Am I overmedicated? Advice sought please - Thyroid UK

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Am I overmedicated? Advice sought please

Sal777 profile image
16 Replies

I was diagnosed hypothyroid in December 2021 and have been taking 100mcg Levothyroxine daily since.

My GP blood test result after 6 weeks commencing medication:

TSH 0.9 (0.1 0 - 4.0)

Free T4 23.2 (9 - 22)

My GP text me to say my dose of thyroxine is right as my TSH is back to normal and should repeat my thyroid function test annually now.

Recent blood tests from Medecheck:

TSH - 1.18 mU/L (Range: 0.27 - 4.2)

Free T3 - 3.98 pmol/L (Range 3.1 – 6.8)

Free Thyroxine 24.100 pmol/L (Range: 12 - 22)

Iron 24.78 umol/L. (Range: 5.8 - 34.5)

Transferrin Saturation 41.73 % (Range: 20 - 50)

Ferritin 132.00 ug/L (Range: 13 - 150)

Folate Serum 4.12 ug/L (Range: > 3.89)

Vitamin B12 Active 71.400 pmol/L (Range: 37.5 - 188)

Vitamin D 35.60 nmol/L

<25 Deficient

25 - <50 Insufficient

50 - 75 Adequate

>75 - 200 Optimal

Both blood tests taken AM fasting and 24 hrs from last meds.

I can see I'm low in Vitamin D and I'm taking D3 and K2 supplements now.

I'm also taking Super B complex daily and magnesium.

My question is - as T4 is over range do I need to reduce Levo?

Is poor conversion due to vitamin levels not being at optimum range?

Symptom wise, I'm still mostly fatigued, but do have the very occasional day where I have energy and can blitz the cleaning, then I'm wiped out for days after.

Weight gain, hair loss, brain fog, dry skin, awful nails and aching hasn't improved. I'm working from home and I think this is the only reason I'm still employed!

Any advice is much appreciated. Thanks in advance x

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Sal777
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16 Replies
fuchsia-pink profile image
fuchsia-pink

No, you're not over-medicated as free T3 is not over-range - you're just a truly awful converter :(

Boosting vitamins should certainly help, but if your position, I'd start researching T3-friendly endos, as you really need more T3 in your system to feel properly well and have a chance of losing weight.

Lio is endo-only, and not all endos will prescribe it - because it's too expensive (although price is dropping all the time); it has a short half-life so it's harder to measure than levo; and a surprising number of them don't believe it works, and those of us (like me) who have found it transformative are all suffering from some strange shared delusion.

You can get a list of T3-friendly endos from Dionne at Thyroid UK - tukadmin@thyroiduk.org - and it's worth a new post asking for recommendations near-ish to you. You don't need to see the nearest person but must obv be reasonably convenient x

Sal777 profile image
Sal777 in reply tofuchsia-pink

Thanks so much for your reply. I’m still learning all about how to interpret the blood results so appreciate the nuggets of wisdom offered on here. I’ll ask on here for recommendations for endo’s near me (or I’d travel) who would prescribe T3.Oh I can’t wait to feel well again!

Many thanks again fuchsia-pink 😊

fiftyone profile image
fiftyone in reply tofuchsia-pink

My T4 is about six points above the range, and my T3 is high within range. I feel very well. Knowing my T4 was so high I enquired about T3 but was flatly refused, and if I reduce my levo, I immediately have all those unwell feelings (never mind wait fo six weeks!!). I am quite happy to keep my T4 well above the range, therefore. (My TSH is non existent). Maybe a higher T4 would result in a better T3 level and you would feel better (if you cannot get T3)

fuchsia-pink profile image
fuchsia-pink in reply tofiftyone

High in range free T3 is exactly what you need! And if free T4 needs to go a bit over for you to achieve it, that's not a problem. You're unlikely to get lio if you can get a decent free T3 level with free T4 just a bit over - and given the hassle in getting lio on the NHS, you're in a good place :) - but the OP has over-range free T4 and poor free T3, so doesn't convert as well as you and so is likely to really benefit from lio...

tattybogle profile image
tattybogle in reply tofiftyone

Sal777 , i'm the same as fiftyone. My fT4 is often way over-range, and consequently for many years my TSH was usually just below range 0.05 ish, which has caused issues with the GP wanting to reduce dose of Levo ....but it seems i need it there in order to feel ok on Levo . (high T4 in order to get enough T3, the one that is active .. T4 is just an 'inactive' form of thyroid hormone that is converted into T3 in the body)

Obviously it would probably be better to have less T4 and add a bit of T3 to it in some form, either by getting an Endocrinologist to prescribe some T3 ,or take some NDT instead of Levo

(NDT , Natural Desiccated Thyroid, is whole thyroid from pigs and has both T4 andT3 in it naturally )

.... but getting T3 officially prescribed by NHS can be very difficult, and NDT virtually impossible.

However i would say one thing ... give it time before considering going down the T3 route... it is only a (relatively) short time since you started Levo, (in hormone terms .. thyroid hormones, and their effects in all the cells of the body are slow things to improve ) and so it is still possible that your symptoms and blood results will change on 100mcg Levo. .. especially if you still have any work to do to improve vitamin levels etc that others may have mentioned.

Sal777 profile image
Sal777 in reply totattybogle

Sound advice - thank you. It is early days so it makes sense to wait a little longer and get vitamin levels optimized, test again and see where I'm at. If still a poor converter, then I'll look at sourcing Lio or NDT privately... and will likely be back for more advice from you lovely people :-)

SlowDragon profile image
SlowDragonAdministrator

Have you had thyroid antibodies tested via Medichecks or GP?

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Have you had coeliac blood test done ?

If not request GP to do so

How much vitamin D are you currently taking

Retest vitamin D after 2-3 months

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Likely to need at least 2000-3000iu per day

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended brand options that contain folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Sal777 profile image
Sal777 in reply toSlowDragon

Hi SlowDragon, that’s really helpful advice and information, thanks for sending. I’m not taking enough Vitamin D at 8000iu daily and need to double that, self supplementing as easier than trying to get a GP appointment. The spray sounds a better option as easier absorbed. Im taking igennus super B complex daily which has folate and having celiac blood test tomorrow morning. I’ll get antibody test arranged too. And a calendar for my foggy brain to remember when to retest! 😊

SlowDragon profile image
SlowDragonAdministrator in reply toSal777

I’m not taking enough Vitamin D at 8000iu daily and need to double that,

You presumably meant only taking 800iu vitamin D

Come back with new post once you get thyroid antibodies tested at next test …..if not had antibodies tested by GP at diagnosis

Assuming either TPO or TG thyroid antibodies are high this confirms autoimmune thyroid disease also called Hashimoto’s

GP should do coeliac blood test for anyone diagnosed with autoimmune thyroid disease

Sal777 profile image
Sal777 in reply toSlowDragon

Yes a typo 800 iu Vịt D. Will come back with next blood test results for more advice, thanks SlowDragon.

pennyannie profile image
pennyannie

Hello Sal :

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3, the active hormone that runs the body, which is said to be around 4 times more powerful from T4 with the average person needing to utilise / convert around 50 T3 daily just to function.

Your ability to convert the T4 into T3 can be compromised by low levels of vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D, inflammation, dieting, depression, ageing and any physiological stress ( emotional or physical ) so whilst we can't control all these aspects of our life, we can do something about restoring our core strength vitamins and minerals and becoming as well as we possibly can be.

The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when their conversion ratio comes in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at just over 6 : so way out from the middle and showing poor conversion.

You are not over medicated unless your T3 is over range - an over range T4 can either make for a higher, better level of T3 or in your case show that you are not converting the T4 well, as then it would show up as an in range higher T3 and a lower in range T4 :

No thyroid hormone replacement works well until the vitamins and minerals are up, and maintained at optimal so I would think this the first step to take to improve your health.

Some people can get by on T4 - in fact T4 monotherapy works well for around 80% of the those who are on this treatment option.

Some people find they need the addition of a little T3 with their T4 to kick start their metabolism but it's very early days and T4 may work better for you once everything else is optimal.

P.S. When diagnosed did the Laboratory run your thyroid hormones then as to the medical evidence of a thyroid auto immune disease - was there any mention of :- TPO / TgABS ?

Sal777 profile image
Sal777 in reply topennyannie

Thanks for your reply and detailed message pennyannie, it makes everything so much easier to understand about converting T4 to T3. I haven't been tested for antibodies, but will arrange this. My GP just prescribed the levothyroxine and has basically said now my TSH is normal from 55 when diagnosed, I'm pretty much fine and should have an annual blood test.But... I still feel like absolute crap and always cold, don't recognize myself any more. In a rush to just take whatever will make me feel well again, but it makes sense to optimize vitamins before trying to source Lio or NDT (though I would do this in a heartbeat to feel better!) x

pennyannie profile image
pennyannie in reply topennyannie

Well, yes, it's all about the word ' normal ' and being ' in the range ' :

But when you have an underactive thyroid it's all about where you feel your normal within these ranges : and there again the ranges are a suggestion and shouldn't be used as sacrosanct especially when diagnosed with a thyroid health issue, an auto immune thyroid disease or people after thyroid surgery or RAI ablation.

Try and pace yourself and do a little bit everyday as when you have that ' good day ' and blitz the place it sets you back further with the payback that follows.

Don't beat yourself up, listen to your body and you can turn some of this around for yourself with a little more reading on here and on the Thyroid UK who are the charity who support this forum scroll up this screen , and you'll see you in good company.

This is where we all start off when mainstream medical leave us confused as it's simply not just about being somewhere in a range, especially when some ranges are too wide to even be sensible.

It does take time for thyroid hormones to settle, so stay with it, a bit longer, working on what you can do for yourself in the meantime, and for once being in isolation and working from home has an upside while you get your ducks in a row.

Picketywitch profile image
Picketywitch

Hi I was on 225mcgs of T4 until my T3 was checked & found I wasn’t converting T4 very well. Put on T3 much better for years until one go reduced my T3 by 20mcg & my T4 by 50mcgs ( 150mcgs daily). Put on two stone in less than 6 months no one listened to me & I subsequently had to retire early from my job. My reduction of doses was based on a comment from someone at the path lab about my TSH which had been 0.001 for 15 years then. Saw an endocrinologist who told me my TSH was permanently suppressed due to T3 & no matter how much it was reduced it would not affect the result of my T3. Stick at it keep badgering your gp.

Sal777 profile image
Sal777 in reply toPicketywitch

That's awful you needed to retire early from your job. I completely understand how debilitated you must have felt. I'm learning very quickly that we really do need to be in control of our own health and medical professionals are not always the expert. I've read on here a lot that TSH is suppressed when on T3... I hope you're back to good health now Picketywitch.I will badger my GP if I need to. Whether they listen is yet to be determined. If I need to source my own medication to feel better then I'll take that route.

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