Am I going the wrong way? ⬇️: Morning lovely... - Thyroid UK

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Am I going the wrong way? ⬇️

Jojozo profile image
11 Replies

Morning lovely people, my GP lowered my Thyroxin to 75mg from 100mg a month ago in order to get my TSH levels up, which have barely moved in ten years and were at 0.01 for ages and ages. This happened after I was prescribed T3 by a specialist just over ten years ago who has now even struck off. I can understand his thinking though, because he said my levels were 'disastrous' and I don't convert. However, what has happened has happened!

My GP surgery are obsessed with getting my TSH up so my thyroid doesn't go overactive, but I've had it scanned and it's very small, so can that still happen?

I got latest results yesterday (I followed all the protocols for the blood test) and my TSH has gone up from 0.14 in May to 0.08 in September to 0.68 this time around (range 0.27 to 4.2) but my T4 has also dropped quite a lot. I've attached a graph.

I'm booked in with a thyroid/hormone specialist in January because I am also in surgical menopause, but I could do with some advice in the meantime.

I've also posted my last set of results below. It was just the TSH and T4 done this time, because we all know T3 doesn't really matter!!! Thanks so much.

T4 - 17.5 pmol/L - Range: 11.1 - 22 pmol/L

T3 - 5 pmol/L - Range: 3.1 - 6.8 pmol/L

TSH - 0.08 mu/L - Range: 0.27 - 4.2 mu/L

Ferritin - 96 ug/L - Range: 30 - 150 ug/L

Folate - >20.0 ug/L - Range: 1.9 - 25 ug/L

B12 - 823 ng/L - Range: 197 - 771 ng/L

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TiggerMe profile image
TiggerMeAmbassador

Yes, they will do you no good treating your TSH level as you can see your fT4 is diving and will take your fT3 with it, you need an increase before you totally crash, even before the reduction your fT4/3 were only mid range so no where near over range 😕

Jojozo profile image
Jojozo in reply toTiggerMe

Thank you, I thought as much! My TSH level seems like it's stuck around where it is and I don't feel like the small rise is worth the drop in FT4.

TiggerMe profile image
TiggerMeAmbassador in reply toJojozo

No, it really isn't! They did this to me and you just have to tell them that you would like to be treated on your T3/4 levels and symptoms rather than a sleepy pituitary result 🙃

greygoose profile image
greygoose

My GP surgery are obsessed with getting my TSH up so my thyroid doesn't go overactive, but I've had it scanned and it's very small, so can that still happen?

Dear lord, such ignorance! A low TSH can't 'make your thyroid go over-active'. On the contrary. Thyroid Stimulating Hormone. A messenger from the pituitary to the thyroid to tell it go make more hormone. So, yes, the higher the TSH the more hypo you are, because your thyroid cannot respond. So, if your thyroid cannot respond adequately to high stimulation, how the hell is it going to start making excess thyroid hormone when that stimulation is removed? Not only does your doctor know nothing about thyroid, but he is totally lacking in logic. If you remove the stimulus of the TSH, the thyroid just goes to sleep and doesn't produce anything.

In hyperthyroidism, the TSH is low because the thyroid is making too much thyroid hormone. But, it's not the TSH causing it to make too much.

Your TSH is low because you are taking thyroid hormone replacement, including T3. The pituitary has sensed this rise is thyroid hormone levels and is satisfied, so has stopped making TSH because you don't need it anymore. It's as simple as that.

Reducing your dose to force the TSH to rise is just going to make you ill. And, if it's been low for a long time, the odds are it won't rise again, even if you stop the thyroid hormone all together. So, what will he do then? Put you on carbimazole??? I really do despair of these doctors. :(

Jojozo profile image
Jojozo in reply togreygoose

Thank you as ever for your brilliant reply. It didn’t feel right instinctively and I’m so glad I’m booked in with a specialist. I’ve been struggling for years and this lady is a recommendation via here/Thyroid UK, so I feel confident about her knowing a lot more than my GPs!

greygoose profile image
greygoose in reply toJojozo

Fingers crossed! 🤞🤞🤞🙂

Jojozo profile image
Jojozo in reply togreygoose

By the way, I'm not on T3 anymore. An NHS endo took me off it years ago so I'm only on Thyroxine. I've having a new set of blood and saliva test done with the new endo 👍

greygoose profile image
greygoose in reply toJojozo

OK :)

debbieculley11 profile image
debbieculley11 in reply togreygoose

I totally agree with your answer. I already have low TSH and when I take medication it further lowers and/or suppresses my TSH. I am already seeing a specialist, but she doesn't seem to realize this. She has already lowered my dosage, because I took the medication before the test. The best thing to do is not to take the medication before your blood test. I found this out by doing research on the internet. Go early in the morning, before you take your medication, and preferably before you eat anything, and get your lab work done. That way, your TSH shouldn't be suppressed or as low. Several, more progressive thyroid specialists, stated this is the best way to get more accurate testing done. I noticed my T3 levels always fall around mid afternoon, when looking back at my lab work. And, I take a combination of T4 and T3, but she has already lowered my dose of T4, when it was in the upper middle range and T3 was in the lower mid range.

SlowDragon profile image
SlowDragonAdministrator

You’re now on inadequate dose and likely low vitamin levels as result

First step is to get dose levothyroxine increased and vitamin levels tested

Get FULL thyroid and vitamin testing before booking consultation

List of thyroid specialists and NHS and private endocrinologists who will prescribe T3 if necessary

Choosing an endocrinologist who’s both private and NHS

See privately initially and then transfer

healthunlocked.com/thyroidu...

Jojozo profile image
Jojozo in reply toSlowDragon

Thank you so much. I'm going to increase my Levo myself. There really is no talking to my GPs and I not feeling good!

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