Geri Rybacki is a patient advocate, the Executive Director of the Coalition for Better Thyroid Care, as well as `leader of a monthly thyroid support group in Massachusetts. Geri learned more about the issue of needle phobia, after one of her support group members became seriously ill with thyroid complications as a result of needle phobia. Geri is sharing her findings in this Q&A, to help other chronic disease patients who may not realize the risks of this common phobia, and ways to cope.Mary Shomon: First, what is a phobia?
Geri Rybacki: A phobia is defined a persistent, irrational fear of a specific object, activity, or situation that leads to a compelling desire to avoid it.
Mary Shomon: What is needle phobia?
Geri Rybacki: Needle phobia is an irrational fear of needles, often so severe that it causes the sufferer to avoid needed tests or procedures that involve needles.
Needle phobia is not a benign phobia. It can have serious, even deadly consequences, because patients may categorically avoid all procedures that involve needles, such as lab testing, injections, vaccinations, even dental work. For thyroid patients -- who need regular blood testing for diagnosis and treatment -- needle phobia can be a huge impediment to treatment.
Needle phobia is considered a mental health disorder - it was added to the American Psychiatric Association's "Diagnostic and Statistical Manual of Mental Disorders" in the 1990s.
Mary Shomon: How many people have needle phobia?
Geri Rybacki: Dr. James Hamilton, author of "Needle Phobia: A Neglected Diagnosis," estimates that at least 10 percent of the population has some degree of needle phobia, with a small percentage so phobic that they would rather die than have a procedure involving a needle. Although hard to measure, Dr. Hamilton also believes there could be a much larger "hidden population" that goes without regular health care because of needle phobia.
There also appears to be a hereditary or genetic component, as some 80 percent of needle phobic patients report that a first-degree relative also has/had a significant fear of needles.
Mary Shomon: What causes needle phobia?
Geri Rybacki: It's thought that needle phobia may be rooted in an automatic reflex, known as the vasovagal reflex, that can cause shock when someone is punctured with a needle. When the vagus nerve is suddenly stimulated, it can set off a chain of events, most notably a drop in blood pressure and heart rate, which can cause a number of physical symptoms. With repeated exposure to needles, those who have this reflexive response may develop a fear of needles.
Many doctors and patients have found that needle phobia has little, if anything, to do with pain. One patient put it this way "I don't know a single needle phobe who cares a bit about the pain. I personally would rather have my arm chopped off than have a needle shoved into it. When there's a bad experience and that becomes the trigger to the phobia, it's still the fear of needles, not the fear of pain."
Mary Shomon: No one likes getting shots or blood drawn. So how is needle phobia different?
Geri Rybacki: Few people enjoy getting an injection, or having blood drawn, but they put up with it as part of medical tests and treatment. Needle phobic patients, however, may end up completely avoiding all needle procedures. They may know their fear is unreasonable, and are distressed about it, but they are powerless to overcome the fear. Even the thought of exposure to needles can trigger anxiety or panic attacks in some patients. When exposed to needles, sufferers may experience fainting, light-headedness, vertigo, pallor or nausea.
Needle phobia can produce dramatic changes in blood pressure, pulse, heart rhythm, and stress hormone levels. It can lead to fainting, convulsions, shock, and, in rare cases, can even be deadly.
Mary Shomon: How do doctors and health practitioners respond to needle phobia?
Geri Rybacki: It's a mixed bag - in part because, as you say, no one likes getting shots. Because a dislike of needles is so common, it almost certainly makes it harder for needle phobic patients to have their situation taken seriously - which is critical!
Many doctors try to be sensitive, and have a variety of techniques they use with patients. Florida physician Kenneth Woliner, MD told me about a needle-phobic thyroid patient who came to his practice. When arranging her first appointment she informed his staff that she had a needle phobia and wanted to be treated without any blood tests. Dr. Woliner's staff went above and beyond, assuring her they had some approaches that could make the experience easier -- things like heating pads, numbing products and pen massagers that help the patient feel a vibration rather than the needle stick.
While these approaches may be helpful for a lesser fear, dealing with the phobia is particularly difficult. Says Dr. Woliner: "We had no clue what we were in for. All those usually effective techniques were useless for this patient. She cried. She screamed. My medical assistant, who was letting the patient hold her arm, almost had her skin ripped right off. We got the blood that time, but I realized that we should never underestimate the extent of a needle phobia in a patient again."
Mary Shomon: When did you first encounter needle phobia?
Geri Rybacki: My own understanding of needle phobia began at my local thyroid support group. After a meeting, one of our members, I'll call her Phoebe, confided to me that she hadn't been taking her prescribed thyroid medication, despite having had a total thyroidectomy. She was totally reliant on her thyroid pills for thyroid hormone, but she wasn't taking any medication, because her doctor wouldn't give her a refill until she had new lab work done.
She had told her doctor about her needle phobia but he didn't take it seriously, and insisted on new blood tests before renewing her thyroid prescription. His unspoken message was basically "buck up."
I encouraged her to see another doctor who might be more helpful.
When Phoebe showed up at our next meeting, our group members and I were all shocked at the dramatic changes to her appearance. She was practically unrecognizable - a textbook picture of myxedema, which is a serious complication of being hypothyroid without treatment. Her face and eyes were so swollen that she looked like she had been pummeled with boxing gloves.
Clearly, she hadn't taken my advice to find a new doctor, but I was glad that she'd managed to make it to the meeting, despite the dismal state of her health. We found out that Phoebe lived alone, in a remote location and far from any family, so no one was with her to see the decline in her and help her to take action. And being so profoundly hypothyroid made it harder for Phoebe to have the energy, motivation, and focus to look for solutions.
I offered to help, and Phoebe gave me permission to arrange an appointment with another doctor. When I explained the situation and symptoms to the new doctor, he advised me to get Phoebe to the emergency room as an interim measure until he could see her for an appointment. He even faxed orders for a panel of blood tests to the hospital, so Phoebe would only need to have her blood drawn once for the ER visit and for her appointment with him. He also suggested anti-anxiety medication to help Phoebe get through the blood testing process.
At the emergency room, despite my detailed explanation of Phoebe's needle phobia, it was clear that the staff didn't understand why she was at the ER if all she needed was thyroid bloodwork. I could tell that they were used to hearing people claim they were afraid of needles, but that generally all they needed was some reassurance that it was "just a tiny needle and would only be a quick pinch."
But I watched as the standard words of reassurance didn't work at all for Phoebe. In fact, just hearing the medical staff talk about the needles was making things far worse, and increasing her profound anxiety.
Phoebe put it well: "Telling a person with a needle phobia that 'it's just a little tiny needle' and expecting that to help is like telling someone with a spider phobia that you're about to put a spider on them, but not to worry because 'it's just a little bitty spider.'"
Ultimately, the ER staff agreed to prescribe the anti-anxiety medication, and along with my encouragement, Phoebe was able to get through the blood draw, though she felt anxious and panicky throughout the process But the prescription medication enabled her to remain calm enough to get through the procedure, when in the past she was unable to even get the tests done.
It was a good call that the doctor had sent her to the ER. Phoebe's Thyroid Stimulating Hormone (TSH) level was over 150 - the normal range usually tops out at around 4.5, so 150 is profoundly hypothyroid. She was actually so hypothyroid that her kidneys were starting to fail. A few more weeks without thyroid medication and Phoebe might have died.
Phoebe was started immediately back on thyroid medication, and saw the new doctor soon after. Under her new doctor's care, and on her prescription thyroid medication, the swelling and puffiness gradually disappeared and her health vastly improved. At our support group meeting a few months later, she was like a new person. She now gets follow-up lab tests done by taking anti-anxiety medication beforehand and having a friend go with her for the procedure.
Mary Shomon: What can help treat or manage needle phobia?
Geri Rybacki: There are a number of things to consider and try - but as with any health issues, including thyroid treatment, one size doesn't fit all, and different approaches help different patients. But here are some suggestions.
For milder needle phobia, some of the approaches that have helped include:
- Having a friend or relative come with you for needed procedures
- Pinching or rubbing the area as a distraction during a needle-stick
- Hypnosis, and self-hypnosis
- Guided imagery or visualization
- Cognitive therapy
- Numbing products
- Massagers, vibrating pens
For more significant needle phobia, like that of my support group member Phoebe, it's crucial to have a practitioner who understands and takes needle phobia seriously. That certainly made all the difference for Phoebe. So above all, communicate! If you know that you can't get blood work done without extra support, tell your doctor…be up front, and don't be embarrassed. Your phobia is not a personal failing; it's an illness that the doctor needs to acknowledge and support as part of your overall medical care.
Some approaches that can help more serious needle phobia include:
- Working with your doctor to arrange for administration of anti-anxiety medications or nitrous oxide ("laughing gas") prior to procedures involving needles
- Minimizing needle procedures - avoiding any that are unnecessary - and coordinating in advance with doctors so that you don't have to get multiple blood tests done separately.
- Elevating the lower extremities in a recumbent position while tensing muscles to help increase blood flow to the brain and reduce shock and fainting.
- Desensitization therapy with a psychiatrist or clinical psychologist. (Note, however, that according to needle phobia expert Dr. Hamilton, the process can be lengthy, expensive and has mixed results.)
- For needle phobes who must undergo dental work, some dentists offer "sedation dentistry"
Geri Rybacki: Absolutely, I think it's so important for healthcare workers to understand, recognize and take needle phobia seriously. To that end, I have a few suggestions:
- Health care providers should come up with a way to "flag" a patient as needle phobic, so that their staff and other providers who encounter that patient know that the patient has more than an ordinary fear of needles.
- With a needle phobic patient, health care providers should ask in advance if talking about the needle or the procedure is distressing for the patient. Because during the procedure, even if it's meant to be reassuring, such talk can often dramatically escalate anxiety and symptoms of the phobia.
- Health care providers should familiarize themselves with the various options to help patients with needle phobia, and be willing to communicate with patients to map out a plan to ensure that patients are able to get necessary tests and treatments.
Geri Rybacki: If you or a loved one has a needle phobia, don't let it get in the way of necessary medical tests or treatment, or dental care. As you can see, there are things that can be done to treat or at least manage the phobia, and the alternative can be damaging or even dangerous to your health.
To paraphrase a favorite quote of my dear father, "having blood drawn ain't for sissies but it beats the alternative."
Mary Shomon: Where can people get more information about needle phobia?
Geri Rybacki: I recommend the following resources:
- Hamilton, James. "Needle Phobia: A Neglected Diagnosis," The Journal of Family Practice, Vol. 41, No.2, pp. 169-175, Abstract
- Needle Phobia: A Potentially Deadly Diagnosis
- What is a Phobia? What Causes Phobia?
- The Needle Phobia Page
- Beyond 'White Coat Syndrome' - Fear of doctors and tests can hinder preventive health care