I was 35 years old, and expecting my 6th child. I had moderate Hyperemesis Gravidarum (HG) with my previous pregnancies, so I was expecting a rough ride. Before the pregnancy I had worked with a naturopath to prepare my body and was in excellent health both physically and emotionally. This time the sickness came hard and fast, much worse than I remembered. Within a few days I was drowning in nausea, barely able to eat or drink, and the medication I had used in previous pregnancies was not helping much. I was falling apart.
Desperate, I reached out to my midwifery group, only to be told there was nothing they could do. Concerned about my situation, my sister went online and found the Hyperemesis Education and Research (HER) Foundation, who suggested that I switch to a high risk doctor. This was an important change, as I was now given more medications and IV fluids. These included:
- As well as Colace, over the counter.
The medication stopped me from vomiting and the fluids kept me hydrated, but nothing helped the nausea. I was so nauseous that I often felt like I was going to pass out. The nausea was so bad that I couldn’t open my mouth, couldn’t talk, and couldn’t eat. I got weaker and weaker. It was hell.
Vision Problems, Headaches, Balance Problems, Severe Weakness and Other Symptoms – ‘Just Part of HG’, the Doctor Said
At the beginning of my second trimester I started experiencing some unusual and scary symptoms. My vision became blurred, I had severe headaches and I kept losing my balance. Walking was already a challenge due to my general weakness but now I constantly felt like I was about to fall. I used my IV pole as a walker at home and when I left the house I had to hold onto someone for support or use a wheelchair.
I had never experienced any of these symptoms in the past and my family and I were understandably concerned. My doctor, however, was not. He said it was just part of the HG, and would go away after the birth.
My sister contacted the HER Foundation again. They told her that these symptoms were signs of thiamine deficiency, which happens often in hyperemesis and was potentially life-threatening to mother and baby. They told her that I should get a course of thiamine infusions followed by high dose oral supplementation. However, my doctor told me that I didn’t need to take thiamine, and when we asked him if I should see a neurologist he said it was not necessary.
Treating Myself With Thiamine and Hoping for the Best
As a society, we are conditioned to trust the white coat, so I accepted my doctor’s assurances. However, I figured that oral thiamine couldn’t hurt, so I began to take thiamine supplements despite my doctor’s dismissal. While it was far too little to result in any significant improvement, I now think that the oral supplementation prevented progression to severe neurological damage and likely saved my life.
Things improved a tiny bit during my third trimester, and during the evening hours I was able to eat a little more and speak a little. My walking slightly improved. I still couldn’t get out of bed or talk at all until late in the afternoon, but it was better than I’d felt in a long time.
At that point, I still expected that I would get better as soon as the baby was born, as I had after my other pregnancies. My family probably should have realized that my present situation was much more severe and debilitating and would probably require a recovery process, but we all held on to the hope that the ordeal would end with the birth.
Postpartum Thiamine Deficiency
When the baby was born, although the hyperemesis was over, my nightmare was not. I was as weak and helpless as my newborn. I was too weak to walk on my own and my muscles were so weak that I could not lift the baby and needed someone to place him in my arms. I had full-time help for the baby, and was not getting up at night, but no matter how much I slept I still felt exhausted. The fatigue was like a fog, and combined with the muscle weakness, left me feeling unable to function. I also had a very hard time eating as a result of the hyperemesis.
I couldn’t understand what was wrong with me. My blood work was fine, and every doctor I saw had nothing to offer except rest and time. I took lots of supplements but it didn’t seem to do much. I started physical therapy, and the therapist told me that she never saw such weakness postpartum in her entire career. It took me weeks to be able to walk independently and months to be able to lift the baby.
When my baby turned one, I reached out to the director of the HER Foundation. I was still exhausted, my eyesight was still somewhat blurry, my balance was still poor, I still got occasional headaches, I couldn’t walk very far without needing to rest, and I had no energy or stamina.
It was suggested that I begin taking a high dose of benfotiamine, so I upped my dose from 250 mg daily to 1000 mg daily. I saw slight improvement in my vision but didn’t notice major changes in my general condition. However, when I stopped the thiamine I saw a deterioration in both my eyesight and my general energy level. This indicated to me that perhaps my lingering postpartum problems were thiamine related.
Now my baby is almost two. Although I am definitely better than I was after the birth, I continue to struggle in most areas. I still need full-time help with my baby as I can’t carry him more than a few steps. I feel very isolated because I don’t have energy to go out and can’t walk far. Our finances were hard-hit as I am still not strong enough to work. I spend my time with my family but it’s really hard to take care of my kids with the limited energy that I have.
I currently take these supplements:
- Adrenal Strength from Mega Foods – 2 daily
- Mito PQQ from Design for Health – 2 daily
- ADK 10 from da Vinci Labs – 1 daily
- Vital Flora pre and probiotic (100 billion) from Vital Planet – 1 daily
- Vitamin c with bioflavonoids 600 mg from Maxi Health – 2 daily
- Omega 3 Platinum from Zahler – 1 daily
- Prenatal Pro from Design for Health – 4 daily
- Maxi CoQ 200 from Maxi Health – 1 daily
- Potassium citrate from Pure Encapsulations – 2 daily
- Mega benfotiamine from Life Extension 250 mg – 4 daily
- Activated B with SRT from Jigsaw – 2 daily
- Sublingual B12 from Design for Health 5000 mcg – 1 daily
- Neuromag from Design for Health – 2 daily
- Raw calcium from Garden of Life – 2 daily
- Theanine for sleep – 1 daily
I have not been able to find a doctor who specializes in thiamine deficiency who can give me a diagnosis and prescribe a course of treatment to help me regain my health. I am desperate to recover and regain my independence and energy, and return to my previous state of wellbeing. Please help.
We Need Your Help
More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.