Initially, when I went to see the functional doctor, she said she would treat the Hashimoto’s aggressively with hormone replacement and supplements, she had said she was strong on supplements. I ended up taking 19 different supplements a day, in quite large doses. This functional doctor was also an NHS GP, I say this so you understand that this was a bona fide professional giving this advice. I had to take this as well as Levothyroxine. It must have been a shock to my system as within a few weeks I developed itchy skin that became a head to toe rash.
My skin became so unbearable, I decided to stop everything. I hadn’t had this before I went on the meds and supplements so I presumed there was a link. My skin calmed down immediately, but I was advised to try again, this time my knees swelled up so badly, I couldn’t walk or bend them. The swelling was so bad, I couldn’t fit my legs under the steering wheel so I couldn’t drive! My integrative GP thought that this was more to do with RA than Levothyroxine, but, as the RA symptoms only showed themselves when I injured a joint, I knew I was not prone to out of the blue joint reactions, there was always a reason. Once again, I came off Levothyroxine and my skin and joints calmed down.
Read more about my Hashimoto’s Thyroiditis journey, advice, top tips and what I’ve learned, HERE
I thought, as the urticaria seemed to start following thyroid treatment, there was a link between Hashimotos and urticaria, however, I also knew I needed to protect my thyroid gland whilst trying to find out the root cause, and with the autoimmune type of underactive thyroid (hypothyroidism), my thyroid gland was under attack by my body. In the end I found a doctor who could treat the Hashimoto’s naturally and gently but unfortunately going on Armour Thyroid didn’t result in a miracle solution for the urticaria.
My own challenge with urticaria has been the most difficult health issue I’ve had to deal with yet. When you have joint pain, whether it is in one area or several, you can rest, take pain killers for immediate relief, amend diet, elevate and ice swollen joints and do all manner of things to see some improvement, even just for a few hours. You can gain some relief and feel like you’re in control. With urticaria however, there was simply little relief. Anti-histamines worked for precisely 2 weeks and then the urticaria appeared again and although it wasn’t as bad, it was still unbearable. But it was the word anti-histamine that led me on my healing journey. I hadn’t even thought of what it meant, those little pills were blocking the release of histamine, and therefore I had too much histamine in my body. The question was, how to lower the levels back down to the normal amount.
Urticaria began to control my life. I was covered from head to toe, even in between my toes! My lips and eyes would swell, almost closed at times. The hot red lumps and hard flat ‘plaques’ that looked like islands, scattered across my body, were not just unbearably itchy, they were painful. At times it felt like my skin had been burned, the feeling was deep and agony at times. I would scratch hard, until my skin bled and bruises appeared. As a relief from scratching, I would just press my nails into an area and hold tight which provided a bit of relief and stopped damage to my skin. I’d dry some towels that had a waffle-like texture, naturally so they were rougher than those that came out of the tumble dryer, and I’d use those to rub all over my thighs, legs, arms, chest, neck and face. It woke me in the night and stopped my from sleeping normally and if I fell to sleep, in the mornings I’d awake to the familiar tingling and heat building up on my body, the warning sign it was going to start all over again. It was lockdown and I worked from home, mainly in PJ’s as I couldn’t bear the pressure of clothes on my skin. When things opened up a bit, I couldn’t go out, it took every last pleasure I had left out of my life. It went on day after day, week after week, for months and months and months. I eventually would go to bed wishing to never wake up. And when I did, my personal Groundhog Day, would begin all over again.
All my doctor could offer were a few alternative anti-histamines, most of which only took the edge off my condition though coming off them made things worse so I had to keep using them. The next thing the offered were steroids, and although I knew the relief would be short-lived, I was at my wits end and desperate, so I reluctantly went on them. And, yes, they gave me a break from the dreadful cycle I was in, but it was only a matter of weeks when it would return with a vengeance.
Throughout the pandemic I went on steroids to calm the skin down, several times. I only went on them when I simply couldn’t stand it any longer and my body was 90% covered with face, eyes and lips swollen where most people I know, wouldn’t recognise me. The Covid vaccines and booster have resulted in massive reactions in my skin and afterwards I have, once again, had to reluctantly, go on steroids.
During what I would easily call one of the most challenging periods of my life, I would always go back to my research. It calmed me down, it made me feel like I was in control and essentially, it gave me hope. The more I researched, the deeper my understanding, despite there being few books on the subject, and very few experts on histamine intolerance out there. I actually learned a lot from sufferers of the condition who had taken to the internet to spread their knowledge. Even some of the books I read were self-published, again, those living the nightmare taking things into their own hands and then sharing their protocols, highs, lows and successes.
I found this interesting article https://thyroidpharmacist.com/articles/the-common-root-cause-of-hashimotos-hives-and-ibs/ on the link between urticaria and Hashimotos with the bug Blastocystis hominis. Based on this I doubled my dose of S.Boulaardi just in case. I did a stool test and was surprised to find out I didn’t have this bug so I went back to the drawing board or should I say, Google! Many urticaria sufferers with this bacteria and have rid themselves of it, have got their condition into remission so it’s a process of elimination, it’s worth seeing if you are one of those people.
Further research on hives and came across a blog on Patrick Holford’s website https://www.patrickholford.com/advice/relieve-rashes-and-hives/ and took his supplement advice for suppressing and detoxing from histamine so, whilst you are searching for a treatment to control your condition, it is certainly worth trying this renowned nutritionist’s recommendations.
Further research led me to the hormonal link, and not just the thyroid hormone connection. In 2021, I decided to go on natural HRT as I read an article of someone whose hormone imbalance resulted in chronic urticaria. Once they had their hormones in balance, their skin calmed down. OK, could this be the missing link? I was very excited and convinced this was my ‘cure’. I found the Online Menopause Clinic and felt comfortable with their approach so, despite not having any menopausal symptoms, and being classed as post-menopausal, I started on natural, bio-identical HRT in July 2021. After now being on natural HRT for over a year, I have to accept that it has not improved the urticaria for me. My HRT doctor has said that autoimmune conditions can be supported with HRT, despite the cost and the lack of support for the urticaria, I am sticking with them for now. I don’t feel like I need any more health issues by making these pesky autoimmune conditions get worse by coming off them!
It was during my research on the connection between urticaria and the menopause that I watched a video, an interview with a doctor who ran another menopause clinic who discussed the possible link and she mentioned other protocols to consider. Diet being one of them and she mentioned a supplement which I felt I was vaguely familiar with. More about that later!
I had already been experimenting with a low histamine diet without much success. There were many lists of low histamine foods, high histamine foods, those that block the production of histamine and those that trigger the release of histamine! So 4 lists that varied so much depending which blogger or doctor you were following. Then I read some pertinent advice – you will find many differing opinions and food lists, so find one that resonates and stick to it! And that I did!
I decided to follow Dr Becky Campbell’s protocol, I bought her book.
It’s a lovely book – nice recipes with photos which always helps, it has a really good introduction to histamine, common causes with a 4 phase reset plan with meal planner (although a bit repetitive) and recipes. It’s nicely written and presented in an easy to understand way which is helpful as this histamine thing can be very confusing. She also has a great website https://drbeckycampbell.com/histamine-issues/
Most of the information in the books is about histamine intolerance and whilst I don’t think I’ve got a life-long histamine intolerance like some people, I’m currently over loaded probably due to a reduction in the production of DAO enzyme (which breaks down histamine) due to my gut issues (that have led to RA, Hashimoto’s and now urticaria!) that I think may have resulted from too much chaos, stress and antibiotics as a child and increased inflammation as a result.
All foods have some level of histamine, the trick is to lower your levels so your body can cope. The visual of the overflowing bucket is used, empty the bucket and the symptoms subside. The book advises to remove some delicious and healthy things from the diet such as spinach, tomatoes, avocado, aubergine, fermented products (yogurt, cheese, sauerkraut, kefir, kimchi), nuts, gluten, yeast, smoked/processed meats or fish, citrus, strawberries, banana, raspberries, pineapple, chocolate, black/green tea, alcohol, ready meals, reheated food/leftovers (as when bacteria grows, so do histamine levels).
Interestingly my intolerance testing didn’t show a reaction to any of the high histamine foods so this not a food intolerance, it’s more of an issue with my body struggling to deal with histamine probably do to a lack of that enzyme, DAO which is probably related to gut dysbiosis.
So back to that menopause doctor interview and the supplement she mentioned namely Toxaprevent. When she said the name, it felt familiar and I looked over at a shelf in my study and there was a box of Toxaprevent! Talk about serendipity! OK it was a little old and I remember my husband had gone to see a holistic doctor when he was in Germany and this was one of the supplements he was given. At the time, due to language difference, we didn’t know what it was for and the box was all in German too. He eventually felt better and stopped taking it but the stocks were left on the shelf. And a few years later, they were still in date I did a bit of research and found this was part of a group of supplements called binders, charcoal being one of them, fulvic acid another. They bind with a particular toxin and they are eliminated in the normal way via stools. I discovered the company are UK based and actually now produced a specific products for histamine intolerance! Before I spent even more money on this new product, I decided to try the ones I already had although I accepted their potency would be less due to their age. Low and behold, in a matter of days, I noticed a difference. I continued taking them and then reordered the proper pack from Nouuveau Healthcare – https://nouveauhealthcare.com/products/histamine-intolerance-health-pack do read their website, it’s so informative as are their knowledgeable product experts.
Clear skin didn’t happen overnight and I had to work hard at the low-histamine diet. This meant I rarely socialised and ate out, but my skin was so uncomfortable and the weird swelling on my face (one eye, half a lip, one side of my face, Frankenstein brows – rarely symmetrical and always unpredictable) meant that I wasn’t feeling like eating out and having fun. The only thing on my agenda was clear skin. I achieved that in a matter of weeks but the Covid booster sparked things off again and this time it took almost a year to get on top of things and I had to be super strict with diet, so much so it was repetitive and certainly not balanced. But once again I did it. Their company helpline was a amazing. They gave me hope when I felt all was lost, they kept me believing it the power of Toxaprevent and they suggested different protocols and ways of taking it to improve it’s performance and it worked!
I’d say this is the best product out there for histamine intolerance. So much better than any DAO enzyme that I have taken – those didn’t help me but it wasn’t just a fit of sneezing after eating sea food or a flushing of my cheeks after a glass of red that I was trying to solve. Chronic urticaria is a severe and debilitating condition. Although Toxaprevent is helping to keep my histamine levels normal, it does not get to the root cause of this autoimmune condition – that’s more related to the emotional – read more on the Vagus Nerve and past trauma and autoimmune conditions here.