New here support for my girlfriend needed

Hi I am newly registered and posting for support for my girlfriend, she is 30 and was diagnosed with hypothyroid 6 years ago. She lost her job a year ago from what her parents said was a nervous breakdown - she had symptoms of tiredness, insomnia, memory loss, confusion and I am sure she was overworked since she worked from 7 in the morning until half past 10 in the evening and had a short break from about 2 in the afternoon until 6 in the evening and most of that time she spent sleeping. She went to her GP who diagnosed her with chronic fatigue and workplace stress and 2 weeks later was dismissed from her job despite her manager knowing she had a thyroid condition.

My girlfriend informed her manager she has a thyroid condition and that her endocrinologist informed her by letter that it would take several months for her body to catch up with good biochemistry. Her manager did not seem to understand this and told my girlfriend to "sort herself out or she will not keep her on". After making several silly little mistakes which frustrated her manager my girlfriend left and she continues to have painful memories of the events when she worked for this person since the manager called her names and labelled her financially motivated just because she could remember certain number combinations.

She feels very lost right now, she has other symptoms causing her problems - she has an increase in constipation, periods almost draining her of iron, puffy feeling under her eyes, losing hair and eyelashes, breathlessness when walking uphill, flaky edges on nails, joints and muscles aching.

If anyone could advise I would be grateful.

TSH 6.2 (0.2 - 4.2)

Free T4 13.1 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Last edited by

47 Replies

oldestnewest
  • I'm so sorry to hear that. It's a terrible situation to find oneself in - I know, because I've been there. People just don't understand.

    The first things she should do - if she hasn't already - is get copies of her blood test results. It's important that she know exactly what was tested, and exactly what the results were. If she don't understand them, it doesn't matter, you can post them here and someone will explain them to you. But, not all doctors do all the right tests, and the doctors don't always understand the results, themselves! If there are test missing, then we can point you in the direction of getting them done privately.

    She is likely to have nutritional deficiencies - incidentally, it's not her periods draining her iron, she is having heavy periods because her iron is low. And, if her iron is low, then other nutrients will be too, not only causing a lot of her symptoms, but stopping her body from metabolising thyroid hormone correctly. Doctors know less about nutrients than they do about hormones, so she won't get any help there. But, nutritional supplements can be bought over the counter, and we can tell her what to get.

    We will also need to know what she's taking, and how much - and how she takes it. Also the timing and circumstances of her blood tests - a lot of important information to give a clear picture of where things are going wrong. So, when you have some more information, post it here, and we can get things moving. There is hope, and she's not alone - although I'm sure it feel like it for her, at the moment. And, of course, she's lucky to have you. :)

  • Thanks she takes 150mcg levothyroxine and she takes it in the morning on an empty stomach several hours away from food and supplements.

  • So, what supplements is she taking? How much of each?

  • 800iu vitamin D3 since 2013

    5mg folic acid since 2016

    210mg ferrous fumarate once a day since February 2017, iron infusion done May 2016

    3 monthly B12 injections last one June 2017

  • Her results have been added.

  • She's under-medicated. Her TSH is much too high - when on thyroid hormone replacement, the TSH should be one or under. And, her Frees are too low. Most people need them up the top of the range to feel well.

    No antibodies or nutrient tests?

  • Thyroid peroxidase antibodies 457.3 (<34)

    Thyroglobulin antibodies 266.3 (<115)

  • OK! So, she has Hashi's.

    Is she on a 100% gluten-free diet? That could help lower the antibodies, and make her feel better.

    Is she taking selenium? That will lower antibodies and help with conversion.

    But, the best thing she can do is get her TSH down to about zero, and keep it there. That will minimise the Hashi's attacks on her thyroid. So, she's probably going to need several increases of 25 mcg, six weeks apart.

    A combination of these three things should make her feel much, much better. But, doctors don't have the slightest idea what it's all about! They think antibodies are insignificant. How wrong they are!

  • Thanks no she is not on a gluten free diet, she has found this very difficult to do. She isn't taking selenium either so I will suggest to her she does this.

  • Why does she find a gluten-free diet difficult to do? Does she miss bread and stuff? There is good gluten-free bread out there, I believe.

  • Yes she does miss bread etc

  • Well, as I said, there are gluten-free breads available in the shops. And, she could always try baking her own.

  • Vitamin D 45.3 (25 - 50 vitamin D deficiency. Supplementation is indicated) result taken October 2017

    Folate 2.2 (2.5 - 19.5) result taken November 2016

    Vitamin B12 336 (190 - 900) result taken February 2017

    Ferritin 55 (30 - 400) result taken September 2017

    MCV 78.2 (80 - 98)

    MCHC 377 (310 - 350)

    MCH 28.2 (28 - 32)

    Haemoglobin 120 (115 - 150)

    Red blood cell count 4.41 (3.8 - 5.8)

    White cell count 7.13 (4 - 11)

  • All much too low

    What is GP doing about these

    See SeasideSusie detailed advice on vitamins eg

    healthunlocked.com/thyroidu...

    Vitamin D - with Hashimoto's the best option is mouth spray by Better You

    Suggest starting either on 3000iu or 5000iu daily

    Retest after 3 months vitamindtest.org.uk - £28 postal kit

    Likely to need daily supplements for life. Once get to around 100nmol change to maintenance dose. Trial & error what she may need. Hashimoto's tend to use or need more than normal.

    Likely need more in winter than summer. Test twice yearly until learn what need

  • Now we're rocking! :)

    'Vitamin D 45.3 (25 - 50 vitamin D deficiency. Supplementation is indicated) result taken October 2017'

    So, how much vit D3 is she taking?

    'Folate 2.2 (2.5 - 19.5) result taken November 2016'

    Her folate is below range! Has her doctor prescribed anything? If so, it will be 5 mg folic acid, which isn't the best thing to take.

    'Vitamin B12 336 (190 - 900) result taken February 2017'

    Her vit B12 is too low. I would suggest she take 5000 mcg sublingual methylcobalamin (B12) daily, until she's finished the bottle. Then get the 1000 mcg dose for maintenance. With that she should take a B complex, containing at least 400 mcg methylfolate, which will bring her folate up nicely.

    'Ferritin 55 (30 - 400) result taken September 2017'

    Her ferritin is much too low, as I suspected. It needs to be around mid-range. I'm afraid I don't know much about supplementing iron - there are always some things you just can't get a hypo-foggy brain around! But, I do know that the best way to raise it is to eat liver once a weeks, with some form of vit C, like mashed potatoes, to help with absorption. Hopefully, someone else will step in here, and make some helpful suggestions.

    And her doctor has done nothing about all these deficiencies? He should be shot!

  • Usual story - was on higher dose plus T3.

    T3 stopped 3 months ago and gut function F****d up as a result

  • Yes, I saw that. I wonder, is anybody collating these cases. Is it not irrefutable proof that T3 is necessary for so many people?

  • 800iu vitamin D3 since 2013

    5mg folic acid since 2016

    210mg ferrous fumarate once a day since February 2017, iron infusion done May 2016

    3 monthly B12 injections last one June 2017

  • Yes, I answered this above, where you posted it before.

    Now I can't find it! I didn't see the list of things she's taking until after I'd written all that about supplementing! Let's try it again...

    800iu vitamin D3 since 2013

    Not enough to raise the levels of a sunburnt gnat! But, that's what doctors always prescribe. They say it's all they're 'allowed' to prescribe, but I don't know, sounds fishy to me! Anyway, she needs more that that. About 5000 iu a day, perhaps?

    And, with that, she should be taking vit K2 - MK7. Because, taking vit D3 raises absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth, and doesn't build up in the soft tissues.

    She should also be taking magnesium, because taking vit D3 uses up your magnesium, and she's probably low to begin with - most people are.

    Vit D3 and K2 - MK7 should be taken with a greasy meal, four hours away from thyroid hormone.

    Magnesium 6 hours away from thyroid hormone.

    '5mg folic acid since 2016'

    Folic acid isn't very well absorbed. Get to that later.

    '210mg ferrous fumarate once a day since February 2017, iron infusion done May 2016'

    Obviously that isn't enough, as her result is still low. I should think she needs twice that much a day. And/or the liver!

    Iron should be taken 4 hours away from thyroid hormone.

    '3 monthly B12 injections last one June 2017'

    Given her level of B12, this isn't enough, either. I would suggest she takes 1000 mcg sublingual methylcobalamin daily, towards the end of the three months, when she starts to feel she's flagging a bit, and the low B12 symptoms return.

    She should also be taking a daily B complex, because the Bs all work together, and need to be kept balanced. If she gets one with at least 400 mcg methylfolate, that will bring her folate up much better than the folic acid.

    A B complex should be taken two hours away from thyroid hormone.

    :)

  • A lot of doctors, even if they agree to give B12injections, don’t do the recommended treatment plan at the beginning of treatment but just go straight to the maintenance dose of 1mg injections every three months. At the beginning of treatment she should have been given 1mg every other day for two weeks. If this wasn’t done then it will take ages, if at all, for her body to build up a suitable amount of active B12in her system

  • Thanks, no this wasnt done. She was just started on the first of her 3 monthly shots

  • This is the quote from the NICE guidelines

    “Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks.

    Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months.“

    So even NICE aren’t abiding by the manufacturer’s recommentations

  • I would go back to the gp and ask them to restart the B12 using the NICE guidelines, as well as all the other things that have been suggested

  • I think she needs to talk to her GP to up her supplements n get her GP to suggest how much to take. My discussion with my GP always leads to a me who feels better after a few weeks! Her TPO antibodies need to be controlled.

  • Hmm.. i feel quite sick when my ft4 went to the upper limit of the range. GP reduced my meds abit n I'm back to norm again.

  • Well, we're all different. I said 'most people', which is as true as one can get with a detailed survey. But the OP's girlfriend is a long way off that, at the moment, she's under-medicated. And no-one is suggesting she over-medicate. The whole point of the exercise is to find your sweet spot and stick to it. If she feels well before she get's to the top of the range, presumably she'll have the good sense to stop increasing.

  • True.. it took my gp two years to get to a stable level, but we have to readjust it again coz I'm feeling a bit ill these days. Hashimoto's might be flaring. Lol!

  • You will probably have to keep readjusting for the rest of your life. That's something I'm just realising. The idea that you find your sweet spot and stay with it forever, is just not realistic. Several years, probably. But, more likely, there will come a point when you need to adjust up or down, because needs change. You don't stay static for your whole life, even when you're adult. So much is going on in this wonderful machine we call our bodies that we can't even guess at. We have to take things day by day, and not start panicking and screaming that our levo no-longer works, or whatever. Just accept that it's time to move on, again.

  • First thing is do you have any actual blood test results? If not you need to get hold of them. Your girlfriend is entitled to have them under data protection laws.

    You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

    If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

    You need to know results for TSH, FT4 and FT3.

    Do you know if your girlfriend also has high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

    Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.

    If you have results and ranges for these add them to the post

    If her antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

    Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut. About 5% are coeliac, but over 80% of us find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

    But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

    Changing to a strictly gluten free diet may help reduce symptoms.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/the-gluten...

    scdlifestyle.com/2014/08/th...

    Low stomach acid can be an issue

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    Other things to help heal gut lining

    Bone broth

    thyroidpharmacist.com/artic...

    Probiotics

    carolinasthyroidinstitute.c...

    hypothyroidmom.com/hashimot...

    Great film definitely shows why just testing TSH is inadequate

    drbradshook.com/understandi...

    Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

    verywell.com/should-i-take-...

    Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

    If you can't get full thyroid and vitamin testing from GP

    thyroiduk.org.uk/tuk/testin...

    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 money off offers. DIY finger prick test or option to pay extra for private blood draw or

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

  • Thyroid peroxidase antibodies 457.3 (<34)

    Thyroglobulin antibodies 266.3 (<115)

  • So very definitely Hashimoto's

    Medics here in UK tend to just call it autoimmune thyroid disease

    They ignore the antibodies aspect, but we the patients need to find the root cause and get antibodies down to feel better

    Usually leaky gut is cause, leading to food intolerances, most common by far is gluten. 2nd is dairy or sometimes just casein (in cows milk)

  • Thanks. How easy is it to exclude gluten from diet? She does have difficulty with dairy as well, she gets a lot of bloting and stomach cramps on this.

  • Well none of would choose it, but as it can make significant difference it's worth trying for 3-6 months. If it helps stick on it

    Some (like myself) notice instant improvements, others find more subtle positive change

    Worth measuring antibodies once year (have to do so via private tests NHS refuse to repeat) My antibodies are down 2/3rds since going GF 18months ago.

    See Coeliac UK website to learn about gluten

    There's increasing GF options in supermarkets, eating out quite easy. Eating at friends and family......can be tricky! Essential to explain it's not a fad.

    M&S do good GF range, bread is my favourite

    Watch out for hidden gluten in most unexpected places

    Beers and lagers - there are now GF options (even in my local pub!)

    It gets easier, but it's tough changing eating habits to start with

    Dairy replacement- do not use soya milk

    All soya is bad for thyroid

    See The Thyroid Pharmacist website for masses of info- she is dairy and gluten free

    There's also her video series the Thyroid Secret on you tube

    Also avoid all flouride

    Check your local water board to see if tap water has flouride added

    Change to flouride free toothpaste

    It all helps

    Still likely to need addition of small amount of T3 but not until vitamins are much improved and use to new diet

    Can email Louise at Thyroid Uk for list of recommended thyroid specialists, often T3 friendly

    Louise.roberts@thyroiduk.org.uk

    Lastly join the campaign to prevent T3 from being withdrawn on NHS. It's a cost issue

    engage.england.nhs.uk/consu...

    dailymail.co.uk/health/arti...

  • easier than it used to be.tesco has whole section,marks too.end up eating less bread but it's there.even frozen gluten free pizzas etc.most supermarkets have an area,even Aldi.good to cook a bit more from scratch where possible if energy permits.

  • TSH 6.2 (0.2 - 4.2)

    Free T4 13.1 (12 - 22)

    Free T3 4.0 (3.1 - 6.8)

  • So how long has she been on 150mcgs

    She is very under medicated

    Needs to see GP for dose increase of 25mcgs, retesting after 6 weeks

    Has she had dose reduced recently or T3 taken away?

    Vitamins likely very low

    Get GP to test these ASAP

  • She has been on this for a week after these results were given. Dose was reduced in September and had T3 removed 3 months ago.

  • We have seen many similar cases recently

    Started on T3 by one endo, doing OK and then T3 is stopped

    But with Hashimoto's it is likely she needed to be gluten free too to tolerate T3 well

    But when it's stopped the result is usually dire vitamins as gut is so badly affected.

    Then the Levo is cut further

  • What was she taking when on T3 too

    Presumably a higher dose of Levo as well?

  • No she took less levothyroxine at the time.

    75mcg levothyroxine and 12.5mcg T3.

    TSH <0.02 (0.2 - 4.2)

    Free T4 20.6 (12 - 22)

    Free T3 5.4 (3.1 - 6.8)

  • Oh that's refreshing.

    So her dose was increased a week ago to 150mcgs from what?

    Not from 75mcgs all in one go I hope.

    Dose should only be increased in 25mcg steps, waiting for 6 weeks before retesting and/or increase

    But her vitamin levels are so low she will struggle to use the thyroid hormones

    She needs to supplement to improve these at same time

    we keep seeing members who had both T3 stopped and T4 cut, which is even worse.

  • Yes she had it increased to 150mcg in one go

  • If she finds that too big a jump (puts tremendous strain on adrenals) she could cut back to 125mcg for 6 weeks.

    I think that underlines that endo changing her dose so rapidly has little idea about thyroid disease. Especially as has not offered any advice or support regarding vitamins either, which are critical for good thyroid function

    Many endo's are Diabetes specialists, there are very few true Thyroid specialists

  • She should take 150mcg till the next blood test. She might feel a bit shaky if the hormone when over the roof but it'll help the GP to have a better guess to help ur girlfriend to feel better. Also, ask her to request for tpo antibody test the next time she sees her gp. It usually works for me whn i pointed out that my previous test, TPO antibodies seem very high n i don't feel very well, n then ask my gp if it's my Hashimoto's flaring up.. n finally ask if we should do another tpo test.. Sometimes pretending u know less empowers GP to want to help more...

  • She has high thyroid antibodies, thanks

    Thyroid peroxidase antibodies 457.3 (<34)

    Thyroglobulin antibodies 266.3 (<115)

  • She needs immediate dose increase by 25mcg. Retesting in 6 weeks

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

    If you can't get full thyroid and vitamin testing from GP or want to recheck antibodies in 6 months when on better levels and gluten free

    thyroiduk.org.uk/tuk/testin...

    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 money off offers. DIY finger prick test or option to pay extra for private blood draw or

  • Vitamins posted somewhere on this thread I think. Thanks

You may also like...