A couple of years ago after much pushing with my doctors I (21f) was diagnosed with Hypothyroidism, and prescribed only 25mcg of Levothyroxine. This never helped me feel better, however subsequent blood tests came back “normal” and my dose was never increased.
For the past year and a half I have raised with my GP surgery every few months that I am sure my thyroid levels are not right, and that I am developing increasingly worse symptoms. Each time I have been brushed off. During this period I have had my bloods tested 3 times and each time I am just told my levels are “normal”. They are always extremely reluctant to give me any figures for this, the only information I currently have is that in September 2020 my TSH level was 3.24 which I do understand is within range?
The last time I had blood tests and raised the issue with my GP was a couple of weeks ago. I am not sure what specifically was tested, I believe general blood tests. I got no feedback on my Thyroid levels, just a letter saying my Vitamin D levels are a “bit low” and to buy a supplement to take daily, despite the fact I already take a supplement and have been for the past couple of months.
I feel like I am going insane protesting that I am still symptomatic and being repeatedly brushed off. I know the dose I am on is no real dose at all. Do I have a case for pushing more? I am considering paying for a full thyroid panel from a service such as Medichecks, do people recommend this? Thank you in advance.
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ellecoco
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Yes! Get private tests done of T3 t4 and tsh and vitamins too then post results here. It's pretty clear you should have had a dose increase but get tested and start taking control of your health from here. Many people are let down by their docs. Also, I'd insist on a referral to an Endocrinologist. Look up the NICE guidelines - were entitled to a referral if our symptoms are not being managed.
25 mcg is a tiny starter-dose - usually for the elderly and infirm. Most people start at 50 mcg, and you then need regular blood testing, and dose increases, until TSH is ALWAYS less than 2 and you feel well - which probably means TSH is less than 1 - and free T4 is nice and high in range. So yep, you're under-medicated,
Yes to private testing! There are discounts on the main Thyroid UK site and some additional random discounts on a Thursday here. SeasideSusie gives great tips on how to do a home blood test - click on her name and look at her replies to other people. At a minimum test TSH, free T4 and free T3 together - and if you can afford it, do key nutrients too - ferritin. folate, vit D and B12. Post the results here (along with the lab ranges which vary from lab to lab) and the lovely people here will help you to understand them.
ALWAYS do an early morning fasting blood test (when TSH is highest); with a 24 hour gap from your previous dose of levo. And generally, you will get the most form your levo if you take it just with water, 2 hours after or 1 hour before other food and drink. Good luck x
Bloods should be retested 6-8 weeks after each dose increase
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Essential to test thyroid antibodies at least once
Essential to regularly retest vitamin D, folate, ferritin and B12
Being under medicated for thyroid tends to result in low vitamin levels
Low vitamin levels tend to lower TSH
Just testing TSH is completely inadequate
TSH should be under 2 as an absolute maximum when on levothyroxine
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
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies NOW
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Even if we frequently don’t start on full replacement dose, 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
Levothyroxine doesn’t top up failing thyroid, it replaces it
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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
have had my bloods tested 3 times and each time I am just told my levels are “normal”. They are always extremely reluctant to give me any figures for this, the only information I currently have is that in September 2020 my TSH level was 3.24
just a letter saying my Vitamin D levels are a “bit low” and to buy a supplement to take daily
You are legally entitled to printed copies of your blood test results and ranges.
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.
I am so sorry you have been treated so badly by the GP - there is no excuse for brushing you off - if you went to see them, you have concerns and they are supposed to listen and act on those concerns. So often they do not.
Get your results. Dont take no for an answer - you are legally entitled to them. Just ring the receptionist and ask for the blood results for the last two years, and you will pick them up. If they ask why, you can say "they are mine" or "you are not supposed to ask that". Once you have them, stick the latest results here and the brilliant people here can help you further.
Those of us who have been doing this a while understand the importance of getting your results and taking control of yourown health.
Good luck, and hope we can help you feel better soon.
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