Hypo symptoms for years and no dr will treat me

I've been feeling ill for the past 10 years. Every blood work up comes back normal. I'm exhausted all the time, hair and eyebrows falling out, can't concentrate at all and I feel like I'm in constant slow motion. That's just a few of my symptoms. Anyways, my tsh bloom work has always been around the 2.0 range. I've been to two endos that said I was fine except that my vitamin d was 21 in 2014. Fast forward to now, vitamin d is 17! My tsh is 3.31 which I know is hypothyroid and maybe hashimotos since my vit d is so low. My dr absolutely won't listen. I can seem to find a dr that will actually listen to all the symptoms I have and not just the stupid tsh numbers. I'm at the point I'll just buy my own medicine and Medicare based on how I feel while doing my own blood tests. I feel like my life is wasting because I feel so awful all the time.  Any opinions as to how to handle this and take control. I'm nervous about self medicating but I'm at a point where I'm desperate 

33 Replies

  • I think it would be a good idea to have some tests done privately through Thyroid UK - with a discount.  You need the following - TSH - FT4 - FT3 -Anti-TPO - Anti-Tg - the last two being anti-bodies which will confirm Hashimotos.  Also have the B12 - Ferritin - Folate tested.

    What was your VitD result and how much are you taking ?  It is fat soluble so needs to be taken with GOOD fats.

    You may find your B12 is way too low which can present with similar symptoms to being Hypo.  Also you can have thyroid anti-bodies but still have in range FT4 and FT3 - I did !


    Having only the TSH tested is not a good indicator of what is going on with the thyroid.  The link above will take you to the main website of this forum - Thyroid UK - and there you will learn about which tests and why as well as many other topics concerning the thyroid ....  lots of reading I'm afraid.

  • If you are in a state where you can self test you can get them at local hospital at low cost- ft3 may cost more - ask at pharmacy for docs who prescribe NDT as they will be more likely to do other testing and have more knowledge/ sympathy and prescribe at lower tsh numbers

    Good luck

  • Hi,

    I self medicate, & am very sure I have secondary hypo. I don't think even blood tests will flag this up, so I treat according to how I feel. Wish I'd known about NDT in 1979!


  • Most of the symptoms you state I also had and blamed on my thyroid problem and doc would or could only do tsh. Had a private blood test done with blue horizon mostly to get a t3 test done believing I could present evidence to doctor of a problem and found out thyroid results were ok but vitamin D was 30 and b12 240 which is low but not considered treatable by NHS. Fast forward 6 months and loads of d and b12 supplementing and my symptoms are gone and I feel a new woman. Don't underestimate your low Vitamin D LEVELS as they are in the severe deficiency level.

  • Good to hear Auntyp62 you are improving - just wondered how your grandson is and the rest of the family ?

    Apologies for hijacking this thread !

  • We have had improvements in all the family since supplementing but still early days and hoping for more, still waiting for results of gene test as my son needs convincing that supplementing is necessary and won't hurt if not needed. Unfortunately he sees doctors as totally knowledgable and always right!!! So frustrating!

  • I self medicate too. I have secondary hypothyroidism which the endos have dismissed. The biggest revolution is all my joint pain has gone. For years I though I had arthritis. If you can afford it go and see a holistic dr if not just but some NDT. I take thyroid S which had raised by T4 from 7 to 12. 

  • All my lot were severely hypothyroid with TSH of just 2.9 so know how you feel

    TSH means zilch and they should know that if they bothered to study thyroid

    If you can buy your own meds especially NDT do so and treat yourself theres excellent advice on the web .............pm me for details

  • Doctors these days have never learned the symptoms of hypothyroidism (of course you wouldn't expect them to all 300+ but at the very least the common ones such as you mention). However many thousands remain undiagnosed which in turn may cause other more serious problems.

    This is from Thyroiduk.org.uk


  • To send a private message (pm) to someone, you click on their name and it will take you to a new page and you can send a message which is private between you. We do not name doctors or the whereabouts where to source thyroid hormones on the main forum.

  • I self medicate with and have been doing it for only a few weeks now. It could be that your T3 and T4 are not in range but your TSH isn't indicating it yet. Mine were both at the bottom of low and my TSH was only slightly elevated. It can happen really slowly like it did with me. As suggested try and get a private blood test done that is more intense than most NHS ones. Also I supplement with vitamin d3, b12, selenium, vitamin c and iron all taken individually. I found my body didn't absorb multi bits that well. I hope you get it sorted I know how awful it is when nothing shows but you feel like poop.

  • Sorry that was meant to say I self medicate with Natural dessicated thyroid.

  • Your health is at risk with a low vitamin d level.  you need a good quality vitamin d3 and K2 which hopefully you have a good health food shop near to you. If your thyroid and b12 is under it is not good either.  Whereabouts in the country are you? 



  • Is the starter of the thread in the US? refers to "Medicare"

  • Yes I'm in the US, but Medicare was a typo. It was supposed to say medicate 

  • Some of the responses were assuming you were in the UK so better to make clear at the start as this is a UK site although all are welcome.

  • I'm writing this on the assumption you live in the USA. It is possible to get blood tests and saliva tests done in the USA without the input, permission, or approval of a doctor. All you need is money. (Surprise, surprise...)

    Go to this link :


    and scroll down until you come to a section giving details of labs in the USA which can be used without a prescription or the input of a doctor.

    The absolute minimum tests required are :

    Thyroid Stimulating Hormone (TSH)

    Free T4 (NOT Total T4)

    Free T3 (NOT Total T3)

    Vitamin D3

    Vitamin B12



    Tests which are desirable if money permits :

    Other iron tests : % Saturation, TIBC and Serum iron.

    Saliva tests to test cortisol and DHEA.

    If you read the page I linked above there are some other tests that are nice to have done, but for many of us the cost is simply too high.

    Once you have some results post them in a new post including reference ranges and units of measurement. We can help with the interpretation.

  • I should have also included thyroid antibodies in my "absolute minimum testing" list :

    From STTM : "anti-TPO and TgAb (anti-thyroglobulin) will help discern Hashimotos. You need BOTH, not just one of them. You can add TSI for the Graves antibodies–some have all three."

  • I had the same problem. My RT3 was high. Try stopping the thyroid medication for about 12 days. You should start feeling better by the third day. Around the 13 day start your medication back. I hope this helps....it worked for me.

  • Are you actually taking D3, and finding that your test result is going down in spite of supplementation?   If you can't absorb it, that could be a sign of gut problems, which will cause you to poorly absorb other supplements.  You should do higher supplementation of all the usual nutritionals (B12, D3, folate, iron, selenium, etc.)  If you think you have leaky gut, then give your gut a rest by avoiding problematic/hard-to-digest  foods like gluten.  And don't be afraid of self-treatment with NDT or T3+T4 ... doctors don't care, only you can solve the problem.

    If you're not sure about how much thyroid to take, start with the Abbott full-replacement estimate (T4-only) of 1.7mcg/kg body weight, then use the T3 power factor of 3-4 to estimate how to subtract T4 and add T3.  If you use NDT, each grain has something like 9mcg T3 + 38mcg T4.

    There are a number of US labs where patients can order their own tests.  TrueHealthLabs.com, HealthcheckUSA.com, etc.

  • You don't have breast implants do you ? 

  • No I dont

  • Curious... Why did you ask this? 

  • Lots of women with breast implant illness have thyroid problems as one of the first symptoms

  • Hmmm, interesting. I have breast implants.  I will have to research breast implant illness. Thanks! 

  • I'm in the US and complained of many of the same symptoms as you for years. Thyroid tests were always "within normal range" and if anything, typically on the hyper side yet I seemed to have all the hypo symptoms (including the losing of the outer third of my eyebrows as well as my eyelashes). 

    I am lucky enough to live in MA where Dr. Kenneth Blanchard practices. He saved my life. He took one look at me and said, "you might as well have a giant letter H stamped on your forehead as you are clearly hypothyroid." Bless him!

    He started me on levothyroxine and my joint pain eased up the very next day. 

    That was almost two years ago. I've had my ups and downs since then (I also have lupus and sjogrens so I'm a complicated case) but I truly believe my thyroid meds make the most difference in my quality of life. I'm currently on levothyroxine and compounded slo-release thyroid extract (T3). 

    If you want any info on Dr. Blanchard, send me a PM. He is a private endo (self pay for appts) and treats ~approx. 1500 patients all over the world. Without him, I don't know where I'd be now. 


  • Hi,

    It should be really hard to feel like this..

    Have you checked your cortisol levels? or other hormones that can contribute in not feeling healthy?

  • My TSH was 3.32 when I was diagnosed but I had to get a private diagnosis. I was lucky as my GP has accepted this (in fact he suggested the private appointment as it was clear I was getting nowhere with NHS endocrinologists). 

    Good luck. 

  • Well I sent my dr an email before I see her next Monday saying I'd like to do at least a trial of medication. I mentioned the research I've done and added a few articles as well to back me up. I also mentioned that me and my husband are trying for our third and it took around a year trying for both children which I really think is due to my thyroid. Everything. I read says a tsh should be between 1&2 for optimal fertility. I guess I'm just going to pray she listens and if not the. I purchased thyro gold to test out and I'll order my own blood work

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