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Follow Up Appointment & DHEA

Posted Jul 24 2012 12:06pm

I received a phone call from a friendly nurse from ME Specialist’s clinic that Dr GD wants to discuss about the blood test result with me. She understood my difficulty getting to the clinic and gave me enough preparation time.

I nominated the ME Specialist (GP) as my treating doctor during the meeting. Accordingly, I refer him as Dr GD from now on.

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Now that I’ve been there and met people there, the strain on sensory stimuli processor was much less than the first appointment. Although I felt strong enough, Dr GD kindly pushed me in wheelchair into his office.

He started explaining from negative results and what diseases he screened and brief explanation of each disease. I’m reasonably familiar with those disease names as they are CFS related autoimmune diseases. While he explained these, he maintained eye contact with me and made sure I had no question.

The most significant positive results were high cortisol and very low DHEA level. I’ve never done these test, so I was very curious. Naturally, I had my own research done trying to understand them. Dr GD explained high cortisol means I’m under stress and very low DHEA means my system hardly have any ability to cope with stress. Since DHEA is anti-stress hormone, combination of high cortisol level and very low DHEA level means my system is in stress crisis. It seems looking into the balance of those two hormones is important in deciding on treatment.

Examples of cause of chronic stress are;  insomnia, infections (virus, bacteria), allergic reaction, nutritional, physical, mental, emotional overload, and so on.

He recommended DHEA supplement and printed out prescription for me. I’ve heard DHEA as treatment for ME/CFS before and it’s widely available over the counter in many countries. Unfortunately, in Australia, we need prescription to purchase it, and we can only get it from compounding pharmacist.

Dr GD explained it is safe and also it would help stopping me from getting depressed. He thinks it will make me feel physically stronger in 6 weeks time. He cautioned that this is not for a cure, but it could improve my condition. My expectation is reasonable and realistic, and I assured him I’m not asking for a cure.

Only negative reaction from DHEA supplement would be my face might get oily. I’ll give it a try anyway, and see how bad it could be. I’m pleased that there is still something I can try.

He searched his files and printed out a paper on DHEA, put them with the prescription neatly and stapled them together. (His printer has in-build automatic stapler!)

He also printed out all my blood test results and neatly stabled them together for me. I was happy that he gave this info, so that I can be proactive to monitor how my system is doing from now on.

My blood calcium level was low, which is my normal. Thanks to the past GP, I know it is because of low parathyroid function. And the treatment for my Hypocalcaemia and Hypoparathyroidism so far has been Vitamin D supplement.

Dr GD asked if I had Vitamin D level tested. I had it done long time ago and it was low. Then, I had another one while I was on 1,000 IU Vitamin D supplement, and it was still low. So, we concluded that it was okay for me to have high dose Vitamin D supplement. Since then, I discovered Vitamin D helps with my mood, and I increased the dose slowly. Currently, I’m taking 5,000 IU twice a day. I asked Dr GD if it is too high, he answered it’s not too high.

Then, we discussed about Calcium supplement. Calcium wasn’t recommended by the past GP. I got the impression that its deposits in blood vessel could cause problem to my health. Out of curiosity, I started taking Calcium from May. Despite of the supplement, my Calcium level is still low. So, Dr GD suggested to double the amount.

I asked a few silly questions and I got answers and confirmations. It is recommended not to take Magnesium and Calcium at the same time. But an hour or a half hour between is enough. Calcium is recommended to take with food.

I explained that the Cardiologist didn’t receive the referral letter. Dr GD’s nurse faxed it for me, when I phoned. I made an appointment with the Cardiologist in September. Dr GD feels it’s a long wait. I said I’m going with the flow. Since I need prolonged rest between major appointments, it is not long wait for me. Probably, Dr GD is very keen to see the investigation result done by the Cardiologist. Since I’m used to getting negative results from medical investigations, I’ve adopted the attitude not to anticipate anything from it.

He printed out two copies of the referral letter, signed one and gave it to me. He asked the receptionist to fax the other copy again. Now, I can be more than sure that the Cardiologist has the referral letter now.

From reading the referral letter, I can tell Dr GD listened to me carefully at the first appointment and remembered what I said.

I asked if I should increase salt intake for OI. He suggested to wait until after the Cardiologist’s investigation as it might affect the test result. I can tell that Dr GD is sure that I have OI as much as I’m sure I have it. However, it is wise to wait for the investigation result before starting any treatment.

My next question was if he would authorise the transport for me when I make an appointment with him. He enthusiastically agreed. I’m getting a bad feeling from my local GP surgery and it is compelling me to prepare for the future.

Dr GD’s welcoming attitude is more than enough to convince me and I asked him to be my main treating doctor from now on. It was happily accepted.

Analysing Pros and Cons, I can only list two cons, which are the difficulty of getting to the clinic and there is out of pocket fees. However, I can make a long list of Pros;

I will remain as a patient at the local GP surgery for now until I am sure that I can manage my life without them. I probably need prescriptions and some odd appointments every now and then.

Things are starting to work for me. It gives me a massive relief.

Having a good doctor halves struggles and doubles positiveness in chronically ill patient’s life. I’m grateful that I met Dr GD.

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I’ve checked articles about DHEA supplements and got confused by different dosage recommendations and risk analysis. Therefore, I would suggest to consult with your doctor, including having the blood test done to determine the necessity of supplementation, before you buy DHEA over the counter.

Some information about Cortisol and DHEA

Phoenix Rising: DHEA (Dehydroepiandrosterone)

Doctor Myhill: Common Hormonal Problems in CFS – Adrenal

ProHealth: The Adrenal Gland and ME/CFS – Stresses & Problems with the Body’s Gear Box

LifeExtension Vitamins: ~DHEA Replacement Therapy

The Allergy & Nutrition Centre: Stress, Insomnia and the Adrenal Glands (Cortisol and DHEA)

 

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