It’s widely acknowledged amongst Complex Regional Pain Syndrome sufferers that this illness rarely occurs in isolation. What may start with pain in one limb often sadly progresses to involve other extremities, internal organs and regulatory systems of the body, including the immune system. One major problem that can go hand in hand with CRPS is thyroid deficiency.
Studies suggest that around one third of CRPS sufferers also have an underactive thyroid, known medically as hypothyroidism. I suffer from this and after posing the question in CRPS support groups, it appears that there are many of us in the same boat. Interestingly, I’ve not come across a single person who reports an overactive thyroid and the clinical studies show no link either.
Why do people with CRPS get hypothyroidism?
The reality is that CRPS, whilst initially presenting as a problem in a specific limb, often after trauma, doesn’t just limit its effect to that one part of the body. Regardless of whether the intense pain, temperature and colour changes spread to another site or not, long-term CRPS occurring over many months and years creates changes in the body’s major regulatory systems. The reasons for these changes are still poorly understood, but the reality is that if you have CRPS, it will affect more than just the places where you have pain.
What is the thyroid and what does it do?
The thyroid is a small butterfly-shaped gland in the front of your throat, sitting just under your Adam’s apple. The thyroid gland makes hormones that it releases into the bloodstream. Essentially, the thyroid is the master of metabolism; that is how quickly the cells in your body use the energy that is stored within them. The faster your metabolism, the quicker you will burn energy. Those with an underactive thyroid, however, will find their metabolism slowed right down, causing a variety of problems from tiredness to weight gain.
Is an underactive thyroid a serious problem?
In a word, yes. If your thyroid doesn’t work properly then every aspect of your health can be affected and if left undiagnosed it can cause serious problems, including heart disease, infertility and goitres (swelling in your throat). Particular care needs to be taken with children and during pregnancy. Hypothyroidism during pregnancy can lead to pre-eclampsia in the mother and birth defects in the baby. Children with an underactive thyroid can develop irreversible neurological problems and have poor growth. This sounds scary but it is easily diagnosed and easily treated.
What are the symptoms of thyroid problems?
I think it’s pretty difficult to know if you’ve got a thyroid problem on top of your CRPS; I certainly had no idea until my GP ran a routine blood test. That’s because many of the symptoms are ones that you’re likely to experience as a CRPS sufferer anyway: fatigue, weight changes, depression and anxiety. Every CRPS patient I know suffers from all of these simply due to the pain and the horrible effects it has, like not sleeping, forced inactivity and just the sheer amount of your life it takes away.
The symptoms of an underactive thyroid are: exhaustion, weight gain, depression, anxiety or panic, high cholesterol, constipation, hair loss, swelling or tightness in the neck and muscular aches. In women it can also create irregular or missing periods and infertility. Hmm, is it just me or does that read like one of those ‘spot the difference’ puzzles for a CRPS sufferer?!
How is hypothyroidism diagnosed and treated?
A simple blood test can show whether your thyroid levels are within normal range. Your GP can do this blood test and if it shows abnormalities, they’ll refer you to the Endocrinology department of your local hospital. The blood test will often be followed up with an ultrasound of the thyroid gland to confirm the diagnosis.
Generally treatment is very simple: you’ll be prescribed a synthetic form of thyroid hormone that you take daily to restore your hormone levels to normal. Normally this works very quickly and within a week or two you should start to feel less fatigued and over time, the medicine will start to lower any raised cholesterol levels and possibly reverse any weight gain. You’ll probably be on the tablets (called levothyroxine) for life and it may take some time to determine the correct dosage, so you’ll likely have blood tests every few weeks until your levels are stable. If your levels of thyroid hormone start to go too high, then you may experience some of the symptoms of an overactive thyroid, including heart palpitations, shakiness, increased appetite and insomnia. I wish you luck in trying to differentiate pain insomnia from thyroid insomnia!
What’s the prognosis?
Once it’s diagnosed and successfully treated, the prognosis for those with an underactive thyroid is good. You’ll likely be on medication for life, but I doubt that will faze many CRPS patients (most of us feel like walking pharmacies anyway). You’ll have to have a blood test at least yearly to check that your thyroid levels are stable and your medication is working. Women should take care with pregnancy; don’t try to conceive until your thyroid level is stable, and your doctor will need to monitor your thyroid throughout your pregnancy.
This all sounds a bit rubbish. Is there any upside to an underactive thyroid?
YES! There is one significant silver lining for those CRPS patients who also develop an underactive thyroid: it should entitle you to a medical exemption certificate, meaning that you don’t have to pay for any of your prescriptions for any medications. For those of us on multiple medications, this can be a huge money saver. Ask your GP for more information.
If you’re not entitled to a medical exemption certificate but have multiple prescriptions, it’s worth checking out whether a prescription pre-payment certificate would save you money. A 12 month certificate costs £104 (can be paid by monthly direct debit) or you can get a 3 month version for £29.10. More information can be found here.
So what’s the takeaway here?
Any CRPS patient should make sure they’re aware of the link with hypothyroidism. If your GP doesn’t know about it, tell them. I think it’s very difficult to differentiate thyroid symptoms from the effects of CRPS; certainly I didn’t have a clue that any of what I was feeling was down to anything but the pain. Try to assess honestly how you’re feeling on a day to day basis. If you’re more tired than normal, putting on weight and feel that things just aren’t right then ask your doctor for a thyroid function test. If you’re a longterm CRPS sufferer, it may be worth asking for this test yearly just to keep on top of your thyroid function and ensure that problems don’t go unchecked. If you are unlucky enough to develop an underactive thyroid like a third of the CRPS patients out there, take comfort in the fact that it is easily treated and generally fixable. It’s a pain in the neck (sometimes literally), but with the right treatment, one that won’t affect your life too much.
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