Are you in Biobank?

[bluejourney]

I am in Biobank, and have just completed their sleep questionnaire. I am hypothyroid, and my sleep has been terrible over the last 30 years.

In December, by serendipity, I got a raise in Levothyroxine. I had an endocrinology appointment, and saw the registrar, as the consultant was too busy to see me. He agreed that at my weight, I was on too low a dose, and raised it straight away. I informed my GP. The consultant subsequently said my dose of 75 mcg was adequate, and I didn’t need the raise. Too late! I’d already done it, and the GP said carry on with it, as I felt so much improved on it, including better sleep.

Going back to the Biobank questionnaire, at the end of it there’s a 1000 character opportunity to give additional information, so I gave them a bellyful of how the NHS doctors had kept me ill and very sleep deprived for years, with an inadequate dose of a very cheap drug, because they are so bad at treating thyroid disease. The difficult bit was limiting it to 1000 characters!

If you are in Biobank, and have had similar experiences, maybe you could do the same. Hopefully some researchers somewhere will take notice.

[helvella]

Not in Biobank.

But complete agreement that levothyroxine can help sleep!

(Not everyone - so I'd reword that as "adequate thyroid hormone treatment" to cover all.)

[bluejourney in reply to helvella]

Biobank is a great resource for researchers all over the world. It helps me feel I’m doing my bit. I was pleased they wanted to get information about people’s sleep. There’s been more research lately on what sleep deprivation can do. I’m certainly feeling a lot better with more Levo, more sleep and am at last able to get a better circadian rhythm, making life much easier.

[crimple in reply to bluejourney]

bluejourney, I am also in Biobank and since joining have been through the journey to have T3 added to T4. I now sleep much better. I have a fitbit and can check each day. I can guarantee at least once per week I won't get a good night but I don't worry about it. Getting the correct levels for me definitely helps sleep. Like you I always "go to town" at every opportunity to complain about the awful way we thyroidies are treated or not!! Yes 1000 characters is not enough. Final thought, have you checked all your vitamin levels, especially B12?

[bluejourney in reply to crimple]

Hi Crimple. Thanks, yes, vitamins and minerals all up to speed. What’s made the most difference is the raise in Levo. Even the RLS and leg cramps have improved, which also means I get more sleep. Gut issues still cause sleep problems though if I don’t avoid trigger foods. I’m glad you’re sleeping better too. You so appreciate a good night’s sleep when you’ve gone years with insomnia. The Fitbit sounds a good idea.

[TiggerMe Ambassador]

Biobank sounds like a great idea, what does participation entail?

Dizzy444 crimple

[bluejourney in reply to TiggerMe]

Hi Eeyore. I was contacted by Biobank in 2006 when it was started, to ask if I wanted to volunteer . They contacted lots of people. They were wanting people of a certain age range to donate their DNA for long term research. As well as taking a blood sample they check other things like your weight, BP, eyes, exercise tolerance. Every now and again they send you questionnaires , depending on what research they’re looking at. It’s all anonymous, but they follow people’s health and death profiles to help medical researchers from all over the world. If you wanted to volunteer, contact Biobank to see what the process is at the moment. Some people don’t like the thought of giving their DNA, but I thought it was worth it in the cause of medical progress. Lots of new treatments have come out of it already.

[TiggerMe Ambassador in reply to bluejourney]

Looks interesting, the organ scan etc... they don't seem to answer the phone so I've emailed 🤗

Us 'special' people ought to put ourselves forward 😆

[Dizzy444]

both myself and oh are in biobank, I haven’t done the survey yet, I will complete and also mention poor treatment. Not only is my sleep affected but also poor hubby who gets disturbed by my nocturnal lifestyle

[bluejourney in reply to Dizzy444]

Luckily I don’t have to worry about the sleep of my OH. Nothing disturbs him. Off like a light, sleeps like a log. Quite sickening.

[Achilles_Pain]

I have had sleep issues recently, too. Partly stress (my 90 yo dad was ill and I moved in with my parents to help look after him, but he's fine now and I'm back home), but partly because even tiny changes in levo dose can make a difference, and also the levo brand has an impact.

I'm on 100 mcg a day, with an extra 25 mcg 4 times a week (Mon, Wed, Fri and Sat, recently increased from 3 times a week - Mon, Wed, Fri) and that small change made all the difference to pretty much all my symptoms. The GP is fully aware and supports this method of slowly increasing my dose ("you know your body and how you feel better than we do"). 100mcg a day wasn't enough and my symptoms were returning but jumping from 100 to 125 a day was too much and made me ill. I started adding in the extra 25 once a week, then twice, then three times. Needed to do the same moving up from 75 to 100, too, a few years ago.

As to the brand - some just don't work for me and last month the chemist gave me a different brand for the 25s. I thought it wouldn't matter as it's only a small proportion of my dose, but for the last month and a half I've been waking up between 3:00 and 3:30 and not getting back to sleep. Picked up my new prescription last Friday and after just two doses of the brand I'm used to (Fri and Sat) I'm sleeping better already - didn't wake up Sunday until 5 and today until almost 6.

Never heard of BioBank - with all my allergies (nothing major - cats, dogs, pollen, that sort of thing) plus my dicey thyroid and caffeine and gluten intolerance (not coeliac) they'd have a field day with my data!

[bluejourney in reply to Achilles_Pain]

Hi Achilles_Pain. Yes I agree the fine tuning of dose is very tricky. You wouldn’t think such a tiny bit of tablet would make so much difference. Glad you’re working out what’s right for you.

[connyankee]

Hi bluejourney: I am not in Biobank because I live in Tennesse in the USA. I've never heard of it until you mentioned it. I was on Levothyroxine for a number of years until I insisted that my Endo switch me to Synthroid (more expensive but it is better for older--64--Thyroid patients because it's more pure (synthetic) hormone. I'm glad that you had an uptick in your health. I always sleep. That's my problem, but I'm now doing research into my cortisol levels screwing with my sleep. You UK folks seem to have about the same care we are getting in the US. We have to demand the best treatment from our Doctors, but we certainly pay $$$ for it unless we have incredible insurance through an employer, which I do not. When patients reach optimal levels in their labs (you can look up Optimal levels on the internet) everything gets better including sleep, so you were fortunate to have that serendipitous day with your Doc. I'm very pleased for you. I hope it lasts a very long time.

[bluejourney in reply to connyankee]

Hi connyankee. Yes, sleeping too much isn’t great either. I hope looking into your cortisol goes well. I’ve found the Genova Diagnostics salivary adrenal profile test useful in the past, and they do an add-on Cortisol Awakening Response which is interesting if you have trouble waking up.

[connyankee in reply to bluejourney]

I'm reading a book by Alan Christianson, Adrenal Reset Diet. One day of following his plan has already made a huge change.Feeling very hopeful! For once!

Cheers!