Hello I am new here and didn’t realise such sites existed, I had a total thyroid removal in 2022 due to a massive goiter and have been on levothyroxine since , My Dr is horrible to me and states I am only entitled to 1 blood test a year but I find that after flu , covid or nasty bugs I spiral into a horrible anxiety that I never had before I had the removal . I have ended up with my husband calling ambulance as it got that bad , I felt like I shouldn’t be here and this isn’t me at all , I get blood tests at a push and they range all over the place but did stabilise at 125 mg , I have now been told I may be too high in dose but don’t really understand, I did take extra 12.5 thinking I needed it but he told me off about that ! I feel very alone and a burden but would love to understand more then perhaps help others . My biggest concern is feeling normal again which I know happens but why does this crippling anxiety affect me so much and can I change it …
Thank you for reading x
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Primrose745
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Please be reassured, you are not alone… this is a helpful and supportive forum and members are here to help! 🦋
So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
In the first instance, ask your GP for a copy of all results (you are legally entitled to this).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
High anxiety, for me, signals my thyroid medication and/ or key thyroid vitamins are not optimal. Please remember when medics say ‘normal/ within range’ this may not be the same as optimal’ where you feel most well.
Thank you so much for replying…I can see my TSH serum levels and these last year ranged from 5.9 to 1.2 last test , I wouldn’t mind having to pay as hate to be a drain on people in need as it affects my life so much but wouldn’t know where to start , my Dr makes me feel like I’m a drain on his funds ! But I only see them when it’s affecting my life , I’m determined to understand more about this .,
Testing TSH alone is insufficient. If you are able, I would look at private options for a full thyroid/ antibody and key vitamin test.
Patient to patient tip on blood draw- ensure that blood taken early morning (before 9am) when TSH at highest. Drink only water before test. Leave your daily dose of Levo until after the blood test.
A basic thyroid function test or TFT for short is cheapest from a company caled Monitor My Health, who also happen to be an NHS hospital based in the SW who offer private blood tests. This can be useful to know as some GP's can be very snotty about private blood test companies.
You sign up an account, order and pay for the test kit which comes via post. It will contain all you need. Its a fingerprick test so you get blood from finger (s) and then send the sample back to them for testing. Its around £29 if you get a discount code from the Thyroid UK website.
I dont know if MMH tests thyroid antibodies but if you are hypo due to thyroidectomy then I dont know if its all that important. The turnaround can be very quick. I've had results the next day.
The otherpoint is can you change doctors, yours sounds terrible. I wouldnt tolerate such off hand treatment myself. He's supposedly there to offer care and support. You dont have to take his crap.
I'd either ask to see another GP, change surgeries or be prepared to make a complaint. He shouldnt be making you feel like you are a burden. He has responsibilities for your health and wellbeing that he is being well paid for. If he cant fulfill that then please look for someone who can.
You will get lots of support and advice on this forum. There are many knowledgeable people and certainly all of us have experience, many of us with unhelpful docs. Information is everything and it will be forthcoming as your post gets seen on here. Try not to worry, we’ve all been where you are and survived!
Do you always get the same brand of levothyroxine at each prescription
Many people find different brands of levothyroxine are not interchangeable
Are you currently taking any vitamin supplements
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
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.
Do you know if your goitre was autoimmune?
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)
Essential to test vitamin D, folate, ferritin and B12
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
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
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
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Thank you so much ! Yes I had a gastric bypass years ago and take lots of vitamins B12 etc and magnesium/ calcium, Have never stopped taking before a test , Dr just doesn’t seem to believe me .. Do you think if I asked I could be referred to Endocrine clinic , I remember I did see someone a while ok who was helpful but my Drs are awful , call me a time waster but this seems to affect my life so much , Thank you for your help x
First step is get FULL thyroid and vitamin testing done privately
See where levels are and if vitamins need improvement
You only need stop any supplements that contain biotin before test…..that’s usually Vitamin B complex
Exactly what vitamin supplements are you taking
any medications?
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
Even if you are considering seeing a private endo, it’s best to have all tests completed prior to this. The tests invariably cost more at a private hospital. More importantly, you can have results at hand to discuss at your first appointment.
As a plan: I would test privately, share results with us, follow advice received here and then (if needed) look to see a private endo (after consulting TUK list/ members here for recommendations).
Fine tune dose and brand levothyroxine …so that Ft4 is at least 60-70% through range
Retest thyroid and vitamin levels
Then ….if Ft3 remains low in comparison to Ft4 …..see thyroid specialist endo
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
You can start a new post, asking for recommendations in your area. Admin will then close this post, as replies will need to be via Private message, as per forum guidelines
A list of thyroid -friendly endos (NHS and private) can additionally be requested by contacting Thyroid UK:
Your doctor is a bully. And there's only one thing to do with bullies and that's to stand up to them. He's only a human being, you know, not some sort of super god. And if the see they have a patient that's not going to put up with their nonsense, they soon back down, in my experience. No-one has the right to talk to you like that. You are not a time-waster, you are just asking that he does his job - what he gets paid for! - and make you well. Doctors like that get very short shrift from me - and I've met a few!!
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There's a long road ahead but for the first time in a very long time, I don't feel alone
Full removal of thyroid and parathyroid anxiety levels very high
Feeling very poorly
Feeling low, confused and anxious. Writing to GP
Very Unwell
