Hello all,
Is this the best we can expect from GPs when it comes to thyroid 6 months medication review: Serum TSH level - (BC) - Normal Serum TSH level 1.18 mIU/L 0.27 - 4.20mIU/L !
Can we ask for T3, T4, referral to endo and on what basis? They always say given that TSH is in “”level””
I have been with underactive thyroid for 21 year and moved from 50-75 mcg. Thanks.
Yep pretty much, doctors are taught TSH is the only result that matters, a lot of NHS labs will only test TSH and unless abnormal wont test anything else. You might get FT4 if you're lucky. Its why so many of us end up using private blood tests. Its a mix of NHS cost cutting and ignorance about the importance of FT4 and FT3.
Of course you can ask for different tests to what has already been run but the reality is that the lab decides what is tested and can veto a GPs request. Many NHS areas only test TSH these days which is why so many people buy private blood tests.
Have you also had key vitamins tested - ferritin, folate, B12 & D3?
Seeing an Endocrinologist is probably unusual for most hypo people. GP usually treats hypo, although not always well. Seeing an Endo can often be a disappointment as most are diabetes specialists.
Better to arm yourself up with some information, get your confidence up and challenge your GP yourself on how to treat hypo and what you need.
This link has details about keeping TSH lower: healthunlocked.com/thyroidu...
Many thanks Jaydee, I am just ordering one of the tests and will post results here when ready. This place with lovely people does give much needed confidence.
I have been with underactive thyroid for 21 year and moved from 50-75 mcg.
How long have you been on 75mcg
Do you always get same brand levothyroxine at each prescription
How do you feel?
just testing TSH is completely inadequate
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 to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and/or if left on inadequate dose Levo
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Low vitamin levels tend to lower TSH as well
What is reason for your hypothyroidism
Autoimmune?
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
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)
VERY important to test TSH, Ft4 and Ft3 together
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) 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/testing/priva...
Many thanks Administrator SlowDragon, you are helpful as ever!
Not sure how long I have been on 75, guess more than 10 years.
Over the time I had various brands on my request checking if any brand is related to my hand eczema and that’s how I ended with teva. GP issues just Levothyroxine prescription and pharmacy gives me whatever. I feel tired and I’ve accepted that I can’t feel better, I am 65. I neglected myself due to family members health issues but this time I want to check if Teva has anything to do with recently diagnosed intestinal metaplasia via gut biome.
I think my Thyroid is autoimmune, I had Hoshimoto diagnosis abroad, not in UK, if correct. My GP asks for blood test every 6 month but I am now following your advice for private test and will put my results here. I’ve been taking only vid D 4000eu and since recently Magnesium with B6 after period of waking every night at 3 am with anxiety. Reason for my hypothyroidism might be my post traumatic stress from losing my 5 year old son in tragic circumstances 20 years ago (if traumatic stress can be reason). I don’t have goitre. I am now ordering one of the kit, just checking both Blue horizon and Medicheck. Thanks again. Have a good weekend.
post traumatic stress from losing my 5 year old son in tragic circumstances 20 years ago
How terrible, so sorry to hear this
Yes stress and grief can trigger thyroid disease
Many of us need/do better on lactose free levothyroxine
Are you also on dairy free diet. Always worth trying
If you need lactose free levothyroxine GP should specify that on all future prescriptions
Teva possibly not as good as Vencamil
Suggest you try Vencamil first then ask GP to put named brand on all future prescriptions
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024
Prior to March 2023 Vencamil was called Aristo
Vencamil often very well tolerated/best option for many people
How to get Vencamil stocked at your local pharmacy
healthunlocked.com/thyroidu...
Posts discussing Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu....
Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Helpful post about Teva
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
And here
pharmacymagazine.co.uk/clin...
Discussed here too
healthunlocked.com/thyroidu...
I feel tired and I’ve accepted that I can’t feel better, I am 65.
I am also 65
Many thanks for your ususful advice. I am hopeful that Vencamil might make me feel better. I've heard it from several people here. """ Mannitol seems to upset many people, it changes gut biome""this made me think to replace Teva having heard about recent intestinal metaplasia finding after my endoscopy (acid reflux). I am not on diary free diet. Talk soon after my test results arrive from Medichecks. Xx
Chances are a GP didn’t even review your results.
It’s what we’ve come to expect. Not sure it’s what we should expect.
Borderline Thyroid test
Thyroid help 
Thyroid test results
Thyroid help
Latest Thyroid test results - not happy with GP
