Hi, starting my journey towards trialling some T3 due to extreme fatigue, weight gain and other symptoms. I’ve been on levothyroxine for 10 years (age 36-46), since fertility treatment picked up that I’d actually been underactive for a long time.
Anyway, I understand I need to post my results here before I can be recommended any sources.
Can someone please let me know the test results you need to see? And any good places to get tests done in the U.K.?
I had a thyroid test recently at the GP but got no follow up, told to just ‘assume it’s fine if they don’t call’, you have to pay for printed results and I’m not sure it would be detailed enough anyway. Thanks.
GP results:
July 2023 Serum free T4 12.8 pmol/L
July 2023 Serum TSH 2.4 my/L
July 2023 ‘anti-nuclear lgG antibody lev (PRIY5954) Normal, no action (no numbers provided)
June 2022 T4 was 11.9 and TSH was 4.1
Serum Ferritin was 54 ng/mL
Serum Vitamin B12 538 ng/L
Serum Folate 5.3 mmol/mol
Liver function test normal (numbers provided), Urea and electrolytes normal
MCV high (110.7 fL), ditto MCG (36.7 pg), other elements of full blood count normal.
They’ve helpfully provided blood tests going back to 2021 but hopefully the above is enough to give an initial steer.
My symptoms haven’t changed since 2022, as in fatigue and weight gain have been ongoing since then, so do people think these results are up to date enough? And am I in the category of results that might benefit from a trial of T3?
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You wil need a full thyroid panel - TSH, FT4 & FT3. Also full vitamin levels ferritin, folate, B12 & d3.
There are many companies offering tests. Some you can get a blood draw done by paying extra , otherwise they offer finger prick tests to be done at home and the blood is then mailed to them.
Do follow the instructins for the kit carefully to get blood flowing if you do the home test.
See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
you have to pay for printed results and I’m not sure it would be detailed enough anyway.
I don't think that's right. It used to be that way but pretty sure things have changed. You're legally entitled to a print-out of your blood test results, which should have all the details on it, and you shouldn't have to pay anything.
Thanks. My old surgery didn’t ask but this one (better in many other ways and much more online) does. Might be just for the printing itself. In any case I will persist!
You could always ask them to email them to you. Either that or if you are in England you can download the NHS app and ask for permission at GP reception to see your results on that.
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you. I am on 75mg levothyroxine a day. Was meant to be 50/75 every other but I increased it myself as was feeling so rubbish and they consented. It’s always own brand, I’ve never had a test after a change.
I was diagnosed with graves age 30 and was overactive for a couple of years. Managed to get it under control with meds only, but then went hypo in late 30s so been on levo since then (now 45). I imagine GP would probably put me on HRT before T3 and I’m guessing dropping oestrogen could be part of the picture, or adrenal fatigue, but I think starting off with the tests you’ve all suggested sounds like the best first step. I do take lots of vitamins but I’m afraid I’m not very consistent. Selenium, zinc, magnesium, D3, occasionally iron, and probiotics being the main ones.
They can never get blood out of my arm- last time I had to go and have a hot drink and something sugary and run around the block a few times to get my veins in any state for a blood draw, so it was a far cry from the scenario you described. Have a lot to learn!
75mcg is very low dose, only one step up from starter dose unless very petite
Approximately how much do you weigh
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Thanks. I weight 77.6kg or 12.22 stone. I was on higher levothyroxine during pregnancy and then lowered. There were a few tests as I was brought back down but now it’s just yearly GP tests, and the absolute basics. I used to demand antibodies etc when I was undergoing fertility testing. I also have macrocytosis so my red blood cells are too big but after lots of tests they concluded it’s ‘normal for me’. I wonder if it’s part of my fatigue etc though. I have lots of food intolerances and reactions, albeit not allergies. I also have endometriosis.
Macrocytosis is found in up to 55% patients with hypothyroidism and may result from the insufficiency of the thyroid hormones themselves without nutritive deficit.
you have to pay for printed results and I’m not sure it would be detailed enough anyway.
Far too often GP only tests TSH!
You are legally entitled to printed copies of your blood test results and ranges. At NO COST
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Hey. As others have said you shouldn’t have to pay for a printout of your results. I felt so awful for a long time last year and most of this year. I had a full blood count done including TSH, T3 and T4, plus my nutrients. My B12 was very low, and Vit D not much better so have been on supplements for both. Ferritin, Folate etc all within normal levels but all at the lower end so I’ll be going back to speak to the dr. So you may think you feel like you do because of your thyroid but it may be other deficiencies. Hope you get sorted x
Thanks! In my 30s I was told I had pernicious anemia and was given injections and then my new surgery said I didn’t have that at all, so I’m not on them now but will definitely come back to the group when I have my full results. Sounds like there’s a lot of expertise on here x
I'm under the impression that the GP surgery cannot usually charge a fee.
Can an organisation charge a fee?
In most circumstances, they should give you a copy of your personal information free of charge.
However, an organisation can charge a reasonable fee to cover their administrative costs – if they think your request is ‘manifestly unfounded or excessive’.
They can also charge a fee if you ask for further copies of your information following a request.
If an organisation can charge a fee, the one-month time limit does not begin until they have received the fee.
I consider something like telling you results (whether on the phone or in person) is not acceptable because things like typos and transcription errors, and leaving out reference intervals, are so easy and they compromise the integrity of the results.
Big thanks to everyone for the really helpful and detailed replies, I’m quite overwhelmed and so happy to have found a community with so much expertise and who can help me get answers. I’ve put in a request at the GP and will post again with results asap.
Hi, thanks for the encouragement to insist on results from the GP, it worked. I hope everyone who responded already can see these results, if not I’ll do a new post. Sadly no thyroid antibodies or T3 as expected but some others of use:
July 2023 Serum free T4 12.8 pmol/L
July 2023 Serum TSH 2.4 my/L
July 2023 ‘anti-nuclear lgG antibody lev (PRIY5954) Normal, no action (no numbers provided)
June 2022 T4 was 11.9 and TSH was 4.1
Serum Ferritin was 54 ng/mL
Serum Vitamin B12 538 ng/L
Serum Folate 5.3 mmol/mol
Liver function test normal (numbers provided), Urea and electrolytes normal
MCV high (110.7 fL), ditto MCG (36.7 pg), other elements of full blood count normal.
They’ve helpfully provided blood tests going back to 2021 but hopefully the above is enough to give an initial steer.
My symptoms haven’t changed since 2022, as in fatigue and weight gain have been ongoing since then, so do people think these results are up to date enough? And am I in the category of results that might benefit from a trial of T3?
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