Any top tips welcomed

[Pinkisbest1]

Hi Everyone, I am still in a battle with the NHS about my treatment. I have an appointment next Thursday with the endocrinologist who is less than useless but these are the results I have to argue with: I started taking 50mcg of levothyroxine in August. I am currently on 50mcg 3 days a week and 62.5mcg 4 days a week. She refused to do the T3 test so I have included the last one I had which was before I started taking thyroxine. My vitamin B12 and iron levels are fine. Vit d is low for me 92 but I am on a very high dose - 45000IU per week.

TSH levels range 0.27 to 4.2

11 March 2025 1.31 mIU/L

24 October 2024 1.23 mIU/L

16 May 2024 2.97 mU/L

Free serum T4 levels range 11.9 to 21.6

11 March 2025 14.4 pmol/L

24 October 2024 17.0 pmol/L

16 May 2024 12.5 pmol/L

Serum free T3 level

02 Jul 2024 Result 4.4 pmol/L

Normal range

3.10 - 6.80

I would be grateful for any analysis or comments that I can use to convince the doctor at my next appointment. I have all the symptoms of underactive thyroid and am currently registered disabled because of the symptoms. Thank you.

[tattybogle]

it's not clear what you want to convince them to do ?

[Pinkisbest1 in reply to tattybogle]

Hi Tattybogle. I'm trying to get a higher dose of levo thyroxine and to try and find out what type of underactive thyroid I have. I keep getting told I'm fine because my results are in the normal range but I am quite ill. Thanks

[tattybogle in reply to Pinkisbest1]

edit , i had written the following reply before i looked at you previous post , i will link it here as it has relevant information needed to help you

previous post : healthunlocked.com/thyroidu....

Even a GP could give an increase with those latest TSH /FT4 results .... you don't actually need a fT3 result to get an increase in your dose ... or an endocrinologist for than matter .

NHS guidelines say GP's can "adjust dose further to optimise wellbeing as long as they don't prescribe doses that supress TSH"

your TSH is nowhere near supressed yet , and your fT4 is nowhere near top of range , so no reason for GP to refuse a trial of slightly increased dose to see if it improves your symptoms .

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. "

[Pinkisbest1 in reply to tattybogle]

Amazing, thank you. I keep trying to get the right wording to get the GP to help...NICE guidelines are always a joy to behold. Unfortunately, my previously good GP has left following maternity leave so I am having to entertain the nonsense from others until I find the one that actually listens. I feel with help like this that I'm getting closer to getting the next GP to help. 🙏🏽

[tattybogle in reply to Pinkisbest1]

unfortunately , i now realise your TSH was never over range hence them not wanting to give levo at all , it means those guidelines don't technically apply to you , they are the guidelines for treating 'primary' hypothyroidism , ie hypothyroidism diagnosed because TSH went over range ... if your TSH never went over range , you are looking at trying to prove it's a pituitary problem ie central/ secondary / tertiary hypothyroidism , and i don't think the NHS have produced any actual guidelines for that yet .

however ,,, the treatment for central hypothyroidism is exactly the same as for primary hypothyroidism ,,, ie give patient levothyroxine .. the only difference is that in central hypo they use T4 levels to adjust dose and ignore TSH level (cos they know the TSH is unreliable in folk with a pituitary problem)

so you can try arguing that the same principle from this guideline still applies to you ...... ie. they should still consider adjusting your dose to try and optimise your symptoms , no matter what the cause/diagnosis is .

[tattybogle in reply to Pinkisbest1]

getting an official NHS diagnosis for central hypothyroidism is notoriously difficult / sometimes impossible ..... my honest thoughts are ,,, do you want to spend months / years feeling ill stuck on not enough levo while you fight them for a diagnosis / more levo ....or would you be better off just accepting the current levo from whoever prescribed it and going to somewhere else like eg Roseway Labs to buy more so you can see for yourself if a higher dose improves things ? i'm assuming Roseway might be willing to prescribe/ supply it for you if you are already being prescribed some officially .... and levo is pretty cheap . So it might be worth asking them at least .

[Pinkisbest1 in reply to tattybogle]

I just want to be well which I believe will happen if I have a higher dose. I will definitely investigate getting a dose from elsewhere but I'm a bit concerned about it being monitored. I am also looking into seeing a private endocrinologist but money is an issue. I'm at the point though where spending some money to get well is more important so I hope to borrow some from my Mum. I haven't been able to work for nearly 2 years now so doing nothing isn't an option. Also, I like going to work and having a purpose so I will definitely be following any advice I get for being well.

[tattybogle in reply to Pinkisbest1]

Roseway might not be very expensive you know , i think initial consult in region of £50 ?... follow up's are less i think and levo cost can't be much .... maybe put a separate post up asking if anyone else gets levo from them , and what costs are like ?

[Pinkisbest1 in reply to tattybogle]

Thanks. I'm definitely going to call them.

[FancyPants54 in reply to Pinkisbest1]

Roseway prescribing doctor is excellent in my experience. She monitors you. And she's very knowledgeable to talk too. The appointments are around £40 for a regular monitor and repeat prescription. I think the first appointment might be a little more, but it's nothing like a private endo. You have to provide blood test results for her.

I buy NDT from Roseway. It's worth a try for Levo.

Another option is the Thyroid Clinic in Bristol. Google it. You can find a good question and answer session on YouTube with the founding doctor there. Again she'd be a better option than a private endo I think. But that clinic is a lot more expensive than Roseway. Both worth looking into though. And if you first want to see if more Levo helps, Roseway is fast and the cheapest option.

[Pinkisbest1 in reply to FancyPants54]

Hi FancyPants54,Thank you for your insight. I will definitely contact them and see what they say. The private endocrinologist was one recommended by someone on this forum the other day. I think they would be good but if I can get help for less and more quickly that is definitely a bonus. I really need someone who understands that "the normal range" doesn't exist if you have really bad symptoms and that treating those symptoms is what matters. I will definitely follow your advice and also watch the video. The Thyroid Clinic is in London too - I looked into going there but the cost was far too high. Especially as I don't know if they are any good. Thanks again.

[tattybogle]

p.s just in case you might find something helpful in it , this post has some links to papers about thyroid / heart .. list is the end of replies i think .... healthunlocked.com/thyroidu... thyroid-disease-effects-on-heart-and-cardiovascular-system.-gps-told-keep-tsh-0.5-2-hypothyroidism-causes-raised-cholesterol