Why has my Endo written this?

My Endo has gone back on what she had told me at the appointment.

At the appointment she told me I had Hashimoto's.

However in the report she has now put I have "primary hypothyroidism".

Here are results from 6 blood tests I have had done within the past year.

January 2013

TSH - 0.69 (0.27-4.2)

Anti-TPO antibodies - 84,000 (<34)

May 2013

TSH - 22 (0.27-4.2)

FT4 - 10.9 (12-22) - Started on Levo at 25mcg, 50 and then 75

August 2013

TSH - 4 (0.27-4.2) - Levo increased to 125mcg

November 2013

TSH - 4.3 (0.27-4.2)

FT4 - 15.3 (12-22) - Levo increased to 150mcg

December 2013

TSH - 4.6 (0.27-4.2)

FT4 - 15.6 (12-22)

Anti-TPO antibodies - 41,000 (<34)

January 2014

TSH - 2.7 (0.27-4.2)

These all show I have Hashimoto's!

The Endo has also suggested that these symptoms:

* Constipation after eating flour/wheat/gluten

* Inability to gain weight

* Cold intolerance

* Joint/muscle pain

* Fatigue

* Excessive daytime sleepiness

* Headaches

* Nausea

* Dry, flaky skin

* Migraines

* Cramps

* Muscle weakness

* Heavy/early/late/short periods

* Short menstrual cycles

* Puffy eyes

* Thin/fine hair

are caused by Vitamin D deficiency (result for Vitamin D is 43.6 with normal >75).

Is she right to think that and why has she changed her stance on what type of hypothyroidism I have? She told me at the appointment I have Hashimoto's!


Jo xxx

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32 Replies

  • Jo

    My understanding is that Hashis IS primary hypothyroidism. Try not to worry yourself so much....

    All the best

    Jayne xx

  • Hi Jayne, thanks for your reply.

    I just don't know why she's said my symptoms aren't hypo ones and is putting it all down to being Vit D deficient.

    Jo xxx

  • Well you clearly have Hashis and that's been validated and is being treated with Levo. Seems the D deficiency is also being treated- could you just be misunderstanding terminology? Getting the right treatment seems to me to be the important thing here xx

  • Ah, yes. I seem to have misunderstood.

    I have the copy of the Endo's report here.

    "It can take 6 months to recover from Vitamin D deficiency and this may explain some of her symptoms."

    So some - not all.

    So surely she would be attributing the other symptoms to the Hashimoto's.

    But I feel even worse as I did before I was told I was Vitamin D deficient.


    Jo xxx

  • Sadly it can be a slow process Jo. I'm assuming you have only recently been diagnosed so hang in there. From what you've said your endo doesn't seem too wide of the mark. It will take time.

    BTW I have had several nodules on the thyroid for years now. I'm told they're quite common and mostly benign so try not to listen to worrywarts or you'll drive yourself nuts. Hashis is quite enough to have to deal with.

    Get plenty of rest if you can. Have you tried meditation? While the distress of the illness is so very real and you need to treat it, meditation can take the edge off the acute mental pain that makes us feel so much worse.

    Take care, Jayne xx

  • Hi Jayne, long story.

    I was diagnosed with high Anti-TPO antibodies in Jan 2013.

    I was diagnosed hypothyroid in May 2013.

    Then I was diagnosed with Hashi's on Jan 13th this year.

    I haven't tried meditation, no. I think the health park up by where I live arranges this. I'll have a word with them Tuesday so thank you for the tip. :)

    Jo xxx

  • Hi. Well you obviously are hashi with those results. All those symptoms are also hypo symptoms. Unless you have other autoimmune conditions , then it probably would be a result of being a coeliac to some degree. You have to have your ferritin, vit b12, magnesium , selenium and vit d at optimum levels plus be taking optimum levels of thyroxine replacement before you can start to feel well. Also be addressing any other underlying health conditions.

    Your antibody results need to come down by way of adequate thyroxine replacement plus going on gluten free diet. You could also consider that you might not feel better until you introduce some t3 whether by taking synthetic t3 or switching to NDT such as Armour or Naturethroid.

    All this takes time to feel well. Hope this helps. :)

  • Hi Banjogirl, thanks for your comment.

    I have Ferritin, Vit B12, Vit D results here. These were taken a month ago however.

    Ferritin - 21 (30-400) - Supplementing with Spatone at 1 sachet a day.

    Vitamin B12 - 363 (180-900) - Supplementing with 3000IU a day.

    Vitamin D - 43.6 (>75) - Supplementing with 1000mcg a day.

    I don't think my GP or Endo will prescribe me T3 or NDT but I don't know if it'll benefit me as my FT3 looks ok.

    Jo xxx

  • Hi,

    Vitamin D & Hashimoto's come together . As does a few other things which you may like to read up about to see if any of them sound like you . Anaemia , Pernicious Anaemia , Addisons Disease ( Adrenal glans packing up ) . Also I would high recommend getting the book Stop the Thyroid Madness. And the same name website .



    I am hoping that your Endo has checked your adrenal function before treating your thyroid because if he hasn't you can get very sick .

  • Hi, thanks for your comment and the link.

    Addison's has been ruled out with an ACTH test. I have iron deficiency but not anaemia.

    I have got an adrenal saliva test kit I'm planning to use Tuesday.

    Jo xxx

  • Hi the other thing to always consider is that most consultants make mistakes in their letters, some times it is infuriating. One of mine, I take the correct things along side at the next consultation and give it back ( i am sure he loves me too!) , but that is because a Cardio and vital he understands. otherwise case of grin and bear it. Also they all like to play safe, most will not be too

    definite , in case wrong later. I find most say, she for me, when not sure, and I for them when I have proved them right!

    try not to worry, you are getting there and will feel "normal" again, in time.

    Jac kie

  • Hi Jackie, thanks for your reply.

    Yes, I mean I was very surprised the Endo wrote that I didn't have Raynaud's but I do suffer from Raynaud's as I get purple toes after being outside! It might not have been present when she examined me but she could have checked my toes as they were very red.

    Jo xxx

  • Hi funny that Endo even mentioned it, as not endocrinology. Usually a specialised rheumy ,as I am under and he is the president of the society.It is autoimmune so can often occur with any other autoimmune diseases. There is treatment now. i have had it for ever, but only discovered as as disease about 25 years ago.

    Best wishes,


  • You have primary hypo caused by Hashi's. The antibodies evidence you have Hashi's. NHS does not differentiate.

  • You need to get your free t4 at 22 or 23 and then it can be a few months at that dose before you feel better. I too had vit d deficiency but my hypo symptoms went when I was sufficiently medicated.



  • Hi i have much the same of all of your symptoms but i cant loose weight and keep putting it on. If you are unable to put on weight then i thought that was hyperthyroidism.

    My specailist just told me too is was Hashimoto but my TSH was 3.1. And my Vitamin D was just 18. You can have Hashimoto and be either hyper or hypo.

    I not sure what primary means unless she means early stages.

    As my specailist advised Hashimoto is just the posh name for hypothyroidism or if you like Low Active Thyroid.

    I hope thats helps, there are plenty of sites on google that explain the Hashimoto in depth.

    Someone may be able to help you more with your answer.

    All i know is it takes time to get the balance right, some poeple on here have said upto a year to start to feel normslish again.

    Good luck

  • Hi Tallmiss, thanks for your comment. I hope I feel normal soon. I've been diagnosed with high Anti-TPO for a year and I feel worse than even back then. :(

    Jo xxx

  • Hi

    Interested to note comment re NDT. My doc/clinical commissioning group refused it re allergic reactions to porcine, but I have been on Levo sodium for over 25 years and just diagnosed with essential tremor but think I have had it for a long time plus other symptoms on med sheet. Whilst last two bloods have been within range feel symptoms could be improved if I could go partly onto NDT. On 75ml and wanted to add in 25 ml of NDT just to see if it would make difference. Seeing endo next week but dont expect a different answer as they are all controlled by CCG. Think it is all down to money pharmaceuticals make from promoting drugsclike levo andcthe fact the others are not registered. Anyone else had trouble getting this through NHS? What happened to patient choice?


  • I agree with everything said above. Now you have a diagnosis it doesn't mean you will immediately feel well. It took time for you to become unwell prior to diagnosis and the depressing fact is it will likely take you as long to feel well, and that well may not be as well as before you started to become unwell.

    Following my high TSH in November, it's been back in range since end of Dec but the skin is still flaking off my hands, fingers and legs. Body is playing catch up to serum.

    Finally, Jo please stop deleting posts. It's very annoying when people have taken the time to respond to you.

  • I was going to say the same about deleted posts Clutter and it's also very difficult for people to reply to numerous posts about the same thing but worded differently.

  • I reckon accuracy is more important than originality and don't see anything wrong in c&p a previous response you've made if it's appropriate to the topic.

  • Hi Clutter,

    I deleted other posts because I was afraid of being a hypochondriac and worrying all the time. I also grew worried because no one was replying to them straightaway.

    Sorry for any offence caused, I did not mean it. :(

    Jo xxx

  • Hi Hypohen

    I deleted other posts because I was afraid of being a hypochondriac and worrying all the time. I also grew worried because no one was replying to them straightaway.

    Sorry for any offence caused, I did not mean it. :(

    Jo xxx

  • Hi Jo

    Just read the posts on this page and am sorry for all the trouble you are having. I hope you manage to get it sorted out - I'm afraid it can indeed be a long haul and I wish I could be of more help.

    At the risk of causing offence myself, I don't think it helps people when they are chastised for deleting posts or repeating themselves. We can't all always get our thoughts together coherently at the right time, (ie nobody is perfect) and many of us have the fear of looking like hypochondriacs, largely due to being dismissed as such by GPs and/or endos.

    If people in dire trouble and feeling terrible are 'told off' by others for the way in which they post, this will only discourage them from asking for help. Perhaps they might be new to the board or so worried that they break some kind of unspoken 'posting protocol' that I for one didn't know about. (Like Jo who has apparently caused annoyance).

    I am personally quite upset to see that Jo has been made to feel that she needs to make govelling apologies for any 'offence' caused. For what it's worth Jo, you haven't offended ME in the slightest, and I hope you will carry on posting so we know how you progress.

    I too am very 'sorry for any offence caused - I did not mean it'. How sad that sounds in the context of this board - whatever happened to tolerance?

    All the best Jo

    Kanga xx

  • Hi Kanga, thanks for your reply.

    I just don't like causing offense to anyone. I feel that everyone on here are my friends and I have no one else to talk to about my problems. Family don't understand and don't take to appointments like they used to when I had other problems going on, boyfriend begrudges me going to GP appointments all the time...I don't know what to do for the best really, I honestly don't.

    I've decided to stay anyway.

    Jo xxx

  • Hi Jo

    I think most of us on here, apart from the lucky few and those who do well and are stable on Levothyroxine, (or whatever they are taking), know only too well how hard it is when nobody takes your illness seriously. It makes you feel as though you're making a fuss about nothing, so as well as feeling ill you feel guilty about it, when you would actually give anything if you could only get better. (Then you wouldn't NEED to talk about it :-) )

    If you have supportive friends/family members/boyfriends etc, it's a bonus - but sadly they often don't understand much about the thyroid and it's effects, or don't want to know. Somebody always knows somebody else with underactive thyroid who 'just takes the tablets and is absolutely fine' - so if you're not, you must be making it up. It doesn't help that most GPs take this attitude too.

    I didn't know much about HypoT myself until everything went pearshaped for me. Luckily I found Thyroid UK and I have had a lot of valuable help and advice from others who are usually very knowledgeable, kind and supportive. I'm not well by a long way, but it does help a bit to have some place to come to ask questions or have the occasonal rant :-D when things get really bad.

    I just didn't want you to be put off from posting and asking advice. It is a long uphill struggle, and we hypochondriacs have to stick together!

    Good luck,

    Kanga xx

  • Hi Kangagirl, very true that we have to stick together LOL! :D

    Yes, I'd like to come on here and rant too but I'm still worried about told to shut up. Not by anyone in particular but that's the sort of mindset I have unfortunately.

    Thanks for your reply. :)

    Jo xxx

  • It's OK, ranting isn't compulsory! It's just that sometimes, say for instance if your GP or endo has been particularly dense or dismissive or downright cruel, it can be very upsetting - we hypochondriacs do tend to take everything personally :-) and it can help you get it into perspective by talking about it to people who have been through the same thing, instead of going over and over it in your head and baming yourself for something that isn't your fault.

    Of course you only think of the smart answers you should have come up with when you're back outside the surgery fuming or crying even. Been there, done that, so I know how you feel. Normally nobody on here would tell you to shut up - usually you get an outpouring of understanding and advice which goes some way towards making you feel better - well, less upset anyway - and sometimes you even end up laughing at just how bonkers and ignorant most GPs are (they are usually the biggest rant-causers, closely followed by well meaning but foot-in-mouth family and so called friends who expect you to turn cartwheels on a regular basis when you feel so ill you can barely move.)

    Or you might just be feeling particularly bad or low one day and need to let it out - and this is normally a safe place for you to do that.

    Don't worry if you're not a natural 'ranter' :-D We come in all shapes and sizes, and everybody is different. I get a lot of the same things that you do, especially including the nausea and inability to gain weight, and I feel really guilty saying that when so many others are struggling to lose it. I'd love an extra couple of stone instead of looking like a peeled twig. Sometimes I think if one more person comments on how thin I am, I'll have a total conniption fit and do them physical violence. To some people, 'being thin' seems to equate to 'having no feelings', so they feel they can say what they like.

    But, ho hum, we bite our tongues and say nothing. Usually.

    You are who you are and it's a shame that you worry about being told to shut up. But it's hard to change your natural mindset, especially when you're feeling ill and alone and vulnerable. Again, been there, got the tee-shirt :-D .

    Try to remember you're not alone, there are people on here who genuinely want to try and help - as you can see from all the replies. I really hope you are able to find a way up, and I wish I could be of more help.

    All the best

    Kanga xx

  • Hi Jo, if you suffer costipation after eating gluten, you really need to find out whether you have a food sensitivity to gluten (you can have sensitivity to it without testing positive for coeliac disease, but sensitivity to it can eventually lead to coeliac). The trouble is that Hashimoto's, and some of the other conditions that have been mentioned in this chain, are all autoimmune diseases, and apparently all autoimmune illnesses stem from some kind of systemic inflammation, which is USUALLY caused by food intolerances. You might want to do some research on leaky gut/ intestinal permeability and their link to autoimmune illnesses. A good functional medicine practitioner who knows about this stuff is helpful, and you might try doing some reading on the Paleo diet (a lot of people claim to have reversed all symptoms of some pretty heavy illnesses by following the protocol, google the paleo miracle book). Alejandro Junger has also written a book called Clean Gut, which aims to help people find the way to health by hearing their gut. Incidentally, my endo told me that wheat and dairy sensitivities are the main cause of Hashi's (which I also have). If you're having any symptoms of digestive di stress after eating gluten, you should consider looking into it. Good luck!!

  • Sorry -- should have said ...find their way to health by *healing* their gut, not hearing it!! Lol. Also, i may have worded my statement about autoimmune illnesses too strongly when i said they are *usually* caused by food intolerances. Perhaps "often" would have been a better chiocce of word. Anyway, wishing you the best! It can be a long path to feeling well, but you are being proactive, and that's sometimes the biggest step. If a doctor treats you like a hypochondriac, find a new one!!!

  • Hi Molliemdz!! Thanks for your reply and your help.

    My Endo wants to test me again for coeliac so I've been unable to do anything like stay away from gluten because of this test that's meant to be coming back. I've had no letter to confirm a date or time for this and the Endo has written in her report dated the 13th January: "I would like to repeat a coeliac screen in a month's time". Well, we're in February already and exactly a month from when she wrote that is 2 weeks away!

    So I'm a bit stuck at the moment. It's not that I don't want to help myself as I really do, but I don't know if I should do anything about my diet until after I have this coeliac test - whenever that'll be!

    Jo xxx

  • No, of course you're right to stay on gluten until after the coeliac test. But be wary of your result. The coeliac test won't tell you if you are "non-coeliac gluten sensitive" (in coeliac disease, the intestinal microvilli get worn down to nubs because of damage from eating gluten. The coeliac test probably won't give you a positive result unless they are really worn down low, but you can have gluten sensitivity without having your microvilli damaged to that level). All i would advise is to follow the doc's advice, stay on gluten, do the coeliac test, but if you test negative, then consider doing an elimination diet to test further for gluten and other sensitivities. Hope all goes well!

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