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.
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Pinkisbest1
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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
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 .
"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. "
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. 🙏🏽
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 .
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 .
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.
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 ?
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.
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.
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
Thanks, yes, I have read that article. The endocrinologist refused to accept the information and blamed it on my weight even though my cholesterol was fine until it shot up in the last two years. I spent summer with heart failure which vanished within 3 weeks of taking thyroxine but the endocrinologist said I got better because I got what I wanted with getting the prescription. I'm just so grateful that this forum has so many knowledgeable people. It has really helped me to educate myself so that when I go to the doctors I know if they are doing the right thing. I've spent my whole life with many of the symptoms of underactive thyroid but have been fobbed off as I didn't know better. Thanks to this community I can seek out the help I need. It is taking longer than is ideal but I am getting closer. 😎
wow , is he going to publish this ground-breaking discovery that heart failure can easily be cured by utilising the placebo effect ? it will save thousands of lives ,and reduce the waiting lists for heart ops... he'll surely get a medal .
(It's a woman, in fact there's two of them - one senior, one junior). Lol!!! True! I put in a formal complaint then the senior one raised my dose from 50mcg per day to 75mcg but only on Saturdays and Sundays. They are so petty. Anyway, like you I'm eagerly awaiting the publication of this ground breaking research.
The senior one will have a second paper out soon too... when I complained about pins and needles in my hands she said it's carpel tunnel caused by the fat on my arms pushing in on my wrists. I wouldn't mind but I don't have fat arms!! And I have pins and needles in my feet and legs too!!
ESSENTIAL to test vitamin D, folate, ferritin and B12
Low B vitamins likely cause of pins and needles
Carpal tunnel is extremely common hypothyroid symptom
Get yourself FULL thyroid and vitamin testing
what vitamin supplements are you taking
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
Thank you. I have vitamin b injections so my levels are always high. My vitamin d is a problem. I don't seem to absorb it and I definitely have pain from that but I take 45000IU a week so I'm going to start taking vitamin k too. I have prescriptions for lots of vitamins because of having bariatric surgery- vit d, vit b12, Sanatogen A-Z. Then I take magnesium too. I was taking Ferrous fumarate but it gives me allergies so I'm not taking it but my iron levels are normal. * as with everything else!!). I am aware of the times that give the best results but I am unable to get to the hospital or doctors at the right time which is annoying but a reality. I am going to the endocrinologist and GP next week so I will see what I can get them to do. Otherwise I'm going to pursue the other options suggested in the chat. I am very grateful to finally have some options instead of battling with the NHS doctors.
One thing I have found that works in the past is to ask for a "trial" of upping the dose. They seem to be a bit more amenable to that. I have never had one ask me later how the "trial" is going!
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