Because I am feeling increasing ill after my Levo has been reduced before it even reached a level that made me feel well, I trawled through my online results and then made columns. I was hoping to see a pattern and work out how far the T3 and T4 were through the range. Firstly I realised I didn't know how to work out the percentage through the range so if it is helpful would someone be able to tell me how to do it? Secondly I realised that the range for T4 wasn't given so I called the GP to find out. A clinician called me back and told me the range (7.9 - 20) and asked what I needed it for. I explained I was trying to see if there was a pattern before and after diagnosis of Hashi's. The clinician said it was best for them to get all the results of thyroid and vitamin levels sent off to an Endo for an opinion. There is no suggestion of me being seen by one. Is this a good thing?
Just for info - historic results show that before diagnosis TSH was averaging was always between 1.50 and 2 (0.34 -5.6) until October 2020 when it dropped to 0.12. Dec 2020 it shot up to 21.95 and has gradually reduced as medication increased. Dropped to 0.07 in July which prompted the reduction and was 0.26 in October.
Up to diagnosis T4 seemed to gradually increase for 10.5 to 11.4 (7.9 -20) dropped to 7.4 when diagnosed then increased steadily to 18.3 then dropped to 13.4 when Levo was reduced
T3 was always around 5.3 (4 - 6.6) before diagnosis then steadily dropped to 4.8 after medication until there was a hike to 6.9 at the point they decided to lessen the levo then a drop to 5.6 after meds reduced. I know the range is only small but T3 doesn't seem to be much different from before diagnosis despite meds.
I asked for vitamins at the time of the last bloods and they showed them all low but only given meds for Folate and Vit D. On the back of that I argued not to have a further reduction and they agreed to let me stay on 100. As well as the new meds GP order the test for coeliac and that came back negative. I assume it did anyway as GP has never called me and online it says Tissu transglutaminase IgA lev less than 0.5 and range is less than 15.
I weigh 14 and a half stone and have only ever got to 125 on the meds and that was only for 6 weeks before they dropped it again.
What do we think the endo will say?
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Emmastace
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Latest test which included vitamins was done just over 7 weeks after reduction from 125 to 100. It was first appointment at 8am and last Levo was taken 7am the previous morning so 25 hours earlier. Vitamins were Vit D 24 nmol/l (no range given) but GP prescribed Fultlum D3 20000u cpsa twice weekly for 7 weeks then told me to buy over the counter maintenance dose after that (not told what that is). Folate 2.8ug/l again no range but GP prescribed 5mg Folic Acid daily ongoing. Ferritin was 26ug/l no range given and no treatment offered. B12 was 219 ng/l (120 - 625) no treatment offered. B12 was the only result I have a previous record for and been tested 5 times since 2016. Results from 204 to 274 in same range. Other than recently prescribed by the GP no other vitamins taken.
Take your result and deduct the lower end of the range = A
Deduct the lower end of the range fro the top of the range = B
Your percentage trough range = A/B
So with your free T4 results and range 7.9 - 20: T4 seemed to gradually increase from 10.5 [23% through range] to 11.4 [29% through range] dropped to 7.4 when diagnosed [below range] then increased steadily to 18.3 [86% though range] then dropped to 13.4 [45% though range]
Who knows what the endo will say - or even if s/he knows anything about thyroid? - but I would say you were very slightly over-medicated when free T3 went a touch over range, and if that was on 125 mcg a day, you would probably have been fine on 125 mcg a day for 5 days a week and 100 mcg the other 2 days. Dropping your meds by 20% every day has, unsurprisingly, resulted in the big drop you see in the T4 and T3 results. Can you try an argue for that while your appointment with the endo comes through? MOST of us need both frees nice and high in range ... x
I asked for vitamins at the time of the last bloods and they showed them all low but only given meds for Folate and Vit D.
If you have online access for results, please post them along with their reference ranges for all your vitamin tests.
If no online access, get a print out from the receptionist, the results and ranges will be on there.
Hashi's tends to cause low vitamin levels or deficiencies, obviously you had deficiencies if given prescription medication for folate and Vit D. Chances are that B12 and Ferritin are low as well.
What was your Vit D result and how much have you been given?
Do you also take D3's important cofactors - magnesium and Vit K2-MK7?
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Dose should not be adjusted by TSH, this is not a thyroid hormone, it's a pituitary hormone, FT4 and FT3 are the thyroid hormones and tell us what we need to know. We are not overmedicated unless FT3 is over range. Low T3 causes symptoms and makes weight loss difficult. Your GP would do well to familiarise himself with the following:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional 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 ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Having Hashi's complicates things due to the fluctuations that are normal with Hashi's, but adjusting dose of Levo during the swings from hypo to a Hashi's "false hyper" episode and back again may be necessary. Best to adjust yourself rather than the GP lower your dose on prescription, once lowered it's difficult to get it raised again.
Here's the calculator for % through range .. it's in polish , but just put the result in the first box , the bottom of range in 2nd box , and the top of range in 3rd box .. then click on 'oblicz'
.... probably won't be half as interested in your results as you are and will likely say dose was correctly reduced due to TSH going too low ( may or may not mention T3 being over range) may agree to you staying on 100mcg or may say "still need to reduce further" if TSH still below range .
Highly unlikely an Endo will have anything at all to say about vitamins.
Most Endo's think it's primarily 'TSH in range' that matters for hypo's , followed by 'fT4 in range'.... they may discount fT3 results as being 'too variable' to be useful.
If TSH and fT4 are in-range they may well say any other symptoms are 'not thyroid related '
If TSH is below range they may blame that for any symptoms and insist a reduction is needed to fix 'whatever you present with as a symptom'
So basically... don't get your hopes up for an 'in depth consideration' from your average Endo.
They have only suggested sending results to endo because they don't like the idea of you getting involved and thinking about it for yourself. So they ask an Endo's opinion to back up their decisions .. which he usually will., because they are all following the same guidelines.
I am expecting to be fobbed off but I have the bit between my teeth now and refuse to feel like all hell when I know the best I have felt is when on 125 even if that wasn't perfect. They can try and treat the thyroid issue or they can have me camped on their doorstep until all symptoms are investigated and they can prove to me it is something else. I am happy with as many results to as many tests as they can get, now results are online I have a new hobby trawling through them.
Just for info - historic results show that before diagnosis TSH was averaging was always between 1.50 and 2 (0.34 -5.6) until October 2020
when it dropped to 0.12. Dec 2020
(Common early stage Hashimoto’s, transient swing)
it shot up to 21.95 and has gradually reduced as medication increased.
Clearly hypothyroid
Dropped to 0.07 in July which prompted the reduction
What were Ft4 and Ft3 with this test
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Vitamin levels too?
and was 0.26 in October.
Just testing TSH is completely inadequate
What were Ft4, Ft3 and all four vitamins
Up to diagnosis T4 seemed to gradually increase for 10.5 to 11.4 (7.9 -20) dropped to 7.4 when diagnosed then increased steadily to 18.3 then dropped to 13.4 when Levo was reduced
Ft4 should be at least in top third or quarter of range when adequately treated on just levothyroxine
Ft4 of 13.4 is too low, shows under medicated
Low vitamin levels linked to being under medicated
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