Where am I up to ?: Well after getting my BH test... - Thyroid UK

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Where am I up to ?

Kitti1 profile image
25 Replies

Well after getting my BH test results I've started self medicating with t3. Its only been 2 weeks but I'm really not feeling any better, am I being impatient ?

I was taking 100mg of levo when tests were done

TSH - 5.9 0.27- 4.2

T4 - 11.92. 12-22

T3. - 2.68. 3.1 - 6.8

I started on 6.25mg of t3 just over 2 weeks ago. In the last few days I have a few times had roughly a 1/3 of a tablet so approx 8mg.

About 10 days ago I also upped my levo to 125mg, which was my original dose before doc messed about with it.

I've also upped my b12 from 1000mg / day to 2000mg / day, as it was a bit low in range. I've also started taking 3000iu vit D3 as it came back insufficient. I'm taking b complex which includes a good amount of folate and that level was just below mid range. And my iron was good, top of the range, without supplementing.

My body temp has gone from 35.7 to 36.6 in the last 2 weeks, so a good sign. But I'm not feeling any better 😞. Totally shattered today. I had bad brain fog yesterday, went to step daughters yesterday to do a meal ( I always cook ) and I really struggled to figure it all out. Today I feel like I really over used my spoons and shattered 😞 My joint pain also seems worse ? At times a lot worse.

To confuse things further I've been having increasing problems in the tummy department. I've been a strict ceoliac for 20 years. But lately seem to be getting regular symptoms of contamination which most of the time is impossible as I'm so careful. Separate toasters spread ect. I'm guessing part of my fatigue could be possible auto immune response to a food stuff my tum has decided not to tolerate any more. So may have to give dairy free a go 😠.

Do you think I can up the t3 to 12.5mg a day in 2 doses, or is it a bit soon ?

Many thanks

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Kitti1
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25 Replies
SeasideSusie profile image
SeasideSusieRemembering

Kitti, I know it's hard but we must be patient and take it slow.

I would have suggested 6.25mcg T3 then increase after two weeks to 12.5mcg.

You've increased your Levo as well and you need a good 6 weeks for that to be fully effective. Depending on how well you convert, you might find that will increase your FT3 a bit as well.

Personally, I would increase to 12.5mcg T3 and keep your Levo dose at 125mcg and leave it at that now for another 4-5 weeks. If you still feel bad, maybe increase T3 to 18.75mcg, and possibly 25mcg after a further 2-3 weeks then I would retest FT4 and FT3 then and see how things lie.

Just my suggestion, as you know I'm not medically trained but have gone the Levo + T3 route. It tooks months of tweaking thyroid meds and optimising vitamins and minerals before I really noticed a difference.

SeasideSusie profile image
SeasideSusieRemembering

PS Kitti, I've just looked back at your other post with your results.

Vit. D ( 25 OH ) 32 L

I think you should do as Clutter suggested and take 10,000iu D3 daily for 6 weeks then reduce to 5,000iu daily, and retest as per her suggestion. 3000iu is nearer a maintenance dose, I take 2000iu daily five times a week as a maintenance dose.

Are you taking D3's important cofactors, K2-MK7, magnesium and others mentioned here vitamindcouncil.org/about-v...

**

Vit B12 344

I would have suggested taking sublingual methylcobalamin lozenges 5000mcg until one bottle is finished then reduce to 1000mcg as maintenance. Plus a B Complex to balance all the B vitamins.

Kitti1 profile image
Kitti1 in reply to SeasideSusie

Thank you for your response SeasideSusie . That's good to know that its not too soon to raise the t3. I'll give that a go this week 👍.

I'll leave my levo where it is definately. And I suppose I know its too soon to feel the benefit of upping that to 125mg. Yep just being impatient 😂

I think your right I should follow Clutter s advice. It just seemed a lot. I've not started on any K2-MK7 because I was worried about it making my blood even thicker, its already like treacle.

I've had new patient full bloods including thyroid done at my new surgery that will be back this week. So I'm hoping to get to see the doctor and will have a chat about my thick blood regarding supplementing with K2-MK7. ( Only on day appointments available for the doctor I want to see, she comes highly recommend. The receptionist tried to put me off by saying - Its VERY hard to get to see Dr Harris. But I'll do my best.) Although she'd have to be exceptional to know much about supplements I guess.

After saying that I've not read your link, so will do in a mo.

I'll also get some sublingual b12 5000mg as soon as.

Many thanks 👍 Your a star ✴

bluebug profile image
bluebug in reply to Kitti1

The maximum dose of vitamin D3 recommended by the Vitamin D council and my local NHS trust is 10,000IU daily IF you have deficiency issues.

This is the maximum dose research has shown at which side effects are not seen at. Any higher than that, then some people have problems with calcium and/or phosphate/alkaline phosphatase levels plus other side effects.

BTW I'm on 2,000IU 7 days a week as a maintenance dose. When my level was around 60 I was on 6,000IU per day. So unless your body can also make vitamin D via sunlight 3,000IU is too low to rise your levels.

Kitti1 profile image
Kitti1 in reply to bluebug

Many thanks bluebug . I was sort of factoring in the limited sunlight we get in the north west as I'm out with my dogs for usually about 1 & 1/2 hours a day. I know that at this time of year even with Manchester's leaden skies I'm still getting a decent amount of exposure.

But I didn't know that that is not guaranteed ? Do so people not convert it well ?

I'll definitely up my dose and get some k2-MK7 asap. 👍

bluebug profile image
bluebug in reply to Kitti1

The problem with living in a city is that it is polluted and pollution apparently limits the amount of UVB rays that gets through. In addition if the sky is leaden the amount of UVB getting through is limited. Poor summer weather has been blamed for the increase in vitamin D deficiencies in the UK in general.

Added to those is the fact that as you get older many people find they have difficultly converting.

Anyway I was advised by someone when I had severe deficiency problems to get my level up as quickly as possible to adequate level to avoid damaging my health further. Even my GP agreed with that when I was taking more vitamin D3 than the guidelines recommended after my loading dose. My local guidelines recommend 1,000-2,000IU as a maintenance dose but it is on the premise that the loading dose gets your level to 75nmol/L or greater.

I can understand your caution as there are posters on here who have been told off by their endos who believe taking more than x amount of vitamin D per day is dangerous. X can be anything from 800IU to 5,000IU. However different areas have different guidelines and the guidelines aren't always written by the endos in that area but other specialists.

Kitten1978 profile image
Kitten1978 in reply to SeasideSusie

I agree with SeasideSusie although I take 5000 IU of D3 daily as maintenance dose unless I spend at least 1hr a day in a sunshine. I took 10 000 IU daily for 3 months when I was deficient.

spongecat profile image
spongecat

Hi Kitti1 .

There are two forms of vitamin K. K1 is the one that we are familiar with as the one that helps blood clotting. K2 has different function:

authoritynutrition.com/vita...

Your doctor might not know about the vitamin D3/K2 axis, it's not really part of mainstream allopathic medicine yet, it's still more in the realms of functional medicine.

Kitti1 profile image
Kitti1 in reply to spongecat

Thank you very much for the link. It sounds like my worries re vit k are mistaken when it comes to K2 and blood clotting. I hope you can understand my caution and worries over the effects it may have on my blood.

Many thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Kitti1

Kitti, a few months ago I did a lot of digging around to find some information about Vit K and made this post, have a read through the articles linked to and see what you think

healthunlocked.com/thyroidu...

And just as a personal anecdote, and I may be strange (not hard 😁 ) but I discovered that if I leave off my D3/K2 combo supplement for a few days before I do a fingerprick test, then my blood tends to flow better.

Kitti1 profile image
Kitti1 in reply to SeasideSusie

Thank you so much for that SeasideSusie So I can feel confident on a Low dose I think. I remember reading your anecdote re leaving off those supplements before blood tests. That combined with a couple of other members voicing words of caution. But I hadn't thought of asprin ! DER ! When I was caring for my parents I always made sure they had their asprin. So why that hadn't occurred to me I don't know ?

Have you ever considered setting up in practice as a vitamin & mineral consultant ? Your extent of knowledge is mind boggling ! There's money to be made there lol ! On a more serious note what the people of this site would do without your wealth of such well researched knowledge is beyond me. Heart felt RESPECT (- I think that's what the kids say these days ; ) )

Saggyuk profile image
Saggyuk in reply to Kitti1

Just in case of interest, I've also had increases in gluten reactions recently. I get blisters that pop up in less than hour that have been proven under biopsy to be caused by gluten and actually even asked on coeliac forums a while ago trying to work it out as was something I was taking nearly everyday. I thought at first it was the T4 I had just started taking but anyway, I stripped everything back and slowly added things back in. I stayed on the T4 and so was definitely not the problem. Many more chocolates are seemingly causing me issues it turns out especially any cadburies - they have now changed their website now states "doesn't deliberately contain gluten" rather than saying gluten free.

So since removing them, it got better and then I added vits back in, prescribed iron first which was fine and then added two others and one of them is definitely the cause - so it's either the solgar B12 or the thorne vitd with K2 oil. I've now stopped taking them both again and blisters gone away again and will add them back in one at a time now to determine which. I think I've possibly reacted to Thorn basic b a while ago too but have not yet added it back to confirm as gave up these until I could get my thyroid levels sorted as my body didn't seem to want the vit levels dealth with until it could process them better. It might be that the other two were the culprit rather than this though. Whatever it is, it's definitely a very tiny amount, as normally I react instantly to even a crumb but this seems to be fine instantly and instead reaction seems to take a day or two and then increase each day after that.

Maybe you need to do the same and strip everything back again to recheck things you've eaten for a while and take for granted or new vits - anyway just a couple of suggestions :-D

Saggyuk profile image
Saggyuk in reply to Saggyuk

One other possibility - you haven't gotten new pets recently lol?

Kitti1 profile image
Kitti1 in reply to Saggyuk

Lol No I think 3 dogs 7 cats & the OH's 4 dogs here most of the time is quite enough 😂

Why ?

Saggyuk profile image
Saggyuk in reply to Kitti1

That's a lot of pets lol! It was only because some people don't think about this area. I got given three degus who live in my kitchen so didn't want gluten everywhere (plus they're not supposed to be eating gluten anyway) so went out of my way to find grain free feed. I started reacting almost immediately and it didn't click for two weeks - the blinking hay was wafting around my lovely GF kitchen and where they gnaw everything into dust, I was getting hay dust all down my nose when cleaning and getting it out of the bag also lol. Unfortunately, they are now eating and even sleeping and PEEING on a very EXPENSIVE gluten free hay lmao :-(

Kitti1 profile image
Kitti1 in reply to Saggyuk

Thank you so much for that Saggyuk Apart for the addition of my b12 & D3 nothing has changed. I'm sure they said gluten free but I'll double check.

But I think your right, my reactions are very typical coeliac reactions. From the slow creeping vague stomach ache that your not sure where its come from. To some of those full on allergic reaction ones. I don't get blisters but I do get it where within 15-20 mins of eating my stomach starts to blow up like a balloon with crippling cramps with whole body chills covering me goose pimples, with a bad headache and feel sleepy. 3-4 boscopan 3 ibuprofen and 1-2 hours in bed later I start to feel better. But I know that then lasts days / weeks with intestinal soreness and fatigue.

Dairy milk ? NNOOOO ! Love dairy milk and I have been eating more than normal. After finding out I was far from optimal my quite strick ( weekdays ) low fat healthy diet went out of the window quite a bit.

But now I'm getting closer to optimal I know the chocolate and biscuits ( Asda's gf triple choc cookies mmmmm ) have to bite the dust 😞.

I've just thought, I have changed from chicken thighs to chicken breasts more lately. I bet that's playing a part. I can't eat eggs and occasionally chicken breasts set me off. My theory is because they are fed on a high gluten diet and the gluten proteins can accumulate in the breasts & eggs but for some reason not the legs. As I said its my theory. Leg meat has never set me off but breasts do sometimes. I've really gone off leg meat though 😕.

Thank you for your advice. I think stripping back my diet and slowly introducing things is the best way forward. 👍

Saggyuk profile image
Saggyuk in reply to Kitti1

Yes, one of the B12 and Vit D say gluten free but the problem is, they only have to go to 20 parts per million which I can't handle so might still be legal to be classed as gluten free - can't have anything with any gluten, even barley malt extract or wheat codex so can't even eat salt and vinegar pom bears :-( Also if they are american, they have lower standards in regards to what can be classed as GF so not sure if that factors in. Thing is, I also get stomach bloating etc but the blisters are the only thing that definitely can't be caused by anything else so they come quite in handy actually lol! I'll let you know which one it turns out to be when add them back.

I do struggle with eggs recently too - don't get the typical blisters but always feel a bit urghh afterwards. Can eat a family friend's chicken eggs easier though.

If it helps, because of loss of sales, cadburies did mention bringing production back to the UK with original recipe - because of quality control issues too so might be worth trying them again if and once they do. I've switched to kinder choco bons in the meantime and they're lovely, you should still have a few treats every now and then lol :-)

Kitti1 profile image
Kitti1 in reply to Saggyuk

No salt & vinegar pom bears 😕😞. I know I can't do salt & vinegar crisps, and malt vinegars or barley malt extracts like you.

When we were in France we had chickens. I tried to find the lowest gluten grain mix that I could in french. Also giving them lots of maize and sunflower seeds curtsey of the local farmers fields. They had a large run so an abundance of insects & greenery. But unfortunately they still didn't fully agree with me. Better than the super market stuff though.

Speaking of which we had one of our chickens in the kitchen twice. It was hutching up a lot so we brought it in to converless. The dogs kept a very close eye on it. But not something I would recommend as they really smell 😮😂 !

And I agree you've got to have a treat now and again. I didn't have the energy to do a proper meal so just made my favourite, a bacon butty. With real butter & nice seeded gf bread mmm my fave 👍

Thank you so much for all your info 😀

Saggyuk profile image
Saggyuk in reply to Kitti1

Co-op sea salt and white wine chardonnay vinegar crisps are good and no malt or barley to be seen :-D

Yes, I used to have chickens too, they were crazy about trying to get into our house to sit with us and it was their mission. You'd see one suddenly sticking there nosey little beaks through the cat flap and if they couldn't see you, they would shift themselves up with their hind legs and squish their oversized bodies through, hovering on a balance point with legs crazy in the air for a while until they got the strength to try and wiggle more and then land on their heads (no arms to break the fall lol) and then run happy as larry round the house lol. They were so lovely, loved being cuddled and what not.

Enjoy your bacon butty :-D

Saggyuk profile image
Saggyuk in reply to Kitti1

Hiya Kitti

Just so you know and in case one you were taking - I worked out it was the Thorne Vit D and K2 oil - added them all back in slowly away from each other and started back on the vit d yesterday - blisters after an hour. It states mixed tropherols which can come from wheat germ. It's considered to be gluten free because of the processing like vinegar and barley malt extract but you're like me and react to these kind of things so thought I'd come back and let you know :-) x

dang profile image
dang

Just wanted to jump in in case nobody mentioned this. I saw you say that your iron was top of range. That's actually way too high. Iron should be halfway in the range. High iron can cause a lot of health problems.

It can also be a sign of Hereditary Hemochromatosis:

medicinenet.com/script/main...

Kitti1 profile image
Kitti1 in reply to dang

Hi dang thank you for that. My iron was 147.9 20-150. I don't supplement ( and haven't since my early 20's ) I'm now 48 and 15 years post hysterectomy.

That's got me quite worried. A few years ago I lost my dad to heart failure. I know he had heart arrhythmia, but not sure which kind. He was one of those people who was never ill. Not over weight, never drank to excess, ex-smoker but not copd. He started having heart attacks in the August and died in the December at just 74.

I did have a liver scan last summer which came back 'clear'.

I am hoping to see my gp this week so will definitely discuss this also. Many thanks

jgelliss profile image
jgelliss

I would allow your body to acclimate to changes . You might want to try taking less T3 . To many changes at once and often is not recommended . You need to make one change at a time . Hypo and Hyper symptoms can be the same . You might want to add Selenium to your nutrients . You should try to journal your symptoms when changes are being made . For example basal temperature , blood pressure , pulse , weight , dry cracked heels , etc.

Kitti1 profile image
Kitti1 in reply to jgelliss

Thank you. I think you may be right I'm really not feeling good today.

I was originally on 150mg of levo for 25 years, but still symptomatic on that dose. Then some clever doctor decided to reduce it to 125mg and I've really struggled since.

The last few months have been a bit of a roller coaster. My chemist randomly gave me teva brand of levo which made me quite ill. During which I had a docs blood test, my TSH had dropped so he dropped me to 100mg. I stuck with that for 6 weeks so the teva was out of my system before I got my BH bloods done. But I was taking 6.25mg t3 most I of the way through that. I dropped it 5 days before my tests to get a true reading. So I think I will leave the t3 at 6.25 for a few weeks more.

Many thanks

jgelliss profile image
jgelliss in reply to Kitti1

You are so welcome Kitti1 , Wishing you better days ahead .

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