I’ve been on levothyroxine since diagnosis in March 2016 but never really felt any better. Each time I had a blood rest my levels were in range but low so my medication has been increased each time except in April this year when they spiked. I’ve recently had a scan which showed a couple of nodules one being cystic but I’ve been told this is normal and nothing to worry about. My latest results are from 31/10/17
TSH 1.2 0.3-4.2
T4 21.3 12-22
T3 4.6 4-6.8
My gp decided to contact an endo with a view to putting me on liothyrolene because my T3 is low. After waiting 2 weeks for a response I’ve been told that I’m not hypothyroid and should stop taking the medication. Apparently T3 is not a useful test. Really fed up now.
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Redroz1e
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TSH is a little higher than many are comfortable with but FT4 is good almost top of range. FT3 4.6 is fairly typical for someone on Levothyroxine only. It's not particularly low but that doesn't mean you wouldn't feel better with it higher in range.
How much Levothyroxine are you taking now, and what was your TSH, FT4 and FT3 when you were diagnosed?
In that particular endo's opinion FT3 is not a useful test but my NHS consultant endos think it is very useful because they order it every time I have a thyroid function test. Without testing FT3 we wouldn't have known I was a poor converter with FT3 below range despite TSH and FT4 being good.
Well, you aren't overmedicated on 125mcg but I don't think you were hypothyroid at diagnosis. TSH 2.9 indicated thyroid was beginning to struggle but NHS doesn't usually diagnose hypothyroidism until TSH is > 4.2 or FT4 < 12.0. Your FT4 and FT3 were normal for someone not on Levothyroxine. Strangely, FT4 has improved on 125mcg but there's not been much change to TSH or FT3.
Perhaps you could ask your GP to continue prescribing 125mcg while s/he gets a second opinion from another endo.
My GP decided to give me the levo based on my symptoms as well as the blood results as my "normal" doesn't seem to be the same as other peoples. For instance when I was pregnant with my first child they kept testing me for HELP syndrome which kept coming back negative but when I nearly died during an emergency ceaserian they realised I did. My GP has asked me to contact her next week to discuss it further as she knew it would be a shock. I don't think she will obtain a second opinion as she says the endo is a well respected doctor.
You said in your opening post that Levothyroxine has made no difference to your symptoms but if you are reluctant to stop taking it then I can only suggest you ask your GP to get a second opinion or refer you to endocrinology before withdrawing your prescription.
I still have symptoms - tired, weight gain, eyes, joints, skin, nails, memory, depression... etc. though my hair loss seems to have subsided. My GP told me that some people never feel well but I don't want to be one of those people. I do think she will allow me to continue on my current dose if I want to but then I will be one of those people.
I don't think the endo knows what he is talking about. Your levels are like that because you are taking Levo, not because you aren't Hypothyroid.
Have you got some past results you can post? What were your levels when diagnosed? Any others, and say what dose you were taking at the time?
Your GP is right. You could do with some T3 (liothyronine) because your FT3 is very low in range and your FT4 very high in range, showing that you do not convert T4 to T3 well enough.
FT3 is THE most important test.
Have you had thyroid antibodies? And vitamins and minerals - Vit D, B12, Folate and Ferritin?
SeasideSusie I started on 25mg and was increased by 25 each time until up to 125mg. My levels are as follows
8.3.16 TSH 2.9 T4 15.2 T3 4.5 (same ranges as before)
24.4.16 TSH 0.98 T4 19.4 T3 4.5
24.10.16 TSH 1.9 T4 16.1 T3 4.3
3.2.17 TSH 2.1 T4 20.9 T3 4.5
13.4.17 TSH 0.2 T4 23.3 T3 6.7
29.8.17 TSH 3.7 T4 19.6 T3 4.5
31.10.17 TSH 1.2 T4 21.3 T3 4.6
I have had my TSH checked quite a few times over the years with the highest being 4 in October 2012.
I've had my TPO done which was 9 <34
I haven't had any vitamins done since last year and was told they were normal. I was going to ask if I could have them checked with my next blood test.
Have all your tests been done under the same conditions? Ideally, earliest appointment of the morning (no later than 9a.m.), overnight fast (water allowed), and leaving off Levo for 24 hours. If not the same conditions every time then results can't be compared accurately.
Not the first couple as I hadn't found this site then. The others have all been early, fasting and no medication taken for 24 hours as advised on the forum.
So if I've understood correctly, these results were all done following forum advice, the dose you were on at the time gave these results (please tell me if I'm wrong)
31.10.17 TSH 1.2 T4 21.3 T3 4.6 - 125mcg Levo - currently staying on this dose.
If I'm correct then I don't understand the increase from 75 to 100mcg after the 13.4.17 results because FT4 and FT3 are over range.
Also, on a higher dose on 29.8.17 your TSH was much higher than when on the lower dose, with lower free Ts. That suggests to me that there may be some antibody activity and even though TPO are negative, there could be high Thyroglobulin antibodies and they've probably not been tested.
Do you have your old vitamin and mineral results? They wont be much use now but it would be interesting to see what they were and exactly how 'normal' they were.
Sorry SeasideSusie - typing error which I have just corrected and I missed one out as it was the 24th as was the previous one.
I had my doses increased each time expect in April this year when my T3s and T4s were high. The doctor agreed to leave me on the same dose and re-test in 3 months which ended up being 4 months due to holidays. I have discussed the possibility of it being an autoimmune thing as I have vitiligo and she said I was probably right which was why I had the TPO but she says they do not test for Thyroglobulin.
24.10.16
Serum ferritin168 ug/L13 - 200ug/L
Serum vitamin B12446 ng/L197 - 771ng/L
Serum folate9.1 ug/L3.89 - 26.8ug/L
17.3.16
Combined total vit D2 + D3 lvl68.6 nmol/L50 - 150nmol/L
I thought my vitamin D looked low having signed up to Patient Access to get my results so have been taking Vitamin D supplements for around 3 or 4 months now. It is D3 25ug (sorry I don't know what the symbol is on the bottle it looks like a u with a stick on the left hand side).
then considering you were on the same dose in April and August and the blood draw conditions were the same, then there is a very big difference in your levels. In August your TSH has increased and free Ts reduced by a lot more than anything that could be called a normal fluctuation.
I think you have Hashi's and it will show in Thyroglobulin antibodies. An endo can probably get those tested. Otherwise you can get your own private test with our recommended labs (accredited, exactly the same as NHS labs) either Medichecks or Blue Horizon. I really think you need testing, especially since you have vitiligo, so I would get that sorted one way or the other.
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As for your old nutrient results, you were told they were normal because they were within range, but apart from Ferritin, the others could be improved.
Ferritin was very good, in fact a little over the recommended level of half way through range.
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B12 446 ng/L197 - 771ng/L
- an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
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folate 9.1 ug/L3.89 - 26.8ug/L
On he low side, folate should be at least half way through it's range, so you'd be looking at 15.5 plus
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total vit D2 + D3 68.6 nmol/L50 - 150nmol/L
This was too low, the Vit D Council recommends a level of 100-150nmol/L.
25ug = 25mcg = 1000iu and that's not enough to raise your level, it's just about a maintenance dose for someone who is within the recommended range. To raise your level from 68.6 you'd be needing around 3000-4000iu daily for 3 months then retest.
Are you taking D3's important cofactors vitamindcouncil.org/about-v... particularly magnesium, which helps D3 to work, and K2-MK7 which directs the extra uptake of calcium to bones and teeth and away from arteries and soft tissues.
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See what your new levels are when they're tested and you can then supplement accordingly. If you want guidance on dose, etc, just ask.
Thank you so much you have been really helpful. I only take the Vitamin D supplements no co-factors. I will get my nutrients re done - do they have to be under the same conditions as the thyroid check? I will seek further advice when I have them. I will also find out about the antibody check.
Testing vitamins and minerals doesn't really have any specific requirements other than not taking the supplements until after the blood draw, or leaving off iron for a week.
Thank you so much you’ve been really helpful. I’m not taking anything else apart from the vitamin d but I will speak to the gp and get my nutrients checked. Do they have to be done in the same way as the thyroid ones? I will also look to get my antibodies checked too.
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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Just vitamins and antibodies don't need to be early morning or fasting
Worked once only for me,then went to private hospital for blood draw which both Blue Horizon and Medichecks provide.The latter often have deals on a Thursday.
Your results are in range because you are taking levo. It is impossible to say now that you aren't hypo. If you were hypo when diagnosed, you still are. It sounds as though someone had confised your results with those of someone who is not on meds at all. Your free T3 is poor - your endo was quite right to offer T3. You need to find a new doctor - ask louise.roberts@thyroiduk.org for the list of doctors with more of a clue.
Thanks for your support. I feel, like many people on here, like a hypercondriact. I have to formulate a plan so your advice could prove very useful. Thanks again.
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