Up until a few months ago, I was on 175 mcg of Eltroxin. I then had a blood test that came out really high. I was reduced to 150 mcg. I had another blood test and it was still a little too high. T3 was still a bit high too. I was reduced to 125 mcg / 150 mcg on alternate days.
I have begun, over the last week or so, to feel awful. I have really slowed up and I am needing so much rest time. I am not living a normal life at all. I had a week where I had no appetite and I have lost weight and I am having a lot of brain fog. I am cold all the time and am getting a lot of cramp.
I think this is down to my thyroid but I don’t understand how on my last test the T3 was a bit too high. All my symptoms say I’m under medicated, but the results don’t. What is going on? Please help - I’m feeling so awful.
Thank you very much.
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Recommend you get FULL thyroid and vitamin testing
When dose of levothyroxine is reduced vitamin levels frequently drop, sometimes substantially
Low vitamin levels tend to lower TSH
Many people, when on correct levels of thyroid hormones have suppressed TSH ....you are only over treated if Ft3 is over range
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
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thank you very much indeed for your full reply. I really appreciate it. I’m definitely going to see about having a full check of everything and if it has to be done privately, I will go that. I can’t go on feeling like this.
The consultant I used to see (he retired) always said he liked my FT3 mid range. He was great because if T3 was mid range and my T4 was too high, he said it was fine and I wasn’t over medicated. Sadly he has now retired.
I take the test the way you describe. I don’t eat or drink before it either.
My TSH has been suppressed for all the years I’ve had UAT - almost 15 years ago. I don’t have Hashimoto as such. I have a bit, but mainly it’s just my thyroid not working properly.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Sadly very few endocrinologists are as enlightened
It’s amazing you quote Dr Toft because he was my endocrinologist for around 14 years until he retired. He was absolutely amazing. As you say, they’re are very few who are so enlightened.
I’ll get the articles and see what I can do with them. I suspect my GP will say that times and the ranges have changed.
Thank you very much indeed for your message. I’ll read it properly after explaining. What I meant was I have some antibodies but not enough to make it Hashimoto. I had them tested years ago. I have had it done twice. Each time the same although perhaps slightly more anti bodies the second time.
I don’t have Hashimoto as such. I have a bit, but mainly it’s just my thyroid not working properly.
You can't just have a bit of Hashi's. Either you have it or you don't. And, if you have it, that would be why your thyroid is not working properly, because the Hashi's is slowly destroying it. This a quick run-down of how Hashi's works:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
After every immuns system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can do for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
This is really interesting. Can you develop Hashimoto’s disease after years of not having it?
I do wonder if this isn’t the issue because when I was tested in Nov/Dec my T4 was 27. My TSH has been suppressed forever. My T3 was out of the range too.
The next time, early Feb, my T4 was around 18. My dose had dropped from 175 down to 150 mcg. My T3 was still top of the range.
I would imagine you can develop it at any point - if you get the right triggers. But, I don't know for certain - doubt if anyone knows.
I do wonder if this isn’t the issue because when I was tested in Nov/Dec my T4 was 27. My TSH has been suppressed forever. My T3 was out of the range too.
I'm not sure what point you're making here, but the thing to do is to compare results on the same dose of levo. If you're taking say 150 mcg, and your FT4 comes back at 17 (12-22) on one test, then goes up to 27 (12-22) on the next, then it's pretty certain you have Hashi's.
I have had them tested twice, both some years ago.
I see what you’re saying. I can’t compare the two tests because they were on different doses.
I’m going to phone the doctor to see if I can arrange a consultation. I feel bad though because it doesn’t feel like an emergency. Having said that though, I’m not able to function properly just now ....
I have arranged one for tomorrow. I’m going to ask for the blood tests and go from there. He will not be able to do anything at all until he has them. Thank you again.
Most people with primary hypothyroidism it’s due to Hashimoto’s
Vast majority of Hashimoto’s patients have high TPO antibodies or high TPO and high TG antibodies, but a significant minority on have high TG antibodies
NHS refuses to test TG antibodies if TPO are negative
Private testing will automatically include testing both
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Help with blood results please! 
A little explanation please
Need a little guidance please 
A little advice please
