Come over crap out of the blue...

[Spotydave]

Hi all.. ive been on 50mcg for 10days. I take my tab at 6am every morning.. then from 1pm onwards i seem to just come over rough.. head ache feel sick and just feeling ill.. then it can wear off other times it dont.. or can come back again...is this expected when starting ?? Thank you

[shaws Administrator]

Sometimes we can feel a bit rough if our dose has not yet reached an optimum level. That's when we start on a low dose, usually 50mcg which is increased by 25mcg every six weeks until the TSH is 1 or lower. The more the dose is increased, hopefully you will begin to feel better. The aim is relief of all clinical symptoms but sometimes that may be a little slower than we'd like.

You can try taking a bedtime dose, as long as your stomach is empty - about 3 hours after a meal. If having a blood test next a.m. which is always drawn at the very earliest and fasting (you can drink water) you miss night dose, take after the blood test and take it at night time as usual.

[Spotydave in reply to shaws]

Thanks shaws.....would it be any different or better if i took the levo at night and not at 6am???

[SlowDragon Administrator]

50mcg is only a starter dose, but we have to wait 6-8 weeks before retesting blood levels

Dose is increased slowly in 25mcg steps, retesting each time, until TSH is around one and FT4 towards top of range and FT3 at least half way in range and......most importantly symptoms have improved

Low vitamin levels are common. If not had vitamin D, folate, ferritin and B12 tested ask GP to do so, along with both TPO and TG thyroid antibodies

[Spotydave in reply to SlowDragon]

Hello slow dragon... My gp wants the 1st test at 3weeks i did ask for 6weeks but he just said if you need a higher dose you will feel crap for a a further 3 weeks before the dose gets higher .. i dont know what else hes testing.. but i will probably have a medicheck screening as i dout he will check them all .. i dont want to pee him off as hes been helpful so far...he also said you can have another test in 3weeks after if I want...

[SlowDragon Administrator in reply to Spotydave]

Ok .....how refreshing that your GP isn't one of the ones that puts you on starter dose and says come back in 6 months!

Make sure to get tested early in the morning and fasting with no Levo in 24 hours prior to test, which is easy if still taking in morning

[Spotydave in reply to SlowDragon]

I will do that... Thank you... Hes a young doc.weather that has to do with it i dont know.. but at the moment he seems decent... i keep coming over crap at the moment which is frustrating... Normally in the afternoon and evening..but ok in morning..

[SlowDragon Administrator in reply to Spotydave]

We have to increase slowly, but most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

Increase in 25mcg steps, retesting each time

NICE guidelines saying how to initiate and increase.

cks.nice.org.uk/hypothyroid...

[Spotydave in reply to SlowDragon]

Cheers slow dragon... 😀

[Spotydave in reply to SlowDragon]

Just read the info.very intresting.. Cheers.

[SlowDragon Administrator in reply to Spotydave]

The fact you have relatives with hypothyroidism and IBS suggests autoimmune thyroid disease

Has GP tested Thyroid antibodies? Or vitamins

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

[Hidden in reply to SlowDragon]

Isn't 3 weeks a bit too soon? I've had a job getting another test after 6 weeks sometimes

[Hidden]

Join the club! It's a very up and down ride at times, especially when starting. Persevere and hopefully things will eventually settle down. Likely to take many months though.

[Spotydave in reply to Hidden]

Hi jnetti... Yes i feel great then out of nowhere i come over Crap and it feels really horrible... Its happens a good few times a day starting in the early afternoon..your right fingers crossed it will sort its self

[Hidden in reply to Spotydave]

Hope it helps to know you are not the only one! Symptoms are extremely variable and may come and go apparently at random, more so at the beginning.

Mine seem to have stabilised a bit now and don't affect my life nearly as much. I started on levothyroxine in May (25mcg because of being older) and am now up to 100. Told I may need one more increase to become reasonably stabilised (reasonably because Hashimoto's doesn't progress in a nice straight line or smooth curve).

[Spotydave in reply to Hidden]

Yes yr right...great to hear your getting stable . And your right im not alone ...its great to see how much support is here..it must be one of the best forums around

[Saya85]

Hi-

Yes I used to feel like that too when I increased dose.

Make sure you’re eating a good breakfast at least 1 hour after thyroid dose. I used to feel ‘under the weather’ if I didn’t eat properly after.

However it wasn’t until I started supplementing with selenium (200mcg Rec dose usually) and vit E (natural not synthetic ) as these antioxidants help to mop up the toxic stuff from thyroid hormone conversion and are Rec to help lower thyroid antibodies.

I finally started feeling well after that alongside other vitamins.

Hope that helps

[Spotydave in reply to Saya85]

Saya thats brilliant... Im trying hard to understand the vitamins sodeto the thyroid...i spent many years in the fym and nutrition but this is a completely different battle..i will get there..i hope .

[Saya85 in reply to Spotydave]

Good luck!

Vitamin supplementation was honestly the biggest turning point for me.

B12/iron/vit D/folate/vit C and magnesium!! Game changers.

There’s a lot of info on this forum but can be slightly overwhelming.

Worth looking at any test results you have first and asking others on here to direct you.

Even now I managed to optimise my thyroid dose but had taken a break from vitamins over the summer. I felt quite well on thyroxine but not 100% -

As soon as I factored in the other vits again I felt really good.

And so many patients friends and family members I’ve managed to advise re:

Vits and thankfully almost all have responded really well. From tinnitus, acid reflux, restless legs, depression, anxiety, Insomnia and fatigue! Most, of not almost all are fully recovered.🙂

[Spotydave in reply to Saya85]

That is superb ... Its great to have the right people to help and.advise.. cheers saya... Keep up the good work 😁😁😁

[Saya85 in reply to Spotydave]

Thanks.

Ooh one more thing- obviously 10 days isn’t enough to really let the dose settle in but if you’re having itchy skin or other reactions too it could be the brand that you’re not tolerating.

I felt terrible on TEVA as most people on here seem to do.

So you may want to switch next time and see if helps if no improvements with supplementation.

Remember you need good t4 to t3 conversion- those vits are crucial for it, but you may not be a good converter regardless.

Free t4/free t3 as well as tsh tests are good indicators

Fingers crossed for you

[Spotydave in reply to Saya85]

Yer fingers crossed ... I was suffering a fungi skin problem and getting spots on my nose and rough flaky skin ... But i will admit that has calmed down a lot so far.. .. i seem to be getting hip and groin pain Which i dont no if its separate or connected. I was getting chest and upper back pains but thats also calmed down .the relux seems to of calmed down aswell .. so there has already been changes..

[Spotydave in reply to Saya85]

The onlyother thing is im sure it's becoming uncomfortable in the thyroid srea.. feels like something is there etc.. could this be in my mind etc ?? Its like a presence ...

[Saya85 in reply to Spotydave]

Ahh yes a lot of us do feel that- a lump in throat and difficulty swallowing.

You can check yourself for thyroid nodules but apparently it’s quite common with us hypos. If you search the forum posts you should find something about it

Mine did seem less once I was optimally treated but it’s never gone away completely.

Great to hear some symptoms cleared up straight away.

Hip and groin pain can be sciatica nerve related - exercises should help.

I had lower back pain for years as well as the muscle/nerve issues. But the b12 injections were the only thing that actually relieved it completely.

Never knew it was linked to that

Again rubbing magnesium oil spray into the affected areas also helps relieve pain and relaxes the nerves and muscles- it’s my lifesaver

[Spotydave in reply to Saya85]

Thats interesting ..i have read about the water swallow check.. thanks for that..

[Hidden]

Have read some medication does not stay in the system for very long. If you have a leaflet you could check on the recommendations. You could also phone your pharmacist and tell them of your problems later on 7 hours after taking the hormone and see if they recommend splitting the dose - or recommend a time when you won't suddenly flag down in energy. Saya is probably right about other vitamins and minerals and may be copper and zinc found in foods such as chocolate which can help your digestion and metabolism.

[Spotydave in reply to Hidden]

Cheers hawii i have wondered if i would need another amount later in the day. But i dout if not t works like that... Once i do the medichecks screening and my 1st bloods i will have an idear of whats happening

[Hidden]

Hi Dave have just asked search engine for how many hours does a dose last in the body - and found a health unlocked psot titled expectations of levothyroxine at 25mg dose.

The response to this post was that one person had found this dose without side effects and could go to the loo more easily. May be your startr dose of 50 mg is too high. Other

suggestions were that after two hours the level of T4 raises after you have taken the tablet. May be you should ask your doctor if your first dose is too high as even though it takes five weeks for results to settle down you are uncomfortable on your current dose.

No ewo people are the same - my daughter started on 25 mg and is now on 100mg dome 12 years later.

[Spotydave in reply to Hidden]

Wow thats really interesting.. but even more confusing.. after thinking maybe my dose is to low. Or depleting after 7hours..

[Hidden in reply to Spotydave]

That's my feeling too - so may be you could take half a 50mg tablet giving yourself time for a meal after taking the tablet according to your daily routine then take the other half before going to bed. If you could take the tablet half later than 8am with something to eat at nine, then this would take you round to 3 pm before you feel uncomfortable. I am sure an administrator can advise you about splitting the dose.

Eating food throughout the day might help your blood sugar levels if they go too low.

Presumably you have had a pre diabetes test to see if your sugar levels are within normal range. Hope you can find the right time and dose which suits you.

Your local pharmacist can also be helpful as they have 5 years training on the drugs they administer. Certainly a bed time drink such as hot milky cocoa helps night starvation, and can help you sleep.

[Spotydave in reply to Hidden]

You might have apoint... I havnt had a sugar test yet but i do know that on my 1st blood pressure est ti be taken the gp has me.doen for a sugar test so no it hasnt been tested...my fruend tested my levels from ues test kit.. ine hour after eating it was 7.5

[Hidden in reply to Spotydave]

7.5 sounds ok an hour after food. The tests done today on NHS go back 3 months if the blood is sent away. If it is a finger prick test, and is under 10, it should be ok.

However diabetes might come on later on as it is linked to thyroid disease. If your BP is up you might find dietary factors such as too much salt, hidden in crisps, bacon, ham, soups, and biscuits might be reduced to help. You can ask for a full print out at your practice for deficiencies iron vitamin d and B vitamins and for your

salt levels which can affect your kidneys, Stress is a major factor -but this is difficult to stop if you are upset or annoyed. Sure you will feel better if the dose is correct -

so if you still feel rocky with a split dose, you could ask your GP if it's ok to lower the dose and take 25mg a day. My daughter has not developed diabetes from my side of the family and remains in good health with her levothyroxine.

[Spotydave in reply to Hidden]

Just checked my mesage..wow spell check and my fingers are not good sorry lol. I didn't check it.. im going to have a full screening done by medicheck at the same time i do the gp tests... Going to go early on a Saturday morning if i can.. so then i know medicheck and the gp tests where done exactly the same time under same conditions.. so you think my dose could be to high .. andtueres me thinking it might not be enough lol ... Its very odd.it definitely seems to be early afternoon thrn afects me the most..orif im doing phisical work .then just after or at the time i can come iver feeling rubbish then it can back away again. Thanks for all the info ... Its so helpful

[Hidden]

As you have noticed an improvement in skin and muscles and other pains, expect you are on the mend - fatigue on physical exertion and after a full day of energy busting work might have been present before you started the levo. Fatigue is a sign of so many diseases including viruses and infections , it must be difficult for diagnosis but as you have just started the levo it takes 7 days to kick in. so guess it's the effects of the drug. The only

answer as I keep telling my hubby is to pace yourself so you don't go at it like a raging bull.

Think men are the same - they test things out to the limit spending more than hour on heavy work then wonder why they feel tired! I try to make hubby have a rest after a maximum of half an hour but he still keeps bucking the trend!

[Spotydave]

Even My partner says im much better in my self ( mood changing and energy) than before i started levo. It was the whole thing. Anxiety mood swings energy was terrible aswell as all other things... So there's definitely an improvement.im a windiw cleaner and before levo i was coming over ill alot while working. sometimes i had to stop halfway through cleaning a house and sit down. Thats not happening now..