So I finally had an appointmemt with an endocrinologist at the Charité in Berlin, a huge and highly regarded cluster of teaching and research clinics. At the first meeting he told me to stop limiting carbs (diabetes in family, very high blood sugar levels after eating small amount of carbs) , he'll prescribe metformin when I become diabetic! He claimed my genetic DIO2 test (bad converter of T4 to T3) was meaningless. Told me to drop my 20 mg hydrocortisone (Hypoadrenalism) without tapering off....
I went to today's discussion of blood test results with low expectations. Not low enough! He could not find his notes but doubted every info I gave him. The suppressed THS (I'm on 55 mcg of T3) was his only concern. My Hashimoto's antibodies were low (glutenfree and AIP for years) so he said I didn't have Hashi's. My FT3 of 2.3 (2.0 - 4.2) he considered unimportant. My ACTH was previously always below range (pituitary adenoma). This time in range. When I told him that the blood sample had not been frozen immediately (according to protocol) but had sat in the sun for an hour whilst the nurse chatted to me he claimed that all previous tests in other hospitals had been carried out wrong to show a low result.
So when I said (calmly!) that I did not want to reduce my T3, but would rather increase it because of symptoms he started to get angry. I asked why he didn't inquire about my symptoms - he pointed at his screen and said 'all I need to know is here'.
He declared menopause and depression as my problems, that I should drop testosterone because 'no woman needs it' and that below range across board hormones were just 'normal'.
He then told me to leave because he had patients who needed him. I just about got my results printout. I admit I asked him how much time he spent studying the pituitary/thyroid/adrenal axis at university. He quite rightly told me not to insult him.
On the way out I picked up a leaflet for diabetics, it suggests strawberry cake with flour and sugar but artificial cream as a 'healthy snack' --- I rest my case!
Dear Everybody - thank you for letting me rant and thank you for all the information you give so generously, I will continue to self treat. Luckily I have a great GP who told me that she would not trust any endo with her own health.
Sadly, without the proper diagnosis I will have to continue to pay for so much privately and will not benefit fully from the many benefits of the German health system, it will also affect my pension down the line.
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milupa
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Just wanted to say that had I accepted my fibromyalgia diagnosis ten years ago I would be entitled to a lot of help, treatments, 'cure' holidays and even early retirement if wanted.
I opted to look for the real issues, found so many! - but low adrenal output for example is not an illness ... and hypothyroidism is so easy to treat ... vitamin deficiencies don't affect our health ... as we all know
So I will continue learning and asking questions here!
It may be worth seeing another endocrinologist for a second opinion. I can't believe all German endos can be as arrogant and awful as the one you saw. Perhaps your GP could recommend someone even though she wouldn't choose to see one herself.
As you have a pituitary adenoma you probably shouldn't trust your TSH results and should be guided by FT3 which is low in range. Most people will feel better with FT3 in the upper third of range ie 3.4 - 4.2.
I saw an endo at another Charité campus a year ago - omg - even more disastrous! And I was really sick at the time, barely functioning. She questioned my mother's morality when I said that I'd never met my father and could not give his medical history, told me that if I had enough energy to apply make up I wasn't really exhausted and wrote a report that had nothing to do with what was talked about during the appointment. I could write a novel about that one...
Thank you for confirming facts about the adenoma affecting TSH results. I felt best when I was slightly over range FT3, my functional doc at the time was happy with that.
Parting remark by endo today: I should go and read more books that mess with my brain...!
How bloody rude! Why would it be your mother's fault if she and your father split up before you were born?
Pituitary adenoma can affect TSH results so unless it has been demonstrated that your adenoma is categorically not affecting your TSH it should be treated as suspect.
I'm quite shocked From other members in Germany I got the impression that endocrinologists and thyroid specialists were superior to UK doctors.
Endonob today obviously isn't scrambling his brains with endocrinological information.
all pituitary downstream hormones have shown low/below range for years but they were only interested in prolactin. No-one (St Mary's London discovered the adenoma, I saw a different specialist at every appointmemt over a few years and nobody referred to the previous findings) has put the picture together until I found a wholistic GP in Germany who I believe saved my life. He linked low TSH to the adenoma and diagnosed by low FT4 and FT3; and switched me from T4 to T3 within weeks when T4 made me feel even worse.
The German health system is very good (and we pay a lot into it). But I think the demi-gods in white share the same attitude of superiority, no matter where they are based.
Should have said he died in service to his g-d as a missionary or something, when you were so young you can't remember him. Anyway, what does any of that have to do with your medical problems unless she was alleging a hereditary unmentionable disease (adn if so, why wan't she investigating it.
What a good idea, I don't know if that would have shut her up... it got even more bizarre when I mentioned that my unknown to me father was a former British soldier (I am German): She said that after the war a lot of children were born with foreign military fathers (I was born in 1964).
A lot of Brits were posted to Germany as part of their National Service from 1949 to 1963 and the BAOR (British Army on the Rhine) had a lot of bases but by 2020 they will all be gone. My husband was one of the many randy soldiers posted to Germany in the 1960s, that was before we met though 😉
Helsbells68 - I didn't know the UK had a National Service, I always assumed it was voluntary, thank you for correcting that assumption!
After my mother's death I found out that he had been stationed in northern Germany and left the army to later settle in Southern Europe.
I somewhat closed the circle when I moved to London at 21 and later married a Brit. I moved back to Germany 30 years later for health reasons which brings us back to the endo....
UK soldiers (and joint military exercises/starfighters/tanks) were everywhere when I was growing up, also 'out of bound' signs on every pub... the boys did have quite a reputation!
Wow! I'd say if you've had two at Charité, one bad and one worse then go somewhere completely different for another opinion.
If you're worried about diabetes I have an amazing book written by a Dr David Cavan - it's all about a Low Carb, High Fat lifestyle and following that I was able to eat my way out of T2.
I'm like you I only need to sniff at grain based carbs and my blood sugar soars so I've given up them up. I went totally GF nearly two years ago when I developed arthritis - it was the steroids I was given for that that gave me T2 so yes, the 'establishments idea of healthy foods would have kept me diabetic if I had followed their advice.
I'm glad you managed to question his training in thyroid, pituitary, adrenal medicine. He may have been insulted but he sounds like he more than deserved to be asked that so well done and don't feel bad - I once parted company with one of my children's schools and my parting shot to the headmaster When I told him was that 'I wouldn't let you train my dog if I had one'. He was speechless so I hung up at that point. 😊
I'll check out Dr Cavan's book. I've been dabbling in lower carb and then keto for a long time. I've tested my blood sugar levels extensively (another thing endos didn't want me to do) and the numbers confirm the symptoms I feel. But I need a physician's view on this! Being ketogenic messed with sleep and hormones (I also didn't lose a gram) so for now it's low carb, medium fat, medium protein, high veg.
Did you manage to go off steroids? I assume the diet change didn't affect the arthritis? But getting rid of diabetes : congrats!
Yes, it was a three or maybe four month course of steroids. Very high to start with but tapering off towards the end. I started in methotrexate at around the time so when the steroids phased out the methotrexate pretty much started to take effect. Methotrexate isn't fast acting like steroids are - a couple of days on steroids and I was like superwoman, nothing hurt. Realising that not a single part of your body was hurting was amazing for someone who normally felt like she had been run over by a bus every morning.
I think my new eating regime probably helps the arthritis too. It has certainly reduced my thyroid antibodies and my CRP which I think is for inflammation and it is inflammatory arthritis that I've got has now reduced a lot. I'll stick with the GF even though I often feel I'd love an extra thick slice of granary bread with thick butter and raspberry jam or a nice big fluffy fruit scone. I'm salivating at the thought.
It got worse. I started doing supply teaching, he was seconded to do some other sort of work and one day there I was sitting in a staff room when he walked in and sat down. He didn't recognise me at first then he looked at me and said "You!" I said yes, I was on supply.
I know. Fortunately he was just passing through - he was talking to the head and was only there for a coffee break. The head I was working for at the time and who went to give me a permanent job knew the whole story, well the entire staff knew all about it, I was surprised that anyone in the area would employ me but I don't suppose he would tell anyone that someone had said that to him. Needless to say we all laughed about it afterwards.
Thank you! Looking back I was surprisingly calm, nonchalant even. Previous similar encounters had me reduced to tears, confirming their view that it's all in my head and I should be on antidepressants.
So I guess the big take away from yesterday is that I not only feel better physically but finally stronger mentally as well.
Jeeeesus, never heard of anything similar! Must say that we really need to take our health in our own hands so that we can use the right doctors. I really do feel sad for all those AI patients who blindly trust the medical professionals
I used to be ausgezeichnet an der Schule but it's not easy to retain it when we get so little opportunity to speak it. I sympathise with your husband. Europeans generally speak much better English and are keen to speak it!
I mainly now remember lyrics to German songs learned at school! Horch, was kommt von draußen rein , holahi holaho!
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From other members in Germany I got the impression that endocrinologists and thyroid specialists were superior to UK doctors.
Update - Endo visit - don't know how I feel!
COP OUT
Advice again please...nhs endo wants me well "to a point" and says I feel well now as I am essentially hyper!! Suggested drop in t4..
Endo confirms it's all in my head! :p
