My son has lots of hypo symptoms, and is on the long journey to diagnosis.
His chronic symptoms have been back and muscle pains. He also has definite adrenal signs and symptoms although synacthen test is "normal". He seems to be managing his energy better using Nutri Adrenal at times, but is really struggling in his high power job as his memory is increasingly unreliable.
He has always had some concentration and focusing problems - at school his tutor unhelpfully nicknamed him Captain Vague even though he was bright.
He is Vit D deficient - below 30 I believe on last bloods and the GP has merely advised him to buy a supplement. I have given him some fultium to try. He is waiting for coeliac investigation results, although the surgeon taking biopsies says he thought it looked unlikely.
Any tips on vits minerals which might be suspect would be interesting.
Thank you!
Written by
sarahstevenson
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Many thanks Marz, links much appreciated, I shall pass them on. Hoping you can enjoy some sunshine hurrah for free Vit D
I had terrible brain fog and absent mindedness while my p anaemia, severe vit D deficiency and coeliac remained undiagnosed by the nhs + i was severly undermedicated for hashimoto's.
All these symptoms disappeared when i medicated myself at adequate ndt doses, injected myself at adequate b12 doses (as opposed to the nhs rations), stopped gluten and took a high dose d3 supplement (it is unlicensed but available privately - about £12 from superdrug although another pharmacy quoted £200)
There are different types of coeliac, one type will not show on the blood tests. I was diagnosed by 2 private specialists while the nhs maintained it was all in my head. As soon as i cut out gluten, the difference was amazing. It is a real drag, but you get used to it. Anyone who is hypo should be gluten free as a rule
Many thanks Blue, definitely think some high quality supplements are best way forward especially Vit D and B. I am trialling gluten free at the moment and agree it's worth the change. Do you need a private prescription for B12 injections and /or NDT? Pleased to hear you are doing well with your changes.
If you have pernicious anaemia you can get b12 shots on the nhs, but they will ration you to a shot per 3 months. So i get my own, either abroad without script, or on private script and self inject. Cannot be doing with the nhs anymore.
NDT i get online without script - you will need a private script if you want it in UK, if you do not have an online source that is.
Hi Sarah, blimey, you could be describing my son, I call him 'johnny head-in-air'! He's just waiting for coeliac results too, although 'looks normal' was uttered during the procedure.
Interesting, thanks for posting, he needs to phone for his results on Tuesday, as he forgot yesterday haha! Will let you know outcome - hope your son's results are helpful, tricky path in't it
Hi sarah, It sure is tricky. He's 40 now but has been suffering since his teens. I'm trying to push him now to stop accepting the 'results are normal' spiel. He sees the specialist next week for results but I won't hold my breath - unfortunately he won't let mother go with him.
Neither will mine but Dad can sneak in sometimes - at the moment getting results long distance as he is registered with our GP but working away from home town - all more fun!!
This is a link re vitamins. Your son's Vitamin D is too low it should be around 70. If supplementing it should be Vitamin D3 and not D2. Vitamin D is really a hormone:
Thank you Shaws, helpful as always! I have D3 and methylcobalamin in stock so shall pass them to him when we see him next. Just need to remind him to take them
My youngest son is now 35, and has just finished his Masters in Occupational Therapy - he has a good job now working in a London Hospital - BUT - he had all the symptoms you are describing - he used to leave home and then within 10 mins he was back again as he had forgotten something - but this would happen 5 times with an hour - seriously. He would end up in tears, as he could'nt believe his own inaptitude. He was a very strict fierce vegetarian -( the kind you would not like to encounter if you were eating a sly sausage) and when he first went to Uni he very quickly developed mental health problems and self harming - came out as being gay, and when I said that it was OK with me, that seemed to settle him.
Got his first degree in Art and Aesthetics, and bumbled on, always had a job and worked hard, went around the world. Then he said he wanted to become an OT, and I thought"Oh Well - here we go again..." but I was completely wrong. The first thing they did at Uni was test him for dyslexia and found he was wildly so, and also dyspraxic - this changed everything - they gave him all he needed to succeed.
People tend to think that The 2 Ds are about reading writing and numbers, but it affects EVERYTHING about your life. Put that together with our experiences with thyroid issues on top of this and it becomes a minefield - so do look at this as well. He was 28 when he was finally diagnosed with D+D - all those years he could have been helped - but nobody really knew. He eats fish now and has to admit that he feels better. Just thought I would share this with you. XX
Hi Sheenah some definite similarities here. Son diagnosed dyslexic at 15 just pre GCSE's. Decided he didn't want to go to uni so worked after A levels saving all his money for uni at 20. He struggled greatly with fatigue and muscle back pain throughout the course, which completely compromised his social life. He qualified with a First in computer science and has worked ever since. He is still trying to find a social group which doesn't involve late nights or alcohol. Thanks for sharing your son's story, it's interesting to see the parallels
My son works on his classic cars and does charity computer programs - both a bit light on social interaction, he loves company but finds crowds exhausting. . . a bit catch 22 at the moment.
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