thyroid increase

[Nanny1086]

Hi , i’ve been on Levothyroxene 100 for over 20 years , then a few months ago i had a call from Dr telling me to go down to 75 due to blood test results , but since then i’ve had no energy , im breathless and lethargic and feeling sick , so i’ve increased back to 100 ( and see GP in 2 weeks time) , so my long winded question is how long before i feel improvement?

[Jaydee1507 Administrator]

You should never accept a dose decrease based on TSH. Ask for them to test FT4 & Ft3 also.

Exactly what were your latest blood results? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

What were your latest results for ferritin, folate, B12 & D3?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Its highly likely that you have low vitamin levels that are lowering your TSH.

Either that or you may have taken your levo before the blood test?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

I'm sure in a few more weeks you will be picking up again.

[Nanny1086 in reply to Jaydee1507]

Hi Jaydee , i was also getting terrible cramps , and i have no idea of my blood test numbers , but i never take any medication or food / drink before having them and i always go in a morning , to add , an additional BP med that was prescribed in December was stopped by gp last week as my feet had been terribly swollen and difficult walking , i had blood tests last week and dr now wants to see me about them, i rang and told receptionist i was going back to 100 and she spoke to Dr who said ok but to see him in two weeks time or before if i don’t improve ,

[Jaydee1507 Administrator in reply to Nanny1086]

I suggest you collect a printed copy of your results and post them here when you have them.

Also ask GP to test the vitamin levels I mentioned.

[Nanny1086 in reply to Jaydee1507]

Thankyou i will ,

[JigsawJill in reply to Jaydee1507]

I am puzzled by your comment "low vitamin levels that are lowering your TSH". I don't understand as I had thought that low vitamin levels could mean that you are not absorbing levothyroxine - which I assumed meant that your TSH would be higher until your vitamins were optimal.

Can you explain this in more detail? I currently have low Vitamin D and am trying to boost it up. I had always assumed once the vitamins were at appropriate level my TSH would drop. If it rises, like you imply, that would mean I would then need to take more levothyroxine?

[Jaydee1507 Administrator in reply to JigsawJill]

Low vitamin levels can reduce conversion of T4 to T3. It's probably something to do with the way the body can use the thyroid hormone better when vitamins are optimal but yes if you get vitamins optimal then TSH can rise.

Looking back at your previous results of TSH 1.7 I would say you need an increase of Levo anyway.

[pennyannie]

Hello Nanny :

I'm sure there's a guideline somewhere that suggests when patients reach a certain age - for me it was 65 and my dose of T4 reduced and I ended up very poorly.

Pity I didn't know of this forum back then.

Having been on T4 for any length time tends to reduce the TSH - which is likely the only blood test that has been run - and once on any form of thyroid hormone replacement we need to see a Free T3 and Free T4 blood test and range before changing any dose, especially when the patient is well and happy where they are.

Suggest you ask to speak to the doctor and explain you have not been well since the dose decrease and can you please have reinstated the dose that gives you your wellness.

Do you have online access to your medical records - it's your legal right - just register at the reception desk if you haven't - and can see / or ask for a copy of the blood tests that caused this dose reduction to be actioned and share the results and ranges on here and we can try and help explain why this action has been taken.

[Nanny1086 in reply to pennyannie]

hi Pennyannie , thankyou for the reply , i’m age 77 , i’ve taken 100 thyroxine for 20 years with once or possibly twice changing to 125 ,,, but the bloods taken december meant Dr reduced it to 75 , my feet have also been badly swollen making walking difficult,,, but Dr thinks that was due to the additional BP tablet ( now stopped ) , i have no idea of my numbers so i will definitely register for them. friday he said he wants to see me about the blood tests taken last wednesday,,, that’s when i rang back to say i’m going back on the 100, im hoping to feel better in next couple of days 🤞 , He also said to take my BLOOD PRESSURE and WEIGH daily ,,,

[pennyannie in reply to Nanny1086]

Do you take your daily dose of T4 in the morning before you have the thyroid blood test ?

On the day o the blood test it's recommended to leave 24 hours between last dose of T4 and the blood draw should be as early as possible in the morning so you take your T4 after the blood draw - it will not matter as T4 is basically inert and a storage hormone.

It is advised to take the T4 on an empty stomach with just a glass of water and wait around an hour before eating or drinking anything.

No thyroid hormone works well until ferritin, folate, B12 and vitamin D are optimal - so try and get these also run as these may have nosedived when your dose was decreased and your metabolism slowed too much causing you symptoms of hypothyroidism.

You are only over medicated if your Free T3 is over it's range and that's when your dose of T4 is likely reduced.

[Kazania in reply to pennyannie]

Yes, a GP told me I need we need less Thyroxine as we get older, what utter rubbish! Where do they get these ideas from!

[tattybogle in reply to Kazania]

some of us do need less kaz .... following menopause i developed symptoms of overmedication on the 150mcg i'd been on for 15yrs. then took 125mcg for next 3 yrs ,now mostly on 112.5mcg. sometimes i go back to 125mcg.

[Kazania in reply to tattybogle]

Thank for your response/correction, quite right. I was mainly responding to the idea that ‘age’ per se is responsible for everything. I’m 76 and frankly is makes me really annoyed to be dismissed, when unwell, with “ it’s your age”, when I know perfectly well I’m actually sick.

[tattybogle in reply to Kazania]

agreed ,, in reality it's just as likely that someone might need the same as they age .. and i suppose some might need more .

And my need for less was clearly related to menopause . which makes sense logically because estrogen alters the amount of Thyroid Binding Globulins we produce ,, which affects our balance of fT4 / TT4 .

i think the idea originally came from studies showing TSH tends to get slightly higher in healthy individuals as they age.. but the increase is extremely small ..certainly not good enough evidence for Gp's to make any generalisations about 'treated people needing less as they age' .

[tattybogle]

when you change levo dose (up or down ) you need to give it at least 6 weeks before you decide if the new dose feels better or not.

You may feel a bit better in about a week / 10 days that is how long it take most people to really notice a change in dose , but some will feel it sooner.

and it's also possible you may initially feel worse/or just have different problems) for a few weeks while your body gets used to the higher dose .. anything is possible.

Symptoms often change slightly every week for the first 4/5 weeks on a new dose .

So you may feel a bit better in a few days, or you may not ,, but whatever happens you still need to wait at least 6 week , then do a blood test on the new dose .. then decide.

[JAmanda]

if I were you I’d get some private blood tests including t3 and T4 as your doc will likely not have tested both - wait till you’ve been back on the 100 for 6 weeks cthen you’ll have a good picture of your levels. It could have been that you needed an increase not a decrease even.

In terms of how long it will take to feel better - 6-8 weeks or less if you weren’t in the lowered dose for long.

[Bearo]

if you needed a Levo reduction (which we don’t know) some people suggest reducing by 25mcg is too much in one go and that it is gentler on the body to reduce by 12.5mcg - either by cutting tablets or taking the lower dose on alternative days. Having been on that dose for twenty years your body will likely take weeks to get used to a lower dose - symptoms can resolve as your body adjusts - if they don’t resolve within ten weeks or so then you’ll know that dose doesn’t suit you.

Did you start BP medication at the same time as changing your Levo dose? Better to do one thing at a time!

Did you take the BP meds with your Levo? They should probably be taken at different times.

[Arlenka]

Well, you're all going to love this one. Four years ago I got a call from the GP's office telling me to stop taking ANY Levothyroxine!! I had Graves' disease and had a total thyroidectomy 44 years ago. Needless to say I told the GP's office that I would NOT stop taking my thyroid medication as I'd been on it for years and you just can't stop taking it completely. Long story short is when I had my next appointment I requested to see an endocrinologist. After about 8 months the endocrinologist agreed to put me on Liothyronine. Now back in Canada and going to see new endocrinologist in two weeks... they're questioning why I'm on Lyothyronine??? So, I'm going to have my work cut out for me. By the way ... I pay for Lyothyronine at a cost of $530.00 for 400 5mg tablets.. yes I pay for it. Since I've been on it I feel better than I had in almost 40 years!! Wish me luck! Good luck with your carryon x