Tag Archives: hypothyroid symptoms

Where is my left ovary?

No, it is not a joke! My left ovary really has gone missing! And I would like to know where it has disappeared to. Of course I have my suspicions as I told my daughter yesterday, when she was sitting in Basingstoke, ready to soon fly home. She claimed it must be MAGIC but I think it is more sinister than that…

Five years ago, I was diagnosed with Hypothyroid. In other words, my body has basically slowed down to a standstill. Nothing works the way it should. I was told that I must have been living with Hypothyroid and Hashimoto’s for years, but that did not really mean anything to me. What was more important, was to get that all vital medicine to feel alright, again. For the first time in over 20 years. I was put on Levaxin like the rest of Sweden’s 440 000 Hypothyroid sufferers, and waited for the feeling better part. I waited and waited and waited… And I am still waiting. Going from a size 34 in trousers to size 38. Not being able to wear wedding ring or engagement ring. Body full of fluid, not being able to lose weight when I eat practically nothing.

What is it like when your Levaxin does not work even though your blood work is just fine? Well, like I said above, you can’t lose weight, you are swollen, you lose hair, your skin goes superdry, your nails become superthin. You get brain fog, not remembering things you knew two seconds ago. You have anemia. Muscle pain. Problems with membranes. The list just goes on and on.

I can tell you what my life is like. I wake up every morning and can not breathe. So I use nose spray. Three times a day, since years back. On the bottle it says you must not use it for more than ten days! I wake up with a throbbing head ache, so I take aspirin. What that is doing to my stomach and my intestines, is something I do not dare to think about. And my body does not want to get out of bed. Because I am TIRED. My feet are swollen, my hands are swollen and I go in to the shower which makes me swell even more. After taking the children to school, I drive home and go to bed again. To sleep. Heaven forbid that anyone phones me, since I must sleep, to be able to cope during the afternoon, with three autistic sons. At 11:55 my alarm goes off to say that I must wake up and drive and fetch the youngest son. The afternoon is spent with them, in the living room, because I am too tired to go to a playground or anything else which is fun for them. Words go missing in the middle of a conversation, when I do talk to people at school, so I avoid human contact as much as possible, since it is embarrassing, to sound like one who has Alzheimer’s.

Christmas 2015 I went and saw a new doctor, which had been brought in to just get rid of the long queue, at the health clinic. All she wanted to talk about was the Roma beggars and how she had forced her man’s son to spend 14 days a month, in care, because she could not cope with his autism, and she thought I should do the same with my sons. Nothing came out of that appointment. Then I was handed over to the horrible Chinese doctor, they had permanently employed. They raved about him, but I was on a collision course with him, from moment one. In China the patients must be quiet and not have an opion. So after our phone call, I had created an enemy. Because he could not even take the time to meet me. He said my only problem was anemia. And for that, he had written a prescription of fluid iron. I refused to get it when the chemists told me that it would stain my teeth really bad. I tried to take iron pills instead, but as everyone with Hypothyroid knows, you already suffer from constipation, so the iron pills will only give you hell.

Two years later, I was so sick and tired of having symptoms like congested ear for three-six weeks, not being able to eat anything like everybody else does and of being so horribly tired. So I changed health clinic to one in town instead. But the doctor I was recommended there, was not available for ordinary patients, so I had to receive one whom they could spare. I went there and what was the result? She told me the following:

1. My weight gain must be caused by age.

2. My hair loss must be genetic even though noone in my family has suffered this.

3. My heavy menstruations must be a muscle knot in my uterus.

4. My fatigue is due to anemia which must be caused by the menstruations.

5. Brain fog, dry skin and bad nails must be caused by stress

6. Congested nose must be polyps in my nose.

7. My ear problems must be wax.

8. With three autistic children I should have been in therapy for the past ten years.

9. Perhaps I am just afraid of growing old?

She sent me to a dietician, whom has no idea what to suggest that I should eat, but I must eat more calories or I will die. The doctor pumped iron in to my veins, to get a quick result, but I am more tired than before! She said that she was going to prescribe something for my nose congestion, but when I went to the chemist, she had not. Nor had she written prescription for my migraine medicine NOR my Levaxin. And she sent me to a gynecologist.

In February, I walked in to the Women’s clinic. Nervous and scared and the waiting room was filled to the brink. All of them acute cases, but noone was called in. A nurse came out after 30 minutes and told them to go home. But this woman working on a laptop beside me, raised her voice and said “No way! I was here for five hours yesterday and then you told me to come back at 08:00 and I would get in at once. Now it is 10:30 and I am still sitting here and I am not moving. Is it better in Malmö?”. She was told no, and another woman said she had been there the day before as well, and had been told to come at 8:00. None of the women were budging. I was called in since I had an appointment. But I did not get called in at the appointed time!!! Swedish health care 2017!

In the room, I had to meet with a medical student, who asked me all sorts of humiliating questions. Nice to sit there and have to say “No, I am not on birth control. My husband has not touched me for three years. Among other things, he blames me for his sons’ autism!”. When she had asked her two sheets of questions, she went and fetched her teacher so I could repeat everything one more time. And then it was time for the dreaded CHAIR or should I say gurney with foot rests.

The student was going to put in that horrible metal instrument, but was not particularly light on her hand. It hurt! And then she and her teacher had to check things together. They were supposed to take a pap smear, while they were at it, and for the first time, THAT hurt REALLY bad. And then they discussed something awful they were seeing in there. My cervix was all scarred badly. At once, my mind travelled six years back. The loss of my little Serena. And the botch job of the surgeon! They could not understand why I looked like that and what was I supposed to say? Sorry I am shocking you down there! I am here, up here ladies, and you are scaring me! Upsetting me!

Then the metal tool came out and the vaginal exam started which almost had me screaming, since they pushed on my stomach as well and my stomach is horribly tender after three C-sections! First the student had to grope around and then the teacher to make sure what the student felt, was something she could also feel. Finally, the ultrasound stick was put up in to me and two things came out of that pain: My left ovary was missing somehow and they could not see my uterus well enough.

The Italian doctor/teacher from Bari. told me that if I had a muscle knot sitting in the uterus lining, then putting in an IUD would not take away the bleedings and she would have to perform a hysterectomy. I walked away severely depressed, knowing that now I was going to be sent to a specialist. I was told that this person would take a long needle and put it through my stomach and push in contrast fluid, so it could see where my muscle knot was sitting. Because the Bari doctor, was sure I had one.

Yesterday, I headed scared to the hospital again. My husband had nothing to say to me the first time I went, nor did he ask what the outcome was. Yesterday, he did not even know where I was going, even though it has been on the family white board for a week and the children having asked about it in his presence. Nor could he understand why I would be scared of going to the women’s clinic. He just does not care whether I live or die. Nice, is it not?

So, on trembling legs I headed to the ultrasound department and all these feelings flushed over me. I saw the doors to delivery, I saw the doors to the maternity ward and I just wanted to run. I did not want to be there. All the happy moments when I have held a lovely, soft little newborn baby in my arms, are all gone. All I see now is my big tummy, the words that my baby is dead, giving birth to her with Nurse “Ratched” helping out. And being rolled to surgery twice in 16 days, for scraping.

But I had to go up to the third floor, after paying 300 :-, and I had to sit there with all the happy big tummied mothers. And I had to go in there, to the German doctor, and once again have a student present. This time a muslim student (with hijab) who luckily did not go near my private parts. Medical students are to be avoided! Since the doctor was teaching and pointing out everything, the examination took a while. This time it was just the ultrasound stick going up my vagina. And it was painful like you would not believe it. I wanted to whine, but I doubt a German would have appreciated it. So I bit my tongue!

What were they doing this time? Pushing down on my belly, which hurts for above reasons, and pushing around that stick all over, searching for ovary and knots. There are NO KNOTS! But scarring inside the uterus, from among other things, the C-sections. So my doctor is going to have to come up with another reason for not letting me see an endocrinologist and receiving Liothyronine to treat my T3! But she could not find my left ovary and asked me if I had had any surgery to remove organs? In other words, had I had the ovary removed? I said no, but driving to the shopping mall afterwards, I could not help but going six years back in time.

Going to the midwife, happily, to listen to my baby’s heart and do blood tests. Her strange face when she could not find a heart beat anymore. Me driving home in record speed and tears running down my cheeks, trying to find the phone number to the women’s clinic. Crying on the phone and getting an appointment. The doctor looking at a baby on the ultrasound, whose heart was no longer beating, who just lay there still in my womb, like a big piece of lump. The pills they forced me to take and then the wait. Two days  later, showing up at the hospital to give birth to my baby, even though no contractions had started. And noone paying attention to that I was sitting there on a sofa, waiting for someone, anyone to help me.

In the storage room they put me, I was faced with nurse “Ratched”, who told me to knock it off and stop feeling silly about all this. She gave me more  pills, but the baby did not want to leave my body. So more pills, but up the vagina this time and then more pills orally. Finally the contractions starting and the pain so awful she had to give me morphine. And then, sitting on the toilet, having to deliver the baby in to a plastic dish, that was rushed out of the room. Nurse “Ratched” just telling me to be glad that I had seven children. I was not happy. I was crying and wanted to rip my hair out. I was not grateful for anything and just wanted to die. But things were not over. A German young doctor came in and tried to pull the placenta out, but only got pieces. So I was told I would have to have surgery. And Nurse “Ratched” came back and informed me that the baby was abnormal, so what was I fussing about.

That night, I was scraped and when I woke up from the anaesthesia, I was shaking the entire bed from being cold. I was reacting to the blood they were pumping in to me and I was vomiting. Could things get worse? Yes, they could. My husband kissing me on my forehead, when he saw me in the morning! Like I was some sort of dog. The final kiss! Could have done without it really, because it really was the final blow to our marriage. They asked us, if we wanted to see our baby girl, and I almost died when I heard it was a girl. Had she lived, I was going to have named her India Temperance Marguerite, but now, I decided Serena Rose because she looked so serene when I held her. I held her little cold hand in mine, which had been in prayer position in the dish, I touched her little cold face and I knew that she would have been a beautiful little girl, had she been allowed to live.

There was no skin covering her tummy, so I suspected that this was why she had died. But then I found out, at the autopsy weeks later, that there was nothing wrong with her at all. (Except my hypothyroid of course, which had killed her!) She had died and when a baby is in utero, the breaking down of the body goes quicker. That is why her tummy looked the way it did! And Nurse “Rached” had the gall to say what she did! She should have known this, but she just had to be cruel. I was sent home with my sorrow. A week later I was back with a high fever and very ill. The German doctor had done a sloppy job of the scraping and had left pieces in the uterus, so now I had a full-blown infection. There seemed to be no end to my afflictions. Scared, I layed in the ward for four days, before they had the time to deal with me.

Once again, I was rolled in to surgery, but this time the doctor was not on my side at all. This Swedish female doctor wanted to put in an IUD, while she was in there, because I was not going to have any more children. Her decision. I said no, that I wanted my eighth child! And she told me that seven children were more than enough. I was put under and when I woke up, I knew full well that she had done something to my body, to make sure I would never get pregnant again. I did not know what, but I suspected that she had caused damage on purpose. I just felt it like you feel other things that are real.

Once again, they tried to give me blood and once again, they had to stop because my reaction was too severe. I was so freezing cold and shaking the metal bed so bad,  it could be heard outside in the corridor. Did we try to have another baby after this? I was adamant that a little girl was missing in our family. I bought ovulation tests for thousands and forced my husband  to have sex when the test showed that I was fertile. I did manage to get pregnant two years later, but it only lasted for ten weeks and then I miscarried. The Levaxin was not working, there was no way I could carry a baby anymore. Especially thanks to all the scarring I have, which is something I got proof of yesterday and in February. And I guess it is remarkable that I got pregnant at all, in 2013, if one ovary also is missing. I guess I will never know, but my suspicions are that the doctor damaged it out of spite and then removed it so noone would know? Not recording it in the surgical report, like the first surgeon not writing one up at all, which is required. The team in the theatre must have known, but the doctor decides right? And a hospital does not want to be charged with misconduct!

I can live without an ovary. I am too old to get pregnant anyway and it is impossible to do so when you are living in a completely celibate marriage. But I would have liked an official apology for the hell I was put through in 2011 when I lost my baby Serena. I should not have lost her at all. They should have checked my hormone levels at the midwives, like they do today. And I should have been met with compassion and professionalism at the hospital, when I arrived there as a grieving mother. It does not matter how many children you have already. What matters is how you feel about the pregnancy and the expected baby. They saw that I was grieving and they should have made life easier for me. I will never get over the trauma and today I know what sort of internal damage they did to me, as well as taking a punch at my psyche. And where is my ovary?

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Is there any comfort to be had?: #LIGHTtheWORLD

1 December 2016:

The brown cabbage smell surrounded me, as I climbed out of my car, by ICA supermarket this morning. That smell is what I associate with Christmas, with particularly my childhood Christmases, since then everything was made from scratch. And Christmas Eve morning meant brown cabbage smell, one of the most traditional things to eat, in Southern Sweden. Can’t stand it myself, but the smell is divine!

This morning was a stressful one, since nothing worked the way it should have. But in the middle of this, my two youngest boys were exalted. We turned the leaf on the calendar, and the picture for this month appeared. December has finally arrived, not a day too soon, for the boys, and not only “Tomten” (Santa/Father Christmas) are watching us on the photo, but our beloved D., serving a mission for our church at present, in Wales! The boys wanted to open their chocolate advent calendars of course and I was happy to not have to have that discussion in the middle of the chaos, since their father has hidden the calendars and I know not where. But they did get to open the “Mamma Mu” calendar I purchased for this year, since she is a favourite of mine. (If you have not met her, you must look her up. A very unusual cow, who refuses to behave the way she is expected to. Always informed of her wrong ways, by her close friend “Kråkan”, a funny crow.) We did not have time to read the little book, which was found behind 1 December. Something to do, later on this rain-filled day.

Mamma Mu and Kråkan organizing Chrismas. Can it get more Swedish than this? Hardly!

Mamma Mu and Kråkan organizing Chrismas. Can it get more Swedish than this? Hardly!

Yesterday, I visited my new doctor. I have been so disappointed with the medical and health care establishment, that I have not had a blood test for two years and I have refused to go see the Chinese doctor, my health clinic assigned me, against my will. Not a good thing to not go and see a doctor or take your blood tests, when you have Hypothyroid and Hashimoto’s. But if noone listens to you, what is the point? During the summer, I changed health clinic, since I refuse to ever have anything more to do with the Chinese man, who thinks he is God. But, I still did not do anything about all my troubles. I don’t have the energy and I wanted to write down all my woes and send them in advance, before I saw a doctor, since they do not have the time to listen to you. But I never got the energy to write that letter either! That is what it is like to have these diseases! You are TIRED! But, Friday, I walked in to the health clinic in town and after failing to get any blood out of my left arm, they drained the other arm. At least that is how I reacted when I stood up and had to sit down again, from the blood loss.

And then I met with my doctor, yesterday. Don’t know what to say really. She does not want to see my symptoms as caused by the thyroid diseases. What is causing my constant anemia then? I am to have three to four iron injections via IV. She thinks that this will magically make me more energetic. And she is sending me to a gynecologist to see why I have heavy menstruations. Right! I have had that since I was 12! She is sending me to a dietician, to get help with what I can eat, since my lack of gallbladder and still having gall attacks after certain foods, has me at a loss as to what to eat. So I do not eat a whole lot. Who wants to be in excruciating pain after they have had a meal? Not me! The weight gain, which happens when your hypothyroid medicine does not take away the symptoms of your disease, is according to her, to be blamed on my age. The hair loss, to be blamed on genes. Although noone else in my family have had the problem! The dry skin and soft nails, are blamed on stress. So is the loss of words and loss of sleep at night. She feels I need a holiday. Haha, is my answer to that. So, I feel depressed after seeing her, another symptom by the way. And I did not even get to tell her all the other symptoms which are sad or depressing to live with. And in the middle of this, I have promised to take on the challenge of not just thinking about myself this December, but to spread the light, like Jesus of Nazareth did. (Boy I hate using that name for him! The older I get, the more I feel it is wrong. I would not want anyone to distort my name in another language, or change it to something else, to cut off the roots from where I come from!)

Mormon.org suggested that one could spread a video, on social media. Or pray in order to see the needy. Can’t remember the third, thanks to my hypothyroid! Oh wait, no according to my stress level. There was a long list, under the three simplest suggestions, and I decided to choose a challenge, which I actually CAN do. But, there is always a risk of alienating people and readers, by mentioning the forbidden words: faith, hope, prayer. Especially in the country I live in. Taboo! But, I have promised to do this, so here goes. I will share a story, which in a way, I do not want to share, but I am doing it, to give comfort to others, and for my children to read one day:

In 2008, I was once again delighted to find out that I was pregnant. It was the third time, we tried to have another daughter, me feeling that a daughter was missing in our family. As usual the morning sickness was overwhelming, lasting all day and night. But the hope, for another little being joining our family, made every suffering worth it. And the thought of finally receiving that longed for daughter, also made everything bearable, because I was SURE this time, that it was a girl.

Time went so slowly though. I could hardly wait till week 17 of the pregnancy to come about, when we would finally have confirmation of our hopes, dreams and intuition.  But week 17 finally came around, and like all expectant mothers in Sweden, I went to my ultra sound. We did not have any babysitter available, so D. and E. had to do their best in the waiting room, looking after F., “Kitty” and “Boo”. My husband and I walked in, I laid down on the bed and the midwife started her examination. Soon it would be revealed, the gender of my baby, if the baby was cooperative, showing the stuff. The midwife, finding out that we had four boys and only two girls, said “Well, then it is time for a girl now, isn’t it?”.

And then we saw a little penis! My heart sank, my husband squeezed my hand, and I wanted to cry. But soon, I realized that the midwife had got a very serious look on her face. She was not the happy person anymore, that she had been when we arrived. She asked me why I had not had an amnio done. And I answered “No matter what, I could never kill my baby, so why would I have an amnio done? Risking a miscarriage for what?” She stayed silent after that and then she finally said something: “There is something wrong with his kidney! It is way too big.” She showed us, what she was looking at, and the right kidney was huge compared to the little speck of the other one.

We walked out numb, from the room. Pictures of the baby in the hand, where you could see both penis but also the big abnormal kidney. When I saw my children, they started running towards me, and I guess I looked very happy, when I saw them, because my oldest daughter and D. blurted out: “So it is a baby sister!”. I hugged them all at the same time, feeling so happy over having them and being their mother. I cried and said “No, it is a boy. And he might not live to be born!” Because those were the first news we received. That, and the fact that I needed to come back, to see an expert.

Every two weeks, for the rest of my pregnancy, I had to go to the ultra sound department, in order for them to look at my baby boy and measure his right kidney. There was talk of him not living till birth. There was talk of him having to come out early so that they could operate on him or just to save his life. There was talk of putting a pipe in through my back, through my womb and in to his kidney, so it could be drained of fluid. Every doctor, being silent while examining his kidney via my growing belly. Me laying there on the bed, vulnerable and scared. And then trying to pump the doctor for information, wanting the worse possible scenario, in order to be prepared.

I can not remember a lot of what else went on during that pregnancy, since his well-being was constantly on my mind. I felt sick to my stomach, every time I entered the building for the ultra sound and I did not feel much better coming out. And then, in the middle of the summer, about a month and a half, before I was to give birth to him via C-section, I decided to pray. I did not pray for my son to live. No, I knew better than that. I prayed for the courage to face everything which lay ahead of me. I prayed for strength to accept what was to come. But most of all, I prayed for being able to stop worrying about matters which I could not do anything about. When I prayed in this manner, I finally felt a calm come over me. There was finally peace in my mind. I knew that there was nothing I could do, except get through my pregnancy.

The baby was pressing all my intestines and stomach upwards and every week, I was in and out of the hospital with gall stone attacks. They could not give me anything for the excruciating pain, because of the baby. I have never been good with pain and I was scared, but somehow, my thoughts were always with him. My little fighter in there. We called him “Sparky” after Captain Speirs, 101st Airborne, Easy Company, because he was totally “wild” in my belly and because he reacted to everything, noise, light, music, touch… We bonded he and I , in a way that I have not bonded with any of my other children, in utero. We got through it together, he and I. Both fighting for our survival. And somehow, after my sincere prayer, I knew that I would hold him one day. I could even feel his personality. That he would be the sweetest little angel, loved by everyone for his sweet disposition.

How did it all end? You really want me to tell you?

He was taken out by C-section, 14 days before time, because the strain on my gallbladder was too much and they needed to see what was going on with his kidney. As soon as he was born, he was put on medication, so he would not get an infection in the right kidney. Two months later, after lots of painful tests, he had to have surgery. But the surgery was not a success. He was born with an extra blood vein, which supplies the lower part of the kidney, with blood. So the surgeon could not perform the surgery, the way she usually did, but had to put together an emergency solution. And then they overdosed him on paracetamol and there was an infection, which they think ruined the kidney. BUT today he is a happy little boy, who is in no pain at all, even though his left kidney is doing 87% of all the work, and thereby has grown abnormally large. And his right kidney, which is doing 13% of the job, can not empty properly, so it is as big as the left one.

In 2014, this sweet little angel of mine, was diagnosed with autism and severe language disorder. But I have never REALLY worried about him, since that day I prayed about him and my worries. I have accepted one thing after the next concerning him, with the attitude, one day at a time. Every thing which he has accomplished so far, has been a plus in my book and has made me happier than happy. He is a happy, loving boy, who learns things every day. And to be honest, I do not really think about his sick kidney anymore, since the autism overshadows everything. But even there, I can feel that autism is not the end of the world, when it comes to him at least. You have never ever met a more loving, sweet boy than my “Gubby”. Yes, a child which always needs help, a child with a hundred questions, a child which has a very short memory, but a child I would not want to live without, for anything. His real name (I protect my children in social media, from being exposed) which I chose for him, means LOVED. And loved he is, by everyone who meets him.

(Yesterday, they had a Christmas Theme day at his school and they got to make a lot of ornaments, a ginger bread village and dance around the Christmas tree. His personal assistant has started to send me photos of what he does in school, since his memory is so short that I can not ask him “What did you do in school today?” and expect an answer. Instead he says “Never mind that!”. Because he does not have the language nor the memory for certain things. But the photos help him to explain and triggers the memory! I wish I could have shared them here, but I want to protect him. I will share one thing he made though!

Traditional Swedish Christmas ornaments: "Oh, Gubby, what a nice looking orange!" (Usually the cloves are put all over the orange but my son prefered a line, obviously!) - The sticks really hurt! "What? Sticks?" commented brother "Kitty". - Yes, they really hurt my fingers! Poor "Gubby", and yet he did his best to make pretty ornaments like everyone else at the school. My little perfectionist! (See tomorrow's post!)

Traditional Swedish Christmas ornaments: “Oh, Gubby, what a nice looking orange!” (Usually the cloves are put all over the orange, but my son prefered a line, obviously!) -The sticks really hurt! “What? Sticks?” commented brother ‘Kitty’. – Yes, they really hurt my fingers! Poor “Gubby”, and yet he did his best to make pretty ornaments like everyone else at the school. My little perfectionist! (See tomorrow’s post!)

 

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