coming off eltroxin?????: Hello, this is my first... - Thyroid UK

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coming off eltroxin?????

osannie profile image
11 Replies

Hello, this is my first time posting, i am based in ireland, it was my gp that recommended this site to me.

i got diagnosed as having an underactive thyroid in july 2016, 6 months after having my baby, at the time of testing i was 3-4 days into a course of steroid tablets for an overall body allergic reaction.

i believe that my whole system was in over drive and not functioning properly, i still believe this is a temporary diagnosis.

if i continue to take eltroxin and my blood results show that i am in normal range, how would i know if i dont need eltroxin?

i got my blood results today and they are normal, i hadnt taken eltroxin in over 2 weeks. i want to suggest to my doctor that i stay off it for a month and get my bloods retested

has anyone done anything similar? i feel fine, also waiting to get tested for coeliac disease which i am booked in for this tue?

any insight would be great.

Thank you

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osannie
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helvella profile image
helvellaAdministrator

Well - your GP is a rarity! A welcome one.

Do you have your actual test results - including reference ranges (numbers usually in brackets) - from today and any earlier ones?

They would help to give some idea of where you were, and where you now are.

Also, how much Eltroxin have you been taking?

osannie profile image
osannie in reply tohelvella

Thanks helvella, I have just posted my results on the post.

RedApple profile image
RedAppleAdministrator

osannie,

i got my blood results today and they are normal

Some people do recover their full thyroid function and are able to come off medication. Only time will tell as to whether you are one of the lucky ones. Please obtain your actual test results, with their accompanying reference ranges and post them here for people to comment on.

osannie profile image
osannie in reply toRedApple

Thanks redapple I have posted my results.

osannie profile image
osannie

Thanks very much for both of your replies. I'll try and get my results today and will post them up when I have them.

I really appreciate your responses, thank you 😀

Shar0n profile image
Shar0n

I was on eltroxin for several years and did get off it. My thyroid started to become overactive which meant that the GP decided to reduce the dose. When that happened, it occurred to me that the diagnosis might not be set in stone . I reduced my intake of carbs ( bread, cakes, biscuits, potatoes) which made me lose weight and again my thyroid started to become overactive on medication ( confirmed with blood tests) so again my dose was reduced by the GP. Eventually I was weaned off the eltroxin but I did manage my weight very carefully to stay at the lower end of normal for my height and I do still get monitored by blood tests . Have not needed medication in ten years. I don't know whether this has any relevance for anyone else's case . I wasn't much overweight to start with but getting and keeping off that stone was important in improving my results. I am also in Ireland and my mother, grandmother and one aunt had thyroid problems - all from Tipperary which is said to have a higher incidence of thyroid problems.

osannie profile image
osannie in reply toShar0n

Thanks very much for your reply. I feel similar to you, I do have that extra bit of weight to loose, I am waiting to get tested for coeliac on Tuesday and my suspicion is I'll be coming off all gluten.

That's great that your off medication for 10 years,

How did you wean off medication? Was it down to your blood test results?

Shar0n profile image
Shar0n in reply toosannie

Hi Osannie, yes the blood test results were improving each time. My TSH has gone up occasionally and jumped to 12 on one occasion after I had a PET CT scan for another condition but my GP agreed to hold off on treatment as my T4 was okay. The main factor in staying off treatment for me is that I feel physically well. Also I no longer have a problem keeping weight off as I did when I was underactive. If you do have to go gluten free, while difficult at first, that may be a big help. Also if your water is fluoridated as all the town and city water in Ireland is, you might want to stop drinking that as it affects the thyroid - especially in susceptible people.

osannie profile image
osannie in reply toShar0n

Thanks Shar0n,

Thanks very much for your reply. I have been contemplating on not using the tap water as it is fluoridated, do you just use bottled water? A townland near us here has a free flowing well that lots of people are using, its on a farmers land but he is giving access to it and has put in a stone wall and pipes etc for it, might try that water.

i have been off gluten since tuesday as i had to stay on it until i had the test for coeliac disease done, still waiting on results but decided to go off it anyways, and already i can see a difference in my energy.

Shar0n profile image
Shar0n in reply toosannie

Hi Osannie, I don't drink the tap water here because of the added fluoride but also the amount of chlorine they have to use to keep the bacteria levels down makes it taste pretty bad. I also gave up using fluoridated toothpaste and buy the non fluoridated ones from Holland and Barrett etc. The well water sounds a good idea if you are sure there's no contamination from the farmland. My husband drinks well water that he fills from a local well with no ill effects ! I buy 10 litres for filling my water bottle when I'm shopping. Good luck with the results from your tests. I went gluten free a few years ago and had no issues with it. All my digestive problems cleared up too.

osannie profile image
osannie

I'm back with my results.

13/8/16 my free t4 was 7 and tsh was 34.13 I was put on 100mg of eltroxin, I started taking the eltroxin 2 weeks later as I was taking 8 steroids a day for an allergic reaction, that was my own decision to hold off on taking the eltroxin.

Bloods were retested 23/9

T4 was 12 and tsh was 4.73

Recent bloods were 8/2/17

T4 was 13.6 and tsh was 4.84

Normal ranget stated as t4 9 - 19.1 and tsh as 0.35 - 4.94

Looking back I now realise how high my tsh was, I wasn't aware it was so high.

I have been very sporadic taking the eltroxin which makes me think that I could stay off it and get it tested regularly

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