Changes in Personality

[DebE13]

Any suggestions for someone loosing her mind?

I first started taking 100mcg of levothyroxine on September 19th. After labs came back all over the place in October, my dose was increased to 125mcg. I've been taking that dose since Oct. 20th and still feel like I'm in someone else's body. I called the nurse back after a week complaining of fatigue, brain fog, hair loss, etc. and she told me there was nothing they could do, it takes time, and I need to wait until my next set of labs in mid November. I was frustrated and called my surgeon. He actually called me and spoke with me personally. He agreed that I was hypo and said if I'm not feeling better by this Monday to call my endo back and if I had problems with getting through to the doc because of the nurse, to call his office back. He sent my endo a message. I was nervous about that because the nurse will probably be even worse to me now but I am stuck in a hole and can't get out.

I am feeling just as crappy on 125 as I did on 100. Actually, even worse. I need to call back tomorrow but what happens when I mention my change in personality that anyone in my family can attest to. I can't be going nuts because then I wouldn't know the difference. I am very aware that I am spacey, moody, anger easily, have no sense of humor, and really can't tolerate being around other people at all. I've had thoughts creep up that life isn't worth living and it'd be so much easier not to be here. (Don't anyone worry- I'm not suicidal. I can't be because I have a son and family so that won't happen but the thoughts are there) This is not me. I feel like the real me is caught somewhere far away and I'm trapped in a dysfunctional body that 's loosing all her hair. I must sound nuts because I have big issues and keep feeling bad about how I look.

If I call and leave a message like that, I'll be back to the depression dx and then I'd really loose it. It's hard to stay on task at work and I'm still finding myself staring off into space. Yet I know I'm doing it and can't stop. My neck and shoulders continue to hurt and are extremely tense. My heart pounds during light exercise. Get muscle cramps primarily at night. I will not mention my scalloped tongue or burning eyes anymore because then they want to refer me to a neurologist. I feel I need to be calculated in what I tell them so they recognize the thyroid issues. Although, that seems to go over their head too.

I asked about Cytomel. The nurse plain ignored me. My surgeon said it was for short term use only. The surgeon said the endo's notes reflected hesitantcy in upping my dose. I keep asking what if I am not converting the T4 to T3 properly and don't get an answer. This comes from someone with perfect labs for YEARS yet after the thyroidectomy found out I had Hashimoto's. Isn't that a big red flag that I'm not going to be a typical patient or am I just a babbling idiot? How do I make them understand that I'm not ok? Oh yes, heaven forbid you mention the NDT so I can't even go there.

On an MC side note, still have D with rare almost Normans. Taking 3mg entocort every 3-4 days. Lost my appetite so haven't been eating much. Pretty much hamburger, Chex, potatoes, some rice, carrots, squash, bananas, and pears. Wondering if the thyroid issues in any way are prohibiting me from regaining remission. See my GI tomorrow for the annual required visit to keep my script for entocort active so I'm thinking about hitting her up for a check of my vitamin levels.

[MBombardier]

THIS IS NOT A SUGGESTION. I AM NOT A DOCTOR. I am just telling you what I did because of my frustration with not being heard even by a doctor who had thyroid cancer and a thyroidectomy. I bought NDT from India, and I dose myself based on symptoms.

I did the 24-hour cortisol test and discovered my adrenals were fatigued. Over the last three months or so I have been supporting my adrenals with supplements so that they can have a rest. I lowered my NDT dose on the advice of my naturopath. I had a reverse T3 dump from my liver (not fun) but now, because my adrenals are better, I am still on that lower NDT dose, my FT3 and FT4 are in range, and I feel better.

Are you a member of the NDT Yahoo groups? I am a member of both the thyroid and the adrenal groups. That I strongly recommend. They are both very active, and you will learn a whole bunch that you never knew. I learned how important iron is for thyroid, for example, and a lot about the specific tests and why you need to be in a certain range. They take the STTM book and make it real-life applicable. They are just patients, not doctors, but it's just like this board--amazing what you can learn (and the hope you can get) from hearing what has helped others.

[brandy]

Hi Deb,

Don't forget to have them test your ferritin and iron. I found getting my ferritin scores up eliminated anger issues. Brandy

[tex]

Deb,

Sorry for my delayed response, but I had to think about this for a while, because your symptoms reminded me of something other than thyroid issues. After mulling it over for a while, it dawned on me why you're having all those symptoms (or at least why I think you're having all those symptoms).

As you know, I'm not a doctor either. But if I were (and if I actually knew what I was doing), I would advise you that the cause of virtually all of your symptoms is almost surely a potassium deficiency. Believe it or not, a severe potassium deficiency can cause all of the symptoms you mentioned. It can change your personality from genial to bitter and argumentative. The reason I'm aware of the emotional changes is because that happened to my mother a couple of times, and each time, she was very low on potassium.

I've never seen the emotional symptoms attributed to potassium deficiency in any medical or quasi-medical article, only the physical symptoms are ever listed. But I know from experience that the emotional symptoms are very real. And your description of both the emotional and physical symptoms fit a potassium deficiency to a "T".

Tex

[DebE13]

Thanks for the suggestions Mariliss- I've been thinking about you becasue I remember you going through thyroid issues when I first joined the group. I knew absolutely nothing about thyroid and it's function until I started reading here. I'm reading the Stop the Thyroid Madness book right now and learning lots but its a bit overwhelming. I am having a real issue with finding a doctor in this area that will consider NDT. The sad reality is that everything is so expensive that I have to go through my insurance. If I find someone at a distance, my insurance most likely won't cover an out of network provider when there's a slew of them in my area to choose from but they all come from the same T4 mold.
If I self treat then I'm totally out of luck. I don't know enough at this point to safely treat on my own but it is a possibility in the future. Also, I have to keep in mind my life long cancer follow up. It's not likely to happen with my current endo if he doesn't continue to oversee my meds.

How have you been doing with it all? How do the doctors react to you when they find out? Do you pay for the labs out of pocket?

Thanks Brandy- Had my annual GI visit and for once, I left feeling good. That NEVER happens We went through the polite formalities. At the end I expressed my concern with fatigue and malabsorption issues and simply gave her the list of labs I wanted. She was very agreeable and added to it. insert icon with jaw dropping to floor here. She's willing to do:

Hemogram (HEGM)
comprehensive metabolic panel (COMP)
iron and iron binding capacity (FE)
Vit B12/ Folate (VB12)

I verified that this would include potassium and she said it would along with electrolites. I have labs for my endo on the 13th so I am having it all done at once. Is it best to stop all the supplements or continue as is? I was taking calcium and iron. I stopped the iron after I repeatedly got an upset stomach. I was taking it for weeks with no problem and then it started. I'm also taking the Metanx OTC version Tex recommended. Oh, and Vit D which I won't discontinue.

Thanks for the suggestions Tex- I've started eating a banana each day again and that seems to help with the leg cramps. Hopefully the lab work will reveal something helpful. I'm wondering if it was a good idea to postpone it or if I should get it done sooner. I appreciate the though that went into your answer. Right now, that does fit me to a T. I even find it alarming how the negativity just pops out of my mouth without effort. I've stopped holding any type of coversations because even I don't like the dark mood that surrounds me. This also worries my family because I just simply don't have anything to say or any interest in anything. Most of all, I have to thank you for not suggesting I'm depressed. haha Imbalanced- yes. Touched- maybe. At the bottom of the gene pool- most likely.

Also, Tex- I don't think I changed any of my settings but I don't get the email notifications for my own posts, which is really wierd.

[tex]

Hi Deb,

Your symptoms could also be due to a combination of issues I suppose, but the perfect fit for a potassium deficiency really caught my attention. Your thyroid issues probably also have a bearing on those symptoms, because the thyroid hormones regulate so many critical body functions, either directly or indirectly. Metabolism is controlled directly, for example, but thyroid hormones affect the production of many/most other critical hormones, so that indirectly, virtually every system in the body is affected by thyroid hormones. Most doctors don't seem to comprehend and/or appreciate the significance of just how important the thyroid actually is to the overall operation of the body. They just don't get it.

Also, Tex- I don't think I changed any of my settings but I don't get the email notifications for my own posts, which is really wierd.

That seems to be a common problem, and several members have had persistent or recurrent problems with that. There can be various causes. Since the emails contain a live link, a lot of spam filters automatically dump them into a spam file, and if that happens, you will never see those emails, unless you check your spam file, and/or add the sender address to a whitelist. A spam filter can be located at either your email provider, or in your email client on your own computer (or both, of course). Sometimes the problem can be due to a computer "firewall" that blocks such emails. Occasionally, the problem is due to an email provider installing a new spam filter, or throwing out all the old "whitelists" set up by clients, in an annual "housecleaning", so that the spam filter may once again reject most emails that contain a life link, unless the address is once again added to a whitelist. My email provider did that a few months ago (without any warning), so I had to redo all the filters (again).

Or, it can be due to a corrupt cookie in your browser, that specifies permissions for the board, and this is probably the first remedy to try. To clear the old cookies, you can simply click on the link at the bottom of the page (that says, "Remove cookies set by this forum"), and follow the onscreen directions. If you do that though, be sure that you remember your password, because when you clear out those old cookies, you will have to log in manually, the first time, and that will prompt the system to set a new cookie on your computer. And when clearing your cookies, when the instructions tell you to close your browser, if you have more than one tab open, be sure that you close all of the open tabs, otherwise the original cookies will not be properly deleted.

Tex

[DebE13]

Thanks! I'm good now. It came through fine.

[MBombardier]

The only two doctors that know I self-medicate my thyroid are the DO with the thyroidectomy and the naturopath. The DO put me on Armour so I had a more consistent dose of thyroid, then forgot how much I was on and started treating me according to the TSH. So I went doctor-less until I went to the naturopath.

I do pay for the labs myself. The whole nine yards, including thyroid antibodies (growing worse) and RT3 was about $170, but just the TSH, FT3 and FT4 was about $75. The CMP and iron panel was about $210, and the cortisol spit test was about $100.

One of these days I will sign up for Samaritan Ministries. This is a shared-cost plan for catastrophic care for Christians that exempts members from Obamacare. It does not cover pre-existing conditions or anything less than $300, so I will continue to pay for stuff out-of-pocket. However, if I would end up with thyroid cancer, that would not be considered a pre-existing condition.

Except for this horrible flare, now winding down unless I do something stupid again like forget I can't have cream, which I did the day before yesterday, I am feeling much better. As I said, the RT3 dump from my liver after I took my NDT down a notch when my adrenals were well-supported (I think this is what it was) made my heart just about climb out of my chest after meals and every night for a few weeks. But that's over, thankfully. Now I just have to pay attention to how much carbohydrate I eat, otherwise I will have mild heart palpitations from hypothyroidism. That's not blood sugar--my blood sugar and A1C are excellent.

I am in in the process of deciding whether to cut my NDT a little bit in the mornings or my morning adrenal support. I get a little bit of anxiety a couple of hours after I wake up. My lst thyroid labs looked good, but you never know with Hashimoto's.

About minerals: I take potassium gluconate, chelated iron, zinc picolinate, and chelated magnesium glycinate. Iron and zinc are for thyroid and potassium and magnesium are for my heart, etc. If I am consistent, the foot/leg cramps lessen in severity or even go away.

[MBombardier]

Deb, they just updated the good docs list in the NDT Yahoo group. I downloaded it, but there were all sorts of cautions about sharing the information elsewhere, including getting the doctors who will prescribe NDT in trouble with their state boards. I looked at Wisconsin, and there are doctors recommended there. There is one each in Beloit, Fitchburg, Milwaukee, and Waukesha. I don't know if you are near to any of those cities, or to another state where you might be able to travel easily, so my suggestion is still to join the NDT Yahoo group. then you can look at that file yourself. Where to sign up is the first item under "Other Groups" on page 312 of the resources section in the STTM book.

Hope this helps... I felt so bad for so long that I really empathize with you.