After having my son's blood taken first thing for about the past 20 years and then having T4 directly after, and Hydrocortisone and other meds 1/2 to 1 hour later with breakfast, I have now been told by NHS Endo that he is not pleased with him not having Hydrocortisone first thing. Has anyone got any information on this and how do I get blood taken for a proper Thyroid assay when this should be taken as soon as possible on rising without having food before. The Hydrocortisone needs to be taken with food.
In all this time nothing untoward hs happenedand I feel a big fuss is being made because I took my son (and self) to a private Endo. A touch of professional pride, I think!
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nightingale-56
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I have now been told by NHS Endo that he is not pleased with him not having Hydrocortisone first thing.
😠 A touch of professional pigheadedness, I think. What he's not pleased about is your impertinence in not swallowing his wisdom hook line and sinker.
<Middle aged snort of derision...surely you heard it, across the Thames, j_bee ? >
I am not qualified to give an opinion on this buffoon's unsubstantiated (to you, at least) medical pronouncements, of course. But after 20 years of being tested this way it's a tad suspicious that the nhs endo starts laying the law down, don't you think? In any event, should you decide to toe the line, that will bring all of your son's other results out of line, will it not?
In your mocassins, I would be asking to see a different nhs endo and if you do have to return to your private endo, bring this up with him for his second opinion.
These things are sent to try us Rapunzel . I have now been sent an appointment with him for 1 September. Probably to be pulled over the coals, or given my marching orders. Trouble is, I have already changed to him from the only other Endo at this mid Essex hospital, so where do I go now! Definitely not any wisdom showing from this last appointment. Must remember to ask for scientific links to this medical problem. How to get a blood test result for a condition that needs to be taken having fasted (cholesterol needs this too, not that they do it now), Levothyroxine and a condition that needs medication taken with food as soon as possible on rising. What a quandary. One that the medical profession have not worked out yet.
Pfft doesn't make enough noise, does it? Just imagine me dancing around his head, making raspberry noises! Can't our friends across the pond help? magicfoundation.org/Growth-...
(Don't Google 'Magic Foundation' on its own; it returns a load of overpriced, maximum coverage slap and for me, a constant sidebar of luscious frocks from Chesca just right for my upcoming holiday in October )
Rapunzel , I think the magicfoundation.org/Growth is just for children. I joined it once. I am going to ask for information from The Pituitary Foundation, who I have joined. I rather feel though that the Endo will think of them what he thinks of us! Most American sites want to sell you something and much as I love the clothes in some of their adverts, I have learnt my lesson from buying in the States only to find that they look really weird when I go to wear them at home. Thanks for suggestion though.
Hi shaws , the trouble is he has to have the Hydrocortisone with his breakfast and if he eats before the blood test that will skew the results too. Can't seem to win at the moment. Am quite happy to give him his Levo an hour before lunch, but it is the eating beforehand that is the problem.
Dear j_bee - what is your son taking the HC for? I have always been told, and read everywhere, that all medication except HC should be taken after the blood draw because a regular and reliable supply is so important. HC has a short halflife. But I take my first dose at midday, so I cannot comment beyond: how does your son feel on the day his first dose is delayed?
Hi milupa my son has Hypopituitarism and Septo-Optic Dysplasia. i guess if you are okay until mid-day then I have not been doing things too badly for the past 20 years with the Hydrocortisone. My son does not seem any different to his usual Levo undertreated self when he has blood taken.
Hi j_bee - apologies, I should have read more about the background for your question! Having cared for your son all these years you are an expert on his conditions and medication! You did not need me telling you about the halflife of HC
Trust your experience and observtations and do what so many here do when it comes to endos: Smile, nod, ignore.
Imhope you had a better experience, and results, with the private consultation.
It must, at times, be very frustrating, to deal with carers and GPs when you, clearly, know better! I wish you strength and humour!
Hi milupa , I love your advice about, smile, nod, ignore. Very good advice at that as we know that all they want to see is TSH above 1 and we don't mind it being under. I feel as if I have just added another layer of command over my head and receive more unhelpful advice and orders what to do! The private consultation was quite good, with much better advice, but does seem to have put the back up of the NHS Endo. I only wish we could go to the private consultant at his NHS clinic but it is in the next door Health Trust.
Thanks for your good wishes. Strength and humour are our mainstay, we just need better T4 to uphold the strength!
Hi j_bee, I have never understood the odd relationship between the NHS and the private sector. I saw specialists at St Mary's/London who had their private surgeries in the same building but I had to chose: completely NHS or completely private. Why does the NHS not welcome every expense they don't have to pay?
The German system, whilst expensive, allows me to see whichever doctor I chose and to mix and match private and insured. My GP for example handles my saliva and hormone tests privately but I get prescriptions based on those results (HC for example) insurance paid.
I am impressed that you find the energy to look after your own and fight for your son's health! I hope you often get the chance to recharge those batteries...
milupa are you in Germany? We have friends in Germany and their healthcare is taken care of much quicker and more efficiently than ours. I would much sooner have the German model of healthcare, than the American one it looks like we might be following! My son is now in supported living only because our Levo was changed and I could no longer keep up with looking after him completely. This is also a road not to go down unless you really have to. Batteries recharged until the next squabble with Endo.
j_bee - yes, after 30 years abroad, 20 of them in London, I'm back in Germany. In Berlin with my Brit husband. One of the main reasons for the move was healthcare! I found a fantastic, dedicated GP with a year long waiting list who I am convinced saved my life. I now self treat and self diagnose with the support of a local GP. Endos are just as unbearable here though. It is important to point out that we pay 17% of income (half employer, half employee) into the pot, plus contributions to old age care, on top of taxes, church tax, unemployment insurance and pension contribution.
Oh. and the mainstream docs here are just as TSH fixated. I had my DIO2 genetic test done in the UK (bad converter T4 to T3) and still they try to push levo but I have no problem to get my Thybon prescription.
I hope you will come across a rare doc who looks at your son, the person and does his best for him, like you do! I wish you luck and strength.
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