Update after seeing Endo : Updating: Been to see... - Thyroid UK

Thyroid UK

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Update after seeing Endo

Anic
Anic

Updating:

Been to see Endo last Friday:

She Did not agree to increase meds in fact very definitely told me to:

Reduce Levothyroxine by 50mcg a week.

So i will be on 500mcg a week.

Told me to take Vit D and repeat test in 3 months then she will arrange D injection. Also boost B12.

20 Replies
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She should not be decreasing it but increasing it and perhaps adding some T3. I would change your Endocrinologist because they will keep you ill.

Have a look at Elaine Moore site she had RAI and started a support site.

elaine-moore.com/

Anic
Anic in reply to Lora7again

Thanks Lora. I will check Out your suggestion.

Lora7again
Lora7again in reply to Anic

A lot people take NDT who don't have a thyroid and it suits them. Is it available in your country on prescription?

Anic
Anic in reply to Lora7again

I just googled and it is available in Australia. Very hard to manage change by myself. My GP leaves it to Endo and Endo definite about lowering dose.

Lora7again
Lora7again in reply to Anic

I actually have taken Thyroid S which is a NDT in the past to help me go into remission because Elaine Moore advised me to take Levothyroxine. It was very easy to take because you go by how you feel and there are some people on this site who have had thyroid cancer who also take it. It contains both T4 and T3 and is what people used to take before the artificial Levothyroxine and they did well on it. It does not suit everyone but it did suit me and I got up to 1 1/2 grains or tablets a day.

Anic
Anic in reply to Lora7again

Thanks again. I will look into that too. The NDT -

Do you have to take it on its own?

Lora7again
Lora7again in reply to Anic

Yes because it contains both T4 and T3. You will still have to make sure your vitamins are optimal. It was hard to get hold of because of the corona but a lot the backorders are now coming through to members on this site. Just to add I purchased my own from Thailand because my doctor refused to help me because my TSH was in range. My TSH means nothing and at the moment it is 0.38 and I am taking nothing. You can read my story on my profile page if you are interested.

Anic
Anic in reply to Lora7again

I will take a look at your profile Lora7again (sorry i misspelt it earlier🥺). Thnx

Lora7again
Lora7again in reply to Anic

I actually read this site for about a year because I did not have the energy to even type a post. I think there are a lot of people who are too ill to join in because they are not getting the right treatment which I find appalling.

Anic
Anic in reply to Lora7again

Yes i think we hit a wall and try and find some help ...more than what our MDs are giving presently.

I cant see your profile🤦‍♀️

Lora7again
Lora7again in reply to Anic

Click on my name which should bring you to my page and then click on my profile.

Anic
Anic in reply to Lora7again

I forgot to mention that Endo said my body is converting F4 at a slower rate ...so it hangs around a bit longer. Also said Vitamins need to be optimum levels.

Lora7again
Lora7again in reply to Anic

Well if she thinks that why isn't she adding some T3 to your T4? I would ask her about that if I was you. Sorry I didn't reply straight away it is because I am not getting any notifications for some reason. I am out for the day now but I will check back later on your thread. I am going to follow you so I can see how things progress for you.

Anic
Anic in reply to Lora7again

Thanks again 😊

Wow, thyroid cancer and they want to reduce your meds I just looked at your blood test and it does not indicate your over medicated (assuming I saw that itty bitty print right).

Anic
Anic in reply to Batty1

Hi Batty1

Im sure you read right but here they Are:

TSH 0.25. mlU/L Ref Range (0.40 to 4.00)

T4 17.6 pmol/L Ref Range (9.0 to 19.0)

T3 3.8 pmol/L Ref Range (2.6 to 6.0)

I couldnt convince the Endo to up meds or even leave where they are. Anyways i will monitor and persevere.

Batty1
Batty1 in reply to Anic

I also had thyroid cancer and go through the same nonsense but Im also on (10mcg) of T3 along with daily 100mcg Levo and managed to get my endo to add in and extra 50mcg per week.... My endo said Im afraid this will be too much levo I will know if this is true by Friday Im scheduled to do blood test tomorrow....

Really need to have a low TSH to keep cancer at bay but Im thinking this is phooey because I currently have thyroid cancer spread to my lymph nodes and my TSH has always been very low.

Anic
Anic in reply to Batty1

Oh thats interesting about low TSH not doing the trick. Did you have RAI after surgery?

Good luck with your blood test tomorrow.

Batty1
Batty1 in reply to Anic

They no longer do RAI if your considered low risk and at the time of my diagnosis I was considered low risk... so much for that theory and I recently joined a group of pap cancer for people with pap and MANY have low or nonexistent thyroglobulin levels and all had recurrence of thyroid cancer... so much for blood work being right all the time...

Anic
Anic in reply to Batty1

Mine was pap too but i had RAI no lymph nodes or para thyroid affected. Age perhaps was why the RAI. Im innAustralia.

Take care. Hope all goes well for you🙏

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