Been given a dose increase at last

[Pastelart]

Almost 3 months after starting Levothyroxine 25 micrograms, I followed advice given on this forum and wrote to my doctor pointing out guidelines , quoting Dr Toft and attaching a photo of Levothyroxine packing leaflet. I also said that I was confused about her reluctance to increase my dose as I have never had heart problems, nor am I frail. Anyway, she phoned me and agreed to an increase 🥳

I was worried that she’d take umbrage, but was pleasantly surprised.

I’m really grateful to the person who gave me this advice, sorry, forgotten who it was and would encourage others in my position to write to their doctor if they’re not being listened to.

Didn’t Nadine Dorries say that we have to demand the treatment we deserve?

[shaws]

Our heart and brain have the most T3 receptor cells but I believe few, if any, doctors are aware of this. Our body cannot function without T3 at all. T4 (levo) should convert to T3 but if you're on an insufficient dose you will not improve.

I'm glad GP listened to you.

Also request B12, Vit D, iron, ferritin and folate at the next blood draw. Everything has to be optimal.

[Pastelart in reply to shaws]

Hi Shaws, my journey back to normal will be a long one and as I’m not yet on a therapeutic dose, I won’t know for some time whether I convert or not. I’m hoping that my letter will alert my doctor to the fact that I know more about my thyroid than she does and will make her more open to listening to me in the future. Apart from my low ferritin last August, my vitamins were quite good. Am thinking of asking to be tested again, but fear that my request will be denied.On this point, how can we make the health department more aware of the devastation caused by low vitamin and mineral levels and how a simple blood test could save them billions spent on antidepressants and mental health care. Perhaps we should all write to Nadine Dorries.

[shaws in reply to Pastelart]

Not everyone gets diagnsed - even when displaying severe clinical symptoms. Once-upon-a-time - before blood tests were introduced, we were diagnosed upon our clinical symptoms alone.

All of our old-fashioned doctors knew all clinical symptoms and people were given a trial of NDT (natural dessicated thyroid hormones). NDT was brutally removed a few months ago - leaving patients shocked and unable to get them prescribed at all. Just as they did with T3 too.

What kind of people who are at the 'top of the tree' re endocrinology make these awful decisions and upset/unwell patients whose clinical symptoms returned with a vengence.

You can click on my name which will take you to my 'page' to read my journey to being diagnosed.

I hope you will soon feel much better as the majority of members are more knowledgeable than some endocrinologists.

[SlowDragon Administrator]

Absolutely brilliant

Which brand of levothyroxine are you currently taking?

Try not to change brand when you increase dose to 50mcg

Bloods should be retested 6-8 weeks after each dose increase

Likely to need further increase in levothyroxine after next test

[SlowDragon Administrator]

It was Hidden who suggested writing letter …..well done to her

healthunlocked.com/thyroidu...

[Pastelart in reply to SlowDragon]

Thank you SlowDragon and forever grateful to plantlady. I will keep testing with monitor my health every 6 weeks, as my doctor is accepting their results.

[SlowDragon Administrator in reply to Pastelart]

If you can wait 8 weeks likely better

Only test early Monday or Tuesday morning and post back via tracked postal service

[Pastelart in reply to SlowDragon]

Thank you again and I didn’t say... I’ve been given Northstar, no Teva, seem to be fine on them. Early days, we’ll see. Why do you think I should wait longer to do my test?

[SlowDragon Administrator in reply to Pastelart]

Well you can test at 6 weeks

Many of us find it better to wait 8-12 weeks

See how you feel

Beware Northstar 25mcg is Teva

Northstar 50mcg and 100mcg are Accord

Accord don’t make 25mcg tablets

Accord also available as Almus via Boots

[Pastelart]

My pharmacist has stated on my record that I’m not to be given anything containing Teva. Does it matter that I was on Wockhardt and now NorthStar?

[SeasideSusie Remembering in reply to Pastelart]

Pastelart

Wockhardt only make 25mcg tablets so it would be a case of multiple dosing of that one or dispensing a 50mcg tablet made by someone else.

As Teva causes adverse reactions in a lot of members, and it is thought to be due to the mannitol it uses instead of lactose, then we always advise members to be aware of this. All of Teva's tablets contain mannitol, and 25mcg Northstar is made by Teva so that will contain it too.

50mcg Northstar is made by Accord and none of Accord's Levo tablets contain mannitol. If you are fine on that brand then in future the following brands will be fine for you as they are all made by Accord

Accord

Northstar - 50mcg and 100mcg (but not 25mcg)

Almus

[Pastelart in reply to SeasideSusie]

Thank you SeasideSusie. Despite the fact that my pharmacist is looking after me re mannitol, I still check before taking my prescription.SlowDragon mentioned that I should wait for longer before doing my next blood test. On the packaging leaflet it says 3 to 4 weeks before dose increase, so I’m confused. What are the benefits of waiting for 12 weeks. Obviously, I am keen to get onto the correct dose for me as soon as possible, but will follow this advice if better for me in the long run.

[SeasideSusie Remembering in reply to Pastelart]

It can take 6-8 weeks for full effects of any dose change and for levels to settle. Patient experience tells us that 6-8 weeks is about the right time. I have found that nearer 8 weeks is about right for me.

I think the patient information leaflet also says take Levo half an hour before food, yet there is more information out there that says to avoid anything affecting the absorption of Levo then take it one hour before or two hour safer food.

[Pastelart in reply to SeasideSusie]

Sorry, SlowDragon said 8 weeks. 🤪

[SlowDragon Administrator in reply to Pastelart]

As medics only look at TSH….we need TSH as high as possible

Leaving it 6-8 weeks minimum should give highest TSH

[Pastelart in reply to SlowDragon]

Aah! Makes sense, thank you both 😊

[shaws]

I'm glad your doctor increased your dose and it doesn't surprise me one iota that few GPs know very much about clinical symptoms of a dysfunctional thyroid gland, nor how to diagnose or how to relieve symptoms.

They cannot even diagnose a patient sitting in front of them who has a high TSH (100 ) and who tells the patient there's nothing wrong with them.

[Pastelart in reply to shaws]

Scary, isn’t it 😱 I’ve already noticed a difference in my fingernails , the new growth is free of nail splitting ridges. Also, unexplained pain in my hips and back and arbitrary stabbing pains are becoming less frequent 🥳 And I can hereby confirm, that antidepressants do not cure hypothyroidism 🤪

[shaws in reply to Pastelart]

Some of our members get diagnosed with anything but hypothyrodism and given prescriptions for anything but hypothyroidism.

I'm well thanks to Thyroiduk.org.uk before this forum began.

[shaws]

We get diagnosed with anything but a problem with our thyroid hormones. I should have said that I had to diagnose myself with hypothyroidism as no doctor seemed to know no symptoms whatsoever. (you can read my journey - if you wish - by clicking on my name).

I had never heard of problems with the thyroid gland neither did I know anyone who had.

[Pastelart in reply to shaws]

How awful for you, shaws. I’ve been aware of thyroid problems for some time, as I suspected that I had it. Every time I mentioned it to any of the doctors, they shut me down. It was only after I’d kept a diary of my extremely low temperature for at least a month, that my doctor agreed that it could be thyroid. I then asked her to check my Achilles tendon response and it was very slow on one foot and virtually no movement on the other, I did a monitor my health test and voila!

[shaws in reply to Pastelart]

It's ridiculous as we expect all doctors to know the very basic and of course about common autoimmune conditions.

I'm glad you were able to diagnose yourself.

I had never heard of anything to do with a dysfunctional thyroid gland but have had to learn. Neither did anyone I paid - none could diagnose by clinical symptoms alone as our older doctors did.

[Pastelart in reply to shaws]

😡😳