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The story

  

   

 

 

What I write here is not a neutral text, telling only about results and analyses. It is a text with my/our personal thoughts and subjective/personal experience mixed with blood and tears. 

It is a very long story. For me it is a relief to write it all down with all horrible details. I write it in English because I have friends abroad who asked me to do so.

 

                                     TSH

November 2000              1,52

January 2002                 0,10

February 2002               0,02

 _________________________________

 

March 2002                   0,009    High thyroid levels. TRAK: 11,4  (considered as high)

        

 

TRAK = TSH-receptor antikroppar. This is the Swedish way of saying TSI      =

TSI  =   thyroid stimulating immunoglobulins (English way of saying TRAK)(antibodies)

To have TRAK / TSI  antibodies = to have the illness Graves/Basedow

  

B i o p s y  (2002)

Biopsy which was done because of: "TSH 0,009, TPO 0,4, Trak 11,4    Thyroidit?"

"No high level of lymphocyte process but that, what can be seen, could be a rest of inflammatory process for ex  a thyroid of type Hashitoxicose. That would explain the laboratory profile which indicates a hyperthyreos. These Hashitoxicoses usually turn back and become a manifest subclinical/clinical hypothyreos."

The toxicose disappeared by itself after a while.

These high levels and this biopsy are not mentioned in the medical reports of KS. The professor was informed about it at the first appointment and has also got actual documents sent to him.

 ______________________________________

 

 

June 2003        TSH 0,014

Sept 2003         TSH 1,3

May 2004          TSH 0,66

Nov 2004          TSH 1,0

 ________________________________

 

March 2005       TSH 0,02                   fT3 7,1*           fT4    21*    (no ref but "high levels")

A scintigraphy was done at Radiumhemmet, KS     Very much text, I try to resume what the doctor says. Please observe that it is my own English translation from Swedish:

Unwaitedly there is a very low uptake of 3 % and this indicates either a thyreoidit or a blockation of yod. TC-scint shows a normally big thyreoidea at normal place and a small indication of increased activity on the right side compared to the left side. No signs of hyper functioning nodulus. I ask the patient of possibility of having taken yod but the anser is no.

I don't see any signs of a thyreoidit and when palping the thyroid, it is quite soft and not painful-. It corresponds exactly to what was found on the scintigraphy. So there is no explanation to the low uptake of yod. She does not take levothyronin. -

 

Picture of the scintigraphy can be seen under "Skint/Foton"

The doctors thought she might have taken yod by mistake. Or was it a thyreoidit? They did not know. 

The thyreoidit, or whatever it was, disappeared by itself after a while. 

These high levels and the scintigraphy have not been mentioned in the medical reports of KS. But it must have been there somewhere, because the picture of the scintigraphy and the report were sent to Bath autumn 2017 (12 years after) Who sent it, we don't know. Perhaps someone who did not like the way the professor "cared" about his patients. 

___________________________________________________ 

 

May 2005         TSH 0,11

Feb 2006         TSH 1,1

Jun 2006         TSH 1,9

Aug 2006         TSH 1,9

Sep 2006         TSH 0,73

Oct 2006         TSH 1,5

Dec 2006         TSH 3,1   

Feb 2007         TSH 0,62

Mar 2008         TSH 1,1

 

 

Mar 2009     High T4 and high T3.

Her doctor gave her tacapzol and she took that during a period. 

This is mentioned in the medical reports of KS.  The professor writes a little ironically about it. It was perhaps a mistake to give her tacapzol, I cannot know.  But that doctor was a doctor who really  cared for Bath. 

 

 

 

May 2009         TSH     0,08

Aug 2009         TSH     2,8

Nov 2009         TSH    1,7 

Nov 2009         TSH    1,0

Dec 2009         TSH    0,43

Jan 2010         TSH    0,35

Mar 2010         TSH   1,2

Jun 2010         TSH  0,01

Nov 2010        TSH   0,01

Dec 2010        TSH   0,06

Jan 2011        TSH   1,3

Mar 2011        TSH   3,3

Apr 2011        TSH   1,1

Aug 2011        TSH   1,22

Mar 2012        TSH   0,75

Jul 2012         TSH   1,5

Feb 2013        TSH   1,22

Apr 2013        TSH   0,07 

___________________________

 

June 2013   Analyses were done in Labrix Laboratory in USA. The tests were in saliva.

T3      860    (ref 592-1850)

T4      175*   (347-1994)

Ratio  T3/T4           4,9*   (ref 0,5-2,0)

 

At the same occation, they did cortisol tests and this was the result:

Cortisol morning    4,06   (optimal range 18-35)

Cortisol noon         4,66  (optimal range 6-12)

Cortisol evening     3,94  (optimal range 4-8)

Cortisol night         1,88  (optimal range 2-6)

 

Doctors often said that saliva analyses are more or less without importance, they often did not even want to look at the result. When I worked at the University of Stockholm as a simple secretary for a professor researching in stress, they always based their research on saliva tests. That was the only way to have correct results. Cortisol tests in the morning when you have already taken the bus and hurried to the hospital are not real morning tests. So I was told. Has that changed? 

______________________________________________________

 

 

October 2013

TSH 2,13

TGAK was positive:  121*    (ref under 4)

Cortisol was low. The doctor took a ACTH-test but unfortunately there was hemolys  and at that time she got a letter from KS that she was admitted there. She thought that with their specialists she would surely get help. The ACTH-test which went wrong, we did not realise how important that could have been.. 

 

 

October 2013  First visit to the the Karolinska hospital 

TSH 1,4.  Synachten was normal (that proves that the adrenals are OK)

They took no ACTH (Pituitary gland  hormone that is needed for the adrenals to produce cortisol)

They considered the cortisol level as normal. We (specialists in endocrinology ... ) did not think that was a morning test taken in peace and harmony. It was a test taken when Bath was already extremely ill, she had gone up early in the morning and gone the whole way to the hospital.  The nurses could not get out the blood. Several nurses tried several times and Bath who was  in a miserable condition at that time felt the poulse was rushing. The result: Cortisol  404 was a true stress test which was the most her poor body could give.

Bath asked KS to have an ACTH-test. No, not possible. Bath was declared in good health regarding  hormones. 

But the doctor did not want to meet the eyes of Bath.  She looked down on her table when saying that there was nothing she could do for her except an advice for support stockings. 

 

 

 

A terrible period followed. I am glad we did not know at that time what would come later.

As mother, I did not know whether I should try to  prevent her from suicide and encourage her to go on, trying to find a solution. Was there a solution?

I knew Bath did not want to die, but she didn't want that sort of life. Without any force, vomitting all the time, tired to death, with a horrible agony. I admit there were days when I thought  "oh Lord let her die".

There is a photo of Bath from this period, December 2013. (See "skint and photo" )

 

 

In the middle of December 2013 Bath started with prednisolon. She had that at home because one of her dogs had been treated with that. She wanted to see if that could make a difference. It did. She started with a very very little dose and went up to 5 mg /day. That was the approximate dose she had read on the net for someone with addison-disease. That should have been hydrocortisone but that was not available. 

Bath has been very critizised for having herself started with cortison. She was without any help at that time (and all other times) and thought she would die.  Anyone in her situation would have done the same thing.   

 

 

I had tried hard to find a new hospital. Sweden was not possible. With a "no"  from Karolinska, you are stopped everywhere. Even abroad  it can be difficult. Hospitals want recommendations and the professor at Karolinska is internationally known. Nobody wants to have relations disturbed with KS. - But it has changed a little I think because the reputation of KS and of Sweden has been darkened.

I found a clinic in Belgium and we went there in February 2014.

 

 

She had been taking prednisolone for two weeks when she took blood tests in Stockholm for the Belgian clinic. They were then sent by DHL by flight to Belgium. In the beginning of February she met the doctor in Brussels.  

 

The results have probably been influenced by the two weeks use of prednisolone but nevertheless, after sending copies of the results to KS, she was sent to the professor.

Oh, we were happy. We couldn't imagine what was going to happen later 

 

 

 

 

 

Period with a professor at Karolinska (from August 2014 - February 2015)

The professor was laughing and joking and seemed sympathetic. But after the very first appointment, Bath said that he was not serious and that he just wanted to make research.I must say I was a little surprised too. Bath came to him with hope. She was ill.  But it was like a show. He was the actor and we should admire him. 

 

 

October 2014           

TSH   0,03         T4 19* (8-14)    (Not taken at KS but at a local health center) Hyper

 

October 2014 (KS)

TSH  0,02                 T3 6,1*   (3,5-5,4)                          T4  16* (8-14)

 

The professor said the hyper in the thyroid,  which had started in July, may has been caused by "Lugol's drops " which she had got in May in Brussels. That might be. She stopped taking the drops in August when the professor said she should not take them.

 

 

Novemberr 2014

TSH  0,04                 T3 6,5* (3,5-5,4)                          T4  17*  (8-14)

 

 

From July 2014 til December 2014 Bath was hyper. There was nothing to do about that. He said it was a "destruction-tyreotoxicose and would disappear by itself.  Bath asked for betablockers (inderal) because she had a very high puls. He said no, she should not take that because something (don't remember). But Bath had an appointment with a doctor of heart disease who told her  to help the heart and take betablockers. On all internet sites they recommended betablockers in that situation. She never told he professor about that.

 

In November the professor had started to wonder why the tyreotoxicose did not stop. He ordered a scintigraphy for the beginning of January 2015.

 

In December 2014 the thyroid fell like a stone from hyper and soon to hypo. It was a dramatic change and she was very ill.

 

In the medical reports from KS there is somewhere said that Bath took thyroid hormone while hyper. This is just nonsens.

 

 

December 2014

TSH      0,05                          T3  4,4  (3,5-5,4)               T4  10  (8-14)

 

January 2015

TSH      2,1                           T3  3,4*  (3,5-5,4)              T4   7* (8-14)

 

A scintigraphy was done 8th January. At that time the high levels of the thyroid had fallen down. Pictures of that scintigraphy can be seen under "skint & foto and I write about it under "Thyroid analyses".

 

 

During the period of hyper autumn 2014 Bath had too high IGF1 (has to do with growth hormon). IGF1 was at 268* (ref 73-244).

In January 2015 the IGF1 was within normal reference: 244  (73-244)

Somewhere in the medical reports from that time, it is said that Bath had "been on GH-hormon". That is an absolute lie.The professor did not want to  admit that she was very ill:

He did not mention that she had had  several toxicoses before. He said she had taken thyroid hormon while hyper. He said that the ACTH-loss was caused by medication. Even if it were, he could absolutely not know that for sure. He said that she had been on growth hormon. All was done in the purpose of going on researching without bothering about the patient. But I wonder if there is not a bit of  sadism mixed into his research. Bath and  I are not the only persons with that impression. 

 

 

 

To see the medical report from the Scintigraphy, see under  "Thyreoidea analyses".

 

 

 

In February 2015 Bath asked to have another doctor. They asked why, why? He is the only one who could help you. So Bath wrote a letter and said why. After that SILENCE.

The reason why she wanted another doctor:

She felt that she did not get any help. She should just go on waiting for something, she did not know what.

She suspected research from the professor. Research was OK. But not only research.

She found the professor arrogant, ironic and he talked sex with her in spite of her protests.

He tried to decrease her selfconfidence by insinuating the illness was her own fault. 

 

She said to me "I cannot go to him because he drives me even more ill".

 

 

It is written in their medical report that her illness was so complex that no one except the professor himself could choose a doctor who could replace him. He did not choose anybody.

That is to be compared with what the clinic leader said at a meeting which I'll describe in the following paragraphe.

 

Bath insisted and finally she was called to a meeting with with two doctors. One of them was chief of the clinic. She was the one leading the discussion. Bath was now told that she was not really ill. The only problem was that she took to much cortisone and also sleeping pills. If she stopped that the ACTH would come back and there was no problem anymore. The professor had said that after about 8 months of no-work, the adrenals could not wake up any more, but that had obviously changed now. And the thyroid? Bath asked. The clinic leader said it was not possible to feel the difference between hypo and hyper and for the body that would make no difference. Bath was now recommended to take contact with TUB which is a center for people with drug and alcohol problems. They would help her.

During that meeting the clinic leader didn't sit down. She was standing, leaning on a bed. She wanted us to understand the non-importance of this little discussion. 

 

I did phone to TUB just to hear what they would say. I talked to somebody responsible  but that person could not understand. He said that they knew nothing about cortison and that their clinic was not a place for sick  people with hormone problems. He then added "if somebody is very ill that person would perhaps need to sleep.

 

 

The period with the professor was  over but he and KS go on persecuting her even today.We met the professor recently because we visited him spontaneously in his lab an afternoon in November or December 2017.  He wasn't glad to see us among all collegues. but after a rush "sortie" from the lab, he was willing to talk to us. He promised he would give Bath a recommendation letter to Umeå. But we never got one. They refuse to give her adequate care and they also refuse to give her a recommendation for any other hospital. Without that, she cannot go to any hospital in Sweden. People say "but you have the right to go and have a second opinion. In theory yes, but try and you will see.

 

 

 

 

 

 

 

NO DOCTOR  (from March 2015 til January 2016)

 

During 10 months I was either on my knees begging them or I was aggressive writing angry letters to KS. Bath was so ill that I was the one having contact with the clinic. We had contact per mail and telephone nearly all these 10 months when Bath was cut off from a doctor. The person with whom we had contact was a specialiste whom we liked very much. Bath asked her "can you be my doctor". She said no all the time. She politely answered the mails but she refused to give any medical advice.  At that time we could not understand why. Now we know. 

She must have known that if she took Bath as her patient, she would become the instrument of the professor and she would have no freedom to care for a patient who had insulted the professor by leaving him.  

We know that because it was exactly what happened later.

 

 

 

March 2015

TSH  0,4             T3 5,2  (3,5-5,4)                   T4    8  (8-14)     (no thyroid hormone)

 

May 2015

TSH   1,8         T3  3,8 (3,1-6,8)                           T4 13 (12-22)    (no thyroid hormone)

 

 

In June 2015  we went to Brussels again but not to the one (Herthoge)we went to earlier because that clinic was a little controversial in the eyes of the "school medicine" and then we also wanted to go to a real hospital, not only a clinic.  We met a very sympathetic doctor who was shocked by the story of Bath and by her illness. He said she must go to a university hospital because it was over his capacity and the pituitary gland (hypofys) probably  was involved.  He sent a recommendation letter to the hospital of St Luc to a famous professor. Ten days later she had an appointment with that professor. 

 

 

 

Here aree  the results of the thyroid from the Clinic where we were first. 

June 2015

TSH 1,68               T3 3,2*  (4-7,4)                T4  10,7  (10-22)        (no thyroid hormone)

Not eaten, not taken any medication since the day before.

 

The appointment with the professor at the Hopital Saint Luc  was just a great disappointment.  He had been in contact with the professor in Stockholm and had information about Bath that he could have got from nobody but he professor in Stockholm. He was just awful. I won't go into details but it has left a bitter taste in our minds. He sent her away in a very aggressive way. Three weeks later Bath got a medical report of 3 full pages where he declared that she had no hormmone problems but had "chronical fatigue". 

That man, whatever his other qualifications may be, just wanted to do a favour to his admired collegue in Sweden. The moral qualities of these men and women sometimes do not correlate with their academic level.

There is something else I would like to point out: Secrecy is an illusion. Professors/doctors know each other, are friends, meet in international conferences  They drink together and talk about their cases. I can understand that because they exchange experiences.Patients also change opinions of their doctors.  But from that, to phone each other and "warn" when a patient is searching another doctor or a second opinion, I find that a great problem.

My daughter has a serious illness from which she can easily die if it is not well cared for. She is hunted from one hospital to another.KS is always present in our life.

In Sweden you cannot go to a hospital without being more or less forced to show the medical reports from an earlier hospital if you have been to one.

There is a law in Sweden that says that you are not allowed to go into the medical reports of a patient without having a legal reason for doing that.You shall only do it if you have something to do with that patient.  There is another law which says that if you do research that will give you the right and  that law will oveerlap the first law.

We have been able to  verify that hundreds of people have been into the medical reports of Bath. We have pointed that out. From KS we got the answer that all these doctors were doing research...  (and she was not really ill??)

 

 

 

 

July 2015

TSH  0,38          T3  3,3 (3,3-6)              T4  12  (10-22)     Werlabs / No thyroid hormone

 

August 2015

TSH  0,61          T3   4,2  (3,3-6)           T4  16  (10-22)   W   / No thyroid hormone  

 

September 2015

TSH  0,51         T3 3,9 (3,3-6)              T4  11 (10-22)     W / No th hormone

 

October 2015

TSH 0,45          T3  3,2* (3,3-6)           T4  13 (10-22)   W /no th hormone

 

 

December 2015 

TSH 0,42          T3  4,2 (3,3-6)            T4  14   (10-22)    W / no thyroid hormone

 

 

 

During the  autumn 2015 we got the confirmation that the professor really had hidden test results  taken from Bath. These analyses were not taken in the ordinary laboratory but in the research laboratory of the professor. What sort of tests that was, we will never know. We have had a written confrontation via IVO (Inspektionen för vård och omsorg/Inspection of health care) about that. But IVO is just an illusion-authority standing on the same side as the hospital (this is my firm opinion). 

We always think that the professor and perhaps even his collegues know  more than we do about the illness of Bath. We try so terribly hard to find out what is wrong.

We know that she has one, probably two thyroid diseases, that she has lost her ACTH (pituitary/hypofys hormon corresponding to cortisol production), that she sometimes has too high growth hormon. We know that the sex hormones have always been irregular. But we don't know if all depends on the thyroid and that the pituitary gland (hypofys) is ill because of the thyroid or if there is something more that we will discover later or perhaps never.

From the beginning (that was in 2014) we thought that she might have the illness APS1 (autoimmune polyendocrine syndrome type 1). We still don't know  because the paper we got with these test results "taken", is not a real report. There isn't even a written date of the analys on it and it is signed by one of the students in the research group of the professor. She could have written it herself. Another doctor working at the "endokrin" just had a deep sigh when he saw it.

We do not bother any more. We think she probably has not APS1.

 

 

 

 

Simplified:

Pituitary gland (hypofys) back lobe:  

Antidiuretic hormone ( kidneys and urin)

Oxotycin: takes care of feelings, important for mothers for brestfeeding etc

 

 

Pituitary front lobe: 

ACTH  helps the adrenals to produce cortisole

TSH: helps the thyroid gland to produce thyreoid hormon

FSH and LH: for the sex hormones

Prolaktin: for producing milk for babies

Growth hormon via IGF1.

This is really very simplified but a good start for understanding anything at all of these mysterious things. 

 

 

 

 

In September and in October 2015 KS gave Bath the possibility of hospitalisation. First we were happy but Bath wanted to know  what doctor would be responsible. They did not answer. They answered other questions but not that one. She asked several times (by mail) but they refused to tell her.

She said "no thank you" the first time and when all was repeated a second time, she also repeated "no". Of course they wrote in the medical reports that she had been offered hospitalisation but not accepted. Bath asked to see a doctor at an appointment but that was not possible. The professor was always behind, arranging things. That was obvious in our eyes. 

 

In December 2015 I wrote a mail to the desired doctor and said "please, please, for at least a  short period, take the responsability for my daughter. Please, please". Now I feel pity with her. She had me on one side and on the other side she surely had the professor and the clinic boss. Poor woman she was in a fox trap. How could I be that silly. But I couldn't imagine the situation in that clinic. That was far from my understanding that it could possibly be like that. And I am sure she had been promised to work independently of the professor. She was so optimistic at the beginning and Bath was happy. We trusted her both. She listened to Bath's quesions and answered in a way that Bath felt was sincere. She wrote neutral medical reports without irony. 

Unfortunately, that did not last. The doctor got more and more silent. To every question Bath put, she answered "I don't know". That was her way of protesting and we should have understood. But it was unbelievable and Bath was so ill, where should I go with her?

In May the doctor "forgot" to take thyroid hormone tests. In June they should have had their last appointment before summer. Bath was too ill, she couldn't go. They spoke on telephone but Bath said to her "speak to my mother, I'm too ill". I remember the doctor said "oh with that much cortison (50 mg), of course she is ill". And I answered that Bath had two ways to die either with cortison which yet gave her a little possibility to breathe or reduce the dose of cortison and die at once.

Yes,that doctor did something miserable. She was guilty. But she was no the only one guilty. All doctors that Bath met when she was hospitalised in January 2016 must have understood. If you have lost one pituitary hormone, you are very likely to loose another one. And they knew that Bath had had problems with the thyroid before, even if the professor had avoided - as much as possible - writing about all her earlier problems with the thyorid. And she was swollen, not only the usual places typical for cortisone. Her hands were swollen, her feet and arms. Her eyes. She had great difficulties to breathe. The doctor at the Thorax clinic was worried at first and sent her by emergency to x-rays. They saw something on the heart that they could not explain. They saw that she had broken ribs. She had a low up-take of oxygene. He knew she was patient at the endocrine clinic. But then suddenly, there was no problem at all. She was too fat. That was all. The doctor refused to talk to her and an aggressive nurse told her there was nothing more to do. Too fat.   W h o  told this doctor at Thorax to keep silent?  Samsom himself? No, probably not, but somebody told him discretly not to help this patient - she was not desired at the hospital.

They all kept silent.

 

 

16th July 2016 -  I will always remember that day

I was waked up by Bath who was not well. She couldn't talk normally. She could not understand normally. She behaved curiously. Had she had a stroke? I phoned for an ambulance and they came quickly and away we went. Priority 1. When we came there, there was a team waiting for her. A nurse even sat with me. They gave her oxygene and perhaps something else, I don't know. She was better after a while. A doctor asked if she took levothyronin. No she took no hormone for the thyroid. Should she?  She had been to Werlabs (private laboratory but thought everything was

But we hadn't undrstood that the low TSH was a problem. The T4 and T3 were OK. We should have but when there are many difficulties in life you sometimes forget the most important.

They said that she should immediately go to KS where they were more specialised for pituitary gland problems. But she had been to KS several times during the last months. They had not said anything. We understood why and went home. Bath thought she would die and prefered to go home, not to KS. 

We went through terrible months. I gave her thyroid hormone but she was just awfully ill. Afterwards I don't understand how we got through. In October we both were absolute desperate and I forced her to come with me to the Akademiska in Uppsala.She hated me for that but what could I do. 

They didn't want to take her but said we should come back next day. I found an empty room in the hospital and we hid there during the night. We were discovered but a nice nurse told us another place to hide. 

The next day they let her in and the doctor was very nice and gave her oxygene and suddenly she was a little better.I I got a good impression and left her there, happy to be released for a moment. By midnight Bath phoned me and cried of horror. She was probably a bit psycotic by all her illnesses and at that time I didn't know she had fever and a SR of over 300. And myxoedem and a lack of cortison probably. She was just horrified and I got out of my bed, took the car and hurried away to Uppsala again. It was in the middle of the night and I didn't know where she was. The hospital area is big and I had never been there before. It was cold. I left the car somewhere and I tried to find an open door somewhere. I did and I found her. Please take me away from here she said. What should I do. The nurses were angry and said I was a bad mother if I took her away. I spent some hours there with Bath and the nurses. I told them the story and they were very very kind to us both. Bath calmed down and I returned to Stockholm with my car that I I found again after an hour of searching. My poor little dog was unhappy in the car. 

I came home at 6 in the morning and then I slept more or less for two days.

 

Monday morning I was waked up by the phone. It was the hospital. They said Bath was on the bathroom floor and refused to get up. I couldn' t do much about it but of course I quickly went away without changing the summer tyres of my car as I had planned for that day. 

Bath was still on the floor when I cam and the he first thing she did when I came there was to hit me in the face. She was not in a normal condition. II told the nurses to leave us alone. Bath was so ill. I had never seen her so awfully ill before. She thought I had left her there to be killed by the professor. After all we had gone through with KS that didn't surprise me so much. That would absoluteely be the best thing for him if she died. 

Things went a little better after my arrival. It was more quiet for ininher. She believed me when I said I didn't co-operate with the professor. They had discovered that she had rose fever and she got antibiotics intraveniously. But curious thing: she did not get cortison and levothyronin intraveniously despite the fact that she vomitted and had diarré all the time. She didn't get potassium and sodium either in the veines but only as tablets. A person with addison disease should absolutely have all that intraveniously, that is basic. So after all, she wasn't that irrationell in her thoughts.

We now know that the professor still was working at that same hospital. .

It also would have been normal that one of the doctors came in to us to talk about the situation. She was in a very dangerous condition and I am still surprised that she overcame that hospitalisation. It was not meant so by the hospital. I know I shouldn't say so. It is very controversal but I am rather sure. 

When I look at the photos from that time, there is a difference between before and after the 14 days in Akademiska. And she is not better. They gave her less cortison and that of course was good, but they went to fast for a person with rose fever and SR between 300 and 100. A person with addison. She got much less cortison but also less levothyronin. She has more mucin at the photo after Akademiska. When she was there she got diabetes. Afterwards she has no diabetes. That must have been because they gave her less levothyronin.

They never admitted  they did wrong. Of cours not. And not IVO either. 

They told her she should go to KS to be hospitalised there. She refused, she would rather die directly and I admit, it was better to go home. 

 

November 2016 back home

 

 

January 2017   TSH 0,08           T3 3,8 (3,3-6)         T4 14 (10-22)   Werlabs

In January Bath starts to wake up from the myxoedemcoma. She can now go small walks in the neigbourhood.

 

31 jan 2017        TSH 0,16          T3 3,1* (3,3-6)         T4 10* (10-22) Werlabs

31 jan 2017        TSH 0,2            T3 2,8* (3,1-6,8)      T4 8,4*  (12-22)   KS

 

The 31st January Bath took tests both at Werlabs and at KS. She didn't trust KS. But the results were about the same.  She had gone back to KS for the first time since June 2016. She had got a new doctor. Curiously he was the person who had replaced the professor as leader for a research group. We had never heard his name before or after as a working doctor. Why did she have to go to a research leader when they consider her not to be really ill. 

She had written a mail to him, a friendly mail where she just told him about her new situation and what questions she would have at the appointment. He did not answer any of these questions at the meeting and when she asked if he had got the mail, he just said that she should not write mails.

Her thyroid results, as you can see above,were not within reference and the TSH does not match the T3 and T4. He wrote in the medical report that she was "euthyroid" which means that the thyroid was OK. The diagnosis was still: "Adrenal insufficiency caused by medication". Not a word of the thyroid. 

He also writes in the medical report:

"Still much trouble with full-time job to report her life in accordance with the protocol that she herself has decided to execute"

That is a sentence that could has its origin from the professor. It's exactly his style. 

Bath has a diary where she writes how much medication she takes. She told him about that and about her difficulties to get a good balance between the cortisone and the thyroid hormone. The throid goes up and down she explained. That was none of his business. He told her to come back when she had reached the level of 30 mg daily. Nothing more.

 

I met this doctor next to the Hospital some months later. It was not a coincidence from my side. I put a question to him and he said he had nothing to do with Bath. He didn't work at the hospital but only at the Karolinska Institutet.

We asked the clinic again if she could get just a normal doctor and not that research leader as he didn't even work at the hospital. But no, he was the only doctor at the hospital whom Bath could get. He did not work at the hospital but could do so for one appointment with her. 

That doctor is perhaps the only doctor accepting to be the instrument of the professor. ... That could have been a part of the agreement when he took over the leadership for the research group.. No, I shouldn't speculate that much.

---------------------------

A trip outside of Sweden

 

March 2017

TSH             1,8            T3 4,8 (2,6-5,7)       T4 10,1 (9-19)

These tests were taken without any cortison and thyroid hormone since the day before.

An MRI was done and showed nothing anormal. 

Ultra-sound of the thyroid:

"Volume left 4,9, Right 8 ml    Total 12,9

Thyroid normally big, from the environment limited, parenchympattern, echonormal, homogen, multipliedly septered, undervascularised, no noduli.

Judgement: normally big thyroid, without noduli. The parenchympattern could correspond to an autoimmune thyroid illness of type hashimoto"

(This is my translation from German.

The heart was examined and the doctor was very serious and told her that it would not hold for very long time any more if she did not loose weight.

The liver was not either in good condition. Tat-liver and bad blo

The analyses of the liver were not good at all and the doctor told  her heart would not be able to go on  long time with that high pressure. 

We had been very glad to go to Germany. Bath felt better than she had been for very long time. She was not like a "normal" person but she felt a little bit "normal". She enjoyed seeing other larnscapes, realising  that she had not forgotten all German. We once took a taxi and walked a little in the old town. All that was surprising and very encouraging. But when she realised what the doctor said to her, she was returned to reality and that was hard.

Bath started with the liver. She took away the antidepressives and the pills againt pain. She started with Mary's thistle and beethroots. These steps made already a difference. She tried the whole time to reduce the cortison but that was and is the most difficult.

Her weight was still very high, over 100 kilos. In a report  that we found on the net from the Sahlgrenska we learnt that a relatively hig T3 and L-cystein was the best way. She did what she could. 

 

April 2017      TSH 0,39                                     T4  13 (10-22

Thyroid hormone in the morning.Treated with pig hormon.

 

April 2017       TSH 0,17         T3   4,0 (3,3-6)              T4 24*

Had changed to levaxin

 

2nd May 2017

 

May 2017                                                         T4 22*(7-16)

 

10 May 2017    TSH  0,04           T3 4,6 (3,3-6)          T4 25* (10-22)

Had reduced levothyronin

 

22 May 2017        TSH 0,07           T3 3,5 (3,3-6)       T4  23*  (10-22)     KOLLA UPP T3

Had reduced levothyronin even more.

 

29 May 2017        TSH 0,1            T3 (3,5-6,3)           T4  14 (7-16)

 

31 May 2017        TSH 0,08          T3 3,5  (3,1-6,8)      T4 19 (12-22)

 

May 2017

For the first time since 3 years she could go to our summer house at the West coast of Sweden. She was happy to see all her family again but did not cope with the stress of meeting people.Very often, very ill.It is sometimes very difficult to know whether she is ill because of thyroid/cortisol/stress/panic attacks. Or perhaps imbalance of sodium/potassium. 

 

               

5 June 2017         TSH   0,16            T3 4,2 (3,3-6)          T4 25* (10-22)

 

20 June 2017       TSH 0,6                T3 3* (3,3-6)           T4 18 (10-22)

 

3 July 2017  W     TSH 0,07              T3 5,2 (3,3-6)          T4 22 (10-22)

 

23 July 17           TSH 0,006             T3  1,8 (1,3-2,6)      T4   20,5 (11-22) (Trollhättan)

 

 

 

August 2017    Bath's weight is 30 kilos less than August 2016. Less cortison and less mucin.

There is a photo of her  under "Skint&Foto.

But the dose of thyroid is very difficult to find and as a consequence the dose of cortison. 

Cool

 

Aug 2017       TSH 0,03               T3 6,3 (3,3-6)                  19  (10-22)     W

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  

 

 

 

 

   

 

 

 

 

 

 

  

 

 

 

 

 

 

 

    

 

 

 

 

 

 

 

 

 

 

 

 

                                               

 

2. Feb, 2018s