hashimotos disease

Hi everyone i'm new to here posting wise in 2005/2006 i came here for help because my doc would not even consider i had a thyroid problem until i'd sent my blood results to a lady on here and with her help i got a diagnosis of Hashimotos disease.which i was so grateful for so i started on 25mcg levothyroxine and within 2 weeks started to feel like my former self had lots of ups and downs and medicine tweaking to the point that now i'm on 125mcg of levothyroxine which i felt great for to begin with and now i feel like i did to begin with, my goitre is always swelling i hurt all over my eyes are heavy in general nasty symptoms totally taking over my life, i have been diagnosed since with CFS/M.E and Fibromyalgia and TMJD and IBS i'm so not convinced i have CFS/M.E after reading this site as the symptoms i have are very close to the thyroid symptoms so i'm thinking i need to tackle my gp once again, but no matter what i do i cannot get to see a consultant because my tsh level is now hanging around 1.4/1.5 which did seem to be normal for me as i got quite well at that they won't change dosage or refer me so my next step is to try again with the g.p . I want to be able to leave my house, i want to be able to walk my dogs infact just smiling again would be nice as i feel so ill every day . If anyone has any tips i would be emensley grateful xxx

18 Replies

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  • i have hashimoto's and like you i felt fine when i first started on thyroxine but after 6 months felt awful.

    have you looked into gluten intolerance, it can fire up the auto immune disease.

    jonny

  • Hi jonny

    yes i was tested and things came back fine but if i'm honest mt stomach says otherwise, always got a burning pain under my ribs and feel sick .

    Sha

  • i think you can get a false negative, or you may not have full coeliac disease but be gluten intolerant.

    i have been gf for about 4 months, i had my immune panel done before hand and will repeat it in a few weeks. i'll let everyone know if my auto immune attack has calmed down.

  • Just thought I'd chip in about the M.E./CFS - yes doc thinks I have it too,but I don't agree. I went for blood tests after a partial thyroidectomy, also my arms- especially forearms & lower legs are painful and weak all day long (amongst other stuff) I am determined not to go back til next blood test

    Best Wishes

    Jane x

  • What are your free t3 and t4 levels like? If the doc isn't testing them then he's only half informed..... You can get them tested privately easily enough. are you tsaking selenium and vit C? Have you checked Dr lowes site? He says CFS etc is low T3.

    Nel

  • oh i don't know them levels nel i will find out if they are being checked i always just ask for my tsh level , no i haven't seen that site, selenium? that is really interesting about the t3 being low and Cfs, nel i just want to feel even a little bit normal again xx

  • well, I had some results once, the tsh was 0.001 so from this the doc would have said I was over medicated.

    But the free t4 was about 8 in a range which went from (9 - 20) so this would have shown that I was not on enough medication and that something could be wrong with the pituary as the tsh was too low if the t4 was low...

    But..... the free t3 was about 5 in a range of (4 - 7).

    This showed that the t3 I was taking was sitting nicely in range, the tsh was correspondingly supressed and the t4 was low because I wasn't taking much of it as I was on T3. (so in fact, I was fine)

    The doc really can't work anything out from TSH alone, even the guidance on the NHS site says that he needs free t4 as well as TSh, else it's too easy to arrive at the wrong conclusion.

    Selenium is vital for helping you to convert the inactive t4 into the useable t3. One tablet a day supplement

    Here is the Dr Lowe link drlowe.com/.

    Nel

  • How crazy! can you see a different GP as this one telling you that you have cfs and fibromyalgia is on another planet. To diagnose cfs there is no test, it is after negative results of thyroid and other problems and then after 6 months, well you are hypothyroid so you have not got cfs! Fibromyalgia takes some diagnosing too, if you ache like I did this is a classic hypo symptom.

    Just one thing that I have thought of, have you by any chance been given a different brand of levothyroxine since starting them?

  • hi I have been told I have fibromyalgia for 18 months by loads of doctors sent home time after time from A&E all telling me ime ok I have got worse and worse agony with edema white finger nails swelling mussels legs back and arms .arms now wasting away crepe paper skin .hot flushes terrible bloating. terrible back of neck pains I had a private thyroid scan in Harley st as I had a lump appear on my thyroid I was told my thyroid was fine now I have 3 lumps hat have got larger and larger I saw a doctor a couple of weeks ago showed him my lumps that go up and down with my thyroid you can plainly see on video that I showed him e went behind me felt my thyroid and told me he could not feel anything .he told me its just my thyroid I told him but it was one lump then two now three and are getting bigger I showed him all my other symptom's and till he told me its fibromyalgia its now 18 months of living hell and still no diagnoses I have red pals and finger tips very pale skin looking greyish I even had yellow on the palms and very dry palms ow can doctors mistake all this for fibromyalgia has any one els had all this trouble trying to tell doctors they are wrong 100% just thought I would let you no Susie the troble I have bye having firomylgia

  • Hi, don't know if you realise that this post and comments are from 5 years ago! Most of the people are no longer members now.

    Fibromyalgia is a symptom, I don't understand how doctors can tell you that it's a diagnosis.

    Have you had your thyroid antibodies tested?

  • Hi Suze

    i'm in agony everyday and exhausted when i first when on thyroxine i did feel more like my self but i've just been reading about adrenal and thyroid so i'm going to see a different doctor today to find out why my adrenal glands have not been checked, i think i'm the victim of can't be bothered and this time i've been told i won't get well because its m.e, my 100's never change but my 25's change all the time and i feel the difference even tho boots say its impossible, i think i'm gonna see the doctor i don't like much because he said all along i didn't have m.e!!!!!! you wouldn't believe the medication i take for m.e and i'm just a zombie :(' xxxxxxxxxxxxxxx

  • Is it possible to stop the other meds? they could be the problem?

  • hi suze defo not the other meds i was the same without them, i've been to the docs this morning and managed to see a different doc who has worked in the endocronology dept at derriford hospital and has said she needs to fast track me to there she agrees that i maybe need some adrenal support and she thinks just by looking at me that my cortisol levels are not right, she think i have cfs but only because my thyroid isn't right even with the 125mcg of levothyroxine she also thinks that if my adrenal gland isn't working right then my T4 won't convert to T3 and she seems to think they 'll see me and sort me, and because i went backed up with allsorts of info that i won't give in now til i know as i said to her if there IS a chance of this not being m.e then i need to know, she also admitted that sometimes you need an adrenal alongside the thyroxine. xxxxxxxxxxxxxxxxxxx

  • Hi Sha39. Have you been tested for Coeliac Disease? I ask as my sister was positive (after I got her tested) and after suffering same symptoms as you for years has recently been confirmed with Hashimotos as well. CD is an auto-immune problem (attacks the gluten protein found in wheat, rye, barley, oats, spelt etc and products with these grains in eg sauces and processed foods). Often Drs blame patient symptoms on IBS as awareness of Coeliac Disease is still fairly low - especially if you have non typical symptoms (which a lot of people do as it varies from person to person as does thyroid in many cases). Lots of research shows if you have thyroid/ coeliac you are more likely to get the other as well. So it's worth considering if you continue to have problems. FYI a lot of people with Coeliac Disease are also told they have CFS (then discover they have thyroid problems). So I thought it was worth mentioning. You can lick here for more info: coeliac.org.uk/

    <b>Updated on Jan 18 2011 1:48PM:</b> Opps Freudian slip - I have food on the brain (I think most Coeliacs do!). That's click not lick the link!!

  • hi Fiona :)

    you've got me wondering i feel soooooooo sick all of the time and i have this burning in my stomach all of the time that hurts and docs keep saying gastritis, i had a camera down last year they said there was a small hiatus hernia but thats all. i live on metoclopramide and omeprazole and gaviscon extra thick i've put so much weight on i get wierd sorts of things happen like a diabetic person would have and i need to eat fast before i feel like i'm going to collapse and feeling like this all the time makes me so tired in itself, i have such a massive bloated belly i've gone from a size 6-8 to nearly a 16 now in less than a year i've had stomach tests at the docs but i wonder if they just haven't picked it up, i just looked up the link you gave and its looking highly suscpicious

    thanks xxxxxxxxxxxxxxxxxxxxxxxxxxx

  • Hi Sha39

    Your story sounds a lot like mine. Diagnosed with Hashimoto's 2005-6, started on synthetic thyroxine (T4). Kept going back to the Doctor, same story: it worked for a while, then seemed to lose its effectiveness. Ended up after a year or so on 150ugm, which they all claimed was too high: "That high a dose will kill you." So I went back on 100, and within a month I could hardly get out of bed. Plus all the usual aches and pains (Fibromyalgia?), head fog and the rest.

    So I bullied my way back on to 150ugm, which helped for a few months, then back to where I was. Back to the Doctor every few weeks, with the same story: This is not working, what can I do. Always the same answer: yes, this is the right treatment for you, you're imagining all these complaints you're talking about, and the dose is too high anyway, you should reduce it.

    Well, being stubborn, I didn't take their advice. Instead I started searching for a Doctor who would at least listen. It took a while; they all seem completely indoctrinated with the same rubbish.I have been ordered out of surgeries, tested for depression, ignored or treated like the village idiot. Just as well I have a thick skin!

    But last October I found a Doctor who not only listened, but put me on a natural thyroid extract, both T4 and T3. From day one the difference has been incredible. Most of the symptoms either disappeared or became minor within the first two weeks, I can now last a full day at work without collapsing; my biggest problem now is I tend to overdo things as I try to catch up on the lost years.

    And, to me, the most important change is that I have lost that odd inner feeling that things are not right; now I actually feel well for the first time for years, to the point where I sometimes just sit and enjoy not feeling any of the complaints that I had to live with all that time.

    So, is asked, my advice to any fellow sufferer would be: you may not be trained in medicine, but you know your own body, and you know when it is and isn't right. Just because some incompetent idiot in a white coat who can't figure out what's wrong with you tells you there's nothing wrong doesn't change anything.Equally, you will know when a treatment is finally working, because your body will tell you.

    And all we can do, at least until the present system is fixed, is keep looking for that Doctor who is actually competent to treat you.

    My best wishes. I know how rotten it is to put up with both Hashimoto's and medical incompetence; but I also know that the Hashimoto's can be treated. ( I'm not too sure about the other ...)

  • hi chrisp

    i've made an appointment today i want to speak to them about leaky gut syndrome anyway, can you get this natural thyroid extract from a normal gp or did you have to go private? i am determined they will sort me out this year, i shouldn't have to be left to feel this way and i'm sick of being labelled m.e/cfs when i now think that quite clearly i am not, i very much appreciate any help offered and am following it all up with the gp even if they do think i need a straight jacket at the end of all this xxxxxxxxxxxxxxxxxxxxx

  • Hi sha39

    I'm not living in the UK, so I can't offer any advice relating to your health system. In fact, I'm cautious about offering any medical advice, as it seems to me each of us needs individual treatment. ( A large part of the problem with the way the "system" is currently treating thyroid patients is the " one size fits all" approach.) I know what works for me, but that same treatment might not work for anyone else.

    What I am sure of is that each of us knows our own body, and knows when it is and isn't right. Take that idea with you each time you deal with the medical profession, and don't let them persuade you otherwise.

    Stick with it; it is possible to get on top of Hashimotos.

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