Hi ive just joined to this group and hoping i can get some advice! I've not been well on and off since May last year, feeling really tired, needing to have naps in an afternoon, feeling very sluggish and struggling to do my job and just daily life! I became very unwell in August, then again in September, the first time in August, i was tested for diabetes and Addisons disease because of my symptoms, both came back ok! In September they eventually decided to test me for my throid and it came back borderline! I was so relieved because i just thought people were thinking i was putting it on!! I was referred to an endo and when i saw him he said that even though i had the symptoms and was suffering with terrible tiredness, he was reluctant to put me on thyroxine, because once your on it, your on it for life!! I came away very upset and frustrated! I felt as though i just had to plod on with it! In December i saw the endo again and he said my antibodies were in the 1,000's and he said my body was fighting its own immune system and i have what's called hashimotos, this time he said my bloods came back normal 😏! Anyway i asked him to test me for vitamin d and it came back i was deficient hallelujah i felt! The endo said well perhaps it might benefit you to go on vitamin d! So ive been on 60,000 units a week and have been feeling better!
Anyway 4 weeks ago i started to feel really tired again, sluggish and as though I'm always walking in sinking sand, so took myself to the drs and said i wasn't well ( as you know your own body and when your feeling crap) told her to do some bloods and when i went back for my results my tsh is 5.5 and she said oh its high and you would definitely benefit from going on a trial of thyroxine, so she's referred me to a different endo and told me i have to convince him to be put on thyroxine!! Why do i have to convince him when my bloods are telling him im really not well 😤😤! Druggies get given methodone with no questions asked or convincing! Its so wrong, us people that are suffering are getting pushed aside and made to feel a fraud and its wrong! I'm 42 and normally bubbly and full of life, this is affecting my daily life!
Fingers crossed for me i am there today. P.s has anyone heard of getting this hashimotos after having breast implants!? I had mine done 3 years ago and i read about it a while ago? Or is it from when there was the controversy about the wrong implants years ago? Thanks everyone for listening.
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Lottie08
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I am sorry to hear you have been ill and having difficulty getting a diagnosis. I was told the same as you last year about "you will be on it for life". If you are positive for hashimotos you are hypothyroid and with a result of 5.5 it is high but you would need to post your reference ranges for the members to help you. More people will come along soon and give you good advice. Xx
"he was reluctant to put me on thyroxine, because once your on it, your on it for life!!"
Well, yes, duh! But, you're on it for life because your thyroid gland can no longer make enough thyroid hormone for you to live and you can't live without thyroid hormone. Not because it's some addictive drug that you can't get off. Taking it doesn't mean that your thyroid suddenly stops working for life. If you come off the levo for any reason, the thyroid will gather up its skirts and carry on where it left off. And, if you took levo without needing it, you'd soon know, and come off it for yourself. Honestly, they do say some stupid things! lol
With a TSH of 5.5, you are hypo. Plus antibodies means that you should be on thyroid hormone replacement, to support your gland during antibody attacks. What's more, your TSH needs to be suppressed - but I doubt your dinosaur of an endo will know anything about that. Which is why, sometimes, it's better not to see an endo at all! Once you're seeing on, your GP will always want to refer to him. And, as they know so little about thyroid, you're often better off with a GP. And, your GP sounds as if she's got a brain. However, it should be her recommendation that gets you your levo, surely. It shouldn't be down to you to have to persuade him!
Hopefully, Clutter will be along soon to tell you about Dr Toft's little booklet that you can show to your endo to encourage him to prescribe. I'm afraid I don't have the details.
I can only agree with everything GreyGoose has said! Once antibodies start attacking your thyroid gland, there is no going back (although some claim autoimmune attacks can be stopped, at least temporarily, but I have never found that to be true). I have read that people without thyroid disease have a TSH around 1, and a TSH around 2 is already a sign your thyroid gland is beginning to struggle (even though most labs seem to use 4 or 4.5 as the upper normal limit). You should be put on thyroid hormone replacement without delay, to prevent things from deteriorating further. Why wait for you to get even worse before treating you?!
On a more personal level, I don't have much faith in endos. Most of them seem to specialise in the treatment of diabetes, and few seem to know anything about the treatment of hypothyroidism. With autoimmune disease, some patients (I'm one of them) need a below range TSH to keep antibody levels down. Most conventional endos and GPs will insist your TSH needs to remain in range at all times, though.
If the endo agrees to prescribe thyroxine, don't settle for a TSH "anywhere in range". Go by free Ts, especially FT3 as that is the truly active thyroid hormone, and by how you feel, as the TSH is unlikely to coincide with how you feel and the disappearance of hypo symptoms. I don't know if this is more likely to happen to patents with autoimmune hypothyroidism, but I know I am far from the only one with Hashimoto's disease to feel that my TSH reading is completely unrelated to my symptoms and feeling of well-being.
Thanks for all your responses, saw a lovely consultant today, he said with my tsh 5.5 and my antibodies in the thousands, its the hashimotos thats attacked my thyroid! There's no cure for the hashimotos, but he says im 'sub clinical under active thyroid ' whatever that means. He said he will trial me for 6 weeks on 50mg of thyroxine, check my bloods and see how i am?! If my levels go to a 2 then I'll probably stay on the 50mg!? He says at the most i could go to 75mg but would probably never need to go on 100mg!? Whats your thoughts is this right?
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