So... yet another appointment to see the gp whom once again insists that my daughter's extreme tiredness is depression. Once you've been diagnosed with depression and treated with antidepressants you cannot get away from that diagnosis. Six years of treatment did nothing...changes of pills, increasing medication, therapy..made no difference to her energy levels. She has been off all medication for depression for 4 years, makes no difference. How many times do we have to say "she wants to do things" but can't because she's too exhausted. Do they really think she enjoys not having a life! Two months ago she had a B12 injection and her levels were 1479 well above range now they are already down to 770 despite eating red meat at least twice a week. Dr said its her diet causing low B12! She was low in B12 in 2012, 2014,2016, hence why we now self medicate as although she was supposed to have injections 3 monthly they were stopped. Her morning cortisol saliva test was low 7.97 (6.0-21.0) but no answer as to why it's low or what is causing it. If her level was mid range would she feel better? Her DHEA was 2.6 (0.26 - 11) again..would she feel better with that being higher? Anyway after being asked to leave the room whilst she talked to my daughter about her depression!..I returned to find her saying that its probably CFS....not such thing as CFS its a bloody symptom. After a bit of more chat she agreed to chase up the ultrasound for my daughter's lumps in her neck and a referral to an endo which I will have to look at and see where we are likely to go. Don't hold out any hope though as I am probably labelled as a pain in the proverbial! Sorry for the rant but I feel like punching something.
Catlover3
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Her morning cortisol saliva test was low 7.97 (6.0-21.0) but no answer as to why it's low or what is causing it. If her level was mid range would she feel better?
The morning cortisol result should be top of range, not mid-range.
Regarding her B12, have you posted on the Pernicious Anaemia Society (PAS) forum? You can find out where to buy B12 for injection and all the supplies necessary to inject from them. In places like Germany B12 is not a prescription drug, and it can be bought without any hassle. Some people start injecting once a month or once a week or every other day, or whatever is necessary to help them feel well. You can find Youtube videos to teach you how to inject B12 - it can be done into the skin or into the muscle. I don't know which is easier or which is most appropriate. You'll find PAS here :
Thanks for the reply. Yes we buy from Germany and tried injecting every day for a month and then every other day for two months. Her levels rose but still made no difference to the extreme exhaustion she feels. So although B12 is a problem its not the only one! As a child she was very anaemic at 6 for no reason, or rather it wasn't investigated! She had to use a pushchair to get around and missed lots of school. She has had low folate and D3 too which makes me think that it is genetics. My gran on my father's side had many autoimmune diseases including thyroid, three of her 5 sons have thyroid problems too so the link is there. Low D3 can be explained by her being housebound. I showed the gp her cortisol saliva results and she said they were all in range, so normal. When are they going to learn that we are all individuals and the ranges are "guide lines" not absolutely set in stone. Who's to say that she wouldn't feel better if all her ranges were at the top instead of nearer the bottom. I wish we could all have had blood tests when we were younger and healthier so that they could be used as a guide as to what was "normal" for us as individuals!
I can sympathise and empathise with your problems. Doctors decide that a patient is attention-seeking, a hypochondriac or whatever, write it in the notes, and it becomes a life sentence. No doctor will take them seriously. I've had similar experiences for over 40 years, having been "tried, convicted and sentenced" in my teens. But naturally, nobody ever told me about this trial and sentence. I was just fobbed off over and over again.
For full Thyroid evaluation your daughter needs TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate and ferritin (normally B12 too )
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
As she is already on B12 injections this suggests low stomach acid and/or gluten intolerance. Other low vitamins common as result. Low stomach acid is typical when hypothyroid
Thanks SlowDragon. I am going to have to arrange for the blood test to be done privately at home. Can't get blood out of her fingers no matter how many things we try. We have learnt over the past few years about fasting blood tests despite the dr not saying to do it. Shame we hadn't learnt until this year about avoiding Biotin before a blood test as that has made some of the tests we have had done irrelevant. She is gluten and dairy free. Dairy free from a very young age and gluten free over the past few months.Her D3 is fine with the supplements and has probably been low more to the fact she is housebound. She is negative for h-pylori as had that tested recently. Loads of problems with low ferritin/folate/B12 over the years despite eating a very good balanced diet with lots of fresh fruit, veg, meat, fish etc so these deficiencies are not caused by diet although the doctor doesn't believe us! My daughter does not drink alcohol, smoke, take illegal drugs, have caffeine, fizzy drinks, fast food, purely because she doesn't like them, but we are met with incredulous looks and disbelief. Makes me really cross! Just because its unusual for a 24 year old not to drink/smoke etc..doesn't make us liars. As I have hashimotos and my dad's side of the family have thyroid problems, it is probably what is causing the problem but because she is in "range" nobody wants to know. They would rather shut her up with antidepressants and leave her without having any form of normal life. Grrr
I hear you. Please don't get badgered into antidepressants. I took fluoxetine (Prozac) for years. It never really helped and during that time my thyroid was deteriorating with no one picking up on it. I kept trying and making suggestions but to no avail. Recently have been very demanding about getting the right thyroid care. I am a retired nurse and only learned what I needed to know about effective thyroid treatment from this forum. Certainly not from any doctors. And you're right. Once we are given a diagnosis of depression it is like a life sentence, a catch-all diagnosis for whatever symptoms we have, and a reason to blow us off when we become assertive about wanting to feel better. I'm very frustrated today. Thanks for listening. irina
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Am sooooooooooo angry
Frustrated with Endo 
Frustrated and looking for a way forward
