ohhh, it's my thyroid!

iVillage Member
Registered: 04-21-2004
ohhh, it's my thyroid!
3
Fri, 07-09-2004 - 5:25pm
Hello- it's my first post here in this section. I am throughly confused and baffled by this thyroid condition of mine and have now realized it is more complicated than I thought!

I'm Hypo- and have been for years. (over 12 years) I remember the day my synthroid started working...it was around 4-5 weeks later and I was sitting at my desk and suddenly this mental fog lifted...whee! I felt great for about a year. Then it was never the same again. Other things started happening but I did not attribute it to thyroid problems... let's see. I came down with uveitis, and I remember the Dr. asking me if I was "sick" and I said no...then I developed feet problems that were absolutely horrible. After 2-3 years they determined it was peripheral neuropathy and put me on topamax. In the meantime I am gaining weight. And still taking synthroid....then as fate would have it I got Optic Neuritis! Now that is usually the first sign of Multiple Sclerosis. After numerous MRI's, they essentially ruled it out. (they were right) They found out that I had a B-12 deficiency which caused the Optic Neuritis but when they started to track down the reason I had the B-12 anemia, it had returned to normal. WHAT??? It was baffling. Time went by... my brain is one big fog and I blamed it on the topamax medication. I feel really STUPID. My memory has gone to hell. Then in February I came down with frozen shoulder. Was put to sleep for a manipulation after some PT which was .... ok.

Anyway- I have my first appt. with an Endo. in two weeks. I have been reading about this condition and see that there is more to this than I realize. What's this T3/T4 thing about? I think I have not been treated correctly. I need something as I have NOT felt normal since that first year. I miss that!

Do all Endo's know about thyroids as much as they should or do they tend to specialize in diabetes, etc.???? I want to make sure I have the right Dr..and I want to make sure I get what I need.

HELP!

Great forum, by the way...I see we have a lot in common even thru my brain fog.

iVillage Member
Registered: 11-09-2001
Fri, 07-09-2004 - 7:32pm
Hi and welcome - you have many things that seem to go beyond the scope of thyroid disease and my knowledge. I've looked up all your different conditions and it seems to me that you don't need to see an endochrinologist but a neurologist or perhaps an immunologist - someone who specializes in the nervous system, the spinal cord, the brain, etc and/or autoimmune disease. It seems to me - and I have absolutely no training whatsoever - but it seems like something is putting pressure on your nervous system - do you see how all your conditions are related in that way? It's just a guess for me but there seems to be a pattern with all your conditions.

Are you taking medication for your thyroid now? What are you taking and how much? Have you had your blood tested recently? Do you remember your TSH level from your last test?

Why are you/were you taking Topamax? I looked it up and it said it is for migraines, seizures, bipolar disorder, depression ....... I'm wondering why you were proscribed Topamax. Then you have your frozen shoulder ....... which is an inflammation of the joint. Have you ever been tested for any other conditions besides MS?

Ok - I just checked one of my reference books, The Thyroid Solution and he says that severe hypothyroidism - and I don't know what he classifies as severe - can cause a numbness and a sensation of pins and needles in the hands and feet. "The symptoms may indicate a hypothyroid-induced neuropathy, a degeneravtive nerve condition. Some studies have shown taht more then 50% of severely hypothyroid patients have damage to their peripheral nerces and some suffer from the pins and needles sansation" Do you also have carpal tunnel syndrome? This is another symptom of severe hypothyroidism. He says, "Other neurological and muscle problems that can occur as a result of severe hypothyroidism include: Myopathy - a disorder of muscle tissue that can cause muscle weakness and result in high levels of creatine phosphokinase (CPK), a blood marker for muscle disease; a delay in relaxation of the muscle following contraction;and excessive increase in the bulk of muscles(in children); and siezures." Have you had any of these things? Also, loss of euqilibrium, unsteadness on the feet, lack of coordination of the hands and feet, and trembling. Then there's a list of gastrointestinal and respiratory symptoms related to severe hypothyroidism.

What do you think? Cathy

iVillage Member
Registered: 04-21-2004
Mon, 07-12-2004 - 5:05pm
Hi Cathy!

Thanks for your response- I was prescribed Topamax for my peripheral neuropathy- for some reason it acts as a pain reliever for nerve pain. I can't explain it but it works. Was also told that it was probably related to my thyroid as well. Yes I am under the care of a neurologist and they are all blaming my thyroid. The problem is they cannot get my dosage stablized. It wasn't all put together until recently. For example, the eye thing- when your thyroid drops for a period of time, it can cause anemia. That in turn, can cause optic neuritis. It's like dominoes...but very rarely do all those things happen! MS, etc. has been ruled out completely. It's been long enough (over 5 years) and it is rare to have MS in conjunction with Peripheral Neuropathy. MS is a central nervous system disease and peripheral neuropathy is not. They rarely co-exist. My neurologist really is suspicious of my thyroid too. Huh.

My dose of the week (my private joke because it changes every 6 weeks) is now 125 daily and 150 twice a week. It is not enough- I still have symptoms. However I am due for another blood test in a week then I'll see the Endochronlogist or however it is spelled.

What I wonder is the T3/T4 thing- that is one treatment I have never had. I think that is something that seems rather promising? Especially since I have never felt normal on synthroid even when my levels were "normal".

Thanks for your response!

iVillage Member
Registered: 11-09-2001
Mon, 07-12-2004 - 6:18pm
I'm sorry that was the one thing I didn't answer!! And it does sound like your symptoms and conditions fit into the "Severe" hypothyroid catagorey, don't they?

About T4/T3: our bodies produce both of those thyroid hormones but mostly it produces T4, which the body then converts to T3 as it needs it. What you might be missing in your medication is the T3. Synthroid and most thyroid medications contain only T4 because people rarely need the T3 replacement. But some people - and perhaps you're one of them - need to the T3 to feel normal. Cytomel contains only T3 and Armour Thyroid, a natural dessicated thyroid medication made from pig's thyroid contains bothe T3 and T4. That is worth looking into. At least it sounds like you have some good doctors - even though they can't get the solution just yet, it sounds like they know where to look!!

You might want to check out the book, The Thyroid Solution, by Dr. Arem Ridha. It's an excellent book. And let me know if you have any other questions. Cathy :)

And here's a good article on it:

T3 Triiodothyronine Drugs Improve Quality of Life for Hypothyroidism

New England Journal Study Shows Addition of Second Thyroid Hormone -- Not Levothyroxine (i.e., Synthroid) Alone! -- May Help Some Patients Resolve Persistent Symptoms

by Mary Shomon

February, 1999 -- The February 11, 1999 issue of the New England Journal of Medicine reports on the results of research that found that "treatment with thyroxine plus triiodothyronine improved the quality of life for most patients."

The article is titled:

"Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism"

by Robertas Bunevicius, Gintautas Kazanavicius, Rimas Zalinkevicius, Arthur J. Prange, Jr.. Research was conducted by the Institute of Endocrinology, Kaunas Medical University, Kaunas, Lithuania along with the Department of Psychiatry, School of Medicine, University of North Carolina, Chapel Hill.

How the study was conducted

Essentially, they took a group of 33 people who were hypothyroid, either due to autoimmune thyroid disease, or removal of their thyroids due to thyroid cancer. All the patients were studied for two five-week periods. During one five-week period, the patient received his or her regular dose of levothyroxine alone. (Levothyroxine is the generic name for the brand names such as Euthyrox, Levoxyl, Levothroid and Synthroid.) During the other five-week period, the patient received levothyroxine PLUS triiodothyronine (T3.) (Note: In the U.S., the brand name for T3 is "Cytomel." ) In the T4 plus T3 phase, 50 µg of the patient's typical levothyroxine dose was replaced by 12.5 µg of triiodothyronine (T3). A variety of blood, cognitive, mood and physical tests were conducted at various stages of the testing.

Results

From the standpoint of physiological effects, the differences between pulse, blood pressure, reflexes and a variety of other functions for T4 alone, versus T4 plus T3, were very small. Blood pressure and cholesterol in fact dropped slightly on the T4 plus T3.

Where the results were dramatic were in mental functioning. Patients performed better on a variety of standard neuropsychological tasks on the T4 plus T3. Patients' psychological state also showed improvement on T4 plus T3.

At the end of the study, patients were asked whether they preferred the first or second treatments. 20 patients said they preferred the T4 plus T3 treatment, 11 had no preference either way, and only 2 preferred T4 only. The 20 patients who preferred T4 plus T3 reported that they had more energy, improved concentration, and just felt better overall.

The researchers determined that "treatment with thyroxine plus triiodothyronine improved the quality of life for most patients."

The researchers also recommended that the ideal thyroid hormone replacement program for someone without a thyroid gland, or whose thyroid gland is nearly non-functioning, would be "10 µg of triiodothyronine daily in sustained-release form. . . along with enough thyroxine to ensure euthyroidism."

Implications for Your Treatment

This study has major implications for people who don't feel well on their current thyroid hormone replacement.

If you are on standard levothyroxine only therapy, it's possible that, like the majority of study subjects, you too could feel better with the addition of a time-release T3 product in the recommended dosage ratio.

If you are on Armour Thyroid or Thyrolar, the current percentages of T3 in those drugs may be somewhat too high, compared to the recommended ratios described in this study. Optimal results may be obtained by modifying the treatment regimen to conform more specifically to the recommended ratio described in this article.

If you are on thyroid hormone replacement and don't feel well, I recommend that you notify your doctor right away about this research study, and get a copy of this article for yourself as well.

If you are going to share any information with your doctor, at the same time, you might also want to share a copy of a British Medical Journal article that suggests that values above TSH of 2 may not be "normal," but in fact represent abnormal levels indicative of a thyroid already in the process of failing.

Getting a Copy of the New England Journal Article

You can obtain a copy of this article online, for $10. Click here for access to their online access system.

You can also order a copy by phone, to be mailed or faxed to you. It's the New England Journal of Medicine, ask for "Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in Patients with Hypothyroidism," Volume 340:424-429, February 11, 1999, Number 6.

Call their Customer Service Department and order by phone at 1-800-THE-NEJM

The Bigger Picture for Thyroid Patients

This is actually quite groundbreaking research, confirming in the research environment what many patients, myself included, and some doctors, have been claiming for a number of years: levothyroxine-only thyroid hormone replacement does not leave a substantial percentage of hypothyroid patients feeling well, and these patients feel and function better when T3 is added to their thyroid hormone replacement.

Interestingly, this offers an explanation for why patients have felt well all along on alternative thyroid drugs like the natural Armour Thyroid, Westhroid and Naturethroid, which contain T4 and T3 naturally, and the synthetic T4/T3 drug Thyrolar, which is the drug that I take. In some cases, patients also added Cytomel (synthetic T3) or time- release T3 to standard levothyroxine therapy and also have better results.

For years, patients have been told that all they need is levothyroxine treatment to get them into "normal TSH range," and thyroid treatment is considered complete. Time and time again, people who still suffered with symptoms -- including fatigue, depression, cognitive problems, and more -- were told that once their thyroid range was normal, these problems were no longer related to the thyroid, and instead were now depression, stress, PMS, or simply "in your head." Patients who had done well for years on Armour, then switched to Synthroid, for example, and complained of not feeling well were told they were "getting old."

Consider this pronouncement in The Bridge, the quarterly newsletter from the Thyroid Foundation of America, the organization that is supposed to be on the cutting edge of patient issues and advocacy:

"TSH tests are very precise, and if your TSH is normal, then thyroid dysfunction is not the cause of these symptoms."

Douglas Ross, Medical Advisor to the Thyroid Foundation of America

It's absolutely unconscionable that patients have been ignored, denigrated, overlooked, and undertreated for as long as they have been by the conventional medical establishment, thyroid organizations and medical groups.

Meanwhile, doctors who prescribed natural thyroid drugs like Armour -- or even its synthetic counterpart Thyrolar -- were written off as quacks, or irresponsible, or in some cases, even brought up on charges by the levothyroxine-only zealots in their local medical boards.

Let's hope that this information causes the patient and medical organizations, as well as the doctor, to start listening more to patients -- and not to the pharmaceutical companies. Clearly, it's been the marketing position of companies like Knoll Pharmaceutical, manufactuer of Synthroid, that levothyroxine alone is all anyone needs. Following right behind and parroting every word have been the hordes of endocrinologists who gladly benefit from Knoll and its competitors' handouts of grant money, project funding, conference fees, and freebies galore, and are reluctant to rock the levothyroxine money boat.