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 …
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.
Just to add to what Sparklingsunshine has said about changing doctor, please be aware that you are not obliged to give reasons why you want to see a different doctor to the one you've seen before. In theory they shouldn't even ask, but I wouldn't be surprised if they did.
I had an absolute bee-atch of a GP, I saw her once, hated her on the spot and requested to be put on the list of different one. I didnt give a reason, nor was I asked to.
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
I can’t thank you all enough for the support!! I hope one day I can help others , I have managed to get some test results that got done last may
Serum ferritin 65ug/l
Vitamin D2 +D3 60
Serum vitamin B12 738
I am due more results as he reluctantly did a test this week , but unsure as to what he did , I will get back in touch with them as soon as have results , have had latest results the receptionist could not locate the T3 or T4 so they haven’t been done but my TSH is now 2.8
I think it’s up to me to get correct vitamin and supplement at least it’s a start , so any advice on what I should take and amounts would be so appreciated
This is so helpful thank you !! I managed to get my latest serum ferritin result that is 50 but have limited access to other results will get them when the surgery gives me permission, asked for a call from Dr on weds to discuss further and have so much written down will be on the attack or at least have some understanding now thanks to this help x
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
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!!
First off - you are not alone - there are over 142 K forum members on this site and on any one day you will find someone here to help and support you - even if it is just a moan as we have all been there and have the T shirt.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
We all generally start of being prescribed T4 - Levothyroxine.
T4 is a pro-hormone and needs to be converted in our body into T3 the active hormone that runs the body - much like fuel runs a car-
and to be able to utilise, absorb and convert T4 into T3 in the liver we also need our core strength vitamins and minerals - those of ferritin, folate, B12 and viamin D up and maintained at optimal levels.
We generally feel best with the T4 up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range.
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and ranges and not a TSH seen in isolation as currently seems to be all most people find the GP can order.
Having had a medical intervention and now without a thyroid your HPT axis is now broken - and your Hypothalamus - Pituitary - Thyroid feedback loop now open ended as there is no thyroid in situ to complete this circuit -
and since the TSH relies on this circuit loop working and physiology being complete - just another reason why you can't rely on TSH results seen in isolation.
There are 3 main treatment options :
Some people can get by on T4 only thyroid hormone replacement - Levothyroxine :
Others find that at some point in time T4 doesn't seem as good as it was and by adding in a little T3 - they feel improved and their T3/T4 balance is restored.
Some can't tolerate T4 at all and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find their health restored taking Natural Desiccated Thyroid which is the original treatment for hypothyroidism and successfully used for over 100 years and is derived from pig thyroids, dried and ground down and then made into tablets and which contain all the same known hormones as that of the human thyroid gland.
Currently your doctor can only treat you with T4 and you will need to be refered to an endocrinologist for any other option which now is only T3 - and NDT has been blacklisted for new patients due to costs - though you will not be told this is the reason.
Obviously if you can go Private there is a very different landscape and all treatment options available.
Presumably after surgery you were managed in endocrinology until a suitable dose of thyroid hormone replacement was found for you and before being discharged back to your doctor -
Do you have a discharge letter there stating your TSH, Free T3 and Free T4 from endocrinology ?
Obviously we need current readinds and ranges - and this you first step back to better health :
Start a new post with the results and ranges and you will be given considered opinion as to the next step - it's where have all been - and why some of us come back to help give back to someone else as a thank you for the help they found here and through Thyroid Uk the charity who supports this patient to patient forum
When I had to spend my own money for my first thyroid panel (I used Medichecks) I really resented it as I felt that is something the nhs should care to do (and they should). But, getting the results, learning how to understand them and what needs to be done with them is actually empowering. People here help you with information so you can gain confidence addressing your GP and asking for change (or boot that GP to the curb and get another).
Hi, You are getting the advice you need from members on here and I just want to say that what you have been through is major, having thyroid removed. That little gland is responsible for so much, it is like the spark plugs in a motor engine and nothing works if they aren't firing as they should. So you are not a burden or a nuisance and you are not alone so many of us have had such experiences ourselves and have had to educate ourselves to become empowered enough to stand our ground when being fobbed off . Anyway just wanted to say Hi and send you a virtual🫂 hug!.
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