I have posted a few times before due to feeling no better despite being on levothyroxine since my Hashimoto diagnosis in Feb 2018. I don't know how to share the posts but they describe my symptoms and struggle so far.
I saw an endo almost two months ago who told me to increase my levo so that my Free T4 goes over the recommended range, he said some people just have to do that in order to get enough T3/take up by the cells etc. At the time I saw him I was taking 75mg of levothyroxine per day(once a day in the morning before eating and leaving at least an hour before eating or drinking) When i went to see him, my results were as follows;
27/12/2018 (Taking 75mg per day)
TSH 3.44 m[iU]L (0.3 - 4.5)
Free T4 22.2 pmol/L (10-22)
I increased to 100mg levothyroxine per day as instructed by the endo (taken first thing in the morning) Two weeks into taking this dose, I started to get some increase in my underactive symptoms, for instance my constipation got worse (as bad as it was at the time of my diagnosis when my T4 was 6 and TSH over 100) My hands and feet became colder. I stuck to the dose until my blood draw because I wanted to do what the endo said. My results are as follows (Note - new ranges, I think due to changing GP surgery)
09/04/19 (Taking 100mg per day)
TSH 0.1 mu/L (0.40 - 4.90)
Free T4 15.5 pmol/L (9.00-19.00)
I also managed to get vitamin D(the only vitamin I had not had tested) and T3 tested;
Free T3 5.1 pmol/L 5.1 (2.60-5.70)
Vitamin D 66.8 nmol/L (>49.90)
I am really confused and shocked with these results. If anyone knows the answer to these I would really love to hear your thoughts(or anything else at all you can add!!)
Is mu/L the same as m[iU]L ?
Is my vitamin D result ok?
I thought that the reason why I was still feeling the same was because I wasn't converting to T3 properly however this seems to show that t3 conversion is fine?
Free T4 - If i was borderline high before, why has this gone down on a higher dose!?
TSH - Why has this drastically reduced to the point where the GP want's me to go in because it suggests being over medicated and yet my symptoms suggest i am more underactive than on 75mg!?
I am really sorry for the long, confusing post. Any thoughts would be really appreciated. I don't really want to go back and see the endo because I have to pay privately and I don't like him. He told me to stop researching online, and wont prescribe anything other than T4. He seems to think he knows it all, when he really doesn't and he clearly has no interest in learning from his patients so I don't see that there's any point in spending more money.
THANK YOU
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5678sar
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I saw an endo almost two months ago who told me to increase my levo so that my Free T4 goes over the recommended range, he said some people just have to do that in order to get enough T3/take up by the cells etc
TSH 3.44 m[iU]L (0.3 - 4.5)
Free T4 22.2 pmol/L (10-22)
Well, yes, he's right in a way, some people do need over range FT4 to make enough FT3.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, mentions this in an article in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
The information is in answer to question 6.
But there is a limit to how far we should go - my FT4 got up to 30 (11.8-24.6) with a suppressed TSH and still the lab didn't test FT3 - before my GP said I had to reduce my dose of Levo.
Your endo should have been wondering why you had an over range FT4 yet your TSH was still quite high in it's range.
I increased to 100mg levothyroxine per day as instructed by the endo (taken first thing in the morning) Two weeks into taking this dose, I started to get some increase in my underactive symptoms
09/04/19 (Taking 100mg per day)
TSH 0.1 mu/L (0.40 - 4.90)
Free T4 15.5 pmol/L (9.00-19.00)
Free T4 - If i was borderline high before, why has this gone down on a higher dose!?
TSH - Why has this drastically reduced to the point where the GP want's me to go in because it suggests being over medicated and yet my symptoms suggest i am more underactive than on 75mg!?
This is all likely down to the fluctuations in results and symptoms that is par for the course with Hashi's. Altering dose of Levo during these swings from hypo to "hyper" and back again may be needed. You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Free T3 5.1 pmol/L 5.1 (2.60-5.70)
Was this tested at the same time as the TSH/FT4 on 09/04/19 or was it tested separately on it's own?
Is mu/L the same as m[iU]L
Yes, it's the same.
1U = 1IU - IU (international unit) is the same as U (Unit), it's just two ways of saying "Unit".
Vitamin D 66.8 nmol/L (>49.90) = [26.72ng/ml]
Is my vitamin D result ok?
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). To raise your current level to the recommended level the Vit D Council suggests supplementing with 3,700iu D3 daily
When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
As you have Hashi's, for best absorption it's recommended to use an oral spray or sublingual drops to bypass the gut. Many members use BetterYou spray. I like Vitabay Organic D3 liquid.
There are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
5678sar, how are you feeling? are you feeling better on the 75 or on the 100 dose? Maybe you can try 88 mg, which is in between and see how you feel. 100 mg looks like it might be too much.
Testing positive for DIO2 gene variation can help persuade endo to prescribe
Just my two cents. When you add more thyroxine you can suppress your TSH a bit, which tells your thyroid to produce more T4 or less T4.. You were releasing a lot of your T4, then you added exogenous T4 supressing your own production, meaning, TSH dropped and T4 too, so this is why you may feel more hypo. Anytime I change my dose, I feel generally more hypo in the beginning (negative feedback loop?, tsh adjusting etc). How long have you been on 100?
Thank you, I’ve been on it for nearly two months now. Have you ever tried splitting your dose, I’ve heard that some people benefit taking half in the morning and half at night...?
Has there been any improvement in two months? We're these labs done at 2 months? Some people split it, correct, I recently did that when I was overdosed, but the question is - do you feel overdosed?
No improvement, I feel more “underactive” even though I’ve been on a higher dose for two months. For instance worse constipation than on the lower dose of thyroxine!!
It can happen. So your TSH is lower so it stimulates your thyroid less, there is less t4 (even though you take more), as we can see by your ft4 test. Maybe send a note to endo that you would prefer to lower it to either what you were on or midway to 88? Did you talk to him/her?
I don’t want to see my endo again, he’s too arrogant and doesn’t seem very experienced in thyroid issues where Levo isn’t working. Also I had to pay privately and I can’t really afford another £150 at the moment. I have a GP appointment in a weeks time and so I am going to ask her to maybe refer me to a different endo through the NHS.
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