Hashimoto Diary Part 6: Sports and a medical marathon beyond compare

A Lot of Sports and Worsening Health Condition

The year 2013 was a very difficult year, which was getting much more worse by the end of the year.

I rejected the HPU thing for now and took care of the other issues. I experimented with the thyroid hormones the entire year, but I did not really come to a green branch.

I even increased my Euthyrox up to 225μg, but without much or lasting success. After the increase, I always felt much better, but after 2-3 weeks, I was tired and broken again.

During this time I did a lot of sports, although I did not really have any strength, but somehow I felt better. At first, I started with riding racing bicycle and after a couple of weeks I was able to complete 50-60 km with a pretty good pace, but my body weight increased constantly and also my body fat percentage increased rapidly, which was very abstruse. In August I started running ….. I thought I was dying.

Although I did not have a bad condition, I did not even manage to do 800 meters jogging. But since I’m really ambitious, I’ve made it within a few weeks to 10 km.

A new approach and the hope for  an improvement

At the middle of the year, I met an ambitious user in the forum, with whose help we have made a few experiments. The aim was to calculate the hormone consumption and try to do a clever splitting of the hormones with several people and to document it in my forum.

After many different combinations, I also found a combination that worked quite good. 50 Euthyrox + 2.5 Thybon in the morning – 5 Thybon at noon and 50 Euthyrox + 2.5 Thybon in the evening. I really thought … wow … from here we go uphill and we all thought we had found the key to well-being. But it would have been too good to be true that this condition would last for long.

Slowly it became clear to me that not the thyroid gland alone was the cause for my massive problems, but apart from an adrenal gland weakness, which nobody wanted to treat, nothing was clear yet.

My condition is getting more and more serious!

At the end of the year something very weird happens. After an infection, I did not recover properly and had breathing problems. It was a bit hard to breath, It is difficult to explain, but it felt like if only half the lung volume was available. In between, I also got very strange circulatory problems and a very low pulse of around 40-45 beats / minute. In addition, I have got a massive digestive discomfort and a bloated belly. And all of a sudden, I could barely tolerate any food without having massive problems.

No matter what I ate, there was a reaction within 30 minutes and I was knocked out. The symptoms were always a pulse drop to down to about 40 beats / minute, I was feeling so cold, even with a jogging suit on and two blankets in bed I was shaking. I was dizzy, my sight was blurry and I had big problems on focusing things.

In addition to that an incredible fatigue and weakness after every meal … no matter what i ate. And on top of that, a awful constipation had set in the meantime, which can hardly be described with words.

Even laxatives hardly worked. Also, something was wrong with the stool. It became lighter and lighter in colour, so that it was almost white! That made me really worried. Especially because no correlation was apparent. It is impossible that suddenly I should have problems with histamine, lactose, fructose, carbohydrates and actually everything. Isn’t it?

Finally it escalated.

5 days after the birth of our second daughter my breathing problems got more and more serious. Nevertheless, I continued with running, but when I came back, I was not feeling well. My head became numb, my breathing became even more hard and it was as if something really serious had happened and my final hour has struck.

From here I was a permanent guest in the emergency room, was checked from top to bottom, but nothing was to be found. It was terrible. I could not move from the couch for at least a week, because I was so dizzy and I felt like a 90 years old. And no one could help me, what was almost worse than anything else.

I even thought I might have had a stroke or something similar … what fortunately was not confirmed.

From here on, the big, long medical odyssey started again.

The biggest problem at that time was that my wife had to keep things running alone with our 5-days-old baby, while I remained in the hospital. This situation almost killed me and can not be put into words.

From this situation I decided, that if I would survive this, I would give up my business after almost 10 years, and have to come up with something else. But more on that later.

From now on, it was time to run from doctor to doctor still hoping that finally anything could be found that could be treated. Since my shortness of breath was really worrying, this was my first priority. My family doctor first prescribed an asthma spray for me to see if it provides any relief. 

But that made it worse, so get away with it. Then he prescribed me a cortisone powder. Just without any further examinations, throat swab or similar. Retrospectively, now I realize how negligent everything went, but at that time I was glad if they just tried anything.

Digestive problems, low pulse … what is going on ???

However, the cortisone did not help and so I went to do some x-ray of the lungs, to exclude a hidden pneumonia or anything like that. Again, everything was fine, so I had to live with my complaints or respectively try to survive, because my condition worsened daily.

The pulse dropped in dimensions, which were terrifying, my level of energy was almost zero, the constipation was getting worse, too,  and my stool was getting lighter and lighter in colour. On top of that, I had a really massive dizziness, numbness in my head, neverending fatigue, etc. Moreover, I always had massive nausea that sometimes lasted up to 2 hours and then suddenly disappeared.

Into the emergency room again

Meanwhile my condition got so serious again, that I once more ended up in the emergency room of my favourite hospital, where I already have left my appendix, my thyroid gland and a kidney stone during the last few years.

There blood was drawn again, intercepted, sampled and the usual tests made …. nothing was found, of course. However, the doctor offered me an inpatient admission to the hospital, so that they could check me from head to toe within the next few days. I gladly accepted. The next morning we started… sputum sample, urine sample, stool sample, blood sample, re-x-ray of the lungs, ECG and so on.

The results took their time, but came back on the second day. However, it was just the blood levels and a few urine levels. On my request what was with the sputum, which was very important for me, since the problems occurred after an infection and I had suspected bacteria or anything like that, I got only a shrug.

It turned out later, that the stool and sputum samples were disposed, as the chief physician had the meaning, despite the order of the senior physician, it would not be necessary! Really ??? For that I curse it to be privately insured and treated by these nine-wise, but totally ignorant professors, who have nothing better to do than to profile themselves in front of their employees.

During that time my health condition continued to get worse and worse and I woke up every morning in the hospital with very strong nausea, I sat about 1 1/2 hours on the edge of my bed and was about to vomit. But the doctors are not very interested in this and so they simply ignored it.

The worst hospital stay ever!

In order to prevent boredom, at the third night of my hospital stay, the other guy who shared the room with me, died in his bed! This sight was cruel and the totally uncoordinated attempts of the night nurses and consorts to revive the man and help him, were just bumbling and totally unprofessional.

About doctors and hospitals… meanwhile I could easily write a book, what I perhaps just should do…. it would probably be an absolute bestseller! Anyway, there was no reason for me to stay in the hospital any longer and so, in this miserable state I was almost kicked out, with the reference of an aborted infection, that should get better during the next weeks and months.

After leaving the hospital, I was so weak that I first sat outside on the curb for about an hour to get some energy for my way home. At that moment I realized that I had basically lost and probably nobody could help me. If I had a huge tumor or a broken leg, the hospital probably would be the right place, but my complaints were a sealed book for the doctors, and there could have been done a lot more for my problems with the digestive tract.

It is time to say thank you

In the following days, I tried to catch my breath and continue my research. At this point I would like to thank the great community in my Hashimoto Forum (www.Hashimoto-Forum.de), which I founded in early 2014, for an exchange with those affected. Everyone there tried to help me, to bring me to new ideas what should be clarified, etc. And also there, I finally found help, but more on that later.

By the way, there is a detailed diary of me and other stakeholders, where I have reported every day, even at the time when all the crap was finally launched here.

Since I had not let go of the idea of ​​the infection, after which everything really began, I have my Endocrinologist and also the family doctor set out to look for viruses and bacteria in my blood. There were multi-page blood values and there it showed up already that I was on the way to an anemia. Unfortunately, I did not know my blood levels properly at that time, and I was also focused on the viruses and bacteria.

The medical marathon is really going on now

And the doctors have not found anything anyway … as always. Luckily, apart from the liver values, which had been high for years, everything was alright. Except Yersinia and Chlamydia pneumoniae levels were slightly elevated. Since the chlamydia in the lungs are up to mischief, I thought that’s it! And I quickly made an appointment with the reputed best lung specialist in town, who was also located directly at the hospital.

This man seemed very competent to met. He calmed me down first and said that we will solve the problem in any case. However, he had not even half of the tests done, that initially were ​​discussed and handed me even less values. Only as I asked again and insisted on getting the rest of them, he handed them out … for whatever reason.

Again, I was dismissed and had no results … everything was ok. His words were only sound and smoke, and two days later I had a bill of 1600 $ in my mailbox, for laboratory and fee! I guess you begin to realize, why I write so badly about doctors. But I do not know any other people who earn so much money with such a negligent, incompetent behavior, as those demi-gods in white!

The money I have left with doctors, since the beginning of my complaints in 2008, i easily crossed the 300.000 $ border long time ago, and my health condition still goes worse. Something definitely goes wrong here, doesn’t it?

Meanwhile i had lost 24 kilos within 2 months !!! Since I could not eat or tolerate anything …. so the situation was more than serious.

Emergency Room again and again

In the meantime, my situation became so serious that I ended up in the emergency room again…. but this time consciously in another hospital. There I met a young Spanish doctor who was supposed to steer me in the right direction. At first I was checked from head to toe, as usual, then I had to wait for a few hours in a narrow room without windows, for the results of my check up.

When the doc came in and told me that all the results were very good and my blood levels were much better than his, I thought i would die. Nothing, again! That just impossible!

I feel like almost dead, while all my values say that I am in great shape?!?! When we talked about my situation again, because I could no longer suppress my tears, he once again reflected all about the results and what i told him, then again inspected my stomach a little closer, because I also told him about my almost white stool colour.

After an ultrasound, he was a little scared and just said that he had never seen such a bloated intestine. He told me to go to see a gastroenterologist. The problem probably might be there. Wow! …. a little spark of hope was back.

On his recommendation, I directly made an appointment with the gastroenterologist in the same building. But unfortunately ,as a private insured i needed to have an audition with the professor first. He was not much interested in my problems, but he wanted to have a look  and arranged a colonoscopy and a gastroscopy. Finally anything happened.

It has to be related to the intestine

When I started with the bowel cleansing for the colonoscopy a few days later, I spontaneous felt better. Not surprising if you have such stubborn constipations. During the colonoscopy, a polyp was discovered in the intestine, which was very small and could be removed directly. And it had turned out later that it was harmless. The appointment with the professor was scheduled for two days later, but then something really strange happened.

When i was getting fitter after the anesthesia and my brother brought me home, I felt better than I’ve ever done in years! I was symptom-free !!! I was in a good mood, I was in top form, I could breathe well and I just felt good. However, this condition was completely over on the following day. But something had to be with the gut … that could not be a coincidence.

When I spoke to the professor, he told me that everything would be fine. No celiac disease, no Helicobacter, nothing … except the polyps, but that is already done now. But in a stool sample he would have noticed that my pancreatic elastase level would be very low. Normal values ​​start from 200 and I had only barely 100 … that would mean I have a pancreatic insufficiency.

But that could also be a measurement error, because it would be atypical for such a young guy like me, that the level would be so low. But in any case it would be the explanation for my bowel problems and maybe also for the light colour of my faeces. Maybe only a bile duct is blocked.

Allegedly no food intolerance

Thus, I should submit a stool sample again and that’s it. But I did not want to be put off and dug deeper, if it might be some food intolerance. Annoyed and reluctant he did a lactose and glucose breath test and in addition, an ultrasound of the bile ducts should be done.

WHY !!!! do i have to inquire, ask and beg first, until getting perceived and finally properly examined ???

During this time I had a very bad week until the ultrasound date. Thoughts of cancer were constantly buzzing through my head. What if it really is a pancreatic tumor? Once again, my life passed by and I felt so lonely,  you can not really imagine.

The upcoming lactose breath test was negative, but I had massive symptoms during the 2 hour test and almost fell off the chair. But … the test probably does not lie 😉 But more on that later, because at the end of 2014 in relation to to this, something interesting was found out. The glucose test was also negative, of course, although there were decent symptoms … but what do I know.

Only in the ultrasound a lot of polyps were found in the bile bladder, but apparently nothing should block the bile duct and the bile should be able to flow … so no reason to worry … just check it every 6 months and that’s it, the doctor said.

When I had another appointment with the professor again, he grinned maliciously and said only: “I told you that there are no food intolerances!” …. if he was so sure, he could certainly read from his glass ball, what else would be my problem, but of course that was a nil.

The second stool sample confirmed the low elastase and I should try Kreon. Pancreatic enzymes for better fat digestion. I did, but without any significant improvement, which is why I quit the intake at the end of the year.

Image source:

  • my-story-part6: © Ghazi-Michael Ayed