I'm so confused though as they differ so much from the results I had from Blue Horizon last week.
*I'm on 125mg of levo and have been since running out of NDT in March*
NHS
TSH 3.22 mu/L range 0.35 - 4.95
FT4 16.1 pmol/L range 9 - 19
FT3 3 pmol/L range 2.6 - 5.7
9am Cortisol 310 nmol/L range 150-600
Blue Horizon
TSH 5.90 mu/L range 0.27 - 1.20
FT4 18.6 pmol/L range 12 - 22
FT3 4.1 pmol/L range 3.1 - 6.8
9am Cortisol 520 nmol/L range 113 - 456
"In a well patient cortisol levels above 400nmol/L make adrenal insufficiency unlikely. Midnight and post dexamethasone <40nmol/l" What does any of that mean??
I just know Endo are going to take one look at my results and say I'm fine. So maybe its all in my head after all 😢
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KayPoole
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To be able to compare results the tests have to be done under exactly the same circumstances and we always advise here:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Did you do both tests like this?
Also, when reference ranges differ we can't compare the result, we have to work out the percentage through range that the results lie.
NHS
TSH 3.22 mu/L range 0.35 - 4.95
FT4 16.1 pmol/L range 9 - 19 = 71%
FT3 3 pmol/L range 2.6 - 5.7 = 12.9%
Blue Horizon
TSH 5.90 mu/L range 0.27 - 1.20 - the upper limit is actually 4.20, maybe a typo?
"In a well patient cortisol levels above 400nmol/L make adrenal insufficiency unlikely. Midnight and post dexamethasone <40nmol/l" What does any of that mean??
Your result is over range, therefore above 400, therefore adrenal insufficiency is unlikely.
I have no idea what Midnight and post dexamethasone <40nmol/l means other than they would expect the result to be less than 40 at midnight and after a dexamethasone test (which you haven't had), and I'm only guessing at that. Hidden can you throw any light on that please.
I just know Endo are going to take one look at my results and say I'm fine. So maybe its all in my head after all
What's in your head? You haven't made another post telling us anything about your current situation.
What your results are telling us is that your TSH is too high and you need your Levo increased to bring your TSH down. Also your FT3 is too low compared with your FT4 which shows poor conversion.
Are your nutrient levels optimal - Vit D, B12, Folate, Ferritin - they need to be optimal for thyroid hormone to work properly and help conversion.
If you were fine on NDT you should go back on it. Was it prescribed? Why are you now on just Levo rather than Levo plus T3?
Both tests were done at 9am in the morning, after fasting for 12 hours. Last levo taken 24 hours prior to tests. I do take Vitamin B Complex, I never knew this effected the test results. It doesn't state that there is B7 in it, but it does have D-Biotin on the list of ingredients.
The comment "In a well patient cortisol levels above 400nmol/L make adrenal insufficiency unlikely. Midnight and post dexamethasone <40nmol/l" was from the NHS result - 9am Cortisol 310 nmol/L range 150-600, sorry should have made that clear.
Last nutrient levels were taken in March:
B12
Serum folate 11.1 ug/L range 3.00 - 20.00
Serum vitamin B12 572 ng/L
Never had Vit D or Ferrintin done. I will request this next.
Also last results done in March included Thyroid Peroxidase ABS 421.2 iu/ml range 0.00 - 5.90. Could this mean I have Hashimotos? I've never had this test before!
Sorry for lack of background. I was diagnosed in 2010 with UAT and put on 125mg levo. After 5 years of feeling rubbish on it, and extensive research, I found Nature-throid in 2015. I found my optimal level after 6 months of tweaking. I had been doing great on them till the changed in machinery in 2018. I even managed to run two half marathons, and even forefill my dream, of running a full marathon. But sometime early 2020 my symptoms started coming back slowly. When they announced a recall in August I had just bought a batch and thought if I sent them back it would be costly and mean I would be without them for too long. When I went to reorder in February 2021 they had stopped selling them and the alternative Armour was now far too expensive for me.
So I called my GP, who to her own admission, said that she did not know enough about the thyroid to help me properly, but would refer me to an endo.
Since then the endo has emailed her and said that my results are in range so no need to see me.
She has gone back to them to fight my corner, so they allowed her to do the latest tests and said that if the come back in normal range, my problems are not connected to my thyroid. I've asked for T3 but my GP thinks its something the endo has to agree to.
My symptoms are mainly sever fatigue, poor stamina, brain fog, low moods (thoughts of suicide), anxiety, insomnia, heart palpitations etc etc
I have had an extremely stressful year with work, so I thought this might have lead to adrenal fatigue.
I have a lovely husband, incredible kids and a beautiful home. I know I'm not depressed. But getting the heath specialists to listen seems impossible .
Also last results done in March included Thyroid Peroxidase ABS 421.2 iu/ml range 0.00 - 5.90. Could this mean I have Hashimotos? I've never had this test before!
Yes high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease
Low vitamin levels are EXTREMELY common with Hashimoto’s, especially vitamin D, ferritin, folate and B12
These need testing at least annually and frequently need supplements to maintain optimal vitamin levels, especially if under medicated as you currently are
TSH should always be under 2 on replacement thyroid hormones
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Do you always get same brand of levothyroxine at each prescription
Many people find different brands are not interchangeable
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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)."
(That’s Ft3 at 58% minimum through range)
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
Oh gosh I feel for you. Doctors are supposed to help you feel better not leave you high and dry. Glad your GP is fighting your corner. You could think about adding T3. I get mine from Turkey where it’s v cheap. It might be worth posting again on here to get advice about where to obtain it and how to add it in if your endo doesn’t help. And just to add if it all feels too much reach out to the people in your life who know and love you. It’s important you get emotional support at this difficult time. Your GP will also be able to refer you for counselling. And of course there is always this community to help you get back to your physical peak. Have you managed to keep up exercising btw which could be key to feeling better. Take care 🤗
I have been having counselling, but I feel a bit of a fraud during my meetings as if I'm wasting her time just moaning. I didn't realise we can obtain T3 only without a GP prescription. I will create another post for further advice. Thanks
Getting T3 on NHS prescription is extremely hard and unlikely with your results. You can get a private prescription though and source it from abroad. You don’t need a prescription to buy it in Turkey however.
Also if you are having sometimes suicidal thoughts you aren’t a fraud going to see a counsellor. Maybe giving yourself permission to get support is important.
Yes, I'll speak to my GP and ask for these levels. Have just had a look through the link you sent about guidance for prescribing Liothyronine. As it suggest other causes could be nutritional deficiency, I can't see them kicking back on testing those. I'm a little concerned about the vitamin D, as I can't take that because I have had Sarcoidosis in the past.
I looked up why Vitamin D is problematic with Sarcoidosis, and found that the problem is that D is linked to high calcium levels. I have read that taking Vitamin K2-MK7 should be taken when on high doses of Vitamin D because it helps the body route the calcium you get from food to the right places -- bones and teeth, rather than being deposited in soft tissues. I take 5,000 IU Vitamin D3 daily, along with 100 mcg of Vitamin K2-MK7. I don't take any calcium.
BTW., the article talks about prescribed Vitamin D being linked to the high calcium levels, but fails to mention that most doctors prescribe a pill for Vitamin D that also contains calcium (which probably should NEVER be taken unless your tested blood calcium levels are low.) sarcoidosisnews.com/2016/10...
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