fall within "range" or if you don't know your level, it is something you can easily up the dose on your own. Just sayin'. :)
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Avatar universal
Thank you again, Barb, for your thoughtful reply. It really helps to have your perspective and I feel better prepared to ask for and interpret certain lab results.

The people at the clinic probably know more than I give them credit for -they did the antibody tests which nobody ever had. But I will definitely request the other tests.

The symptoms you mention - I don't have any of those. I'm going to keep an open mind though, and I would rather not make any more changes in medication without consulting the people at the clinic (except I will add the manganese). I have been hoping I could fix everything through the dietary changes I've made, but without more information I don't think I can determine whether that's realistic.
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649848 tn?1534633700
COMMUNITY LEADER
Just because FT3 and FT4 are in the so-called "normal" range, doesn't mean they are "normal" or adequate for a particular individual, since each one of us may need something different.  For instance, I may need my levels higher/lower than you do in order to feel well, so normal isn't always normal.

In the labs you posted above, from 2006, were those done while you on medication or prior to starting medication?  Rule of thumb (where most of us find we feel the best) is that FT4 should be about mid range.  In those labs, your FT4 was at 52% of the range... slightly higher than it often needs to be.  In those labs, your FT3 was only at 30% of the range and rule of thumb is for FT3 to be in the upper half to upper third of its range. Even though "in range", your FT3 was way too low to be useful.

Remember, symptoms correlate best with FT3 levels.  FT4 has not been found to correlate much with symptoms and TSH does not correlate at all.

Vitamin B-12 in the 500's is probably not adequate.  In some countries, 500 is the bottom of the range; while my lab's range is 200-1100, they put a note on the report stating that any level below 500 may cause symptoms of deficiency, which is why I have to keep my level at the very top of the range in order to keep symptoms at bay.  I do have Pernicious Anemia, so it's probably more difficult for me to do this, as well - I self inject B-12 on a weekly basis.  Yes, you should be tested again because even inadequate, if not actual deficiency can cause one to feel "off" and sluggish.

Yes, in, both, my experience and that of many others who have posted on this forum, an increase in medication can make one feel worse, initially.  I don't know how long you stayed on the increase, but it's very possible that you didn't give your body enough time to get used to the med.  

I had very bad palps and rapid heart rate, which we, typically, associate with being hyper, but I was very hypo, even with a TSH of < 0.01 and FT levels in the normal ranges.  

As long as you have certain hypo symptoms (weight gain, constipation, dry skin/hair, puffiness in the face, etc), you're probably still hypo...
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Avatar universal
Barb, thank you so much for reading all that!

Yes, the lack of T3 tests is odd - I combed through my records and finally found one, which must have been ordered by the endocrinologist who orignally diagnosed me. It's from 2006:

Free T3 287 (ref 230-420)
Free T4 1.27 (ref 0.70-1.8)
TSH 1.38 (ref 0.4-4.0)

Which confuses me further since they are all within the range of normal, right?

I don't have the records in front of me now but I was tested for B12 at some point and it was in the 500's. I'm taking 1 mg (methycobalamin). I will ask for all these tests to be done again next month when I go back to the clinic.

So in your experience an increase in medication can make one feel worse initially? So when I tried the higher dose of Armour a year ago, and felt so awful, maybe I just didn't give it enough time? Thanks again for taking the time to read this - I really appreciate it.
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649848 tn?1534633700
COMMUNITY LEADER
Whew - I'm out of breath after all that... lol  Just kidding!!  I don't recognize myself in there, but I recognize a lot of past members.

One thing I see consistently missing from your story is actual thyroid hormone testing... Oh yes, the occasional TSH, and a couple FT4 tests, but there's not a single FT3 test.  Free T3 is the thyroid hormone that's used by individual cells in the body and it correlates best with symptoms.

All the symptoms you mention are consistent with hypothyroidism and your entire story sounds like your doctors have simply never given you a high enough dose of thyroid medication to bring you past the the hypo point.  

Many symptoms can "cross over" and apply to both/either hypo or hyper.  Plus when you start taking a thyroid hormone replacement, it's not the least unlikely for symptoms to get worse or for new ones to appear while your body readjusts to having hormones it's been doing without.

Last, but not least, when your thyroid begins to fail, it's normal for the adrenals to kick in to try to take up the slack, so when you start taking thyroid hormones, the whole body has to readjust and shift back ... it takes time for this to happen.

Vitamin D is necessary for the metabolism of thyroid hormone, so if you're deficient in D, you will have issues with the thyroid hormones.  Iron is also necessary to help in the conversion of FT4 to FT3, but your ferritin looks pretty good.  

You should have vitamin B-12 tested.  B-12 deficiency could be contributing to your sluggishness.  B-12 levels must be pretty high in the range in order to keep symptoms at bay.

As for your antibody counts - not everyone diagnosed with Hashimoto's has antibody levels in the hundreds. Your TPOab of 251 would be sufficient to support such a diagnosis.  On that basis, you should expect your thyroid hormone levels to continue to decline as your thyroid is able to produce less and less thyroid hormones over time, until eventually, it will produce nothing and you will be completely dependent on the replacement medication, just like many of us are.
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