I was told by my doctor that he's thinking about stopping my Thyroxine as my tsh levels are really low,0.01.I was originally on 50mcg of Thyroxine and 60mcg of Erfa t3.He Suggested I half the Thyroxine to 25mcg which I did.After 8 weeks I had a blood test that showed it had come up slightly to 0.03.Will it eventually come up more in time.I must say I haven't felt to bad even though my tsh levels have been low,.Should he be right in saying he's thinking about taking me of Thyroxine.
Tsh: I was told by my doctor that he's thinking... - Thyroid UK
He is totally wrong! He should not be dosing by the TSH, it is a very bad indicator of thyroid status, and is bound to be low when taking NDT, due to the T3.
But, no. It won't come up further. And neither does it need to. And, having a low TSH won't make you feel anything, good or bad. In euthyroid people it's an indicator of the level of thyroid hormones. But when you're hypo, the test is of little use unless it goes high. When taking any form of T3, the important number is the FT3. This doctor is very ignorant!
They talk a lot of rubbish but it is, I think, a fact that they get confused with a patient who has 'HYPERthyroidism' rather than HYPOthyroidism'. A hypo patient can feel 'hyper' but not through hyperthyroidism but with taking too much thyroid hormones. They'd probably reduce their own dose.
Did you have your blood test at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards?
If Hypo and we have a low TSH that's fine but to mess about with doses to 'fit' into a range is wrong.
If we take anything other than levothyroxine, i.e. NDT, T3/T4 the results cannot correlate as blood tests were introduced for the use of levothyroxine alone i.e. (T4).
You must realise that all of the doctors, endocrinologists seem not to know one thing about treating metabolism. That's why we have a problem and thyroid hormones restore our metabolism to 'normal'.
Read this whole link of which this is an excerpt and give a copy to your GP. He can ruin your health altogether by not understanding about thyroid hormones and assuming that a low TSH equals hyperthyroidism. Not so.:-
"IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician instead give you T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcg) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, you can demand that your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have hypothyroid symptoms, and no hyperthyroid symptoms, demand that your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose.
They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.
Your thyroid hormone levels there are ok if you feel ok. If not, there's plenty of room for an increase in dose. Your FT3 is not quite mid-range.
Your ferritin, on the other hand, is much too low, by the look of it. Do you not have a range for that?
And, I would just like to add that if we are hyper, we will obviously have a low TSH, but it's the high thyroid hormones causing the TSH to go low. Not the TSH causing us to go hyper! lol
Hi greygoose, that explains why the idiot (my so called doctor)said he would write to my Endo and that I should make an appointment with him,he obviously hasn't got a clue.My ferritin range is (11.00-307.00)what is the best range to be at?I do take iron, obviously not enough.Thanks for the replies you've been very helpful.
He's an idiot! The TSH - Thyroid Stimulating Hormone - has two jobs. It stimulates the thyroid to make more hormone - as the name suggests - and it has a role to play in the conversion of T4 to T3. If you are taking T3, you don't need to convert so much T4, so it's not a problem if the TSH is low. And there's no need for it to stimulate the thyroid, anyway, because a hypo thyroid cannot respond.
TSH has no connection to bones or hearts. A low TSH cannot make you hyper - that just goes to show how very, very little he knows about thyroid. The TSH is a response to thyroid hormone levels in the blood. A low TSH does not make the thyroid stop working - yours obviously doesn't work, anyway. So, how can you possible become hyper? He just has no idea what he's talking about. And if he wants to know if you're over-medicated, he should be testing the FT3. That's the only way to know.
As others have said, your GP doesn't understand reading results of anyone on NDT.
You are taking Efra, so TSH is almost inevitably suppressed. The most important thing is FT3 and FT4
But also essential to test vitamin D, folate, B12 and ferritin
If these are too low we can't utilise thyroid hormones very well
As you have Hashimoto's are you on strictly gluten free diet?
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first
Private blood tests are available.
Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If also on T3, or NDT make sure to take last dose 12 hours prior to test
Is this how you did the last test?
Hi Slowdragon,when ever I have my blood taken I always take my meds after.My b12 is 360(120.00-625).Folate is 14.7 there is not a range for that.These have been tested by the doctor can the doctor get me tested for my thyroglobulin Antibody and Tpo antibodies,ive ask him if he would test me but has ignored it.I have had a couple of private tests done by medichecks.I am gluten free,have been for quite a while now.Another question I'd like to ask is why Alcohol affects me really bad now,I can't drink anymore,is there a reason for that?