Decrease Levo with the aim of coming off it completely!

[Suzy61Taylor]

How careful does one have to be to come off 75mcgs of Levothyroxine? Can you go cold turkey or should it be a gradual thing?

[galathea]

The levo takes weeks to leave your system completely so there should be no problem with just stopping it..... Why do you want to?

[Hidden]

Why do you want to come off your levothyroxine? Could you expand a little.x

[Clutter]

Cold turkey is fine as it will take 4 weeks to leave your system, but as the others have asked, why?

[Suzy61Taylor]

Hi everyone that has responded to my question. I have struggled with Levothyroxine. My THS levels have come down but my symptoms are far worse than when I was diagnosed in December. I'm soon to have a Short Synacthen test and I can't help thinking that my problems are more likely to be Adrenal in origin. I could be wrong but I should be feeling the benefits of Levo but instead I dread taking them. My endo has now agreed to try T3 (very small dose of 5mcgs) with 50mcgs of Levo, but I am nervous about taking anything for a while. It appears on my blood test that I do have an autoimmune disease (Hashimoto's)??? but my doctor has not mentioned trying to find out what what anti bodies I am producing. When I first went along to my GP in December because I was struggling to sleep at night so hence a blood test - little did I know at that point that there was far worse to come. It can't be a coincidence surely? Does anyone think that T3 might be better for me?

[Rhiannon5]

Hello, if you have antibodies and the dr has mentioned Hashimotos then they will be Thyroid Perixidase Antibodies. If this is the case then you do have an autoimmune condition.

Like you, I'm coming off T4 after being on it for 10 weeks, again like you I have felt just as bad. However, my main reason for coming off it is that it is causing my mucous membranes to dry up, I wear contact lenses and there has been problems with my eyes ever since starting it. My optician has confirmed it is thyroxine.

My preferred course of treatment is going to be natural dessicated thyroid and I'm in the process of finding out more.

If I can help you in any way be sharing my journey with you then please let me know xx

[HarryE in reply to Rhiannon5]

You can have thyroglobulin antibodies too, I only have those, but you can have both too. I'm on NDT and it's working well.

[Rhiannon5 in reply to HarryE]

Yes of course HarryE I forgot about those antibodies It's good to hear that NDT is working well for you, how long have you been on it?

[HarryE in reply to Rhiannon5]

8 weeks, and now back at work after 4 months off sick!

[Suzy61Taylor in reply to HarryE]

Hello HarryE. Would you help me out? If my blood test shows that I have some sort of autoimmune disease, does the GP not routinely screen to see if it is Hashimoto's or even some other immune problem?

We have a big family history of autoimmune diseases. Would it really effect any outcome (medication) if it were Hashimoto's? Are thyroglobulin antibodies the main culprit? Thanks in advance for any info you can give me. May I ask how difficult it was to get a good reliable source of NDT. I have now stopped my Levothyroxine and I'm 3 days in taking T3. Yesterday was brilliant. I cut the grass, took my dog out, did the shopping - all without having to take a rest/sleep in the afternoon Can T3 be this effective or is it because I've now come off Levo?

[HarryE in reply to Suzy61Taylor]

I'm no expert, but you're welcome to my thoughts!

In the UK hypo stemming from hashi's is just treated as hypo. No focus seems to be put on the autoimmune reaction at all. But if you hae one autoimmune disease your risk of others is higher so I think it's worth knowing if you have antibodies, and trying to calm your immune system too. In hashi's you will have either or both of TPO or Thyroglobulin antibodies, which can be detected by a blood test. Different diseases generate different antibodies so its a bit like looking for a needle in a haystack, but I believe there are some that can be a marker for generalise inflammation.

T3 only can be really effective, I certainly felt better within a few days of NDT, which contains t3, but some people do better on just t3. It is easy to get ndt and t3 really, just a bit of a pain to have to cough up for it yourself!

Hope you have plenty more good days xx

[sazzyb in reply to Suzy61Taylor]

Hi Suzy, I hope you continue to have good days! I think it takes about 6 - 8 weeks for Levo to have left your body so I'm guessing it's the T3 you needed.

[Suzy61Taylor in reply to Rhiannon5]

Hi Rhiannon5. I have responded to you in a PM, so please don't think I've ignored you!