Genova tests are reputable and accurate aren’t they?

[Finola]

Long story, so won’t bore you with the depressing reason for my question, enough to say that an endo has sewn seeds of doubt and I need a dose of common sense and truth.

All responses very welcome

[SeasideSusie Remembering]

Finola

I've not used them for thyroid blood tests, but have used them for urine iodine, urine thyroid, and saliva adrenal tests in the past. I haven't come across any problems.

Doctors will often tell us that private tests are no good, purely because we've gone over their heads and done something to try and help ourselves. A lot of the private tests we can't get done through the NHS either because they don't or wont do them, and if they do they don't understand them. And of course, it bruises their ego because you've gone and done it privately.

Do you want to share what tests you've had done and why your endo has sewn seeds of doubt?

[Finola in reply to SeasideSusie]

Hi Susie,

Thank you for your prompt and helpful reply and apologies for delay in replying to you.

I am in a bit of a horrible situation here as I am having to take a medical route which I know will probably end in disappointment and the waste of a year of my son's life.

The story is that I have had a struggle with getting my own hypo and adrenal symptoms treated adequately for at least 12 years and took matters into my own hands some years back with the benefit of advice from the good and knowledgeable people on this site and my own health is now good.

My son, who is now 21, had lots of minor health problems from when he was very young but visits to the dr proved useless. Although results from 2009, when he was 11, show low iron, ferritin and B12 and a TSh around 3 the drs said nothing wrong here, nothing to treat. My son was anxious, grey faced, coped very badly with stressful situations (to the point of throwing up at times) if he got a cold he was in bed for three weeks, sleeping badly (awake at bedtime and then sleeping til midday) all signs of possible adrenal insufficiency. ,During this time I was also really struggling with anxiety and a raft of neurological issues ( all caused, as it turned out, by b12 deficiency and levo toxicity and now sorted) and the drs just didn't take my concerns about my son's health seriously.

Skip forward a couple of years and after getting a Genova saliva test done for Cortisol and DHEA which showed cortisol flatlining throughout the day, my son saw the lovely Dr P, who was so supportive and understanding and helped to point us in the right direction; and we eventually took my son to a clinic in Brussels back in 2013. The treatments offered, which included hormones, supplements and a clean gluten free diet, soon had my son looking and feeling like a new person, back at school, involved in social activities and happy.

Move forward to 2016/17 and my son was away at college and struggling with the work, eating a poor diet and beginning to slip back to being fatigued all the time and having colds which lasted weeks etc.

Into 2017 he felt that the treatments from Brussels weren't working and that he wanted effectively a second opinion from a mainstream dr. Also the person he had been seeing in Brussels wasn't available for consultations anymore.

We made enquiries and this particular endo was recommended by two different bodies as being very experienced with adrenal issues specifically. So we went to see the endo last week and we brought all the previous results with us and although the guy has a pleasant enough bedside manner, basically he rubbished everything that had been done before and in the first 10 minutes suggested that my son's anxiety might be a mental health issue rather than from a physical cause. Same old s**t, expected, but still a shock when you go in there hoping for help.

Anyway he wants my son to slowly reduce and eventually come off all the meds and then allow time for his body to get to baseline and take it from there. He also had a bit of a tantrum, with a smile of course (my son is going private ,can't be too rude), when I pulled out results from Genova, done prior to treatment with hormones, showing this dangerously low cortisol and said that he has never seen a result from Genova which didn't show the same pattern. Clever man eh? So he placed no credence on their tests.

When he responded like that I did feel like the most irresponsible mother on the planet and my poor son was completely confused and shocked by the whole thing. It took me a few days to get it all in proper shape in my head again but my son feels that it is sensible to go through the titration and take it from there. The process will take well over a year.

At this stage I actually don't know what we should do for the best outcome for my son. The problem is that specialists just look at their specialism and don't consider the person as a whole.

Thank you for being there and taking the time to reply

Finolax

[humanbean in reply to Finola]

Regarding the flat-lining saliva cortisol the endo can't have seen many results from Genova. Mine have never been flat-lined. I've also seen people post their graphs on here quite often, and the graph shapes vary quite a bit. They aren't all flat-liners - some are high all day, some are spiky and go low, high, low, high, or just about any other combo. But we are all human, and the way the human body copes with low thyroid hormones is probably fairly predictable. The differences between us are probably caused by the fact we all have other health issues of different kinds, and some people are further along the route of being ignored by the medics than others.

But another way of looking at it, is that the people who go private and use companies like Genova, and who also use this forum might show extremes of results because they've been allowed to continue being hypothyroid for many years without any treatment at all.

I think your son allowing himself to be bullied into coming off his hormones is going to back-fire spectacularly. I can understand why your son might want to stop taking everything. After all, we all want to be "normal", particularly when we are young and want to be like our friends. But your son will probably do what he wants anyway. I doubt you can persuade him otherwise. I suspect you may just have to be there to help him pick up the pieces when he realises that he isn't going to get better by stopping all his meds.

Incidentally, if low levels of hormones make him anxious there is a risk that he will be told by doctors that he needs anti-depressants or other addictive meds rather than the hormones he actually needs. We're all mentally ill as far as doctors are concerned. But your son is in danger of switching one kind of lifelong meds (thyroid hormones which are not drugs and which do help in the right doses and in the right form) for another kind which are drugs (anti-depressants) and will screw up his brain and how he thinks.

[Finola in reply to humanbean]

Thank for your reply Human,

You are correct in everything you have said; the process the endo wants to take my son through is potentially very dangerous, the only upside is that it will be done very slowly and we will be able to watch for changes. My son is set on this route as he doesn't see the current treatment working and won't accept that diet and stress control play a huge part in how well the meds work and overall health. He is set on trying the mainstream route and because of his age and gender is discarding the methods his parents, we, have used. I have tried to talk it through with him but he sees the failure of the current treatment as due to the treatment rather than his poor diet and lifestyle choices. It's part of growing up and I have chosen to accompany him on this path in order to support and protect as much as i can whilst letting him learn by trying.

Fortunately, he knows that he is depressed by his condition rather than the other way around so won't entertain any antidepressant treatment.

He still lives away from us so we aren't able to ensure he eats a healthy clean diet, we do his shopping for him but some days he just doesn't have the energy to cook even the simplest of meals.

He has always had a very clear idea of what he wants to do and can be very stubborn, this can be a gift as well as a curse.

IT's very helpful for me to be able to talk seriously to people who are knowledgeable and kind, so thank you from the bottom of my heart.

F

[SeasideSusie Remembering in reply to Finola]

Finola

That is a shocking story but one we do hear so often.

This jumped out at me

we eventually took my son to a clinic in Brussels back in 2013. The treatments offered, which included hormones, supplements and a clean gluten free diet, soon had my son looking and feeling like a new person, back at school, involved in social activities and happy.

That tells it's own tale.

Then this

Anyway he wants my son to slowly reduce and eventually come off all the meds and then allow time for his body to get to baseline and take it from there ..... The process will take well over a year.

Why? Your son, obviously, is an adult and it's his decision at the end of the day. But why put himself through a year of ill health and experimentation just to satisfy some endo with a closed mind. Who knows what lasting damage could be done, and of course they do like to pull out the mental health card, it covers everything they wont admit to knowing nothing about. If he's interested, I can show him a Genova test where the cortisol levels aren't all flatlining at the bottom, mine were all top of range and mid range.

It would seem that your son went downhill when he went to college and I image the change from a good to a poor diet, plus the stress of studying, and the student lifestyle, played a big part. What about if your son went back to eating and supplementing as he did when under the Brussels doctor.

If you've got some test results that you could put on the forum, many members can interpret them, maybe they've had the same experience and can share with you what helped them.

I appreciate it's very difficult when it's not you, and you can't force your son to do something he doesn't want to do. But I've had enough bad experience to not allow myself to be made ill by a doctor every again.

[Finola in reply to SeasideSusie]

Hi Susie,

You are correct in everything you say and I have thought and said the same things myself to my son. He really hasn't fully come to terms with the reality of needing medication for the rest of his life and the necessity of eating a clean diet. He sees his peers eating what they want and doing what they like without any apparent consequences and he is grieving I suppose for what he has never had and how he has to try so much harder than others in order to be just ok.

He will have to learn that hard way, although we will be there to support him as we can, before he realises, as all of us on this site and others eventually realise, that the mainstream medical system does not treat chronic health issues properly or effectively and that Big Pharma sees western populations as a very fat and docile cash cow.

I will post some results over the weekend and thank you for your advice and understanding, very much appreciated

Finola

[humanbean]

About four years ago I had a needle stuck in my arm (just the once, not twice), and the blood that came out was used to fill blood sample tubes for both Blue Horizon and Genova. The test bundles I had ordered had two tests in common - TSH and Free T4.

When I got the duplicate results for TSH and Free T4 they agreed with each other within 1%. I was impressed, because the companies involved were not using the same labs. So, yes, I think Genova is reliable. The other option is that neither of the companies were reliable, and I don't think they would still be in business after all this time if that were true.

Edit : And if neither company was reliable why would their results agree so closely?

[Finola in reply to humanbean]

Hi Human,

Thank you for your reply and apologies for the delay in replying, I have been having computer issues. It's very good to hear that you have done your own bit of research and found that the results concur between companies.

My reason for asking the question in the first place is a long story and I will put that into my reply to Susie, hopefully keeping it as short as possible.

Regards

Finola

[SilverAvocado]

I wouldn't put much stock in anything an NHS doctor says to dismiss private tests.

In general they accept no private test results, and particularly not any tests the NHS doesn't do.

The best you can usually expect is that if a private rest shows a worrying and actionable result they may do a retest themselves. Very rarely an absolute gem of a doctor will take some results seriously.

[Finola in reply to SilverAvocado]

Hi silver,

Thank you for your comments and my apologies for the delay in replying - due to computer issues here.

Your words were comforting and helpful, so thank you again.

Finola