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Misdiagnosis of underactive thyroid

Posted , 12 users are following.

Tutu123
Tutu123

I'm in a very strange situation where I have been on thryoid medication for 8 years and was diagnosed with underactive thyroid when I was 19.

It has now come to light that the only reason I was diagnosed was that I was suffering with exhaustion and my Tsh was slightly abnormal. My thryoid antibodies were within normal range then and they still are now.

The doctors have been seeing how tired I am and kept increasing my meds to the point where my hair was falling out and I was suffering palpitations. I then got desperate and saw a private endocrinologist who said he was almost certain I have been over-medicated and may have never needed medication in the first place.

Has anyone else been in this situation? How is this possible and how does this happen when underactive thryoid is such a common disorder?

All the other potential vitamin deficiencies have been tested including adrenals etc and they have come back normal and I'm waiting on a thryoid ultrasound to confirm that it is healthy.

They said it may be too late to completely take me off levothyroxine (I was on 150mg and I'm now down to 75mg and dont feel any worse but equally dont feel any better). They say my thryoid may not be able to recover after eight years at such a high level of medication but they will try and reduce it as low as possible.

Is it possible for my thryoid to start making its own hormones again if I never had the disease in the first place?

I feel devastated at the amount of times I went to the doctors complaining that I've felt awful for years and it's taken me to go to a private endo to get some answers. Im worried I'll be on this toxic medication for life sad

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  • mags1909
    mags1909 Tutu123

    Posted

    Hello, I had radioactive iodine treatment almost 3 years ago, then around a year ago I was informed by the consultant at my local hospital that my thyroid function had dropped sufficiently for me to start taking medication. Immediatly I was ill and stayed like that for the first two weeks before the worst of the symptoms wore off. The tiredness and the condition of my hair, nails etc never improved, but when I said to the consultant that i felt this was due to the medication, he disagreed and even wrote in a letter to my GP that he felt my other symptoms were due to stress, which I did not agree with and strongly denied. On a subsequent visit back to the hospital I wasthen told I required to increase my thyroid medication, the increase in medication never worked and in fact caused me all manner of problems. In the end I decided I had had enough and went to my own GP about it all. I was lucky in the fact my appt that day was with one of the better doctors in my pracitce who was prepared to listen to me. He agreed that i should stay off the medication for some time as he wanted to see what my blood readings would be once my body was clear of all the Thyroxine medication. Bloods were taken 8 weeks after I stopped and I went back to see GP last week for results and they were normal. Turns out I had been over medicated from day one and it was the medication that was making me underactive. I knew myself something was not right and now I am so glad that I listened to my own body rather than just accepting what the consultant said. I am lucky that I found this out at a very early stage so I don't think there should be any long term issues like yourself. Consultant's do get things wrong and in your case very wrong for some considerable time. If i were you I just would not accept what your hospital is saying to you, I would demand another opinion, they created the problem an may well be playing down any long term health effects. 
    • Tutu123
      Tutu123 mags1909

      Posted

      Hi mags,

      That's really interesting to hear. It was actually a GP who originally "diagnosed" me and put me on the meds and I'm not with that surgery anymore.

      Luckily I have a really patient doctor and endo who are working together to try and get me off the meds and make me feel better and have tested everything else even things like lymes disease that has similar symptoms.

      Due to the fact I was diagnosed by another practice and they didn't have any notes on my original shaky diagnosis and underlying cause, all the doctors at other practices just assumed that I definitely had it (and why wouldn't they, you would think that the other doctor must have been sure enough to put me on it in the first place).

      My doctor was so apologetic and said that he hadn't even considered that the original diagnosis may not have been correct. It wasn't until the private endo took a look at my small frame and hair loss that he thought I had been massively pumped full of levothyroxine for years.

      The same thing happened to me, they kept telling me I was stressed /depressed and tried to give me antidepressants at every opportunity. It's so frustrating when you as the patient know there is something fundamentally wrong with the way you have been treated. X

  • mags1909
    mags1909 Tutu123

    Posted

    Hopefully you start seeing an improvement soon, can't begin to think what it must have been like for you all these years, I only had the problem for about a year and that was bad enough ! Good luck and let us know how you get on xx
  • tony_92886
    tony_92886 Tutu123

    Posted

    Throxine is not toxic however I am on 150 mg off throxine one day 100mg the next so 125 Daily anyway I am 51 been on throxine for over 25 years ,I would say if your Dr has treated you so Bad and misdiagnosed for so long ,I would sue I have looket into throxine and my understanding is it replaces the natural hormon but if your were treated unesurey your throxide should have shown over active as your practice for all your results and it should give the fuller picture good luck
    • Tutu123
      Tutu123 tony_92886

      Posted

      Hi Tony

      Yes I am aware thyroxine is not toxic (it was more of a derogatory term as I it has never done anything for me and only seemed to make me feel worse). Yes lots of people say I should sue but I may campaign to parliament as well for better education, diagnosis and treatment for the condition as it's really not right. Hopefully my thryoid will recover eventually

    • barbara98940
      barbara98940 Tutu123

      Posted

      It's worth registering with tpauk who are already campaigning.
  • katie88166
    katie88166 Tutu123

    Posted

    I hope to hear back from you! this is so crazy because I am in the exact same position...My labs were normal in '09 and we just figured this out...  within the last 12 weeks slowly been taken off meds..Starting to feel so crappy...I cry because I am so frustrated..And I am anxious and sick! My family is greatly effected by this..I see you posted this in January, how are you doing NOW?

    • Tutu123
      Tutu123 katie88166

      Posted

      Hi Katie

      So sorry to hear you have been through this too sad I've felt horrific since November. I was on 150 and went as low as 37.5 before I couldn't function properly at all. Im now stable on 50mg. They have shrunk my thyroid through overuse of the medication so I'm on this rubbish for life now. They won't accept any responsibility for this either and i must admit I do feel quite bitter about that. Unfortunately after coming off a large proportion of the meds I still feel the same as I did at the higher dose, exhausted, dizzy, faint and struggling with daily tasks. They are putting this down to chronic fatigue syndrome rather than side effects of levothyroxine but I'm convinced it's the meds making things worse. Im devastated as they said it would be very likely I would start seeing an improvement in my symptoms but so far all that's happened is loads of my hair has fallen out and I have bald patches all over my scalp and ive spent so long off work and feeling low when they have been reducing the dose. They have also caused ventricular premature beats in my heart which I am waiting for investigations into. Sorry for the long rambling message. After almost a year of coming off these horrible meds I thought there would be some sort of reward at the end of it but there just hasn't been for me sad

      How has it been for you? What dose did they put you on? Are you likely to be able to come off it entirely? Take care x

    • barbara98940
      barbara98940 Tutu123

      Posted

      I'm really sorry to hear you didn't manage to get off thyroxine completely. It is though good news that you've managed to reduce it so much. What's the plan now? Stay on the reduced dose of thyroxine? Try eating a diet without processed food? Try to cut put

    • barbara98940
      barbara98940

      Posted

      Sorry, last post got sent before it was finished. So continue...

      Try cutting out gluten and soya and see whether it helps? This doesn't have to be the end of the efforts to feel better - unless you want it to be. I don't know whether any of these things will help. The only way to find out is to try, and as none of them will cause harm, what have you got to lose? I can't believe a year has gone by.

      All the best.

    • katie88166
      katie88166 Tutu123

      Posted

      I've been completely off of it for 6 weeks now. In December of 2012 I went off of it and wasn't monitored..2013 was a gradual decline I didn't see coming and 2014 I crashed. Couldn't leave the house for 4 months. I was sick and anxiety was terrible. So it's taken me until now to get to some normalcy. Was put back on meds in 2015...Now that my dr saw labs were normal in 09 she wanted to try getting off it again. I'm feeling like I'm declining again. Don't like it and not happy about it...Its an awful thing. I'm an online coach and with all the research and changes I've made that definitely helps. Diet and exercise it key! Supplements are great too..Every try those things?

    • katie88166
      katie88166 barbara98940

      Posted

      Thanks!! I've been off them for past 6 weeks but feeling crsppy this past week. Not fun...Anxiety and nausea..I am an online coach and diet and exercise are KEY to help. Also supplements. Trial and error. Thank you for the advice and well wishes. 😊

    • Tutu123
      Tutu123 katie88166

      Posted

      Hi Katie

      Just a thought but wondered whether your thyroid is potentially shrunken like mine due to the meds - I couldn't come of if totally and like you spent weeks not being able to leave the house coz I felt so awful. You should request a thyroid ultrasound as they can see what size your thyroid is now. You may still need some meds to help you

      I'm trying to be stricter with diet and don't eat much gluten anyway. I've tried various supplements including vitamin b12. I find these things don't make a great deal of difference to me but I'm trying anyway

    • katie88166
      katie88166 Tutu123

      Posted

      Oh there's endless possibilities since it was a mistake to begin with. It could have stopped all the thyroid production altogether. But I find if I stick to a strict lifestyle plan- GF, soy free and usually sugar free with exercise (minus any cardio) I feel pretty good. I'll never be normal again like I use to be (I don't think) But also supplements I take. All that together does balance out for the most part. There are certain times I notice changes but I guess that's normal..🙄hahaha Nice to find others in the same position as myself because you end up feeling crazy like I'm making it all up in my head. And I know I'm not! How were you feeling when you were totally off of it? Me: nausea, anxiety and fatigue. Don't want to go anywhere it's to overwhelming physically. Mentally I'm screaming!

    • katie88166
      katie88166 Tutu123

      Posted

      Also, have you had your vitamin levels checked? D, K, B12,B6 ect. Or hormones?
    • Tutu123
      Tutu123 katie88166

      Posted

      When I was totally off it I felt like I couldn't stay awake I was so depressed I didn't know who I was anymore. I've never felt so awful in my whole life - I'm sure you can relate. Yes I've been tested for the above. B vitamins were normal but not optimal and I am also on vitamin D supplements. I've had everything tested that they will test for and most of it comes back as normal. It's so upsetting as I'm sure they think i am making it up!'

    • katie88166
      katie88166 Tutu123

      Posted

      Oh yeah! Hear ya..It is wet frustrating..We should keep in touch. I'll be curious to follow your story!! I'll see about labs next week. ugh

    • barbara98940
      barbara98940 Tutu123

      Posted

      Have you had your adrenal glands tested? 24 hour test is said to be best.
    • Tutu123
      Tutu123 barbara98940

      Posted

      Hi Barbara I've had a variety of cortisol tests as my random cortisol was quite high but then the tests following came back normal. I never understand why I have so many symptoms but nothing shows up on tests.

    • Tutu123
      Tutu123 katie88166

      Posted

      Yes feel free to keep in touch. It's hard to know what to do sometimes and not all family and friends understand

    • barbara98940
      barbara98940 Tutu123

      Posted

      I wondered about cortisol as your body has bene through a lot of stress over the last year. Have you seen the website tpauk? From there and the other thyroid site it seems that the standard blood tests they do in UK aren't very good at picking up a cortisol problem unless it's extreme.

    • Tutu123
      Tutu123 barbara98940

      Posted

      Hi Barbara I had a random cortisol tests initially, then a high and low dose dexamethasone suppression test. I think it was fairly extensive but I still have all the symptoms.
    • barbara98940
      barbara98940 Tutu123

      Posted

      Hi Caz, did I read somewhere that taking T3 helps with adrenal problems? If so, it may be an idea to speak to your doctor about substituting some of your T4 for T3.
    • amelia_02466
      amelia_02466 katie88166

      Posted

      Hi Katie! I'd love to hear from you, if this thread alerts you. I have been housebound four four months and I'm sick. I also have terrible anxiety. Was it going back on the medication that helped you? Or something else? Did your labs show you needed medication, or did you just go back on? I ask because I'm off my medication due to going hyperthyroid, but I'm absolutely not ok, yet me labs are normal. If I try going back on synthroid my symptoms disappear, but I get really hot with a lot of anxiety. My endocrinologist wants me to try again, but at a lower dose. Just curious about your experience!

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