Was looking for some advice re Drs being dismissive.
I'm 22 years old and have autoimmune thyroiditis, the antibodies were discovered when I was 16. Have been on levothryoxine since Autumn 2022, starting on 50mg when my TSH was 2.1 as had symptoms, gotire and cyst on thyroid and maternal autoimmune thryoiditis. My TSH was upped to 75mg beginning of 2023 and TSH stabilised between 0.8 and 1.2 in which most symptoms were relieved up until summer this year. I began feeling similar to before I was medicated (extremely fatigued, constipation, dry skin and hair, low libido etc) and had full blood tests in which all vitamins came back normal and TSH was 2.2. I spoke to a GP at this point about inc. levothyroxine dose to 100mg to see if this helped, they said my TSH was in range so could not do this but would repeat blood test in 2 months. Had this blood test last friday and my TSH had increased to 3.2 and symptoms still there. Just spoke to GP who said that my TSH is in range (I know it is but always has been and i thought that they were meant to take this and symptoms into account..). I explained that I felt a lot better when my TSH was around 1 but he said they are not licensed to allow an increase in dose unless it goes above 4.2. I just read my notes from the appointment and they have arranged a team meeting to discuss whether to continue to prescribe me levothyoxine at all or refer to an endocrinologist.
I feel very defeated and that the doctors have been condescending and ignorant whilst almost mocking me for suggesting that it might be hypothyroidism that is making me feel unwell. Is this normal for GPs to do? I moved GPs 3 months ago as I moved house and have not had this issue before. Any advice would be welcome, thanks!
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miafranc57
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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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Retest thyroid levels 2-3 months after increase in Levo
what vitamin supplements are you taking
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
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
I take B12, vitamin D and iron - all came back within normal range in recent bloodtest. I have spoken to 2 GPs at the practice and they are having a team conference so hoping one I haven't spoken to might be more educated on hypothyroidism. Just very concerned that they are discussing taking me off the medication all together as surely this is not the correct conclusion from my symptoms or tsh levels?
Also my FT4 is 15.6 - within normal range so maybe this is adding to their reasoning as why I shouldn't have my dose increased/ shouldn't be taking levothryoxine
Brand did change when I moved gps and picked up new prescription 2 days ago where the 25mg tablet has changed brand again - I did bring this up to the GP but they said it was irrelevant.
Folate was 5.9 (range 2.99-26.8)
B12 502
Ferritin 42 - seems as though ferritin and folate do need to be higher.
Don't think vit D was tested.
Test was 9am and had taken last tablet day before in the morning (around 24hrs before)
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
'he said they are not licensed to allow an increase in dose unless it goes above 4.2'
Sorry, but that sounds like a lot of baloney to me! I would ask him to show you where this section is stated in the prescribing guidelines. Spoiler alert - it is not! Slowdragon has given you the link already but I have included it again so you can see:
You can also point out that the same guidelines state that a general replacement dose is 1.6 mcg per kg, so depending on your weight, you might need an increase. Some people might need more, some are okay with less. However, as you are symptomatic, you very likely need an increase in medication and they should respect that. Besides, I bet they have not even tested T4 or T3, how can they possibly know what your true needs are if they don't test?
I would also try to see a different GP or if all fails, perhaps even try a different surgery? I know it is not ideal, but this might be better than having to argue all the time and still not getting anywhere.
I am awaiting a call from him tomorrow after his team conference about whether to continue prescribing me levothryoxine at all so will defo bring this up then
the section below (in bold) is why they are suggesting to remove your levo , it's from here : nice.org.uk/guidance/ng145/...
However point out this does not really apply to you .... you DID have an improvement . the section is really intended for those subclinical patients for who adding levo made no improvement to symptoms ~ so just keep banging on that levo DID help with xyz and the dose now needs adjusting to keep the levels optimal for you ....
and then use this : healthunlocked.com/thyroidu.... to remind them that multiple refences tell GP's that optimal is most likely to be with TSH between 0.5 ish and 2/ 2.5 ... your current TSh is too high to be considered optimal, and the fact that it has risen since last test proves this .. your pituitary is clearly asking for a small dose increase this is why it has increased the TSH level.
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1
Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2
When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3
Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4
Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
This may help explain in simple terms ( in case GP is simple lol) : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish
I’m a mom to an 18 year old, and not only do I want to give you a big hug, but I want to say that I am impressed with your understanding and how smart and articulate you are and how you are advocating for yourself.
You sound like a full on grown up managing your life, and when my daughter has to do things like that - she sure wishes she didn’t have to!
That being said - this board (as you probably know since you’re here) will definitely steer you right and help you navigate the NHS so you can get optimally treated and stay well.
Please tell us how it goes! We are all here for you.
It is for sure hard to navigate hypothyroidism alone without having GPs who don't listen!
To update you my doctors have had their conference and decided not to take me off levothyroxine but have also refused a dose increase. So I am going to keep pushing for a trial increase to 100mg as mentioned above and also for an endo referral. Again thanks for the support, definitely makes a huge difference being validated on here
I am not in the UK, but know that all the detailed advice above will arm you with confidence to hold the line & advance! As if navigating our health isn’t hard enough, navigating the NHS is a special skill needed!
One small addition from me - You asked about the idea of stopping Levo entirely. I have read many posts here from people on long term Levo where being taken off or going off - even for a very short time - takes months to get back to square one.
I liken our thyroid hormone adjustments to steering a big ocean liner. You tap the wheel then a week or two or four later the boat starts to turn. As you probably know, Levo has a 7 day half life. That means that if you take your pill today… half will remain after 7 days. That’s why the cumulative effect of a consistent dose, and low and slow changes up or down, are required for stability in our bloods. It’s not like taking a pill for a headache - feel the headache, take the pill, works immediately, then wears off.
And because it’s all a chain reaction down to all our cells and the way they interact with all our other hormones and systems, avoid whip lash changes, and do not stop cold turkey ever.
And I see you just joined this forum yesterday. You may consider filling out your profile - and keeping it updated. As you provide updates and new posts, we do refer to profiles to help remind of your details and give best input.
Welcome to the forum! It gave me my quality of life back, and equally important, I credit it entirely with giving me the knowledge and confidence that I’m not crazy - that it IS my thyroid that causes my symptoms - and that for some totally bizarre reason doctors all over the world lack the basics of blood tests and dosing to keep us functioning and feeling well. Many of us feel the same. There are incredibly knowledgeable people here! Soon you will be one 😁
I’m excited to have you here, and to have found this forum so young, you have just saved your self decades of confusion.
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GP panic!
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