Hi, I was diagnosed hypothyroid about 6 years ago and at first I was just relieved to find out there was actually something wrong ... for about a year previous to diagnosis I had been living a life with 3 default settings, shouting, crying, sleeping ... how my fella is still with me I will never know, I was put on levothyroxine and all that really changed was the figures on my blood tests. Now six year on I am 3 stone overweight, have very bad carpal tunnel, newly developed plantar fasciitis, no self esteem, brain fog and awful depression no to mention the most terrible mood swings. I have taken a private T3 test after my GP lied to me and said my ranges were normal and then another doctor said there is no T3 test available on the NHS, I am not sure who was right but when the second doctor looked up T3 testing on her PC no test showed up. My Free T3 was within the normal range and I was at a loss as to what was happening to me. After lots of internet searching I found that there is a possibility that although my Free T3 levels are within range my brain may not be able to up-take the T3 properly due to a genetic problem with DIO2 gene. I want to have the DIO2 test done but I am not overly confident that my GP will even recognise the test as he is very much set in his ways and seems to know very little about hypothyroidism save prescribing levothyroxine. I have had many disagreements with him regarding my treatment or lack of it and he just patronises me every time I try and discuss my ongoing symptoms with him.
Does anyone have any advice or has any one experienced similar difficulties with their GP and have any advice how to overcome the problem of a GP who doesn't listen.
Many thanks for reading my post
Amanda
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amandahoyl
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Before considering DIO2 gene test.....first step is to get FULL Thyroid and vitamin testing
Is your hypothyroidism due to autoimmune thyroid disease also called Hashimoto's, diagnosed by high thyroid antibodies?
Low vitamins are extremely common, and especially with Hashimoto's
do you have any actual blood test results you can add?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Thanks for the reply SD, I have had annual tests over the years since diagnosis, I will get hold of the surgery tomorrow and ask if there is any online facility and if there is not I will ask for a print out of my latest tests. I took a private T3 test with Medichecks two years back and when it came back within range I was convinced I was just going mental. My GP has never given me any real advice about my condition or my medication or how to take blood tests. Sometimes the tests are in the morning, sometimes they are in the afternoon, none of them apart from the first have ever been fasting and I'm not sure my practice has the first idea about conducting testing properly. Since being diagnosed I have battled with many symptoms most of which my GP has dismissed as menopausal ... I did see another Doctor who at my request increased my levothyroxine dosage but I felt it made me aggressive and desisted with the elevated dose, my own GP wasn't impressed it had been raised. I've also had a ferritin test and been tested for B12 as my dad has pernicious anemia and I was put on folic acid for a while. There is just no consistency with my GP or practice and when I went armed with lots of information my GP basically dismissed everything I had to say and said I shouldn't read books about hypothyroidism !!!
The D102 gene disfunction is only one of several reasons why your thyroid treatment is not working as it should.Please get a copy of your blood results to post so we can advise further and get tot he bottom of what is holding you back from getting well.In particular you need to have your B12, vitamin D, folate and ferretin if these are not at a good level your thyroid medication will have no effect. You are very much not alone in having poor treatment from your GP, just read a few of the other posts.
Hi MandyJane, thanks for the reply, I have read countless posts on numerous sites, many of which have made me cry with anger, frustration and sorrow for all those out there suffering ... I'm generally pretty good at coping but I just took on a new business and it's made me realise just how poorly I still am and just how bad my NHS care is ... I know I am not alone and I know others have far worse problems than me but I reached out because I really do need to get to the bottom of why I still feel so unwell mentally and physically, apart from the crippling fatigue which I forgot to mention in my original post the most annoying aspect of all is the fact that I am quite sure I could be well again if only I could get my GP to take my lingering symptoms seriously instead of him believing it's all in my head ... I go through cycles of hope and despair and then I tend to just get on with it but taking on the new business has highlighted just how mentally fragile I am and just what a physical toll 6 years of insufficient treatment has actually had. As I have said to SD I will get hold of my test results asap and post them but I don't hold out much hope for having a full set of test results or even being able to get a full panel done via my GP but I am willing to take a full panel via media checks if my GP refuses to test me. Speak soon ...
Amandahoyl, You've described perfectly some of the terrible experiences we go through when hypo. I immediately texted a hypo friend with this brilliant description: " I had been living a life with 3 default settings, shouting, crying, sleeping ..."
The important thing with thyroid hormones is not just being inside the range, but where we fall in that range. To feel well on thyroid hormones freeT3 needs to be pretty high in the range, and freeT4 needs to be right at the top.
The reason you are still feeling bad is almost certainly because you're on the wrong dose. We don't need to look for more complex issues to start off with.
As others have said, get together all the blood tests you can, and make a new post with them in. Members can interpret them for you and tell you where to go next.
To make it easier make sure you type them all out, include the ranges which will be in brackets after your result, and clearly label them with the dates taken and the dose you were on at the time.
Excellent advice from many above. I would like to add that in the beginning of this problem, i.e. when you realize that all is not well with your treatment, it is essential to take matters into your own hands. Read up as much as you can on this topic, come to this forum for questions and, unfortunately, spend a little more than you probably want on your own private blood tests. In the beginning (for about a year) it might be a bit expensive but once you are back in control of your own well being you will be spending very little on all this, maybe even a maintenance cost which the NHS will cover. While the doc will give you what he thinks is right you must do your own experimentation on what actually makes you feel right. Many of us are in this boat, doc insists on 100 mcg, but we take 125 mcg and we don't tell them. I realize that this sounds terrible, but if you read widely and educate yourself and avoid risks (watch your BP), you will get back in control. You have to ignore a lot of what the doc tells you because they are very under educated on the topic of thyroid and you are in the best position to know what works for you. We all understand how horrible it is when the doc tells you something stupid - it happened to me just last Monday and I have been really well for about 10 years now. My TSH was low and my GP told me to reduce my medication (he only measured TSH and T4!), I almost told him where he could shove it, but I was quietly polite and sent him and email later as to why I was not going to do that.
In range is not good enough you have to be optimised within the range. Ideally TSH between 0.2-0.5, free T4 and free T3 in the top third of the range. I think you will find when you get the print out of your results (make sure the ranges are given) that you are not optimised. ThyroidUK can give you a copy of the Toft article from Pulse explaining this (he is an eminent endocrinologist and physician to the Queen when in Scotland, before recently retiring) that you can take to the GP to educate them and get better treatment. Thyroid UK is recommended by NHS Choices should you get the line you should not be looking on the internet 🙄
I have the DIO2 gene but it is rare so try and get properly optimised first. If you still feel unwell with hypothyroid symptoms after getting those sort of numbers you can cross that bridge when you come to it, be happy that there are options. All my relatives feel very well on Levothyroxine, I must have been unlucky! Good luck ☘️🍀☘️
Sadly, there is nothing that surprises me in what you say about your GP, I’ve been there, and several times. As you have ongoing symptoms of hypo I would (if it was me in your situation) make sure that a recent test has been done, including free T3.. then I’d try increasing the Levo by 25mcg. This should make a difference", and then I’d have a holiday! Agree with advice on othrt posts ... good luck
Thank you all so much for the info and support, I went to an osteopath for my foot problem, looks like its plantar fasciitis, she told me to go to another doctor and have it looked at again as she wasn't impressed with my doctors diagnosis of plantar fibroma, she, the osteopath, also said that hypo could cause other problems like carpal tunnel which I have. I went to another doctor and she agreed firstly to send me for a foot scan and secondly to send me to the Endo for the first time since I had been diagnosed hypo 7/8 years ago, I was understandably over the moon. I also had bloods taken, no results yet. Later in the week I had a message from my surgery asking me to phone and another message from my GP who was in short a total arsehole, he said he didn't think a scan would help with my foot despite the fact he hadn't even seen it for over 6 weeks and that I should come in for a little chat about my problems but unfortunately he wasn't available for nearly 3 weeks. I phoned the surgery to see why they had asked me to phone and no one seemed to know why, I explained that another doctor had said I was to go for a scan and to see the Endo and the receptionist confirmed that radiology had already been contacted re the scan and that there was a letter waiting for the other doctor to check and sign for Endo ... I simply couldn't believe my GP was attempting to cancel the other Dr's arrangements ... I'm not sure if he will overrule what was going to happen or whether I will get the scan and the Endo appointment ... either way I'm never going back to him again. I also signed up to access my records on line and have done so but all my tests came back normal bar a couple. Given there are several years worth it took me a while to sift through the info as you can only view one months at a time. I didn't think there was any point posting them as they were mostly within 'normal' range but I will take another look and post them soon, once again many, many thanks to you all x
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