Problems with Getting ACTH Test

[matahari]

I am hypothyroid on T4, Synthroid 135 mcg, but my body is not absorbing it well. I have bradycardia, lupus sle, anxiety, bad hyperpigmentation, hair loss, muscle and joint pains, weight gain and loss, always hot, extreme night sweats, dry skin, extremely dry skin, eyes, mouth and the inside of the nose gets really dry. I have been tested for Sjogren's and my hormones were tested but they came back normal. I was recently placed on Cytomel 5mg which I had to discontinue because I was having a bad reaction to it. I have been to two endocrinologists in Dallas, TX USA in the past six months trying to get tested for my adrenal gland cortisol levels, but both want me to pick up the cosyntropin prescription at the pharmacy and transport it to the lab or office. One has required that I pick up the syringe and saline solution to mix the shot, also. The doctor's office now has the pharmacy acting like I am going to administer the shot to myself! My insurance company is refusing to pay for any of it because they want the physicians to order the medication and administer it in their office. Is there an easier way to get this test done? It needs to take place at the doctor's office or a lab and neither of which is willing to order the cosyntropin for the ACTH test because they have to order it in bulk. One shot costs me about $120.00. That's a great deal of money when you depend upon disability to make ends meet. I am willing to pay out of pocket when I can scrape together the money because my symptoms are really bothering me. In the meantime my nights are miserable and believe me, I don't look forward to going to bed at night. My only alternative seems to be me calling all over town to find an endocrinologist who not only ORDERS and KEEPS the cosyntopin in office but also ADMINISTERS this test in an onsite facility. Any advice out there?!

[shaws Administrator]

Maybe you need more informed Endocrinologists than the one who is prescribing Synthroid - known as levothyroxine in the UK. Many are not recovering on this forum on levothyroxine and those who do well will not be looking for answers.

Welcome to our forum and I will give you a link by an American Doctor who wrote an article for our Scottish Parliament which is self-explanatory and we do need doctors like him who were trained properly and I assume before Synthroid was forced onto patients.

When you get a blood test it should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of Synthroid and the test and take afterwards. This helps the TSH to be at its highest.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Get the results, with the ranges, and put them on a new post for comments.

For some of us our body doesn't like synthetic medications and levothyroxine/synthroid is one of them. We used to get prescribed NDT (Armour etc) before the introduction of levothyroxine and Big Pharma's push to erradicate the NDT in favour of levothyroxine.

I am not medically qualified and few on this forum are, but many have recovered through advice/help from members.

I have now recovered and I am on T3 only. Others are on NDT or T3/T4.

You also have to make sure your vitamins/minerals are good, i.e. B12, Vit D, iron, ferritin and folate. All of these at an optimum level can help our condition.

I am really sorry you are struggling. One of our American Advisers (deceased) would never prescribe levothyroxine - only NDT or T3.

[matahari in reply to shaws]

Thank you for responding so quickly. I have an upcoming appointment and I will get my ranges when I go in on July 13th. This business with my adrenal glands is killing me. I am going to call around to the University's Medical Center endocrinologists and see if I can get this procedure done without all the grief these people are giving me. I have never seen such problems with getting a laboratory test done and never had to personally go to a pharmacy to get the prescription medicine, syringes and suspension solution to have the procedure done, especially for a shot! I know the bradycardia I am experiencing has something to do with my hypothyroid and T3 levels. This really scares me as I am not an athlete who exercises constantly so there is no reason for my resting pulse to register at 44!

[shaws Administrator in reply to matahari]

You have had a really rough time and hope to goodness the doctor you see is a 'knowledgeable' one. So many are not and only look at the TSH - they also know no clinical symptoms. In the meantime before any doctor does anything to you - as many have no idea that levo can cause these symptoms if we're hypo. They should check your FT4 and FT3 first and foremost. This is an excerpt from the following link:-

"In other cases, bradycardia can be a form of cardiac arrhythmia, a heart-rate abnormality. Cardiac arrhythmia can be caused by a problem in the sinus node, or it can be related to some disturbance in the passage of heartbeat signals through the A-V node and bundle of His. Bradycardia can occur with toxic levels of certain drugs, such as digoxin (Lanoxin) and narcotics. Also, bradycardia sometimes is a side effect of certain medications, including propranolol (Inderal), atenolol (Tenormin), metoprolol (Toprol-XL), sotalol (Betapace), verapamil (Calan, Isoptin, Verelan) and diltiazem (Cardizem, Dilacor-XR). Bradycardia also occurs in some people who have certain medical illnesses not related to the heart, such as:

An abnormally low level of thyroid hormones (hypothyroidism)

An abnormally low body temperature (hypothermia)

A very high blood potassium level

Lyme disease

Typhoid fever"

So before any doctor suggests anything ask them first of all to do the two Frees, i.e. FT4 and FT3 - both have to be at the upper level and if not you should be prescribed T3 to be added to levothyroxine on a trial basis. If not T3 alone.

(I am not medically qualified but my symptoms were different to yours (pulse at times 140) but it was levo and I know this because T3 (liothyronine) alone stopped it).

If doctors prescribe T4/T3 it should be on a 3 to 1 basis or 4 to 1. Your dose of 5mcg was insufficient to have very much affect.

Go to page 80 on the following to read about T4/T3 and doses.

tpauk.com/images/docs/reduc...

Doctors run around treating 'symptoms' instead of looking at the overall hypothyroid dose and patient remains unwell.

One doctor states that adrenals are important and should be treated. Another states that on proper medication they fix themselves out. So two different conclusions. I found mine fixed themselves. Give your endocrinologist a copy of the following. They should fix your thyroid hormones first and then look at other problems.

parliament.scot/S5_PublicPe...