Hashimoto's diagnosis and useless doctors!

I'm new to this forum so hi everyone!

Have been in and out of the doctors since June (well, more regularly since June anyway) due to various symptoms which have stretched back for years. I was called back in a couple of weeks later and told that I have 'borderline hypothryoidism', given a piece of paper with a vague description of what it is and put on 50mcg of levothyroxine. After researching and making a nuisance of myself my doctor agreed to test me for antibodies, cholesterol and free t3. After much badgering to get my results back and being repeatedly fobbed off by the practice receptionist, it was eventually confirmed that I have Hashimoto's. Since then, as I'm sure many of you have experienced, it has been an uphill struggle to get appropriate treatment. I still feel awful - I'm 28 years old and have barely enough energy to walk my dogs. I have been in recently for more tests to see if the medication is having any effect, and all they tested me for was TSH and T4, not T3 or antibodies. I was not told whether to starve or not for the test, and have since read that I should have skipped my dose of levo that morning if the blood was taken first thing - which it was. My doctor now tells me (according to those results) that if anything, I'm now being slightly overdosed, despite feeling absolutely no different. Luckily, I have a loving and caring mother who is fighting my corner, and have now decided to go private since it has become abundantly clear that my GP is not going to be much help. Have just got off the phone with a doctor of functional medicine/nutritional therapist and what a relief it was to speak him. He was incredibly knowledgeable and reassuring. I am also sending feelers out to endocrinologists in the area. It is a very scary position to be in and GPs seem to just throw a one size fits all solution at the problem and send you on your way, with little regard for how complex the human body and immune system is! I've been treated for depression since my teens and it is now looking quite possible that it was just a product of a sub-optimal immune system all along! It's so reassuring to read all of your stories and know that there are so many people in a similar position. I wish you all the best and completely understand your struggle.

4 Replies

  • Yes .....sad but true your experience is all too common.

    If, as you have found, you can not get GP to do these tests, then like many of us, you can get them done privately


    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    If you have high antibodies, then you have Hashimoto's & you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    You do not need to have ANY obvious gut issues, to still have poor absorption or gluten intolerance

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.


    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed




    Long research article - final conclusion paragraph below

    "In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in QOL to occur."

  • Thank-you for all the information and the links :) I didn't know you could do home testing. That's really helpful! As I said, initially the docs didn't test for antibodies or free t3, (just TSH and t4) I badgered them to do so which is how I found out I have hashi's. That was early July and have been on 50mcg of levo since then, none of the symptoms have subsided except my weight has plateaued in the last few days (have been eating very healthily, have cut out gluten and taking vit d and probiotics for about 3 weeks. Also keeping a food diary.) I have been exercising regularly too but not so much in the past week as have had strep throat. Before diagnosis merely eating healthy for a few weeks would have taken about a stone off me by now.

    Went back to docs for 3 monthly test to see if meds are working, and my tsh is now slightly lower than doc would like so they think if anything I'm now being over medicated - although I still feel awful. Which is incredibly frustrating because I'm not exhibiting any hyper symptoms, I feel just the same as I did before, if not worse. They didn't test my t3 or antibodies that time and doc spoke to me like I'm a nuisance on the phone when I questioned this (I don't care if I'm a nuisance! It's my health and I will fight for it.) They also didn't tell me to starve for that test, and I took my levo that morning too (about an hour before.) So thinking the results may not be completely accurate.

    Have now managed to get a private referral after much to-ing and fro-ing. I have spoken to a functional medicine doc who gave so much information and advice, and said that the reason the T4 meds may not be working is because my body might not be converting it into active T3 properly. I've also been in touch with a couple of endos, just waiting to hear back now. In the mean time I'll definitely try those home testing kits, and try taking my medication at night instead of the morning. Thanks so much for your advice!

  • Sadly your story is not uncommon to many thyroid patients :(

    Doctors are not in the habit of monitoring Hashi's antibody levels. Am open to correction, however the presence of antibodies seems to be nothing more than a serum indicator of the diesease & there is no scientific "proof" (that I can find) linking the level of antibodies to the severity of symptoms. According to "medical science" there is no treatment for Hashi's hence the doctors ignore it & treat only the resulting hypothyroidism.

    Many people find that dietary & lifestyle changes helps though - eg. avoiding gluten, dairy, etc. Others find that Low Dose Naltrexone (LDN) helps "calm" the immune system & bring the Hashi's antibody levels down. Like many things with this though there is no "one hat fits all" solution & what works for me might not work for you so it's a matter of trial & "error" to establish a solution for you.

    Note that the use of LDN is not something your average GP will know about let alone consider.

    The advice given by SlowDragon is excellent & the only thing I can add is that you should look to read as much as you can about these diseases & advocate for yourself as the vast majority of doctors, even endocrinologists, do not have an indepth understanding of the disease or what we go through.

  • Thank-you very much for your reply. I'm only a few months into diagnosis and I am absolutely finding out, like you said, that doctors know very little about this disease. This one size fits all solution obviously doesn't work for many patients and all I can say is - thank God for forums like these and of course Google. Yep, my doc would not re-test my antibodies when I went back recently, they didn't even bother testing my t3! I am going to try a functional medicine doctor and maybe an endo too (but am only seeking out ones with direct experience of managing hashimoto's.) Am hoping this, alongside eliminating inflammatory foods, eating healthily, the right amount of exercise, and taking the right vitamins will help me feel better. It is so so frustrating being so exhausted all the time. I will definitely look into this LDN stuff too, has it helped you feel better? Thanks again.

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