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03/18/2012 04:28 PM

AI, thyroid, or just crazy?(page 2)

hypomama
hypomama  
Posts: 772
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The only lab of concern there is your tsh. It either means your thyroid replacement it too high or your pituitary isn't responding. The t3-4 levels you posted are normal enough that they shouldn't be causing huge temp swings. I didn't see a WBC,ESR,or CRP. Have they checked you for any underlying infections?

""""""

I too was started with thyroid replacement. If you have SAI this is the worst thing you can do. It can make your adrenal situation worse. I wonder if you feel better during stressful times because you are still able to garner up some ACTH under extreme stress or get some squirts of adrenaline that make you feel more normal.

Your thyroid may also be causing you misery. Besides hashimotos what other autoimmune issues have they checked you for? Lupus frequently is associated with hashi's and can cause many of the symptoms you have.

Post edited by: hypomama, at: 03/18/2012 04:41 PM

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03/18/2012 05:49 PM
Enigma33
Posts: 59
Member

Yeah, my tsh is low-ish, but if T4 and T3 are good, TSH doesn't matter as much, right?

What about sodium?

They've check CRP in the past and ESR and both have been fine. I've been checked for Lupus (via ANA), RA, and celiacs (blood and biopsy), all negative. But something doesn't feel right, and hasn't felt right the whole time I have been on thyroid meds.

I really think that my "ADD" is a problem with cortisol and/or thyroid. I really want to get to the bottom of why I feel horrible all the time and the cause of my depression/anxiety/ADD.


03/18/2012 06:32 PM
ButtonButton
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Enigma:

I think that it is true - and likely common - that a psychological or psychiatric diagnosis can be inappropriately applied when an underlying cause is actually endocrine or pituitary based.

Hormones (chemical messengers) yield significant influence in the body - both physical and mental health.

I think that physicians can be too quick to label a confluence of symptoms as psychological/psychiatric when, in fact, there is an organic/endocrine basis.

I frequently read posts on this forum where people are told that symptoms (anxiety, brain fog, fatigue, insomnia) are "all in their head." And later determined to have adrenal insufficiency.

- Karen -


03/18/2012 06:39 PM
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Enigma:

One additional thought to add to Becky's . . . .

Auto-immune conditions can wax and wane. And many are s-l-o-w to develop over time, often years. You might want to consider having your auto-antibody levels and ANA re-measured.

I have an auto-immune condition (mixed connective tissue disorder) and the body-on-body response has been one variable attributable to several of my other intervening health issues.

That auto-immune disorders can be slow to develop may warrant you and your doctors to continue to monitor for such.

- Karen -


03/19/2012 03:02 PM
hypomama
hypomama  
Posts: 772
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If your TSH has been reliable in the past then it DOES matter. If it is low (which yours is) then it is a sign of too high of replacement. While hyperthyroid, I felt absolutely manic, lost a ton of weight, had hot flashes and night sweats, my heart rate was always elevated, I was shaky all the time, I was exhausted but couldn't sleep. Once my Grave's (hyperthyroid) was treated and I was re-started on synthroid, I was on too high of a dose. My new endo has slowly been dropping my dose down. My free T4 has not changed AT ALL with the lower dosing - I don't know why. My TSH is as it has been - unreliable, due to Mr. Pituitary. most amazing to me is the lowering of my heart rate, and my mood stabilization. I do not have the anxiety and mania that I had been feeling for so long. My husband even remarked a few weeks ago that he felt like his wife was back. Don't be fooled - thyroid can really mess you up - big time!

03/19/2012 05:26 PM
Enigma33
Posts: 59
Member

Hi hypo-

My TSH is not reliable AT ALL. I was Dx'ed with a TSH of 15.4, took 50mcg levo, went to 6.85, started 75mcg levo, felt horrible. Another doc put me on 90mg Armour, TSH went to 0.04, felt horrible. Started back on 75mcg levo and have been on that from September to January. My TSH has gone from November 3rd .92 to 4.94, to 2.51 (those were just within 3 weeks) to .51 to 1.24 (January 17th). My TSH is very unreliable with no discernible pattern whatsoever. Out of those numbers, I had what you described above, EXACTLY while at .92, 4.94 and 2.51. I have felt my "best" at .51, and "functional" at 1.24. I have never been stable in the thyroid area, no matter what docs have done.

I have hot flashes and racing heart when very hypo, but now I am having them occasionally, along with constipation, losing hair, extreme fatigue (and I can sleep forever!), depression, anxiety, dry skin, cold temps (almost always below 98, but sometimes up to 98.8 or so).

There are no rhyme or reason to my symptoms. I feel freaking CRAZY when my numbers are very hypo and ok when my numbers might be slightly hyper (in the TSH sense).

I started using HC cream over the last few days and have felt AMAZING. I finally got things done around the house, wasn't exhausted, I could think, and my body felt CALM. It felt like my body was relaxed, like it found a missing puzzle piece. It was absolutely amazing. I had no racing heart, no hot flashes, no jittery-ness. I ALMOST FORGOT TO TAKE MY ADD MEDS and that NEVER happens!!! I am usually hanging on by my fingernails by the time the dose wears off. NOT TODAY!! I really think something is going on with cortisol (thanks to my pituitary) and this is what I need. I just wish someone would help me.


03/19/2012 06:53 PM
hypomama
hypomama  
Posts: 772
Member

OK - I have been poring over my "Williams Textbook of Endocrinology." We have a few answers but I have a few more questions. The Armour suppresses the TSH - that is a normal response to that type of replacement. Have they done free T4/T3's when they did those TSH levels? If so can you post them along with the range and the corresponding TSH as well as your thyroid replacement at that time?

Another question for you - when you have your labs drawn, do you hold your thyroid med that day and have your level drawn first thing in the AM or if you do take it do you wait 8 hours for the level? What is best is consistency and to hold the dose the day of your lab check.

Another question, are you taking ANYTHING containing iodine? Any vitamins, supplements, etc? Stop them!

Have they checked you for Grave's antibodies? Have they done an ultrasound of your thyroid? Did you know that Hashimoto's can have hypothyroid as well as thyrotoxicosis? Also, the hashimoto's can be transient and the thyroid placement may not need to be permanent. There is also something called sub-clinical thyrotoxicosis where the free T4 is normal and the TSH is slightly low and the patient feels hyperthyroid. It is almost always from over replacement of thyroid meds.

A temp of 98 isn't of great concern - of greater concern is very low temps or very high. Here is a link for hyperthyroid vs thyroid storm http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437/

Finally, if the endo told you after your test that there was nothing wrong with your adrenals, then he/she was correct. BUT, what is in question is the ability of your pituitary to tell your adrenals to do their thing. Have they offered you an MRI? Have they done serial SERUM AM cortisol levels? Have you asked for recent antibody levels? Have I asked enough questions of you?


03/19/2012 07:04 PM
Enigma33
Posts: 59
Member

1. Have they done free T4/T3's when they did those TSH levels? If so can you post them along with the range and the corresponding TSH as well as your thyroid replacement at that time?

---Yes, see my chart below.

4. Have they checked you for Grave's antibodies? Have they done an ultrasound of your thyroid? Did you know that Hashimoto's can have hypothyroid as well as thyrotoxicosis?

---Yes, all the antibodies (TSI, TgAb, TPO) and have at least 200% of the range on all. See chart below. However, docs say that my labs never show I am hypER.

2. Another question for you - when you have your labs drawn, do you hold your thyroid med that day and have your level drawn first thing in the AM or if you do take it do you wait 8 hours for the level? What is best is consistency and to hold the dose the day of your lab check.

--Labs have always been done late afternoon early evening and I take my thyroid meds at 5:15 am. never missed a dose since last June when I started them.

3. Another question, are you taking ANYTHING containing iodine?

---No. I am super anal about all my meds, supplements and food, and avoid iodine like the plague.

4. Finally, if the endo told you after your test that there was nothing wrong with your adrenals, then he/she was correct. BUT, what is in question is the ability of your pituitary to tell your adrenals to do their thing.

---Right, I don't think there is anything wrong with my adrenals. I think there is short-circuiting in the pit/hypothalamus messaging.

5. Have they offered you an MRI?

---Had an MRI of my brain looking for lesions for possible MS. Came back normal. Not sure if this also looks at pit, or if they looked for it while reading the results. I had a bad a concussion when I was young (fainted and hit my head on a porcelain toilet); not sure if damage would show up on a MRI?

6. Have they done serial SERUM AM cortisol levels?

---No.

7. Have you asked for recent antibody levels?

---Of thyroid? Not since Nov.

8. Have I asked enough questions of you?

---No!!! This helps a lot!!

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03/19/2012 07:16 PM
hypomama
hypomama  
Posts: 772
Member

can you go to chat?

03/19/2012 07:25 PM
Enigma33
Posts: 59
Member

No, I can't, I am way too late for bed right now (need to get up at 5:15am EST). Is tomorrow possible? I am free after 5:30pm EST.
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