Looking back, I began feeling 'not right' at about 30 years of age. I had always been very active but found my gym trips and runs/bike rides increasingly difficult. I noticed I needed to sleep more and I couldn't tolerate alcohol or excessive salt or sugar. I self-treated by controlling my diet and sleeping lots.
When I got married in 2004 (aged 35) my eyes were so puffy that I actually thought I may need surgery to correct it!
I had a very regular cycle and had always suffered lots of pain during menstruation but had always been told that this was normal. However, I was unable to conceive. I went to see my GP who did some blood tests. I was fine, apart from a 'slightly' raised TSH but this was nothing to worry about, she said. My TSH was 5.4 at the time (why I did not investigate this myself I do not know. I work as a medical writer and am used to researching diseases and treatments). I went on for further tests, which revealed severe endometriosis. I had this surgically removed and kept trying to get pregnant, with no success.
I went skiing later that year but could only manage to ski in the mornings as I was so exhausted in the afternoons. We were doing an off-piste course and one of the group was a retired endocrinologist. We got chatting and I told him my story.
He got very angry and said that I would conceive if I was prescribed thyroxine and that I should push my GP for a referral. Well, I did just that, was prescribed thyroxine and 2 weeks after starting it I got pregnant, aged 36.
It could be coincidence but I don't believe so. Everyone says how tired you feel when pregnant, and how difficult it is adjusting to the lack of sleep with a small baby, but I felt nothing but energised, well and happy.
I have since had another little girl. My eyes are less puffy. My nails don't snap. The skin on my hands doesn't peel away. I am just better. My GP keeps me limping on at a TSH of around 2 and a T4 at the lower end of normal, but I bump up my dose when I feel I need it.
I'm now 42, running around after 2 girls aged 4 and 2, working part time, exercising, when I get a minute and feeling mostly happy and well, if a little tired sometimes!
Update February 2012
After my second child, my GP reduced my levothyroxine from 125mcg to 100mcg as my TSH was 0.2 (strange how when its 'approaching' hyper they cut your dose, but if you're 'approaching' hypo they tell you its normal...).
I took this for about two and a half years, thinking that it was low, and constantly supplementing with additional broken up pills. I know I'm hypo when I get atrial fibrillations and feel absolutely exhausted after a relatively small amount of exercise.
There came a point where I decided that I needed to address my supplementing since everyone told me I didn't need a higher dose, so I stopped doing it. I then forgot I stopped doing it and about 3 months later started having carpal tunnel syndrome in my right hand, ulner (long bone in the forearm) nerve symptoms down both arms and numbness in both feet that started spreading up my legs.
Then I got numbness in my face and Horner's syndrome in my right eye. Terrified I had MS, I spent a couple of months ignoring it, then decided I needed to sort it out and, thanks to BUPA, got referred to both an endocrinologist and a neurologist by a caring GP who took me seriously.
She thought I just needed a bit more thyroxine but was happy for me to get fully investigated due to my anxious state (another symptom perhaps?). A few months later, an MRI scan shows no MS (quite a perfect brain actually, which I'm very relieved to find), some spondylosis of the cervical spine, potentially causing some pinching in the nerves in most of my neck vertebrae, but nothing really serious.
Electrical conduction tests showed some peripheral nerve damage in the fingers and feet of unknown cause. Interestingly, the consultant doing the test said that he saw this quite often in people with relatively mild hypothyroidism.
Finally, the endocrinologist called my GP 'clinically negligent' for reducing my dose and put me back up to 125mcg levothyroxine, which has completely stopped all the neuropathies. He wants to see me again in 6 months as he thinks there's scope for putting me up again to 150mcg, despite me being 'within normal range'. He treats the symptoms, not the blood results. Both my endocrinologist and my neurologist have admitted that, in the absence of any other diagnosis, hypothyroidism was the most likely cause of my peripheral neuropathy even though it is supposedly only evident in severe disease.
I thought I was going to die of a degenerative nerve disease because my GP lowered my dose and wouldn't listen to me. I know she is a good person who wants the best from her patients, but this was the effect for me. GPs need educating that being on the hyper side of normal is normal for some patients and isn't going to give them osteoporosis and heart disease. From now on I will pay for a yearly consultation with my endocrinologist to manage my hypothyroidism.
It started with frustration
Meet Janet, a successful 52 year old female with who presented at our office with significant fatigue, brain-fog, weight gain, low-back pain, and chronic digestive issues. Frustration was mounting because she had already been to several practitioners at this point, both natural and allopathic.
Janet heard about our office after doing some online research about functional medicine. She had just finished reading a fantastic book by Dr. Datis Kharrazian called, “Why do I have thyroid symptoms when my lab work is normal?”.
Physical signs and symptoms
I could tell from a quick glance that Janet was struggling with hair loss, weight gain around the midsection, dry skin, and puffiness in her face. Her skin appeared to have no color to it but her eyes we filled with hope.
A deeper look
Once we evaluated her paperwork, we quickly realized that her stress levels were through the roof and that her job was killing her. She also noted digestive issues that started after a trip to Mexico a few years back. She reported taking thyroid medications but they did not seem to help her and the weight gain continued to spiral out of control.
Much to her disappointment, her other providers did not really address these issues but instead became hyper-focused on her thyroid numbers (which were perfect on paper).
After carefully probing her, we were able to trace back many of her health issues to failing personal relationships, high stress work, and her stomach bug from Mexico. Janet had a pleasant attitude and was excited to finally find some answers to her nagging health challenges.
What was missed
Her previous practitioners had not evaluated her gut health or her stress levels very closely. She quickly acknowledged that they were simply managing symptoms instead of looking at her overall health and function. We both got excited at the possibility of uncovering and addressing her root causes.
Janet pointed out that she is had given up gluten a few weeks ago and that seemed to really help her stomach feel more settled and lifted some of her brain-fog, but she did not report any weight loss (which was annoying). Janet also had a hard time skipping meals and would become really irritable, sure signs of adrenal fatigue and glycemic dysregulation.
Prior to coming to our office, Janet had countless labs tests done on her thyroid. After probing her doctor more, she was able to convince her to order a thyroid antibody test (TPO Ab and TGB Ab). These tests revealed that her thyroid issues were actually related to autoimmunity. Janet had also done testing that showed an elevated immune response to gluten. The puzzle was starting to come together!