hi. Had bloods done last week and
TSH was 0.15. (0.3-5)
T4 was 16.9. (9-25)
When tested last December 2022
TSH was 1.7 (0.3-5)
No T4 test done
test May 2022
TSH was 0.55 (0.3-5)
T4 was 17 (9-25)
I have received a call saying the doctor is going the phone this afternoon to discuss out of range result
I’m worried that he will change my dosage of 100 m which I have been on since 2006.
Also wondering why TSH level varies ?
Thanks for any help
Refuse to reduce dose until had full testing including Ft3
Just testing TSH and Ft4 is completely inadequate
FT4: 16.9 pmol/l (Range 9 - 25)
Ft4 is only 49.37% through range
ALWAYS test Thyroid levels early morning, 9am latest, only drink water between waking and testing…..and last dose levothyroxine 24 hours before test
Request GP retest TSH, Ft4 and Ft3 together
Also if vitamin D, folate, ferritin and B12 levels last tested more than 6 months ago request retesting
What vitamin supplements are you currently taking
thanks for your reply.
No vitamin testing done.
I take vit D and B12
How much vitamin D per day
When did you last test
all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
lizziep
Also wondering why TSH level varies ?
It varies with time of day, it has a circadian rhythm. Highest early morning, lowest is in the afternoon. See graph attached.
Also, when testing certain foods and drink can affect TSH so best to have water only before a test and test at the same time to compare, ideally 9am.
Don't let GP adjust dose by out of range TSH, your FT4 is well within range. It's over range FT3 that shows overmedication and they don't bother testing that!
Thank you
Have you ever had thyroid antibodies tested for autoimmune thyroid disease (hashimoto’s)
IBS suggests Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Both dairy and gluten are inflammatory foods
A strictly gluten free diet helps or is essential due to 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 may 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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Cholesterol and hypothyroidism
High cholesterol suggests inadequate dose levothyroxine
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Thank you.
I have just spoken to the doctor and his first comment was to say that my dosage should be lowered but when I said no he backed down straight away. I asked for test for t3 as well as t4 and Tsh but he was adamant that they don’t test for that so will get that done myself. He asked me to book another test for tsh and t4 via them in 3 months.
Thanks for Gluten free advice I am not coeliac ( tested years ago as my son is coeliac) but I am gluten intolerant and have followed a strict gf diet for about 5 years now
I am struggling with my food at the moment as I’m pre diabetic and have been put on a low sugar and low carb regime which has so far made no difference In fact that was the other reason the doctor phoned as my blood test showed a worsening of blood sugar levels not an improvement!
I am to see the diabetes nurse but feeling quite fed up to be honest think I’ll be eating just dust soon 🤣
Thanks again for your support 😊
So if your gluten intolerant you’re highly likely to have poor conversion of Ft4 to Ft3 and/or low vitamin levels
Come back with new post once you get FULL thyroid and vitamin test results
If you are struggling to convert FT4 into T3, then you are possibly under medicated not over medicated and under medicated, ie still hypo, leads to your issues with blood sugar, weight and lipids (cholesterol). Get the thyroid dose right (not using TSH) and those other things resolve.
Well done on refusing the reduction.
when I spoke to the doctor and refused the lower dosage I asked for my results be sent to the Thyroid Register clinic. I have just received a letter from them saying my results show I am on the correct dosage and no adjustment is needed. Feel vindicated in standing up for what I believed. Thanks all for the support.
I'm not aware of this Thyroid Register - can you give a few more details please :
Up until around fifteen or twenty years ago, it was mandatory for GP surgeries to maintain a register of hypothyroid patients. (Don't think it applied to anyone else, but I could be wrong.) Might only have applied in England.
The idea was that the surgery should use that to ensure no hypothyroid patient was missed for annual tests/checks.
That was the historic use of the phrase "Thyroid Register".
Nowadays at least one area says it maintains a Thyroid Register as a special clinic service to sit between GPs and consultants: Leicestershire. There may be others.
There is a link, but when you get there, it feels ever so out of date. And nothing is visibly dated. I have my doubts it has been maintained and suspect it just sits there.
Yes I am in Leicestershire. I hadn’t realised that we are the only one left 😊
Maybe this clinic could open up and offer their knowledge and sounding board service throughout the country and at least we then have an " approved second opinion " if we feel the need for arbitration.
Did you need to supply a further blood test or did they simply go with the original details you shared with forum members ?
They used the results from gp test. Usually I have an annual letter and form from them I then book a blood test at my surgery and the surgery send the sample and form to the lab. A letter is then sent to me and the surgery saying if dosage is ok. This year I had not received that form and that is why I asked for the results (which were from a full bloods requested by surgery) to be sent to them. The letter received yesterday says that I will still be receiving the form next year so it seems that this service is still running here in Leicestershire.
How interesting - and getting a full thyroid blood test as standard - I'm jealous !!
I had to pay my hospital laboratory to run a Free T3 and Free T4 for me ( £34 ) -
and then even with the obvious imbalance of my T3/ T4 thyroid hormones I was refused any other treatment option to the T4 monotherapy I was prescribed :
I 've now been self medicating for around 5/6 years and arrange my own private blood tests and am much improved.
When I say full there is never T3. There dosage is based on tsh and t4 results
Ah, ok then - so your T4 wasn't over range and the decision a logical, obvious one.
My situation was very different - I'm with Graves post RAI thyroid ablation.
My TSH never recovered and was stuck down under range if I was to feel well with a T4 sitting at the very top of the range and it was assumed I was over medicated and spent around 2 years in an ever decreasing circle of wellness just to get a TSH in the bottom of the range.
Details on profile page :
well done
What are the actual results
TSH, Ft4 and Ft3
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Plus you need folate, ferritin and B12 tested at least annually and vitamin D twice year
Low TSH and menstrual cycle 
low TSH higher cholesterol 
Is this TSH and T4 too low?
High cholesterol and low TSH
