Hi all, hoping you lovely, informed people can advise again:Background: Subclinical hypothyroidism for many years (first I knew was GP response to blood test few years ago stating 'thyroid condition improving' !
Progressed to full-blown hypothyroidism approx one year ago and started 50 mg Levothyroxine. Felt so ill after a few weeks - anxious, trembly, emotional - not myself. GP referred me to endo who thought they had been symptoms of being hyper and reduced dose to 25mg.
I still don't feel right - flat, depressed feeling, lethargy and unable to lose weight (I was always happy and naturally slim but it's hard to know whether these changes are due to being hypo).
Now the thing I am confused about is this.....
My TSH reduces on Levo and increases off it - as it should.
However, my T4 and T3 don't change or hardly change at all.
They are both optimal or at HIGH end of normal range regardless of my TSH level.
Shouldn't they be low when not on Levo, if I am hypo?
Also....
Why is my TSH high if T4 is fine?
And....why do I need Levo if T4 is fine?
No.antibodies btw. 😕
I am very confused and hope you lovely people can enlighten me.
Thank you so much.
Written by
Buntikins
To view profiles and participate in discussions please or .
Hi SlowDragon. Thank you for your reply. I have been on 25 mg for 5 weeks and am due blood tests in 3 weeks time.The thing is , my T3 was optimal and T4 right at the top end of the normal range before I started Levo, and when I came off it for a while. They remained at those levels when I was on 50 mg Levo, even though my TSH dropped from 10 to 1.26. They don't seem to be affected by Levo or my TSH. Tests always taken first thing. 😕
So you need vitamin D, folate, ferritin and B12 levels tested
Plus thyroid antibodies for autoimmune thyroid disease, also called hashimoto’s, usually diagnosed by high TPO or high TG antibodies…,, or by ultrasound
About 90% of primary hypothyroidism is autoimmune
Initially levels of Ft4 and FT3 can hop about
Getting settled on Levothyroxine and slowly getting TSH down Los can stop this swinging of Levels
Hi again. All those vitamins were tested on diagnosis - all good. Also no TPO antibodies <0.3 😕WBC count at very lower end of normal though - been like that for several years. GP unconcerned as it is (just) in normal range and they think it is normal for me.
I am beginning to wonder whether I need to be on Levo and whether my symptoms are unrelated to being hypo. So confused.
did you feel ok before levo despite TSH 10 ?.. or did you have any symptoms of hypothyroid at that time .
T3 usually stays good in early hypothyroidism , so that bit is not a surprise (the high TSH instructs the thyroid to try to make more T4 , and it also increases the ratio of T3 to T4 that the thyroid produces.. kind of a safety net , because the body always protects T3 levels for as long as it possibly can.
Hi. I did have classic symptoms of hypothyroidism before diagnosis, and still have some now. Endo said that my T3 and T4 were fine BECAUSE TSH was high - it was keeping them optimal, but looking at past records they have been around the same level (optimal or above) both when TSH is high (off Levo) or when it us low (on Levo). 😕
thyroid hormones /HPT axis are so complex that the truth is we can't always explain everything. i have some of my own fT4 results (and TSH results) that i have no explanation whatever for, and neither does anyone else .
so i honestly wouldn't worry too much about why your fT4 level is not moving as much as you expect .......for all you know your 'healthy' fT4 level may have been quite a bit higher than the 'normal' range ..... to get the [95% population reference range] they remove the highest 2.5% of healthy results ( and the lowest 2.5%) you may have in been in that highest 2.5% when your thyroid wasn't struggling .. if that was the case your TSH of 10 was saying "well i want you to make me fT4 of 16, not 12"
the important point is that you have a clear diagnosis, since your TSH has clearly been over range for years and then goes to 10 .so it's not a one off raise .
and more importantly you had symptoms that confirm it... and some of them have responded to thyroid hormone replacement . so the path is clear.. now you 'just 'have to figure out what is the best dose of what type of replacement .. and how to optimise everything else to allow the thyroid hormone to work best.
trying to figure out what is actually happening is like knitting fog sometimes .. and in all honesty treating thyroid disease is as much an art as it is a science,, and anyone who tells you different is either not being very honest .. or is ignorant of it's complexities.
p.s just checking ....are you aware that the 'time of the last dose' affects the FT4 level on tests ?
There is a peak of fT4 in blood, lasting for aprox 6 hrs after taking tablet, which gradually falls until about 12 hrs ,then stabilises, but this timing is highly variable in individuals depending on their speed of digestion/ absorption/ etc , so best practice is to always test approx 24hrs after last dose for consistency.. and always test @9 am ish (before eating breakfast) to pick up highest daily TSH level and avoids any variation from eating breakfast which can potentially lower TSH by up to 30% in some people but not all.
This way you can at least know you are truly comparing like with like (as long as you use the same lab/same ref range)
Aah...thank you, tattybogle, that makes sense. I was just beginning to wonder whether my pituitary was producing TSH randomly, when it was not needed, and my symptoms may have been due to something entirely different, but maybe I am still a little bit in denial - I've never taken long-term meds before. I get what you are saying about T4 and will post when I get my next results. I don't take my Levo on day of blood test and have bloods taken early morning 👍 Thank you for taking the time to share your knowledge.
well it's a theoretical possibility i suppose ..,have you asked endo if they think its necessary to check the levels of the other pituitary hormones ? it makes more than just TSH .
but if it was eg a TSHoma.. continually producing inappropriately raised TSH and going up to 10 then and if there was nothing actually wrong with your thyroid , then ... erm.. cogs going round . bit rusty lol .... erm i would think that you would have had an over range fT4 and probably a very high fT3 because of the high TSH ?
Dunno ... i will have to think about that one a bit longer .lol
Also if it was TSHoma or some other cause of pituitary producing too much TSH despite adequate fT4 levels . then i don't think taking levo would have made the TSH go down so much .? would it ?.. but am just guessing .
I'm unsure 😕 GP was unsure, that's why she referred me to Endo, but she did test Prolactin first, which was normal. It really seems to me that pituitary is producing TSH for no reason, as its level doesn't seem to be affecting FT3 and FT4 at all.Endo is giving me a telephone consultation again in May, so I'll.query it again.
I really appreciate your knowledge and info to help me prepare.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week or two
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Wow. It's all beginning to make sense. I do have low B12 symptoms and am beginning to wonder whether my symptoms are due to this, rather than being hypo.I have been taking B complex but haven't had bloods done since. This 'flat' feeling and lethargy is really getting me down. I feel like life is passing me by. I had a bout of clinical depression in my 30s and it feels different to that. It feels as though it's more physical rather than psychological somehow. The only thing that has improved is palpitations which have reduced.
Thank you for your advice. It is much appreciated.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thank you SlowDragon. I am vegetarian, so will look at ways to increase iron. GP was unconcerned at low-ish level as it was totally in range.I can't find my vit D result, but remember it was in range and I also take a supplement.
so as vegetarian you will very likely need vitamin B complex daily continuously and ….separate B12 initially daily…..may possibly be able to reduce separate B12 to just 3-4 times a week
Get full iron panel test via Medichecks if GP won’t test
How long have you been vegetarian
Down to you on vegetarian diet to test and maintain optimal vitamin levels
Hi. I've been vegetarian for 50 years! No probs until symptoms in recent years. I do supplement with B Complex but have only done so occasionally over the years. I have been taking it since blood tests showed it was quite low though. I take 10 mg Vit D a day too.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Confused about my blood results! Lost! 
Confused and Worried about Recent Bloods - Help Please.
So confused by my blood results.
Very confused about my next move!
Heart palps and confusion about levels
