sleeping sickness, fatigue, head congestion but no mucous

mzh · Post by **mzh** » Sat Apr 21, 2012 7:56 am

I was so exhausted (even with Normans, thanks to L-Glutamine and an Entocort every other day) that I ordered myself a salivary cortisol test kit. Lo and behold, I came out very low on cortisol from AM to bedtime. Now to find a doc who can help me with that. This could be your trouble too.

In the allergy dept - everyone reacts differently. A friend is allergic to almost everything, especially pollen and certain foods. She doesn't get a runny nose; she gets very red upper eyelids and becomes VERY tired and foggy. I get post nasal drip. Astelin, a prescription nasal antihistamine, helps that immensely during pollen season. Supposedly it's the only true nasal antihistamine out there. It works much better for me than antihistamine pills.

Chronic pain can wear one down. I have it from neck to feet. Are you hurting anywhere all the time?

And it could be a thyroid problem, despite normal TSH and T4 - the "new" full thyroid panel. (Give me a break; my pets get full panels and that's not it! They get 5 or 6 things checked, not 2!) Google Stop the Thyroid Madness for more than you want to know about it. LOL

One thing that helps me get going even when I feel I can't get out of the chair is to do gentle exercises given to me by my physical therapist. It takes 15 minutes and really helps.

MBombardier · Post by **MBombardier** » Sat Apr 21, 2012 9:09 am

Tuning in late here...

Zizzle, maybe you should get your antibody levels tested to see if you have Hashi's. Below is a website that I am spending some time on as I seek to treat my Hashi's. I suggest you look around here for thyroid stuff. The gal who runs it is not as nice as Tex, but there is a wealth of information. It's like drinking from a fire hose, just like on the board here.

My antibodies are through the roof and my PCP basically said, "So?" and my endo said, "Your TSH is fine, come back in six months." Since my husband has been unemployed for almost 10 months we don't have the money for me to pay out-of-pocket for health care so I could go to a naturopath or an MD out of network who would properly treat me.

So I am treating myself, and this website http://www.stopthethyroidmadness.com is a great help. I am carefully increasing my thyroid medication according to the directions (of course, the website assumes this is being done under a doctor's care).

I have just started studying the association between the thyroid and the adrenals. My PCP says that adrenal fatigue is a myth. I can't afford the lab testing that is recommended on this website, but I am doing the temperature charting to get a baseline of my metabolism to see if I need further testing when we can afford it.

Tex, with all due respect, I think that you are giving the TSH value more importance than it merits. Untill the TSH test was developed in the 70's, I think it was, hypothyroidism was treated by alleviation of symptoms.

I am not real thrilled to have to be doing this without my doctor on board, but I feel better, I've lost 4 lbs. in the last couple of months, and I am thrilled about that. The best news is that a friend told me there is a DO in our network who had her thyroid removed and will allow a patient to treat thyroid disease according to the symptoms. This next week I am planning to see if I can change to her as a PCP. Nothing like having someone take care of you who has dealt with the same problem.

mzh · Post by **mzh** » Sat Apr 21, 2012 10:13 am

Marliss, I see we are both fans of Stop the Thyroid Madness. LOL

Inquiring minds want to know: How you are treating yourself with thyroid meds without a doctor? I know my FT3 is almost below range but my TSH is wonderful. Ugh. Some like Dr Myhill say TSH can be normal but if the Free T3 is low or even low normal, there is a problem in hypothalamus-pituitary-adrenal axis. T3, not T4, is needed. Getting a doc who understands it is nearly impossible, even by esteemed endocrinologists. (Sarcasm!) Sigh.

Post by **tex** » Sat Apr 21, 2012 10:42 am

Marliss wrote:Tex, with all due respect, I think that you are giving the TSH value more importance than it merits. Untill the TSH test was developed in the 70's, I think it was, hypothyroidism was treated by alleviation of symptoms.

You may be misinterpreting my position. To be honest, I don't see much merit in the TSH test, for exactly the reasons you cite. I wish it would be outlawed as a treatment mandate, (at least, most doctors consider the TSH results to be a treatment mandate). (I've been a fan of the website you mentioned for at least several years).

The problem is, if our TSH value gets too far out of the normal range, our doctor is likely to insist that we need to adjust our treatment, even though the adjustment may be in the wrong direction, (which would be the case in my situation). And if we ignore their advice, then any health problems that arise in the future, will be assumed to be connected with our failure to follow their advice on thyroid treatment, so they won't be inclined to be very helpful, until we correct that little indiscretion. IOW, once we are on our own with thyroid treatments, we may be on our own with everything, and finding a replacement doctor who would be willing to ignore TSH readings is a pretty tall order, in my neck of the woods.

I have an appointment coming up next week, for a CBC, so the issue will surely come up if my TSH is still below range. I usually skip taking a supplement on the day of the blood draw, (until after the draw), but last time, my TSH was below range, anyway. I'm tempted to skip taking a supplement for a day or so before the draw, but I don't want to get into a situation with a week's worth of breathing difficulties, like I did last fall, so I'd rather not skip any treatments.

It's a hell if a note, when we have to try to trick the test, in order to deceive our doctor, so that he or she will remain happy.

Tex

mzh · Post by **mzh** » Sat Apr 21, 2012 11:19 am

Actually, Tex, I read on a lab website to not take your thyroid med the day of the test and to wait until after the draw to take it. So, you're not tricking anything unless you don't take it for a couple of days!

Post by **tex** » Sat Apr 21, 2012 2:11 pm

mzh wrote:Actually, Tex, I read on a lab website to not take your thyroid med the day of the test and to wait until after the draw to take it. So, you're not tricking anything unless you don't take it for a couple of days!

Yes, I've read the same thing - I was referring to skipping it for an extra day or so. My doc says that it doesn't matter whether or not you wait until after the draw to take the supplement, which makes sense, since any response to thyroid hormone shouldn't be significant over a short period of just a hour or three. In the past, I've tried it both ways, (either taking it before the draw or waiting until afterward), and I was never able to notice any significant difference. For the past several years, though, my TSH has been steadily declining, while my hypothyroid symptoms have become slightly worse, (and my Free T4 continues to decline). Apparently my HPT axis is having problems, but I'm not going to fantasize that there might exist an endo in this part of the world, who would recognize the problem, and be able to properly treat it.

OK, I did a little more research, and I finally found the right reference that explains my situation accurately. Instead of cheating on the test, and treating myself, I'm going to educate my doctor, and try to do it right. If he balks, then I reckon I'll do it on my own. Based on the following reference, I apparently have pituitary-dependent hypothyroidism:

http://www.thyroidmanager.org/chapter/c ... -function/

I even found a reference in the British Medical Journal that advocates pushing the treatment to extremes:

The other difficulty in interpreting serum TSH concentrations is to decide what value should be aimed for in patients taking thyroxine replacement. It is not sufficient to satisfy the recommendations of the American Thyroid Association11 by simply restoring both serum T4 and TSH concentrations to normal, as in our experience most patients feel well only with a dose resulting in a high normal free T4 and low normal TSH concentration, and those patients with continuing symptoms despite “adequate” doses of thyroxine12 may be slightly under-replaced. Some patients achieve a sense of wellbeing only if free T4 is slightly elevated and TSH low or undetectable.13 The evidence that this exogenous form of subclinical hyperthyroidism is harmful is lacking in comparison to the endogenous variety associated with nodular goitre,3 and it is not unreasonable to allow these patients to take a higher dose if T3 is unequivocally normal.

The red emphasis is mine, of course.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125169/

I'm gonna lay it on him, and see if I can teach an old doctor new tricks.

Tex

MBombardier · Post by **MBombardier** » Sat Apr 21, 2012 4:21 pm

Wow, that first article is really long, but very interesting. I will have to finish reading it when I have more time. The second article is encouraging. Thanks for both of these.

I notice that reverse T3 is not mentioned in the second article. I'm probably not telling you anything you don't already know, but the problem with reverse T3 is that the cells cannot use it. T4 may be abundant but it is being converted to RT3. I believe this is a function of autoimmune thyroiditis. The ratio of T3 to RT3 (or vice versa) is supposed to be over 20, if the cells are receiving adequate T3. My T3/RT3 ratio was 13.2, if I remember correctly. I know your antibodies checked out okay, but you may still have some sort of a RT3 problem.

The nice thing about being a part of this board for 19 months now is how much I've learned. Some things applicable to MC also apply to thyroiditis. The Paleo diet, Vitamin D, and coconut oil all help to stabilize thyroid function. So I am better off than I would otherwise be just from that.

MZH, desiccated porcine thyroid is available online (even amazon.com) without a prescription. I am taking one that doesn't have any sugar, salt, starch, wheat, corn, rice, gluten, yeast, diary or soy. I have very slowly increased my dosage over several weeks. I feel pretty good most of the time, and I noticed today that I have complete eyebrows now. My temps are still very low and all over the place which makes me think adrenal fatigue. The chronic stress and the years I was not medicated, or under medicated for thyroid disease make it quite possible that is part of the overall health picture for me, so I want to check that out, too.

Post by **tex** » Sat Apr 21, 2012 5:10 pm

Actually, I've never even considered a RT3 problem. Thanks. I'll ask for a RT3 test, also. I've never done one, because my Free T3 is always mid-range.

Marliss wrote:and I noticed today that I have complete eyebrows now

Whoa! You're making progress. My eyebrows still look as if they were used as targets for bombing practice runs.

They're still going the wrong way.

I agree - I learn something useful here every day.

Thanks,
Tex

mzh · Post by **mzh** » Sat Apr 21, 2012 5:34 pm

Wow, thanks for that info, Marliss.

mzh · Post by **mzh** » Sat Apr 21, 2012 5:42 pm

BTW, my eyebrows are just fine, so I'm thinking more adrenal fatigue given my low salivary cortisol levels. My body temp used to be 97-ish for years but now it's at 98.4-6. I think it's b/c the D stopped after I quit coffee and b/c I'm drinking lots more mineral-enhanced water. I think.

Have you done a salivary cortisol test, Marliss? Has anyone besides me done one?

JFR · Post by **JFR** » Sat Apr 21, 2012 7:33 pm

I am very interested in this discussion. About 10 years ago I saw a functional medicine doctor who did a bunch of tests and among other things found out that I had high levels of anti-thyroid antibodies. Nothing was done about it at the time and I have moved 100's of miles away from that doctor so going back there is not an option. I mentioned to my pcp about the anti-thyroid antibodies recently at my annual physical and she was not impressed. If I could treat this myself that would be great. Any advice anyone could give me would be appreciated. I know thyroid issues have been talked about a lot here so maybe if I could be just pointed in the direction of relevant threads that would be a big help. I seem to want to steer as clear of doctors of all sorts as possible now so anything I can do on my own is great. My mind seems to be spinning at the moment, information overload I guess, what with MC, mast cells, thyroid issues, general autoimmune problems etc. I look forward to your book Tex. I am sure it will help me sort it all out.

Jean

Zizzle · Post by **Zizzle** » Sat Apr 21, 2012 9:39 pm

I have complete eyebrows, just thinner and more spread out in the outer third. Not sure if that means my thyroid is OK. My hair is certainly not as brittle as my friends with Hashis. My low temps and cold intolerance are my most nagging symptoms, so if there is another explanation for them, I'm all ears.

I'm a little unique here in that I suffer from almost no chronic aches and pains. No headaches (unless I drink red wine). No GI pains or cramping, just painless D. Hip and low back pains resolved with the diet.

Interestingly, a friend my age, mom of an autistic girl, just got diagnosed with adrenal fatigue. Her progressive docs said its common among mothers who give everything of themselves fighting for their children.

bTW, just saw on the evening news that Miley Cirus tweeted she is allergic to gluten and lactose. She tweeted everyone should try GF for a week. Now many are saying she was irresponsible for drawing attention to "her dangerous diet fad". Teens may now go GF in droves...

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 22, 2012 12:07 am

a week? yeah right like that will change anything!!!

Zizzle, so glad you have narrowed down the mystery. According to the blood tests via the medical faternity, my thryroid is ok. discussions on this forum and the symptoms i have been having i am questioning that a bit.

adrenal issues have been an issue for me for over 12 years. supplements and naturopath treatments could never get them great, we only ever managed to get them 'ok'
given the slightly screwed up message system our immune system operates under i am skeptical of getting them better than ok.

mzh · Post by **mzh** » Sun Apr 22, 2012 5:53 am

I've been taking "Adrenal Support" from Gaia for 3 weeks have felt no energy improvement. It has rhodiola in it (recommended by Dr Oz). I was also taking single ingredient rhodiola for the adrenals and taken alone, I felt a tiny bit better. Rhodiola is supposed to be like magic. Not so much for me. Conversely, a friend is on a similar adrenal support supplement and noticed a big change immediately. Different strokes for different folks. I guess one has to experiment.

I take a lot of supplements. They help a little but I think the balanced B Complex does the most good.

The same friend got me on L-glutamine and that has really helped my BMs. I'm also not nearly as gassy as I used to be.

MBombardier · Post by **MBombardier** » Sun Apr 22, 2012 2:09 pm

Jean, if you plug "thyroid" into the search for the board, you will come up with a bunch of responses. I am search-disabled (I have the same trouble trying to find something in the yellow pages) so I don't really know how to direct you to specific threads.