Underactive thyroid and levothyroxine dose? - Thyroid UK

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Underactive thyroid and levothyroxine dose?

David62 profile image
15 Replies

Hi there I've just joined this forum and wondered if anyone can give me advice or at least share their experience as unfortunately my GP is unable or unwilling to advise me.

I was diagnosed with an underactive thyroid in 2011 following a blood test that revealed my TSH to be up at 12. I had no symptoms and had no idea there was even a problem. I was put on a small daily dose of Levo (25 mcg) for a few months and after a number of blood tests over the years now find myself on 250 mcg per day. I am a 55 year old male, 1.85m and weigh around 87kg.

The problem is that my doctor simply doesn't know whether or not my dose is correct and although my TSH is in the normal range now I am concerned that I am taking too much. They refuse to test T3 and T4 so every six months all I get is a TSH test.

Recently I have started to experience aches when getting up in the morning or even when rising from a chair and although I am aware that I am not getting any younger, I keep myself fit playing tennis and circuit training so it is not through inactivity.

I know that we are all unique but is there anywhere I can find out what the recommended dose should be as I am concerned that I am taking too much?

Thanks for reading my first post.

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David62
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15 Replies
SeasideSusie profile image
SeasideSusieRemembering

David - you could do what a lot of us do when we can't get the other important tests done by the NHS - do them privately. There are a couple of companies a lot of use that do home fingerprick tests (or you can arrange venous blood draw if you prefer).

You really need FT4 and FT3 and we can never understand how doctors don't know this. Also, vitamins and minerals need to be optimal for us Hypos so that thyroid hormone can work properly. Low levels can bring their own symptoms. So testing Vit D, B12, folate and ferritin is advised.

You can do everything in one test

bluehorizonmedicals.co.uk/t... or

medichecks.com/thyroid-func...

Medichecks have special offers every Thursday some tests, so check tomorrow and see if the Ultravit is one of them.

David62 profile image
David62 in reply to SeasideSusie

Hi Susie the Medichecks one looks exactly what I was after. It will be good to go back to my GP and tell them what I need rather than have them guessing! Many thanks David

NatChap profile image
NatChap in reply to David62

When you get your results post them on here and folk will advise if there is anything to be concerned about and best course of action if that's the case.

SeasideSusie profile image
SeasideSusieRemembering in reply to David62

They're both the same test David, so if Medichecks don't have it on offer tomorrow there's only 15p difference in price, and with Blue Horizon you get a lovely big chocolate coin with your order (which helps me to choose :D ).

Medichecks do actually recommend a venous blood draw, Blue Horizon say 2 X microtainer or venous blood draw. The microtainers collect 600-800 microlitres so in total about 1.5ml.

SlowDragon profile image
SlowDragonAdministrator

Testing for low vitamin D, folate, ferritin and B12 is very important. Very many of us have low levels as result of being hypo

Antibodies are important to test too

shaws profile image
shawsAdministrator

Welcome to our forum,

What you need is a new blood test and the doctor or lab most probably wont do all the ones you need.

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between the last dose and test and take afterwards.

Ask for TSH, T4, T3, Free T4, Free T3 and antibodies. B12, Vit D, iron, ferritin and folate.

You can have these done privately by one of our recommended labs and I will give you a link. These are pin-prick home tests. You can always get the one the GP or lab wont do.

Put your results on a new post with the ranges.

Many people take high doses and some take a combination of T4/T3.

thyroiduk.org.uk/tuk/testin...

Puska profile image
Puska in reply to shaws

I find it hard to believe that T3 and T4 are not always tested in the UK. Makes no sense.

shaws profile image
shawsAdministrator in reply to Puska

They may test T4 but not Free T4 or Free T3 and 'yes' it doesn't make sense. :)

eeng profile image
eeng

Random aches and pains are most likely to be caused by low Vitamin D or by being under-medicated. I get a random backache when I am lying in bed in the morning when I'm undermedicated. It goes away when I take a tiny bit more Levothyroxine. Weird!

CMiu profile image
CMiu

Hi David, from my experience exercise raises TSH, so doc raised my levothyroxine dose. But it was too much (150mcg per day - I'm an athletic 5ft 2in lady) and I abnormally experienced complete exhaustion after a month of trail running training. My body was overheating and heart working way too hard from the increased dose. I've since against doctor's prescription started to taper off the levothyroxine and feel so much better! I'm seeing how low I can go as I've started to take thyroid supplements (ashwaganha, iodine, tyrosine, Brazil nuts for selenium, vitamin D3, vitamin B complex, NAC to counter mucin build up) and pregnenolone (grandmother of hormones) as well. I'm now on 50mcg levothyroxine taken every 3rd day (a study said that a few days between each dose increases T3 conversation from T4). This is after having started levothyroxine in 2011 due to a high TSH and presence of antibodies. So the idea was to suppress the thyroid with replacement T4. Another observation is that I need more levothyroxine during winter.

I hope this has given you some insight. 250mcg sounds excessive and immediately made me think it might be due to exercise that your dosage has been upped so much. I usually hear people on 50mcg to 100mcg per day. One doc told me 150mcg per day is a high dose for someone my size.

Take care!

David62 profile image
David62

Thanks CMiu I had no idea exercise could do that nor that there were so many supplements out there! I will post my results on here when I have them as it seems that people posting on here know far more than my GP.

Scouser58 profile image
Scouser58

David 62,, your gp should refer you to an endo,,and retest your blood, it could be you dose needs adjusting,,your gp should not be so lax in helping you,,levothyroxine needs to be checked and monitored,,bone idleness is not a good attitude from a gp,,if all else fails see another gp in the practise,,or change to another practise where they should be more on the ball,,,and if you feel that this is so wrong,,contact the ccg,,and complain,,,good luck ttfn from karen.

David62 profile image
David62

Well after a little wait the results are in.....

THYROID STIMULATING HORMONE 2.62 mIU/L 0.27 - 4.20

FREE THYROXINE 20.1 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 114.0 nmol/L 59.00 - 154.00

FREE T3 4.98 pmol/L 3.10 - 6.80

REVERSE T3 *26 ng/dL 10.00 - 24.00

REVERSE T3 RATIO *12.47 15.01 - 75.00

THYROGLOBULIN ANTIBODY *123.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES *201 IU/mL 0.00 - 34.00

ACTIVE B12 48.7 pmol/L 25.10 - 165.00

FOLATE (SERUM) 5.46 ug/L 2.91 - 50.00

25 OH VITAMIN D 61.3 nmol/L 50.00 - 200.00

CRP - HIGH SENSITIVITY 1 mg/l 0.00 - 5.00

FERRITIN 241 ug/L 30.00 - 400.00

So high in antibodies a bit low in vitamin D (I need a holiday!) and free T3 on the low side as well. If anyone has any suggestions or notices anything else then I am all ears.

Thanks David

CMiu profile image
CMiu in reply to David62

Hi David, because of the high RT3 and antibodies, it looks to me your body may have suffered too much stress previously for some length of time. I don’t believe more T4 would be the cure, especially since you’ve started getting symptoms from it. More T4 could convert to more RT3 which would make you feel worse. I believe it’s time for some “TLC”, to get those antibody levels and RT3 down. Removing as many toxic substances/chemicals from your personal care and diet as you can, would be a good idea. Though easier said than done! Make sure you get enough selenium (1-2 Brazil nuts a day) and many people lower antibodies through a gluten-free diet. Since taking levothyroxine, I react negatively to gluten, soy and dairy so I know for sure these foods stress my body. If your aches are from inflammation, omega 3, cinnamon and turmeric are powerful natural anti-inflammatories. But your aches may be from too much levothyroxine.. which happened to me too.

Hope this is insightful at least!

Charlotte

David62 profile image
David62

Thanks Charlotte I have already started on the vit d and nuts so will try your other suggestions as well. My job is fairly stressful and I always thought I coped well with stress but clearly that's just on the outside! I will report back in a month or so to share any changes but thank you and all the other posters for all the input. David

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