My Levo dose was raised to 50mcg after January blood test, which I was expecting even if it was a battle to get that far. I’ve just received results from recent blood test, TSH only tested - 5.02 (0.38-5.3) marked normal, NFA. It stated - The goal of thyroxine treatment is to achieve a TSH result within the reference range.
I feel another battle coming for a dose rise. I am going to email the GP. Is there a way I can request it so they may actually take notice?
It is so draining everytime! 😔
GP should be willing to increase levo dose if still symptomatic , due to TSH being so high in range ,
inform GP of this latest TSH result and ask for trial increase to see if it improves remaining symptoms and show them the references from this post to support request ~ they all clearly advise GP's to keep TSH between 0.4/0.5 -2/2.5 in all patients on levo:
healthunlocked.com/thyroidu....
my-list-of-references-recommending-gps-keep-tsh-lower-in-range-
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and assuming you in uk , use nice thyroid treatment guidelines also :
nice.org.uk/guidance/ng145/...
" 1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1
Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis. "
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simple explanation of why TSH 'in range' is not the same as 'optimal for the individual' :
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
Thank you for replying so quickly. These results came from my GP so they already know. I battled with them for 5 years to trial meds as they said I was Sub clinical. I will read through the info from you & add it to my email. Yes I am in the UK. Wish me luck!🤞
The prescribing guidelines actually state that a normal replacement dose should be around 1.6mcg levothyroxine per kg of weight (see under initiation and titration):
cks.nice.org.uk/topics/hypo...
So according to this guidance, if you weigh for example 63kg, you should be given 100mcg of levothyroxine (some might need more, some are okay with less). As you are still very symptomatic, you can argue that you would need another increase in your medication, as you are dosed well under this NICE guidance. Even your GP would not be able to argue against this.
I totally agree I should’ve been started higher. They totally ignored that part when first agreed to Levo & gave me 25mcg which is a joke but doc said I was Sub clinical. It was upped to 50 in January. If I mention NICE guidelines again I’m concerned they may stop Levo as it states - 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.
So I probably need to tread carefully when writing the email to request a raise.
Well you can say that you feel some benefit from the dose, but that you think it is not enough to address all of your symptoms, so would like to try an increase in your dose to see if these symptoms further improve.
How are your cholesterol levels? If they are elevated, that is also indicative of low levels of thyroid hormones and especially T3, as the metabolism is not functioning well enough, so levels can accumulate in the body.
I know you mentioned you don't want to change your GP practice, but if you have to constantly battle to get where you should be (and perhaps be even denied further increases or medication), it might be worth reconsidering this again. I'd rather have the hassle of going to a different surgery than being treated like this. And God forbid you have another health concern in the future, would you be given the care and attention you deserve? Just a thought.
Wishing you strength!
I will add that to the email thank you. Cholesterol was 6.4 when last tested almost 2 years ago. They offered statins which I declined as I said I’d rather trial the Levo route first which they totally ignored. You are right about changing doctors, I have thought again more recently. So if I don’t get anywhere that should be my next option which I will consider for sure. Thank you for your advice, extremely helpful.
Here is the NHS's own advice regarding cholesterol levels and that hypothyroidism should be addressed first, before offering statins. It clearly states:
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Not only do they not know that high cholesterol and hypothyroidism are clearly connected, they wilfully ignored their own advice. Really can't get any worse than this in my view.
I would strongly encourage you to change doctors, as they are playing havoc with your health through their ignorance and lack of knowledge.
Stay strong, and I hope you will be able to get it sorted soon. x
Think I need another cholesterol check. I am going to do an E-consult tomorrow morning as it’s closed now 🙄 I will relay all this info & request a dose rise. If it’s a flat no then I don’t have a choice but to see about changing doctors. Thank you so much for your help. I will let you know x
This is a good plan of action, I hope they finally listen but in any case, you know what needs to happen - you can do it! Keeping my fingers crossed for you.
Yes, please let us know how you are getting on, take care x
I gave up trying to do an econsult & I rang doctors & left a message asking for my dose to be raised to 75mcg for a trial period. The next thing I get a text saying a prescription has been sent to pharmacy for me! Gob smacked 😮
Oh wow! 👍That is great news for you I am so pleased that you finally get what you need.
Perhaps firmly standing your ground and being assertive did get you where you need to be. I do hope you start feeling the benefit from the dose increase soon. Just keep in mind that 75mcg can be a bit of a funny dose and you may need a further increase after that. However, you are on the right track and being on the higher dose could also help you to feel stronger mentally, which will make you better equipped for future discussions.
Keep on improving your nutrients if any of them are deficient and get another thyroid check (TSH, T4 and T3) after 6-8 weeks on the new dose, so you can see where you stand and if you need a further increase.
Well done! 👏👍😉
Thank you, I am happy to be finally getting somewhere! They are calling me back for a blood test in 6 to 8 weeks. It is next on list to tackle Ferritin etc. Thank you 😊
You might find some tips and info helpful in this recent post …..where member has managed to cajole the next increase out of GP
healthunlocked.com/thyroidu...
Thank you SlowDragon. The more info the better.
Levo before a blood test
Sudden increase in TSH
Side effects after a dose increase?
Another tsh question please?
