Hypothyroidism?

[Landsend]

To Webslave,

I will try to answer your questions, "How did you find out that you were severely low on thyroid hormone if your tests were normal?" In my previous post, I listed most of my many symptoms, bladder symptoms being the worst. Time went on, and my symptoms became more severe. I saw several urologists, some saying "it was all in my head". They also told me that I needed to have my bladder removed...?

I saw about a dozen top urologists, besides a complete physical at a famous mid-western clinic. No one knew what was wrong with me. Then I traveled to a British top urologist. He told me my bladder was very normal, and I did not have IC. So, what was so wrong with me? Could I be so rare, that no other person in the world had these symptoms? The top British urologist did not have the answer. I did have a spinal tap which showed that I had a very high level of protein in my spinal fluid and they ruled out MS. (The high level of protein does occur in hypothyroid disease.)

A short time after I had returned home, I received a phone call from a relative telling me that several members of my family had a low thyroid disease "hypothyroidism". I had most of the well-known symptoms, and many of the not well-known symptoms like the bladder frequency and pain. In my own case my hypothyroid disease is genetic. My Grandmother, Mother, Aunt, my 2 sisters, and 2 of my children and also my Husband are all Hypothyroid. I have seen what this disease looks like and some of them have bladder symptoms.

Hearing this, my family Dr. decided to put me on a trial of thyroid hormone, and he said "that it was the simplest, and safest thing that anyone could have tried". He did the thyroid blood tests at this time. He sent them off to 2 different labs. When they came back my same blood sample came back with different results! He chose the lower one, which was only in low normal range. Interestingly, this Dr. did my husbands thyroid blood tests on the same day and surprisingly his came back very low, he was hypothyroid!

He started me on a trial of 2 grains of Armour thyroid. Each day I was looking and feeling better. My feelings came slowly back into my hands and the aches and pains in my muscles and joints started to go away. The puffiness in my face, hands and feet were now improved. These changes alone were a miracle for me. When my family Dr. saw me, he was so surprised at how much better I looked now on the Armour thyroid. Later he told me that after what happened to me, he was able to help many people. Hypothyroidism is a systemic disease which will mimic many other illnesses. When it is not treated it will slowly destroy you.

A few months ago, I had the opportunity to show my medical records to a womans chronicpelvicpain and IC Dr., who after seeing it seemed shocked. He kept saying "Of course, you are very rare". I kept saying "Nope!"

Sincerely Landsend

[Landsend]

To Faceinthecrowd,

Perhaps you do have a normal thyroid, but there is great controversy on the reliability of the current thyroid tests. There are some Drs. who believe that these thyroid tests aren't worth the paper they are written on. Instead of getting better at diagnosing hypothyroid disease, they are actually leaving millions of Americans untreated and suffering. Drs. are not taught how to diagnose by the symptoms as they did back 3 or 4 decades ago. Many end up being treated for many illnesses they do not have, and this is the scandal that Dr. Barry Durrant-Peatfield explains in his book "The Great Thyroid Scandal and How to Survive It". See http://www.baronsdownpublishing.com

My current Drs. now are treating me with 3 1/2 grains of Armour thyroid. They tell me that I have peripheral nerve damage throughout my body. When the nerve damage has been for a long time, the healing is very difficult. (http://www.neuropathy.org). I have tried many pain medications, antidepressants, vitamin B 12, Neurontin, and etc. Most of them make me sleepy or very nauseated. Nerve pain is very difficult to treat. I do see a Dr. at a pain clinic who is trying to help with this difficult and very painful nerve pain. I saw the Dr. today and he said the nerves will heal slowly and the body has a wonderful ability to heal. He doesn't want to give me narcotics. I really don't think anyone understands my pain.

Specifically, I suffer with distal sensory neuropathy. This affects my hands, soles of feet and urinary bladder. I have also had carpal tunnel which is the most common nerve damage in low thyroid. In addition I have Along with this nerve pain, the Dr. tells me that I have autonomic nerve damage throughout the body, those nerves that work for us without us thinking about them, internal organs, (like stomach, heart, intestines and bladder) glands, and blood vessels. On my last increase of Armour thyroid my Sciatica went away in just weeks. Sciatica is also a peripheral neuropathy. Muscle pains and weakness, yes, I was a mess. By the way depression and anxiety are also symptoms of Hypothyroidism.

Another important aspect of this is that some hypothyroid patients do not feel well on the Synthetic thyroid hormone that has only one hormone called T4 I had this problem. I have found that I do best if I take the dessicated natural Armour thyroid that has T4 and T3. My Drs think that I may lack the ability to convert the T4 into the T3. T3 is many times more powerful than the T4 and The T3 is also ready for the bodies cells to use immediately.

Hope your Dr. can help you with the gastroparisis, and if you have autonomic nerve damage, that you get it solved really soon.

Sincerely Landsend

[webslave]

Anyone suspecting they have hypothyroidism should read:
http://www.nlm.nih.gov/medlineplus/ency ... 000353.htm

[faceinthecrowd]

Thank you for the encouragement, Landsend. I am wondering how specifically you got diagnosed with autonomic nerve damage. Did they perform some kind of test, or did they diagnose you by excluding everything else? Also, you didn't mention seeing a neurologist in any of your posts - I'm wondering if you ever saw one and what his opinion was on your symptoms. As far as the thyroid test, that makes my blood boil. I mean, how are we supposed to get healthy again if we can't rule things out because the tests are unreliable? I am just so frustrated with this - and all the more because I went through a period of time where my prostatitis improved considerably, and now it's back again with a vengeance.

[Landsend]

You are welcome. When you look at the site that webslave has posted you can see the long list of symptoms and most patients only have a few of them. Some patients like my husband, his only symptom was having very low energy. They say that 27 million people in the US have a thyroid disease and that only half of these people know it. Where are they, why isn't more being done to correct this disease? There are more people with a thyroid disease then all the cancer and diabetes combined. I know anger and great sadness as my life has been ruined. I try to use my anger into something useful and talk to others about thyroid disease. I have even helped a Dr. get the correct thyroid for a family member. I think the Drs. should be taught to diagnose thyroid diseases in the old fashined art of listening and seeing the patients symptoms. This is no longer taught and most, not all, are going by the blood tests.

Yes, I did see a neurologist about all my nerve damage and this was over 25 years ago, at a large hospital. I remember having several nerve function tests, they were suspecting possible MS. This is when I had the spinal tap and it showing a high protein level in my spinal fluid. This meant that it was in my brain and the rest of my poor nervous system.
They ruled out the MS. But did not diagnose me with anything. It was only by my having a living relative who new our family medical history and how many had Hypothyroidism. Thyroid disease can be caused by many other things. Some Drs. think flouride and things in the drinking water are harmful to thyroid function.

Not long after having these tests done, I learned from my relative that I had Hypothyroidism. This was enough for my Dr. and he told me that a biopsy might show the problem and then again not. He thought I had gone through enough tests by this time. It is done today by neurologists, and you can go to http://www.neuropathy.org forum to learn about them. I saw some biopsy pictures on the internet, I don't want to be cut! My Dr. said he was very surprised that I had never had a biopsy. Well, no need if you are low thyroid.

In addition to my internal medicine Dr. I am seeing some Drs. at a medical school and they understand about Hypothyroid neuropathies and have my complete medical records. My Dr. is a very old Proffessor and has treated with Armour thyroid for nearly half a century before they had the blood tests. So he knows all the nerve damage that Hypothyroidism causes. You might want to check out the this at http://www.armourthyroid.com and they have a list of Drs.

Boy do I understand the frustration of being in so much pain and the suffering so much you cannot work or live a normal life. Do not give up but read and ask your Drs. if you could have peripheral nerve damage that is causing all of your symptoms. Sometimes you have to go to many Drs. in order to get the right answers. Rediculus, because if it is from having low thyroid the treatment is simple, safe and cheap.

I received this today, check it out:
http://www.nj.com/living/ledger/index.s ... 394170.xml

Good luck with the Dr. and please let us know what he tells you.

[webslave]

I received this today, check it out:
http://www.nj.com/living/ledger/index.s ... 394170.xml

I did, and the article says:

If you think you may have thyroid disease, you should ask your doctor to order a simple blood test, known as TSH (thyroid stimulating hormone) to measure the level of your thyroid function.

I have seen nothing that would indicate to me that these tests are inadequate or faulty. If you can cite a study showing the tests do not show up hypothyroidism, I'd be interested. I am very wary of people who claim to have medical conditions that the usual tests cannot find, and who claim the tests are faulty or inadequate.

[Landsend]

To Webslave,

Okay, this article is brand new and is just what I have been trying to explain on the faulty thyroid tests that are leaving many Americans with Hypothyroid disease (too little thyroid hormone) untreated or undertreated.

Although I have no medical training, my experience with IC and hypothyroidism is for me, very real. I believe that I am not alone and this subject is of major importance to any who are like myself. I just feel I need to take the time to share this here with all of you. Thanks for letting me do this. Please read the following article that is just published!

http://www.ama-assn.org/amednews/2004/0 ... sa0301.htm

I would like your comments on this article.

[webslave]

The article you cite says:

Even if it isn't easy to decide who to screen, at least the TSH test provides a straightforward way to make the determination to treat. "The only hard part about making the diagnosis of an underactive or overactive thyroid gland is thinking about the possibility," Dr. Ladenson says. "Once that occurs, it's very easy in the laboratory to rule these disorders in or out."

The TSH test, which actually measures a pituitary gland hormone, has made a big difference in checking the thyroid's role in the body's feedback system that links the hypothalamus, pituitary and thyroid. Although it has been around for several years, the sensitivity of the newer versions of the test have improved enormously, Dr. Bergman said.

It also makes no mention of the neurological damage you claim is possible, other than carpal tunnel syndrome. I have not seen any other mention of neuropathies in connection with hypothyroidism elsewhere either, other than entrapment neuropathies like carpal tunnel.

I'm afraid I am going to ask you not to post any more about this disease on this board.