What level of Levo should I be on?: Going against... - Thyroid UK

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What level of Levo should I be on?

Achilles_Pain profile image
11 Replies

Going against the grain here to report good news, but in the ten days since my new GP prescribed Levo for a trial basis, even though my most recent blood results were well within normalarameters, with the exception of the pain and stiffness in my right elbow and wrist and the pain in my left ankle and Achilles I'm 90% better.

Since then a further blood test, my first ever taken in the morning before food, has identified a TSH of 9.5 and T4 of 12.2, so my question is what dose of Levo would be appropriate? I'm currently taking 25mcg - should I slowly increase, and if so, to what? Or do I leave it longer to see if 25 sorts out the ankle/Achilles first?

I haven't been for a run for almost three months and have gained over a stone in that time, and in the prior 15 months, despite running almost 2500 miles, I put on a stone. Desperate to get my trainers back on and out on the fells, June's mountain marathon seems a million years ago, I walked for just three miles yesterday and had to limp the last one.

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11 Replies
Achilles_Pain profile image
Achilles_Pain

I should also say I have an appointment with my GP on Friday morning at which I'll discuss my blood results, improvement and future plans for blood tests and dosage.

Marz profile image
Marz

I would suggest an increase in T4 as your TSH needs to be at around 1 or under once on medication. Your TSH is too high and your FT4 too low - even without the ranges. I would increase to 50mcg - that's just me and I am not a medic !

Congrats on your exercise - however with so little T4 I am thinking that your FT3 will also be low and with all the exercise you do - it may be too low. Exercise uses up T3 I have read.

Aches and pains can be linked to Low Thyroid however I would also have Ferritin - Folate - B12 - Iron - VitD tested. They need to be good within their ranges and not bumping along the bottom. B12 needs to be around 900/100 and VitD also towards the top of the range. Ferritin and Folate - mid-range will be fine.

My aches and pains lifted once the vitamins and minerals were optimal - which did take time. I would also rule out Hashimotos - by having the anti-bodies tested - Anti-TPO and Anti-Tg. If positive then it will be time to look at healing the gut.

Achilles_Pain profile image
Achilles_Pain in reply toMarz

Of those I've only ever had folate and ferritin tested, so far as I can see in Patient Access. Folate was 6.7 (3 - 19) and ferritin 116 (22 - 320), so both normal, though towards the lower end - unless these, too, should be on blood drawn early in the day? I had a thyroid Peroxidase antibody test showing 2 (0 - 59), if this is one of the two antibodies you refer to?

Marz profile image
Marz in reply toAchilles_Pain

OK - so they are fine - so do have your B12 and VitD tested..... therein is a possible clue :-) Folate just a tad low....

Forgot to mention I am not a medic - just a Hashimotos sufferer with a long and complicated medical history. Am sure you know that if you click onto peoples names you can read their profiles and journey to wellbeing in my case :-)

Apples profile image
Apples

Isn't it great when things start to improve!

I would add to the above that you need time between dose increases for your body to settle and sometimes an increase seems to set you back a bit.

It took me a few months to reach my dose of 125mg and looking back I am shocked by how much discomfort I was in and how restricted that made me before being diagnosed.

So I would advocate patience.

Achilles_Pain profile image
Achilles_Pain

Yes, I used to work with someone who had the tendons in her fingers snap - her doctor told her it was due to her hypothyroidism - so although I'm dying to get my trainers back on, it won't be until the pain has gone away. After three years off the meds thanks to my previous doctor deciding I didn't need them any more I'm aware it will take a while to recover. I just hope that being youngish (48) and healthy (hypothyroidism aside) and active (until recently) it will be fairly quick.

Achilles_Pain profile image
Achilles_Pain

Thanks all - I have ideas for my appointment on Friday.

1 Arrange new blood test in approx 4 weeks (6 weeks after starting treatment)

2 Ensure B12, Vit D, folate and ferritin are included

3 Maybe include FT3 (never tested before) is included with FT4 and TSH.

4 Be patient!

At least my new doctor listens until I finish talking, unlike previous doctor, so I should get somewhere.

SmallBlueThing profile image
SmallBlueThing

A Levothyroxine dose of 1.6mcg per kg of body weight is a ballpark figure to aim for. The rate of increase is generally slower for older (over 50) patients.

Best wishes for your return to fitness.

Achilles_Pain profile image
Achilles_Pain in reply toSmallBlueThing

Which suggests I should be on somewhere between 100 and 125 - so the amount is related to my weight, not the TSH value? When I'm at the doctor's on Friday maybe I'll ask for an increase now? Well, let's see what he suggests.

SmallBlueThing profile image
SmallBlueThing in reply toAchilles_Pain

The 1.6mcg is a number from the powers that be, who must've judged their patients to be adequately treated. Whether or not they were...?

Bear in mind hormone production from your thyroid, and the figure can only be a guideline.

I hate to stress it, but DON'T rush things. Treat it like LSD (long slow distance) during the winter months.

Clutter profile image
Clutter in reply toAchilles_Pain

Achilles_Pain, dose/weight ratio was used to estimate a starting dose for thyroidectomised patients at one time. I don't think it is often used now. After starting dose thyroid function test levels guided dosing.

Your dose needs increasing in 25mcg increments every 6-8 weeks until your TSH is around 1.0 and FT4 in the upper range.

If your TSH was >9 when diagnosed it's highly unlikely 25mcg will be sufficient and 50-75mcg may have been a more appropriate starting dose.

thyroiduk.org.uk/tuk/about_...

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

Your TPO antibodies are negative for autoimmune thyroid disease (Hashimoto's) which is good news.

Folate is adequate but you could boost it a little by supplementing a B Complex vitamin. Wait until after your B12 blood test.

Ferritin >100 to half way through range is optimal.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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