Hyperemesis thiamine deficiency

Hyperemesis Induced Thiamine Deficiency Ignored By Doctors

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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:

  • Zofran
  • Reglan
  • Prilosec
  • Diclegis
  • Sulcrafate
  • 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.

Still Struggling

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.

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13 Comments

  1. I am 41, currently in 3rd trimester with my 6th. I have had moderate HG with my last 4 pregnancies (my only “normal” pregnancy being my first). Although my symptoms and issues are not nearly as extensive as the author’s, I find many similarities in more minor severity. This pregnancy has been consistent in many ways with my others, but in my 2nd trimester I started developing a lot more weakness to the point where there are days even now (I’m 33 wks) where I can hardly move out of bed I’m so exhausted. I get bouts of tachycardia and headaches, my vision is very poor, I have extreme muscle weakness and cramping at times (a lot due to dehydration) and go out of breath from things as simple as changing a diaper of one of my children. I am limited as to what I will do each day because I have energy to perform one, maybe two basic tasks before I have to lay down for a few hours.

    I have had labs that show some out of range numbers indicating that I could be creeping toward pre-eclampsia, so I have tried to mitigate through suggestions by my midwife of diet (Brewers) which is difficult due to the HG, so I try to eat something one time a day. I am taking a baby aspirin 1x/day and monitoring my symptoms. I take in iv fluids (1000ml saline) 2x/wk to supplement hydration. I avoid lactated ringers as through my own research in HER foundation I have seen the risks of LR with not knowing or administration of thiamine to supplement deficiency. However, this is all done through self diagnosing and administration somewhat outside of clinic because no doc I have encountered in my last 5 pregnancies has much knowledge about HG or how to treat. I am slightly too high risk to be in the care of a midwife, but I cannot ever determine if I’m high risk enough to be with an OB. This is mostly because my previous interactions with OB’s is they don’t take anything seriously unless I would get to the point of fetal distress. I had to demand fluids in the past which they would hesitate to give me as “my baby was not in distress”, and the only solution they’ve ever given is to prescribe multiple anti-emetics which make my system function worse and have virtually been rendered ineffective in doing anything except taking a small edge off the nausea. Vomiting still occurs regularly.

    All this to say, I began supplementing recently with oral Allithiamine when I can tolerate it. However, when I take it, about 5-10 minutes later, I start to have overwhelming urge to cough and have trouble deep breaths without coughing. I also get bad stomach pain for about 30 min/1hr as if things are trying to move through my system at a high rate. I have no swelling of the throat or signs of anaphylaxis, so I’m wondering what would cause this? I’m only taking 50mg at a time (2x/day) as the taste, my HG and the reaction takes so much effort to hold down that I can’t do more at once. Has anyone else experienced this (and am I just heading toward a huge reaction that my body hasn’t built up to yet?!)

    My midwife had suggested a general thiamine supplement, but their knowledge and scope is limited, so all research has been done by me which led me to the conclusion that a minimum of 100mg/TTFD was necessary with the symptoms I have been having.

    Thanks to anyone who has suggestions 🙂

  2. Hi , I would seriously consider joining the vitamin b12 wake-up group on Facebook , I see you are taking sublingual BUT neuro symptoms require every other day injections ! I hope that bit of info helps ? there are endless files of information regarding testing not being accurate and complete lack of even acknowledgment by doctors

  3. Hi Rachel, I am sorry about your difficult situation! My first thought—your thiamine dose seems really, really low to be correcting a deficiency like you seem to have. Also, Allithiamine might be a better choice for you than benfotiamine. It is much better utilized by the body. Lots written about that on this site.

    I routinely take several hundred mg of Allithiamine daily to keep my own deficiency in check. Elliot Overton, who has written many articles here, uses much more.

    I know people who have gotten great initial relief from IV vitamin infusions, even if they cannot continue them long-term. In Ohio, anyone can get them at clinics in our town; they are around $100 each visit. One or two might be good for troubleshooting—a general vitamin infusion that included thiamine might help you determine if vitamins would help your problem.

    I use bowel motility as a measure of my thiamine status. When my motility isn’t what it should be, I take a few extra Allithiamine. Dr. Lonsdale says to just titrate up till symptoms are relieved, and that it is safe.

    One more thought…any chance you could have a candida yeast infection as well? Do you have a white-coated tongue? I have 3 kids, and had similar issues as you, though not nearly as severe. But over time, my health spiraled down into a very bad place. It took me several years to recognize, and then learn to treat, my candida infection and then thiamine deficiency. A systemic infection of some kind, and it could be many things, could be part of the problem.

    • I would like to add this—if you have severe thiamine deficiency, then something is causing it. As I have thought about your article this evening, I feel it is pretty clear you have something else going on. In my family’s case, strep and EBV, along with candida, were likely at the core of our problems. My son and I especially took round after round of antibiotics. We were both a mess. As an infant he had thrush (I did too), chronic yeast infections while he was in diapers and we both had terrible breath. We were full of yeast.

      Have you been tested for any infections, like strep? In an article Dr. Lonsdale wrote, he talked of a patient early in his career who was autopsied after he died and whose brain was found to be riddled with infection—I believe it was strep. Strep can get a strong foothold and stay embedded in a weak system. My son and I were classified as “carriers” by our doctor, meaning we always had it in our systems, and were always passing it on to others.

      Anyway, I thought maybe thinking about possible causes for your deficiency might be helpful!

        • Thanks for your suggestions. I’ll look into them. Do you know the difference between alithiamine and thiamax which was also recommended to me?
          I don’t have yeast as I worked wa naturopath before the pregnancy to clear out my system and it has not returned. I am not aware of infection. Wouldn’t that be visible on blood tests?

          • Hi Rachel, Thiamax is just a 100mg capsule of the same compound that is Allithiamine—Elliot Overton had a more potent capsule manufactured for those taking higher doses. Allithiamine is 50 mg per capsule. I am not aware of any other differences.

  4. What type of fat are you using? Maybe you have bought the idea that polyunsaturated “vegetable” oils are healthy? Maybe you are stuck in a torpor like a bear before winter…

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