Endo won't increase

Says I am on enough

TSH 8.1 (0.2 - 4.2)

FREE T4 11.9 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

Diagnosed 2011 and taking 50mcg levo thankyou

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33 Replies

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  • This is why I do not recommend that hypos consult endos! They don't have the first idea what they're doing.

    When you are on thyroid hormone replacement, your TSH should be one or under. Your TSH is, therefore, much too high. And, if an endo doesn't know that, well, there's not much hope for any of us! You need an increase. I would suggest you go back to your GP and explain the situation, and hope that he knows better than the endo - couldn't know much less! If not, ask for a second opinion.

  • Thankyou the endo said he is worried about symptoms of overmedication that I have like tremor weight loss and sweating

  • Silly man! How can you be over-medicated when your FT4 is under-range. If you were on too much levo, it would be over the top of the range.

    There could be other reasons for your symptoms. High/low cortisol; deficient nutrients; high antibodies... Actually, they could all be hypo symptoms. He just has no idea. He should at least try you on a higher dose, see how you get on.

    But, ask him to do more tests :

    TPO antibodies

    vit D

    vit B12

    folate

    ferritin

    9 o'clock cortisol.

    You know, all the things he should have thought of for himself!

  • Thankyou I have antibodies and they are thyroid peroxidase antibodies 304.3 (<34) and thyroglobulin antibodies >1300 (<115)

  • OK, so you have Hashi's. In which case, you need your TSH suppressed.

    Are you on a 100% gluten-free diet? Do you take selenium?

  • Thankyou no because I am trying to gain weight on gluten, doctor says this is what I should be doing and I don't take selenium. Will post other results in a few mins

  • No, that's not right. Gluten won't especially make you gain weight. Probably optimising your thyroid hormones will optimise your weight. But, if you have leaky gut, etc, you won't be able to optimise your thyroid hormones. First, heal thy gut!

  • Having gut issues like i did can cause high Rt3....conversion issues.

  • More likely the gut issues caused the conversion issues - although I've never heard of such a thing - and the conversion issues caused the high rT3. But the OP doesn't have enough T4 to convert, that's the problem.

    I think here it would be a case of gut issues causing absorption issues, which is a totally different thing.

  • Then most likely a cortisol or iron problem too.

  • She's only taking 50 mcg levo, she needs an increase in dose!

  • I suggest you read Stop the thyroid madness.

  • I suggest you stop telling your grandmother how to suck eggs, and actually read the POs post and her responses.

  • Mariep6 Doctors generally know nothing about Hashi's. Read and learn so you can help yourself, because your endo clearly isn't going to.

    You have autoimmune thyroiditis aka Hashimoto's disease which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

    You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

    Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

    Gluten/thyroid connection: chriskresser.com/the-gluten...

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

    You're not going to gain wait on gluten, it's most likely going to cause you a lot of gut/absorption problems.

    Hashi's and gut/absorption problems tend to go hand in hand and very often dire nutrient levels are the result. Have you had the following tested - if so please post the results with reference ranges, say if you are supplementing, with what and the dose

    Vit D

    B12

    Folate

    Ferritin

  • Thankyou I have had these tested and I supplement but levels haven't improved

  • So what are the results? What are you supplementing and the dose? How long have you been supplementing for?

    If your levels haven't improved you could have an absorption problem. Do you have low stomach acid - check with an easy home baking soda test scdlifestyle.com/2012/03/3-...

    Hashi's and gut/absorption problems go hand in hand and generally trash nutrient levels and they wont improve until the gut problem is dealt with. SlowDragon has information and links to help with that.

  • 1x iron tablet for iron deficiency since Feb 2017, iron infusion done May 2016 and monitored every 3 months (result taken October 2017)

    FERRITIN 44 (30 - 400)

    MCV 78.1 (80 - 100)

    MCH 28.2 (28 - 32)

    MCHC 372 (310 - 350)

    IRON 9.3 (6.0 - 26.0)

    TRANSFERRIN SATURATION 15 (12 - 45)

    5mg folic acid for folate anaemia once a week since November 2016 (result taken October 2016)

    FOLATE 2.2 (2.5 - 19.5)

    B12 injection given once every 3 months for low B12, first injection done July 2017 (result taken before injections started)

    VITAMIN B12 335 (190 - 900)

    Vitamin D 800iu prescribed since 2013 (result taken June 2017 and follow up due December 2017)

    TOTAL 25 OH VITAMIN D 36.6 (25 - 50 vitamin D deficiency. Supplementation is indicated)

    Thanks

  • Mariep6

    1x iron tablet for iron deficiency since Feb 2017

    FERRITIN 44 (30 - 400)

    For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

    If you are under haematology then some haematologists will give another infusion if ferritin level drops below 50.

    MCV 78.1 (80 - 100)

    MCH 28.2 (28 - 32)

    MCHC 372 (310 - 350)

    Your results still show iron deficiency and you are on the wrong treatment - iron deficiency anaemia requires 2 or 3 x ferrous fumarate daily - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

    cks.nice.org.uk/anaemia-iro...

    How should I treat iron deficiency anaemia?

    •Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

    Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

    ◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

    ◦Do not wait for investigations to be carried out before prescribing iron supplements.

    •If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

    • Monitor the person to ensure that there is an adequate response to iron treatment.

    Considering you're being monitored every 3 months what has been said about the fact that your results still show below range MCV/over range MCHC? There is no excuse for you not having the correct treatment.

    **

    5mg folic acid for folate anaemia once a week since November 2016 (result taken October 2016)

    FOLATE 2.2 (2.5 - 19.5)

    It's difficult to say anything without an up to date result so the October 2016 are irrelevant now, you really should be retested (or is October 2016 a typo and you mean 2017?). But why is your folic acid just once a week? It's normal for folic acid to be taken daily and it should rise within a reasonable time.

    B12 injection given once every 3 months for low B12, first injection done July 2017 (result taken before injections started)

    VITAMIN B12 335 (190 - 900)

    You were very lucky to have injections with a level of 335. Did you have signs of B12 deficiency?

    Is your level being monitored?

    The Pernicious Anaemia Society forum is the best place for advice, and if you find yourself 'flagging' between injections they can advise what you could do to help yourself.

    **

    Vitamin D 800iu prescribed since 2013 (result taken June 2017 and follow up due December 2017)

    TOTAL 25 OH VITAMIN D 36.6 (25 - 50 vitamin D deficiency. Supplementation is indicated)

    I think a very important question you should be asking your GP is:

    "Considering I have been taking D3 for 4 years, why am I still very low in the deficiency category?"

    I brought my level up from severely deficient at 15 to the level recommended by the Vit D Council - which is 100-150nmol/L - in 2.5 months

    What was your level back in 2013 when you were prescribed 800iu D3? If it was less than 30 you should have been given loading doses according to the NICE Clinical Knowledge Summary

    cks.nice.org.uk/vitamin-d-d...

    800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

    My maintenance dose is 2000iu daily all year round.

    What you actually need, and what your GP can't prescribe, is very much more than 800iu. If you want to help yourself to get your level up then you are going to need a minimum of 5000iu daily for 3 months then retest. With your current level of 36.6 I would have suggested 10,000iu daily for 4 weeks then reduce to 5000iu daily. Your GP wont agree because they're not taught nutrition, they just follow guidelines which give inadequate treatment once loading doses have been completed.

    As you have Hashi's the best way for D3 to be absorbed is with an oral spray (eg Better You) as it bypasses the stomach.

    There are important cofactors needed when taking D3

    vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

    Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

    naturalnews.com/046401_magn...

    Check out the other cofactors too.

    And again, your GP will know nothing about these.

  • Thankyou no longer with haematology I've been discharged. Nothing been said about the MCV or MCHC. Sorry yes it is October 2017 for folate and haematologist recommended I take folic acid once a month. I had signs of B12 deficiency at the time and level not being monitored and my level for vit D was 41.5 in 2013

  • Marie - OK, so currently you have

    FOLATE 2.2 (2.5 - 19.5)

    and I've never heard of folic acid being recommended just once a month, as I said it's normally daily. Look at BMJ Best Practice guidelines for folate deficiency: bestpractice.bmj.com/best-p... and check the 2nd patient group down "at risk of folate deficiency: chronic haemolytic states, malabsorption disorders"

    click on "oral folic acid supplementation + tx of underlying disorder"

    and from the drop down menu you will see under Primary Options:

    folic acid: 1 mg orally once daily

    I have seen it mentioned on here that members have been given 5mg daily. But whatever it is, I think you need to be discussing this with your doctor along with getting the appropriate treatment for your iron deficiency anaemia.

    **

    As your original Vit D level was 41.5 then you didn't qualify for loading doses and your GP could only prescribe 800iu but you can see that it's not helped at all and your level is less now after 4 years of supplementing. Personally I would just buy your own D3 at the doses mentioned above, get the cofactors as well, and treat yourself because you wont get any more from your GP as he's not allowed to prescribe more than 800iu for your level.

  • You're very hypo. Your FT4 should be mid-range and your FT3 should be at the top of the range of even just over. Endo's know nothing!!!! The TSH is a not a thyroid hormone as it comes from the pituitary gland.

  • Also ask for a Reverse T3 test to be done.

  • Totally unnecessary. Her rT3 isn't likely to be high with that low FT4 unless she's got a bug, or something. In which case, what is an endo supposed to do about it? He probably wouldn't know what it is, anyway.

  • Do you have other thyroid results, were these numbers a one-off? It could be that your hormone levels are jumping around.

  • Last time (150mcg levo) in June 2017

    TSH 7.2 (0.2 - 4.2)

    Free T4 13.3 (12 - 22)

    Free T3 2.1 (3.1 - 6.8)

    Time before that (200mcg levo) Jan 2017

    TSH 10.3 (0.2 - 4.2)

    Free T4 12.9 (12 - 22)

    Free T3 1.8 (3.1 - 6.8)

  • We don't think we can have any more surprises and then a post like yours appears.

    Your Endocrinologists obviously thinks that if your TSH is below 10, you are on sufficient levothyroxine.

    No, you are not on sufficient thyroid hormones, your TSH is not 1 or below. 50mcg is a starting dose and should be increased by 25mcg every six weeks with a blood test.

    You can realise why we, on this forum, have had to make ourselves knowledgeable and we all inform one another if something new comes up. For instance Research has shown that many do well on levothyroxine but those that don't, benefit with a combination dose i.e. T4/T3. Unfortunately a couple of months ago they withdrew T3 due to the exhorbitant cost by the Pharma company. So people source their own.

    Your FT4 and FT3 should be towards the upper part of the range but FT4 is below, so obviously you aren't on sufficient levo to even raise the FT4.

    Ask GP to test B12, Vit D, iron, ferritin and folate as deficiences can also cause symptoms.

    Request an increase of 25mcg from GP.

  • Thankyou I have results of these but levels have either not improved or have improved only slightly

  • It looks as if you cannot convert T4 (levothyroxine) into T3 (liothyronine) so you may need T3 only.

    naturalendocrinesolutions.c...

  • Your high antibody levels show you have autoimmune hypotyrodism, in these cases the hormone output declines but can jump around. Weight loss sweating (or rather feeling both hot and cold) can occur in hypothyroidism. It does look like you are undermedicated and your doctor should really increase your levothyroxine. Make sure you do not have coffee around the time you take your tablet and it is bettter to take it on an empty stomach and away from other medications. You can take it at bedtime if that is easier.

  • Thankyou I don't drink coffee usually but I drink tea 3 hours after taking tablets and I take it on an empty stomach away from other medications

  • Your conversion rate is terrible, looking at the results when you were on 200mgs

    It is extraordinary how a supposedly well trained endo when faced with a thin patient with Hashimoto's, immediately thinks they can't be hypo!

    There are lots with Hashimoto's who are skinny and struggle to gain weight BECAUSE gut is so badly affected.

    Have you had endoscopy to rule out coeliac? If not ask your GP to arrange ASAP, also to check for gut infections like H Pylori

    hypothyroidmom.com/hashimot...

    Your vitamin levels are dire meaning you can't use your thyroid hormones. You feel a mix of hyper and hypo.

    SeasideSusie will give detailed vitamin advice.

    We see 100's on here where GP just dishes out 800iu vitamin D. It is never anywhere near enough to improve levels, because you have Hashimoto's and gut not absorbing

    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.

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

    According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% 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 and slowly lower antibodies and most importantly help heal gut

    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...

    Great film definitely shows why just testing TSH is inadequate and why it's so complex

    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.

    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

    You need a new endo, one who will consider adding T3

    Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

    Last thing your T3 level so poor

    Consider testing for DIO2 gene variation

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

  • Thankyou I haven't yet had endoscopy or blood test for coeliac

  • Hi Marie, just read your posts with alarm - TSH left at 8.1 and eating extra gluten - this is utter madness! Suggest you read up on it all so you're informed and find a doc who knows what he's doing. I've found the website STTM (Stop the Thyroid Madness) and everything by Izabella Wentz (see the articles on her website) to be very helpful. I have a doc who keeps my TSH under 2.5 with a natural hormone and am on the AIP diet which have both made a huge difference. Good luck - no need to put up with completely wrong treatment.

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