Drop dead exhaustion and TSH woes

[IntuneJune]

For years and years, I have been on levothyroxine 125 mcg for hypothyroidism. Longer than that I was diagnosed with FMS syndrome.

Fast foreward numbers of years, "Doctor, my exhaustion is worse." Doc states "we'll checkk your thyroid levels" and they subsequently come back normal. Next office visit, "Doctor, my exhaustion is still worse." Doc says, "we recently checked your thyroid. Well this goes on for a number of years.... and periodically my thyroid levels get checked.

June 2010, "Doctor, I am dead in the water, so exhausted.... " Doc replies, "So let's check your thyroid levels." Now I am irritated. But my former PCP retired, this guy is new and I don't want to scare him away.... as he believes in the diagnosis of FMS.

So, grumbling...... back to the lab I go for yet another TSH blood draw (the other thyroid levels were also checked).

Rounding off the values, since I don't have the report in front of me, High limits of normal is 5 (5ish). My TSH was almost 25.

The doc asked "so, what have you been doing wrong"

Huh?????? "I am not doing anything wrong." Some other discussion ensued. I thought maybe this is an error as I had been taking my medication. So, he had the value repeated in one week, it was 11+.

Therefore, my levothyroxine was upped to 150 mcg. It takes six weeks evidently to feel better and I am only at two weeks.

I researched on line and found. "Although the patient is suffering the effects of a thyroid problem. it can take a very long time before the TSH is elevated"

Wow, years???????????

I am so mentally challenged right now, and am so hoping this is the answer as to why the mental acuity and exhaustion got so bad, and NOT FMS. I fit the criteria of CFS/ME but I am in denial and tend to use FMS,

The last three times out in the car, twice I overshot my exit...... and once I ended up at the airport.... Nope, I was not going to the airport.

No concentration what so ever.

Anyone have knowledge or similar experiences?????

June

 

[caledonia]

Are you treating your adrenals? Thyroid and adrenals go hand in hand. Adrenal exhaustion will make you have that horrible exhausted feeling.

You will probably have to work with some kind of holistic doc or naturopath to do this.

The TSH change should take about 6 months.

There are certain foods that will affect your thyroid, such as soy and millet.

There are other things you can do to help your thyroid, such as test for and chelate out mercury, and increase iodine intake. Again, this is in the realm of the holistic doc/naturopath.

For the brain fog, 100 mg of Co Q 10 make a big difference for me. No more getting lost driving in the neighborhood.

 

[Athene]

My sister has this problem and is in the situation you were in - her tests always indicate that her thyroid dosage is correct but she has all the symptoms of hypothyroid. She keeps changing pharmacy in case the tablets are not OK. She has a lot of symptoms that remind me of my own CFS.

In researching for her, I read that the time of day they do the test, and what you have eaten beforehand (for many hours) affects the levels they find.

Nutrients important to maintain thyroid levels are tyrosine, iodine, and selenium.

You can also develop peripheral thyroid resistance, where you have the right levels in your body but your cells do not react to it properly (same concept as insulin resistance). I don't know if there is a test for this. I read that it is connected with stored toxins so a good detox (methylation?) might help.

Just some ideas.

 

[IntuneJune]

Caledonia

Are you treating your adrenals? Thyroid and adrenals go hand in hand. Adrenal exhaustion will make you have that horrible exhausted feeling.

You will probably have to work with some kind of holistic doc or naturopath to do this.

The TSH change should take about 6 months.

There are certain foods that will affect your thyroid, such as soy and millet.

There are other things you can do to help your thyroid, such as test for and chelate out mercury, and increase iodine intake. Again, this is in the realm of the holistic doc/naturopath.

For the brain fog, 100 mg of Co Q 10 make a big difference for me. No more getting lost driving in the neighborhood.

Thank you Caledonia, I do not have a holistic practitioner and never had the adrenals checked. I am not sure how to go about finding a good one. Tried in the past, got a lot of good reports on one and was getting to that point where I was going to call when........he was arrested! Geezzz

I am on a wheat-gluten-soy-corn-yeast free diet. Does soy hinder or help the thyroid? And I use sea salt which has no iodine in it. I do have one egg a day and eat fish frequently but this may not be enough. Thanks for that tip. And the CoQ10, I have taken that in the past, not now. I forget.

Thanks June

 

[IntuneJune]

My sister has this problem and is in the situation you were in - her tests always indicate that her thyroid dosage is correct but she has all the symptoms of hypothyroid. She keeps changing pharmacy in case the tablets are not OK. She has a lot of symptoms that remind me of my own CFS.

In researching for her, I read that the time of day they do the test, and what you have eaten beforehand (for many hours) affects the levels they find.

Nutrients important to maintain thyroid levels are tyrosine, iodine, and selenium.

You can also develop peripheral thyroid resistance, where you have the right levels in your body but your cells do not react to it properly (same concept as insulin resistance). I don't know if there is a test for this. I read that it is connected with stored toxins so a good detox (methylation?) might help.

Just some ideas.

Athene, interesting..... usually I do a fasting test because I lump my lab tests together and something usually needs fasting. But since I had no other tests to run.....I had the blood drawn while I was out and about, and it was later in the day. I am going to dig out those reports and note the time. But if my memory is serving me correctly....... yah! right!....... the level worsened as the day went on.

I am going to keep the nutrients in mind you mentioned, as I have been following my nutrition documenting everything, except tooth paste, that passes my lips, so I will investigate those also. In the above post, I did address I am not getting enough iodine probably.

How is your sister doing?

Thank you for your time and ideas. June

 

[Athene]

Cod, turkey and Brazil nuts are rich in selenium.
Onions are very rich in iodine.
I think all protein rich foods have tyrosine.

My sister is still battling on really. She was put on a slightly increased dosage recently and said it was much better, but still not great. We still haven't really discovered a good solution to this.

 

[IntuneJune]

I am reading a book I bought years ago, "The Thyroid Diet" by Mary J Shomon because of my inability to lose weight. I thought I had read a good portion of it, but alas not only did I not follow through on some of this stuff, but I don't remember buying the book.

Oh the fog.

Anyway it had a list of signs and symptoms, lengthy, and I had all but 2 or 3.

It mentioned normal lab valvue range is 0.5 - 5.5, but that was under consideration to be changed...to...0.3 - 3.0.....some recommendations had high normal at 2.5.

One of the symptoms which blew my mind-what is left of it, was plantar fasciitis!!!!! I never knew that was connected in any way to thyroid disease.

The list was an eye-opener

Athene, thank you for the food, I do eat cod and turkey, maybe more often? Onions are a staple in our diet. Have you or your sister read this particular bookk?

 

[IntuneJune]

TSH info

Found following articles on the website: www.thyroid-info.com.

"TSH that is elevated, or above normal, is considered indicative of hypothyroidism. TSH that is suppressed or below normal, is considered evidence of hyperthyroidism.

As of 2003, the American Association of Clinical Endocrinologists is recommending that the normal range run from 0.3 to 3.0, versus the older range of 0.5 to 5.5. So, according to the new standards, levels above 3.0 are evidence of possible hypothyroidism, and levels below 0.3 are evidence of possible hyperthyroidism. Keep in mind that there is disagreement among practitioners, and some follow the older range, others use the newer range."

The labs I have frequented use 0.5 - 5.5 range. I am so symptomatic though, I feel like a tick. I have had these problems over 10 years, have been treated with levothyroxine for longer than that.

June

 

[Carrigon]

I go to the Stop the Thyroid Madness website and Facebook group. They firmly believe we are severely undertreated for Hypothyroidism and Hashimoto's. And I believe it. If I'm not on the right dose for ME and not the stupid range tests, I get just as sick as the original poster described. Those range tests, IMO, mean NOTHING. Everyone's body is different, and you may need more medication than someone else.

 

[Athene]

Hi June,

Thank you, I shall tell my sister about that book as I am sure she'd be really interested, especially if it could help her lose weight. She was always so slim and sporty but now she is permanently bloated and over weight, despite eating nearly nothing. (Literally, I would starve to death on what she eats.)

I am also sure she would agree heartily with your comments that the "normal" range needs changing.

 

[aiden424]

I think thyroid problems are common with cfs. My thyroid worked okay until about 10 to 15 years after I had cfs. Now I have a goiter, hoshimotos, and hypo thyroid, My problem is that I am so drug sensitive that I can't get regulated on the meds because if I take to much I go Hyper. I went from a 0.04 TSH on meds to 115 TSH off meds in 5 weeks. I had to see a Endocrinoligist who said I was odd. It should take much longer then 5 weeks for a TSH to jump that fast.

Kathy

 

[Mya Symons]

I hate to tell you this, but people with Fibromyalgia also often have thyroid disease. Before I moved, I used to go to a clinic that treated Fibro patients. I also have Hashimoto's disease (autoimmune thyroid disease that eventually causes hypothyroidism). The doctor I saw said it was very common for people with Fibro to also have Hashimoto's disease. I do not know, however, if this is true of CFS/ME.

I also started off with the thyroid problems and trying out all kinds of doses of thyroid medicine. Nothing seemed to work. Later I was diagnosed with FMS, CFS, and osteoarthritis. By the way, something your doctors won't tell you is that all the thyroid medication is the same. They all have the same main ingrediant. For example synthroid and levothyroxin have the same ingrediant. They have something like 5 different erectile disfunction medications and only one thyroid medicine, even though hypothyroidism is the second most common disease in the U.S. (behind only diabetes)!!!!

Some people have better luck treating the thyroid with naturopathic medicines like Armour. They say the synthetic thyroid medicine is missing something. People who have tried naturopathic thyroid medicines also have told me their pain and fatigue is significantly reduced. I have never been lucky enough to find a doctor who takes my insurance willing to prescribe Armour or any othe natural thyroid medicine. Unfortunately, I cannot afford to go to a naturopath. However, if you are able to it might be worth trying.

 

[klutzo]

Hi Interjune,
I studied to be a Naturopath for 2 1/2 yrs. before quitting due to my state's making it a felony to practice. That is the basis for some of what I say below.

I agree that most Fibro people are hypothyroid. In fact, there are several big name docs who think Fibro IS severe hypothyroid in an alternate presentation. Look up Dr. Lowe or Dr. Rind, for example.

I have taken both Armour Thyroid (which has T1, T2, T3, & T4) for six years, and then switched to Levothyroxine (T4) plus Liothyronine (T3) for almost a year now, and notice little difference. My TSH is better on synthetics, but I don't feel better, no matter what my TSH reads. I did feel much worse on just T4, and lost all my body hair. Many fibro people can't convert the inactive T4 to the active T3 form very well.

Generally, I think the natural is always better, unless you are allergic to pork or worried about prion disease. Armour has had a lot of problems with dosage consistency and been taken off the market twice in the past few years, so I finally gave up and took the synthetics. You can also try Natuthroid or Westhroid if you want natural alternatives.

In his FMS/CFS books Dr. Teitlebaum says that TSH is meaningless in Fibro because our thyroid problem is caused in the brain, by the HPA axis being dysregulated and is not actually a sick thyroid. The exception would be if you have proven Hashimotos Disease. The only test he looks at is the free T4, which should be pushed to the upper half of it's normal range, using T3 medication, not T4. This would explain why I can feel so bad with an excellent TSH of .51. My free T4 is only .7, which is below normal range. I am afraid to take more T3 because I have heart problems from Lyme Disease. T3 can be dangerous in heart patients, and should be raised slowly.

The Amer. College of Endocrinology's newest research shows that they still have not lowered the upper limit of the normal range enough. It is now at 3.04, but labs are still using 5.5, and doctors flip through stacks of labs looking only at results in the abnormal column, so many hypothyroid people are missed.

They are now saying the upper limit for TSH should be 1.4. Luckily for me, all of my doctors know that ideal TSH is as close to 1.0 as you can get it, and should never be allowed to go above 2.0 in anyone with other hypothyroids or depressed folks in their immediate family. (Depression is often caused by hypothryoidism).

They found that TSH levels between 1.5 and 2.5 raised heart attack risk by 29%, and levels over 2.5 raised it by 69%. Many people do not know this is a much greater risk than high cholesterol, which is a red herring anyway, designed to sell drugs. Taking care of your thyroid, your inflammation level (CRP), and your fasting insulin level is far more important at preventing heart disease.

Some foods definitely lower thyroid function. Non-fermented soy is at the top of the list. Only tempeh and miso are acceptable soy foods which will not hurt you and are good for you, though some of us cannot tolerate fermented foods, probably for the same reason we can't tolerate alcohol. Tofu and soy milk are junk foods that can even cause hypothyroidism if you use enough of them. Also, cruciferous vegetables must be cooked if you are hypothyroid. You only need to steam them for a minute to eliminate the problem, but raw ones will lower your thyroid function. The cruciferous veggies are brocolli, cauliflower, brussell sprouts, and cabbage. So, cole slaw is a real no-no, for example.

There are many adrenal treatments you don't need a doctor for, but they tend to work best on milder cases of adrenal fatigue. Vitamin B5, pantothenic acid, in megadoses for a couple of months, licorice tea, adrenal gland extract, Siberian Ginseng, Isocort, and making sure you are asleep from 10 pm to 1 am and from 5 am to 9 am are some things that can help.

The Licorice must be deglycerrized if you have high blood pressure, and you should not use gland extracts, Isocort or Siberian Ginseng with high blood pressure. It is very hard to treat weak adrenals in the few of us that have high blood pressure.

If all that fails, you would need an open-minded doctor to prescribe a small, physiological replacement dose of hydrocortisol, brand name Cortef, in the mornings. Sometimes a noon dose is needed too. This dosage would be based on an ASI test, which most alternative and Integrative docs are familiar with. After the adrenals are rested for a few months, the drug is slowly withdrawn. You must lower your stress, and avoid caffeine and sugar as well.

The way to know if your adrenals are also involved is if your experience is like mine, ie. the first few days you are on thyroid meds, or receive an increase in dose of thyroid meds are wonderful. You feel almost normal. I am able to drive again, when I haven't for years. But, then, after a couple of days to a couple of weeks at the most, you are suddenly right back where you were before. I can't drive, I ache and drag around, I am depressed. This is due to not enough adrenal ability to deliver the thyroid hormone in your blood to the tissues they need to go to. I've read it described as like pressing the gas pedal and the brake at the same time. Dr. Rind's website has a good Metabolic Scorecard to tell if your problem is thyroid, adrenals or both.

There are two other good tests for weak adrenals:
1) If you have a home blood pressure cuff, lay down with the cuff on for five minutes, then take your BP. Stand up and take it again right away. Normal adrenals will cause a ten point rise in the top (systolic) number. I have had my top number fall as much as 50 pts., which is severe adrenal fatigue.
2) Get a flashlight and go into a totally dark room. Stand in darkness for a couple of minutes. Make sure you have a watch to time yourself. Shine the flashlight at one of your eyes from the side and hold it there. A normal pupil should get small to keep out the light. If your adrenals are weak the pupil will attempt to do this, but cannot hold it. It will pulse in and out and finally give up and stay wide open. The quicker it starts pulsing, the worse your adrenal fatigue. If your pupil stays solidly small for over a minute, you are okay. This test measures the hormone aldosterone, without having to convince a doctor to draw blood.

I always ask the nurse what my thyroid results were, since when they say "normal" it could mean almost anything up to 5.5, which is too high. I make sure the doctor runs a free T4 along with the TSH. I hope you can get it straightened out. I find it generally takes about 3 weeks to notice a change in thyroid function.

Best regards,
klutzo

 

[Sallysblooms]

Adrecor has done wonders for me on many levels. It supports the adrenals.

Quality CoQ10. d ribose and liquid Caretine also help with energy. My brain fog is almost gone too. I learn and read daily so I can get better. I am making huge progress.

 

[Athene]

June -
Just a brief message to say I mentioned the book to my sister and she has it. She said the diet was usseless for her - if she ate so much as the book suggests, she would be the size of a mountain.
She also mentioned that thyroid deficiency is suddenly kind of "trendy" in England now, and lots of people claim thyroid deficiency which they then blame for all kinds of things. Last time I was in England the whole world and his wife insisted they were allergic to wheat, but my sis reckons that is old hat nowadays! How silly people can be!

 

[IntuneJune]

Athene, I tried to post this on the book announcement that Cort posted. I could not get it to post.

"How wonderful, Veronica um..Athene! You are living such an interesting life despite health challenges. Loved the article above, am very interested in reading your book!"

:victory: :victory: :victory:

June

 

[Athene]

Thank you June!

 

[IntuneJune]

Klutzo!!!

Klutzo posted:

They are now saying the upper limit for TSH should be 1.4. Luckily for me, all of my doctors know that ideal TSH is as close to 1.0 as you can get it, and should never be allowed to go above 2.0 in anyone with other hypothyroids or depressed folks in their immediate family. (Depression is often caused by hypothryoidism).

They found that TSH levels between 1.5 and 2.5 raised heart attack risk by 29%, and levels over 2.5 raised it by 69%. Many people do not know this is a much greater risk than high cholesterol, which is a red herring anyway, designed to sell drugs. Taking care of your thyroid, your inflammation level (CRP), and your fasting insulin level is far more important at preventing heart disease.

Your post was fantastic Klutzo, thank you.

I knew that years ago, TSH levels were suggested to be no higher than 3.0. Now your informing me that it is lower!!!

I had done a search for the 3.0 levels, and came up with no good info to print out for the doctor. Is there a link you know of?

My CRP is elevated and I am trying to get the doctor to address that also, but a number of them are not impressed including the rheumatologist. She stated "only for cardiac issues, no rheumatological issues." The PCP states "you do not have any cardiac issues." I have been trying to get him to address the swelling I have globally especially the legs. My allergist is upset, "you need to see a cardiologist." Geezzz,

I am now on Medicare so the PCP is the gatekeeper. My former PCP would have sent me because I brought the subject up. We had a wonderful relationship. This new guy, well, we are findng our way but his reputuation is good.

Thank you for all the information.

June

 

[Mya Symons]

I have always wondered if the ingrediant in Synthroid may be the cause of fibromyalgia. There is only one drug that mainstream medical doctors will use to treat hypoactive thyroid because it is easy to monitor, and that is the ingrediant found in synthroid or levothyroxine. Who is to say that it does not work for certain people? The symptoms of Fibromyalgia almost match exactly the symptoms of a hypoactive thyroid. Possibly, this medicine could cause permanent damage in some people or make symptoms worse. Who would ever know since there aren't enough alternatives. Long term use of high doses of synthroid has also been connected to early osteoarthritis, which I have. The doctor claimed it runs in the family. No one in my family below the age of 60 has ever had osteoarthritis.

 

[*GG*]

I have always wondered if the ingrediant in Synthroid may be the cause of fibromyalgia. There is only one drug that mainstream medical doctors will use to treat hypoactive thyroid because it is easy to monitor, and that is the ingrediant found in synthroid or levothyroxine..

What? Not true. There is Armour Thyroid and Thyroid Extract, that is what I am on.

FYI