What to do next??: any advise would be greatly... - Thyroid UK

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What to do next??

Wwerty profile image
10 Replies

any advise would be greatly appreciated, gp stopped levo 5 weeks ago because all of a sudden they think I don’t have a thyroid problem, it was stopped because it was causing me palpitations and bad anxiety, since they stopped it I wake every morning with anxiety, shaking, weak legs, light headed, not panic attacks though, still having palpitations, my joints ach, Nausea, I suffered 2 weeks depression where I just stayed in bed crying, that has since lifted and my mood is a lot brighter, went back to the dr and tried to explain that a lot of my symptoms have come back since they stopped the meds to keep getting told I haven’t got a thyroid problem, my tsh 3 weeks ago was 2.7 and yesterday it is 3.1, they just keep giving me antidepressants., that don’t want to take.Has anyone else suffered these symptoms when levo was stopped and does it get better because I’m at my wits end or can anyone advise what I should do, all my vitamins are well in range and my t4 is 15 which they said is normal.

I’m just fed up of these horrible symptoms as it’s ruining my life

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Wwerty profile image
Wwerty
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10 Replies
Clarrisa profile image
Clarrisa

My Endocrinologist suggested stopping my Synthroid which I had been on for years. This made me question her real understanding of the disease so I went to get a second opinion with another Endocrinologist. Needless to say I am still on Synthroid.

fibrolinda profile image
fibrolinda

Change your GP, urgently. Reading your last posts when you started levo 25mg your symptoms eased then came back, same when increased to 50? Increased to 75 and put on different brand, symptoms worse... Seriously you should make sure you only accept the brand you started on and when you got worse on teva should have simply been switched back urgently to original brand. Your poor body has been messed about badly and ALL the symptoms you describe are hypo, you have Hashis as antibody test previously showed. You were heading in the right direction till idiots who do not know what they're talking about decide to make unsubstantiated sweeping statements and as they do not know if understand the thyroid decide you do not have a thyroid problem. New gp, take someone with you for support and write everything down that has happened, is happening and hand it to the new GP first saying please read this.

Wwerty profile image
Wwerty in reply to fibrolinda

I am currently in the middle of writing everything down, I’m so frustrated with it all, how can I have a thyroid problem then not and be left feeling worse than I did before being diagnosed

fibrolinda profile image
fibrolinda in reply to Wwerty

Because you're being treated by people who don't know what they're doing😡 treating the thyroid, getting hormone levels right FOR YOU, is often a slow walk, it takes time. It took time to become as ill as you are and will take time to become correctly medicated with small slow increases. But first you need to get a doctor who listens! When you can pop your vitamin levels up, in a new post, with ranges. Optimum is different to 'in range' and can make a big difference to how you feel.

((Hugs)) Linda

I have no thyroid gland so MUST take medication for the rest of my life.

I discovered, whilst unsuccessfully trying to find the correct dose of levothyroxine, that I felt a lot better when I stopped taking any at all. BUT, BUT, BUT, that sensation did not last long and I was forced to start taking it again. Suggest the same is happening to you and you will be forced to start again. I'm now on NDT and refuse point blank to ever take levothyroxine again.

In the meanwhile, get another doctor who has at least a small amount of knowledge of what he's doing.

I think you need to find a new GP. The thyroid doesn't just suddenly get better, in fact it usually gets worse. Often palpitations and anxiety are caused by low T3 - in other words, too little medication. What were your test results before your doctor decided to stop your levo? You need full thyroid tests: TSH, Free T4, Free T3, TPO and TG antibodies.

Wwerty profile image
Wwerty in reply to Angel_of_the_North

They didn’t test before stopping, they just told me to stop because of the attitude was getting,I had them checked 2 weeks after and tsh was2.7 and t4 was 15 and then 3 weeks later and tsh was 3.1, they refuse to test t3, my antibodies was 198 at the beginning of this in July and they just told me it was under active, I’m not sure which antibodies was tested

Angel_of_the_North profile image
Angel_of_the_North in reply to Wwerty

Then you definitely need a new GP as stopping meds without a blood test to check levels is just negligent. Can't tell where in range your fT4 was without the range, but your TSH was already higher than most healthy people after 2 weeks when you'd still have had a little levo in your system

Lora7again profile image
Lora7again

I have just read this and you do know thyroid disease can make you depressed don't you? At one point my TSH was 9 and I was suicidal and I was offered counseling and antidepressants which I did not need just treatment for my thyroid disease.

Wwerty profile image
Wwerty in reply to Lora7again

Yeah I’ve told the drs till I’m blue in the face but they don’t listen, it’s affecting my life and family, and when I told them that they just said let’s try b12......arrrrrrgh, it’s so frustrating, I’m not going to refuse b12 because my levels have dropped apparently but I know it’s the levo that I need, too much of a coincidence that a week after stopping levo all my symptoms come back worse

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