Worried

Hi

I've really benefited from all the excellent advice here and I have read some very informative posts along this same issue so really just posting because I am worried about my thyroxine being reduced.

Background to this is I have now been on 100mg of levothyroxine for just over 2 months (after starting on 25mg in June, increased to 50mg in July and then to 100mg at the end of July). I am now starting to feel a lot better.

I received a phone call from my GP surgery this morning to tell me that my last blood test result (taken last week) had come back and because my TSH had dropped from 6.6 (22/06/17) to 0.5 my GP wanted to see me again. I am now worried they want to reduce my medication. I have told my surgery that I don't want to make an appointment with the GP as I will have to see a GP in just under 2 months anyway when my prescription runs out and I have a consultant appointment before then.

I am going to the surgery tomorrow morning to ask for a print out of my lab results as I want to know what my FT4 is too and also want a copy to take to the consultant endocrinologist in mid November. I know the consultant I have been referred to specialises in diabetes as I checked when I received my appointment letter. So now I think I will have to convince this consultant to notify my GP not to reduce my medication. I have a copy of the BMA booklet 'Understanding thyroid disorders' by Toft so I will take that to the consultation to back up my argument for not having my medication reduced.

I know I am anticipating that it is my GPs attention to try and reduce my medication but I am very worried that the GP is going to try and reduce my medication because of the drop in my TSH level from 6.6 to 0.5. I am not looking forward to this conversation with my GP as I suffer from 'white coat syndrome' and find it hard to be assertive when I already feel very nervous. I am really worrying about my medication being reduced and starting to feel ill again.

I have previously posted my results on here but not sure if I have mentioned that I requested antibody testing

My result from that was TPO 768iu/mL positive>100 20/07/17.

6 Replies

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  • Lje05 Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's 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_...

    Low nutrient levels often go hand in hand with Hashi's so it would be a good idea to have vitamins and minerals tested and supplement any deficiencies or low levels. Thyroid hormone can't work unless nutrient levels are optimal (not just in range).

    Vit D

    B12

    Folate

    Ferritin

    **

    Can you take someone with your to your GP appointment. I know it's hard to be assertive. If you have someone who can back you up, or maybe speak on your behalf if you get into difficulty, it can help. Also, when there is a 'witness' doctors tend to be a bit more careful about how they talk to you.

    **

    By the way, your increases in Levo have gone too fast. It was OK to increase from 25 to 50mcg after a month, but your dose should never have been doubled from 50 to 100mcg. Dose changes should always be done in 25mcg increments, you have to take it slowly with hormones.You should have been prescribed 75mcg and left on that dose for 6-8 weeks before checking your levels again and if necessary another increase of 25mcg.

    You definitely need to know your FT4 and FT3. If your GP is only going by TSH and yours is 0.5 - it probably is in range (always quote ranges when giving results as they vary from lab to lab) so you shouldn't have your dose reduced. But even if it was below range, the FT3 will tell you if you are overmedicated.

    **

    When you see the endocrinologist - and the fact that he is a diabetes specialist puts you on the back foot straight away, he wont know much, if anything, about treating hypothyroidism - as well as Dr Toft's book you could also take his article published in Pulse Online magazine (the doctors' magazine) which says

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

  • Hi. Thank you for the excellent advice. I have used a lot of advice from your posts to other members.

    I know from all the information I've read on here that I have hasimoto's (not explained to me by my GP of course!). I was increased from 50 to 100 by my GP when the results of my TPO test came back. I was aware that increase should be in 25mg increases and did mention that to my GP at the time.

    TI have only had TSH and FT4 tested, plus TPO at my request. in the new year I attend to use Blue Horizons or Medi Check for a more comprehensive thyroid check so I can see what my FT3 level is.

    I have gone gluten free to see if that helps and I am taking selenium l-selenomethionine 200mcg daily.

    I did request nutrient testing and my GP requested B12 and Vitamin D.

    My B12 was in the bottom quarter of the reference range (295 ng/L : range 189-883).

    I am supplementing with B!2 as well as a basic B complex. The lab declined to do a a vit D test so I did one privately and that was 91.2nmol/L 9 (>50 adequate).

    I will post my latest bloods and reference range later when I have collected them from the surgery.

    I was thinking about taking someone to see the consultant with me but not easy to find the best person to take who is also available to go but I'll have a think about that one.

    I have a copy of the Pulse article so I'll take that with me as well.

  • So your antibodies are high this confirms it 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.

    Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are. Always get actual results and ranges on all blood tests

    With Hashimoto's it is very likely hidden food intolerances can be causing issues, most common by far is gluten.

    Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

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

    chriskresser.com/why-changi...

    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

    drbradshook.com/understandi...

    If you can't get FT3, antibodies and vitamin testing from GP - essential to know these before Endo appointment if you are to argue your corner

    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

  • Thank you. I am already supplementing (see reply to SeasideSusie)

    I use probiotics , apple cider vinegar and bone broth plus fermented foods as I did have gut problems. I am no longer experiencing the digestive problems that I was earlier this year. Also have gone gluten free.

    I attend to do a Medichecks or Blue Horizon test. I hadn't thought of doing one before the consultant appointment. Unfortunately I have had an expensive few months so was going to wait until the new year before doing it but perhaps I should do it anyway and get the results before my endo appointment. I'll check on Thursday to see if there is a deal on!

    And yes I have followed advice on doing thyroid test as early as I can get an appointment, fasted and waited until after the draw to take my levo.

    I haven't watched the film about why testing TSH is inadequate so I will have a look at that.

  • Lje05,

    TSH 0.5 is still within range so there is no need to reduce your dose. If you are under the care of a consultant your GP shouldn't interfere with the consultant's treatment plan.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

    Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

  • Thank you. I am seeing a consultant in November so I am hoping the consultant will listen to me, agree that I don't need a dose reduction and inform my GP. Perhaps I am worrying unnecessarily but seeing how many people posting here have been treated by GPs and consultants I am concerned that my dose will be decreased and I will start to feel ill again.

    I have a copy of the Pulse article and will take it with me when I go to see the consultant

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