Frustrated: 10 months ago I was on 100 mcg of... - Thyroid UK

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Pictur profile image
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10 months ago I was on 100 mcg of levrothryoxine. i went for annual physical in Aug. TSH -0.01 (0.35-5.00), T4 -24 (12-22) , T3-5.1 (3.4-5.9). My Dr. Said to reduce my dosage by 2 pills a week. did so and rested in Nov. TSH-.12, T4-16, T3-3.8, TPO-22 (less than 34). My Dr. Said to reduce by one more pill per week. I am now taking 100mcg 4 times per week. I am gaining about a pound a day, have skin issues and no energy. I felt so good before I we t for my physical. is there any danger to being over medicated if I felt somgood. How long before I should retest and would it not be better to take a pill every day as opposed to every second day. I am so tired of Flucuating all the time. All my vitamin levels were good.

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fuchsia-pink profile image
fuchsia-pink

You are only over-medicated if free T3 goes over-range. You had under-range TSH when they first started messing with your dose, which is completely different. I'm not surprised you feel rubbish and are gaining weight. Free T4 is now an unsatisfactory 40% through range and free T3 is scraping along the bottom of the range ... can you go back to your earlier dose, which looked great?And don't let you GP bully you with rubbish about how an under-range TSH risks heart and bone problems. There is a world of difference between having very low TSH and over-range free T4 and free T3 and not being on thyroid meds - where there certainly can be issues - and having low TSH because you are on thyroid meds, although I accept the subtlety here seems to elude a number of GPs.

And remember none of your thyroid hormones were over-range before you started to reduce meds, Good luck x

Pictur profile image
Pictur in reply tofuchsia-pink

Thank you for taking the time to reply to my concerns. when you say go back to the higher dose, do you mean when I was taking 100mcg per day or when I cut back by 2 pills. I appreciate your reply.

fuchsia-pink profile image
fuchsia-pink in reply toPictur

I meant the 100 mcg a day dose, when your bloods were really good - assuming you felt good on this dose x

tattybogle profile image
tattybogle

I've been in a very similar position, and i had to 'strong arm' my doctor to let me put dose back up a bit, i stayed on low dose for a few months until he'd got a blood test on the lower dose , and told the phlebotomist it was making me constipated and i would be putting it back up myself.Because of this situation i did a lot of reading about the 'risks ' of low TSH, and if you look at the first reply to this

healthunlocked.com/thyroidu...

and click on the links contained in it , you'll find useful discussion and evidence on the subject.

hope it helps you make your own mind up . i think GP's just get the 'headlines', not the full picture.

Basically i found evidence that the 'risk's don't start until TSH is below 0.04, and in your case it's likely that only a very small reduction might have raised your TSH to that level.

You have had an effective reduction of nearly half your dose ;

7x100=100mcg /daily

4x100=57mcg /daily

Your doctor could have given you a prescription for some 25mcg and 50 mcg pills and told you to take half a 25 pill each day, with a 50 and a 25. (or told you to alternate 100/75 daily) this would have reduced your dose to approx 88 mcg /daily and this might have been enough, to get TSH above 0.0.4 (and anyway , like fuscia-pink says , it's not about the TSH , it's about the fT4/3)

Yes ,it's not great to have fT4 over range either, it would be better to keep it in range if you feel well at that level, but none of this matters compared to the actual risk of feeling so unwell you don't keep yourself fit in other ways.

I'm not convinced it's the best idea to take hormones on 4 days and none on others, yes, T4 is a storage form , so it shouldn't matter in theory , but many of us on here really notice a difference , and i think it's just laziness, and money saving on the doctors part to try and make fine adjustments using only 100mcg pills. And Levo only costs pennies.

SlowDragon profile image
SlowDragonAdministrator

Your dose never needed reduction

Ft3 wasn’t over range

Likely to have low vitamin levels now you are under medicated

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Or if under medicated

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Pictur profile image
Pictur in reply toSlowDragon

i did ask my dr if I had Hashimoto’s so he ran the TPO and it came back as 22. (Under 34) was the range. I assume I do not have Hashimoto’s. Do you think my vitamin level would be low if I take supplements. I take 3 brazil nuts per day, B6+ B12 with folic acid, Vitamin D and. magnesium.

SlowDragon profile image
SlowDragonAdministrator in reply toPictur

There are two different antibodies

You would also need TG antibodies tested

healthline.com/health/antit...

Significant minority of Hashimoto’s patients only have high TG antibodies

Also 20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Vitamins always need testing

You can’t know what levels are without testing

How much vitamin D are you currently taking

Brazil nuts only have selenium if packet says grown in selenium rich soil

Wetsuiter profile image
Wetsuiter

Do you stop taking the Bvit b4 your blood tests?

Pictur profile image
Pictur in reply toWetsuiter

Yes, I stopped all vitamins 24 hours in advance, plus I did not take my levrothryoxine pill the night before. I am feeling so crappy that I am now going to go back to my original dosage and take a pill everyday. I was feeling great before I went for a physical. It is great having this forum so people like me can get a better understanding of how the TSH,T3 and T4 work. If I kept following my drs advise I would be a hot mess. I am already feeling pretty awful, can’t wait to start feeling better.

Wetsuiter profile image
Wetsuiter in reply toPictur

i think you have to stop taking B for longer than 24 hours b4 test.

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