Where's it gone?!: I've been feeling mainly back... - Thyroid UK

Thyroid UK

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Where's it gone?!

Mrsmoon profile image
35 Replies

I've been feeling mainly back to normal, lots of energy and drive and then the last few weeks no energy, craving sugar and feeling low. I take 175mg of T4 and 80mg of T3 (been on this dose for 8 months)

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Mrsmoon profile image
Mrsmoon
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35 Replies
RedApple profile image
RedAppleAdministrator

Oh that's bad news Mrsmoon :( It's the worst time of year for low vit D levels to hit us... could that be contributing maybe?

Mrsmoon profile image
Mrsmoon

I'm not sure. I take a daily Vit D. Also feel rather upset :-(

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

Low vit D level has such a vast range of effects, but low mood is a very common symptom. We need far more sunlight than we can possible get at this time of year in the UK. What dose of D are you taking... can you get your level tested... maybe it needs to be increased.

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

Do you use daylight bulbs in your home? I have them all over the house now, and that has helped tremendously. I had never experienced SAD prior to thyroid going completely wonky, but every winter things got worse until I filled my environment with bright white light. SAD lamps can also be helpful, although many are rather expensive for what they are.

Mrsmoon profile image
Mrsmoon in reply to RedApple

My Vit D dose is 25mg. I don't have daylight bulbs. I shall look into it. Thanks

Mrsmoon profile image
Mrsmoon in reply to Mrsmoon

Or maybe it's not mg maybe a ug or something. Sorry don't recognise the sign.

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

I think 25mcg equates to 1,000iu (I'm more familiar with iu for vit D). In which case, this may not be enough, particularly at this time of year. The dose required is very much an individual thing, and does partly depend on your body size, and how well you absorb it. Some people need as much as 5,000iu daily.

Take a look here for some info.

vitamindcouncil.org/about-v...

If you can get your level tested quickly, that would be good to do. But in the meantime, if I was you I'd be tempted to try a double dose for a while to see if it helps.

Mrsmoon profile image
Mrsmoon

Oh dear I'm taking 25 iu nit mg which based on your comments may not be anywhere near enough. I'll get my levels checked if doc agrees to it.

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

If doc won't do it and you can afford £25, I'd go with a home finger prick test from these people vitamindtest.org.uk

In the meantime, if those tabs of yours are definitely only 25mg, then an immediate increase up to at least four a day would make sense :)

Mrsmoon profile image
Mrsmoon in reply to RedApple

Tis done :-/

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

The test... or the extra large dose? Whichever, let us know how it goes and if it helps :)

Mrsmoon profile image
Mrsmoon in reply to RedApple

Sorry, I mean the extra dose.

Mrsmoon profile image
Mrsmoon in reply to RedApple

Will let you know also about test as soon as I've managed to go. Thank you for your support. You've saved my evening :-)

RedApple profile image
RedAppleAdministrator in reply to Mrsmoon

Fingers crossed it turns out to be your answer and that you feel much better very, very soon :)

Sorry, given the time of writing, I probably should have mentioned this before you took those extra tabs.... some people find if they take vit D too late in the day it can keep them awake at night. Really hope that doesn't happen for you tonight, but if it does, at least you'll know what the cause is and what to do about it (i.e. take the vit D early in the day).

kavidacat profile image
kavidacat in reply to RedApple

The leaflet with my Vit D (Ad-Cal) Vitami D with Calcium, says to take it not less than 4 hours after you take your thyroid medicine. Hope this helps. It is apparently to do with the absorbtion.

Hope things work out better for you.

RedApple profile image
RedAppleAdministrator in reply to kavidacat

Yes, this is very important advice to follow . it is because the calcium in Ad-Cal will be block the absorption of your levothyroxine.

in reply to RedApple

RA - Q re daylight bulbs below...!

Louise

xx :-)

RedApple profile image
RedAppleAdministrator in reply to

Ta :)

Mrsmoon profile image
Mrsmoon

*not* even

Mrsmoon profile image
Mrsmoon

RedApple no worries. Can't imagine not sleeping based on how I feel right now. If your right I'll be more than happy.

about Vit D - I thought it may be that keeping me awake so I take my drops (which I found to be much better than the tabs) first thing with milk - but it wasn't that as I'm still an insomniac!

Another member kindly posted this link indicating that 125 nmol/L is optimal (50 USA measure) go to page 3 - e.g. my last test was 50nmol/L so need 4000iu + for now. J x

Mrsmoon profile image
Mrsmoon in reply to

Thank you.

in reply to

oops - the link...

grassrootshealth.net/media/...

meant to say as well - take it/milk away from Levo (sorry but I only take Vit D, no thyroid meds)

Tiggysmummy profile image
Tiggysmummy

Red apple, sorry to poke my nose in!!! But where do you buy daylight bulbs? I have never heard of them and really do think that's what I could do with , i am taking lots of extra supplements but I'm very new to this x

in reply to Tiggysmummy

Hi

Just a pointer. If you want to reply to someone directly, you have to click on 'reply to this', otherwise they will not get an email telling them that you have responded.

Louise

xx

RedApple profile image
RedAppleAdministrator in reply to Tiggysmummy

Hi Tiggysmummy, No need to apologise for butting in... that's what this forum is about. We're all here to learn from and share experiences with eachother :)

I must first stress that if you are suffering with low mood, daylight bulbs on their own are not a miracle cure :) It needs to be a combination of the right amount of thyroid medication, a good vitamin D level as well as lots of bright light. And some people do need the more intense treatment that SAD lamps can give.

I suggest that before you spend money on any lighting, you first familiarise yourself with the condition known as Seasonal Affective Disorder - SAD. Here's a couple of links to get you started:

sad.org.uk

en.wikipedia.org/wiki/Seaso...

This company makes good SAD lightboxes (you can also buy their products in shops and other online places)

lumie.com

Daylight bulbs that you can use in your ordinary light fittings are available on Ebay and Amazon. Do ignore the ones that look like ordinary incandescent lightbulbs coated in a blue colouring, as they are completely useless for helping mood problems!

Tiggysmummy profile image
Tiggysmummy

Red apple, thank you for that info,my mood has been low in the winter months for years my doctor started treating me for depression with floxatine and about 18 months ago I started suffering with severe anxiety... Life's been awfull my daughter is only 6 and my son is 3.5, I was extremely ill having my son in 2009 and he was born 10 weeks early and I needed a blood transfusion(4 bags) when having him, I honestly think that's when I became ill during my pregnancy as I have never been the same person since :-(( I feel my personality has also changed. Out of the blue a new doctor at the surgery asked me to have a blood test and 4 days later got a phone call asking me to come to the surgery, my blood test showed free t4 at 2 and TSH AT 100, I can honestly say last year was a complete struggle and I got severe shingles in June and have not worked since July as I'm constantly in pain, headaches, brain fog that feels more like altzimers!! Just hoping to start feeling better soon as feel it can't get much worse xxxxx

RedApple profile image
RedAppleAdministrator in reply to Tiggysmummy

Having once been in a similar state myself, I absolutely understand how awful you're feeling. Many people here have also been down a similar road. Thank goodness you have finally got the thyroid diagnosis and started treatment.

I wish I could promise you a speedy recovery, but unfortunately it doesn't work like that, especially when you've been ill for so long and left without the right diagnosis and treatment.

It will take time to get to the appropriate dose of thyroxine, and then time for your body (and brain) to go through the necessary healing process. Insufficient thyroid hormone over a long period of time means that lots of damage has been done, and it can't be repaired overnight. As well as the right medicine and supplements, this illness requires bucket loads of patience.

The good news is that you are amongst friends here who totally understand what you're going through. Often, family, work colleagues etc have no clue how much you have to cope with and how badly this illness affects us, and it can make us feel very lonely and misunderstood.

So keep popping in to this group to read and learn from what others are saying, and of course, asking your own questions. It's all very confusing and seems so complicated when you're new to it all and trying to get your befuddled brain around everything. But the bottom line is that you can and will get better, and people here will help you along the way :D

Tiggysmummy profile image
Tiggysmummy

Red apple, thank you for your reply and kind words xxx

auldreekie profile image
auldreekie

Sorry to but in - but I would check out B12 levels - see Guys new test gsts.com/new-tests.html

if B12 is low (serum test at GP is of no use it doesn't show bio availabiliy as the test above does) then iron cannot be used, this would make you feel exhausted.

I'm in the process of getting my result from guys ...

heyjude profile image
heyjude in reply to auldreekie

Is the test done by post or do you have to go to guys?

auldreekie profile image
auldreekie

b12d.org/book/export/html/1398

I found this which I think helpful re B12 - explains more on why serum levels can be normal but active B12 is running out and patient has symptoms.

auldreekie profile image
auldreekie

Hi Heyjude, I went to Guys (denise.oblein@gsts.com is the contact), you need a GP referral letter, and it costs £18.

Maybe the private labs (eg Genova) offer it? I've not researched it privately.

Are you a long way away from London?

auldreekie profile image
auldreekie

tdlpathology.com/test-infor...

I found this!

auldreekie profile image
auldreekie

there are contact names here -

tdlpathology.com/contact-us...

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