Dose changes advice please

Hi new member here I would like to know why my dose keeps getting changed? I had my dose of thyroxine reduced from 175mcg thyroxine and 25mcg T3 to 150mcg thyroxine within 6-8 weeks but my GP reduced by 3 weeks when results were normal. I am now feeling really bad. Tests done fasting and early morning and leaving 24 hours between dose and blood draw. Endo has thyroid results from last week, below done by GP before that. Endo has said there would be no harm in me coming off T3 straight away even though been on it for 2 years. Am I being messed about or am I going mad?

AUG 2017 150mcg thyroxine

TSH 0.35 (0.2 - 4.2)

FREE T4 20.7 (12 - 22)

FREE T3 3.9 (3.9 - 6.8)

JUN 2017 175mcg thyroxine and 25mcg T3

TSH 0.02 (0.2 - 4.2)

FREE T4 22.8 (12 - 22)

FREE T3 4.8 (3.9 - 6.8)

TPO ANTIBODIES 291 (<34)

TG ANTIBODIES 256.3 (<115)

JAN 2017 150mcg thyroxine and 25mcg T3

TSH 1.60 (0.2 - 4.2)

FREE T4 16.2 (12 - 22)

FREE T3 4.6 (3.9 - 6.8)

NOV 2016 125mcg thyroxine and 25mcg T3

TSH 3.87 (0.2 - 4.2)

FREE T4 17.1 (12 - 22)

FREE T3 5.0 (3.9 - 6.8)

JUL 2016 100mcg thyroxine and 25mcg T3

TSH 2.63 (0.2 - 4.2)

FREE T4 18.3 (12 - 22)

FREE T3 4.8 (3.9 - 6.8)

JAN 2016 75mcg thyroxine and 25mcg T3

TSH 0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

FREE T3 5.3 (3.9 - 6.8)

AUG 2015 175mcg thyroxine

TSH 1.70 (0.2 - 4.2)

FREE T4 19.3 (12 - 22)

FREE T3 4.0 (3.9 - 6.8)

MAY 2015 150mcg thyroxine

TSH 5.65 (0.2 - 4.2)

FREE T4 25.3 (12 - 22)

FREE T3 5.2 (3.9 - 6.8)

MAR 2015 125mcg thyroxine

TSH 3.80 (0.2 - 4.2)

FREE T4 13.3 (12. - 22)

FREE T3 4.2 (3.9 - 6.8)

JAN 2015 100mcg thyroxine

TSH 6.10 (0.2 - 4.2)

FREE T4 15.1 (12 - 22)

FREE T3 4.0 (3.9 - 6.8)

Thanks

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  • Sasha18

    I had my dose of thyroxine reduced from 175mcg thyroxine and 25mcg T3 to 150mcg thyroxine within 6-8 weeks

    I understand that bit now I can see your results, but I'm still not understanding what this means:

    my GP reduced by 3 weeks when results were normal

    or where it relates to in your sets of results.

    Never mind, your results say it all.

    TPO ANTIBODIES 291 (<34)

    TG ANTIBODIES 256.3 (<115)

    This is your problem. 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.

    When taking Levo, an increase in dose should reduce our TSH and increase our FT4 and FT3. Looking at your results this isn't always happening and it will be the fluctuating antibodies causing 'strange' results.

    Your endo doesn't really understand Hashi's (they call it autoimmune thyroiditis) but the worst thing of all was to remove your T3. From your current results:

    TSH 0.35 (0.2 - 4.2)

    FREE T4 20.7 (12 - 22)

    FREE T3 3.9 (3.9 - 6.8)

    It is very clear that your conversion is very poor, you have a high in range FT4 with a bottom of range FT3, and you absolutely need your T3 back again and SlowDragon and shaws have information about what can be done when there is an established need for T3 and it is removed.

    So, as for your Hashi's, you need to learn as much as you can so you can help yourself.

    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_...

    And SlowDragon will come along with more information about how Hashi's affect the gut and absorption and what can be done to help that.

  • GP reduced when she saw

    AUG 2017 150mcg thyroxine

    TSH 0.35 (0.2 - 4.2)

    FREE T4 20.7 (12 - 22)

    FREE T3 3.9 (3.9 - 6.8)

  • Sasha - I can't say what I'm thinking, I would get banned, but what was the reason for reducing your dose with these results?

    TSH is in range.

    FT4 is in range.

    FT3 is at the very bottom of range.

    By reducing your Levo, your FT4 will reduce and what little conversion is taking place will mean that your dire FT3 will drop below range.

    You should show your GP the following information from thyroiduk.org.uk/tuk/about_... > Treatment Options:

    According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

    The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

    Also -

    Dr Toft states in Pulse Magazine, "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.

    Also, the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. Add T3 into the mix and you normally see a very low or suppressed TSH, FT4 can be low in range and FT3 should be near the top of it's range. As long as FT3 is in range you aren't overmedicated.

  • Thanks I don't know, I think the GP saw the TSH was at the bottom of the range and decided to reduce it.

  • The TSH is best for us when it should be 1 or below. Not 'somewhere' in the range. They all need a refresher course on dysfunctions of the thyroid gland and up-to-date knowledge. It's time they stopped listening to fairy tales but the patients.

  • Your GP knows nothing about Hashimoto's and should not be meddling with your dose

    TSH is largely irrelevant when on Levo and especially when taking T3

    Your endo didn't understand that either

    Your dire vitamins were stopping Thyroid hormones from working

    Vitamin levels crash right out when T3 taken away

    We are seeing many many turn up here the same as you after T3 has been stopped

    Endos that don't like or understand T3 don't have any idea how badly gut is affected when it's removed

    They just want it simple, it isn't

    It's complex disease and for many the addition of T3 essential

  • Yes they seem to do that!I am on t4 only.i felt ok when my THS suppressed and t4 t3 at top (but in range)they just keep reducing me as THS is low but now t4 and t3 also low.ths stays same!it's a battle!thinking of going it alone !and just buying what I need !

  • Sorry, just realised Slowdragon and Shaws gave the information on your other thread, sorry SlowDragon and shaws :)

  • Taking 800iu vitamin D and 5mg folic acid and 1 iron tablet per day as well

  • VITAMIN D 25.5 (25 - 50 VITAMIN D DEFICIENCY. SUPPLEMENTATION IS INDICATED)

    FERRITIN 61 (30 - 400)

    FOLATE 2.3 (2.1 - 19.5)

    VITAMIN B12 174 (180 - 900)

    RED BLOOD CELL COUNT 4.33 (3.80 - 5.80)

    WHITE CELL COUNT 6.12 (4.00 - 11.00)

    MCV 76.1 (80 - 98)

    MCHC 382 (310 - 350)

    HAEMATOCRIT 0.41 (0.37 - 0.47)

    MCH 28.1 (28 - 32)

    PLATELET COUNT 254 (150 - 400)

    HAEMOGLOBIN ESTIMATION 115 (115 - 150)

    NEUTROPHIL COUNT 0.02 (0.0 - 0.5)

    MONOCYTE COUNT 0.5 (0.0 - 0.8)

    LYMPHOCYTE COUNT 1.3 (0.5 - 2.0)

    EOSINOPHIL COUNT 0.2 (0.0 - 1.0)

    BASOPHIL COUNT 0.0 (0.0 - 0.5)

    IRON 8.2 (6.0 - 26.0)

    TRANSFERRIN SATURATION 15 (12 - 45)

    Taking 800iu vitamin D and 5mg folic acid once a day and ferrous fumarate once a day

  • VITAMIN D 25.5 (25 - 50 VITAMIN D DEFICIENCY. SUPPLEMENTATION IS INDICATED) 800iu vitamin D

    Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level. You are just 0.5 away from severe deficiency and you need loading doses. NICE treatment summary for Vit D deficiency:

    cks.nice.org.uk/vitamin-d-d... Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L. For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)." Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (not a paltry 800iu) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, may be less, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

    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 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.

    **

    FERRITIN 61 (30 - 400) 1 iron tablet per day

    For thyroid hormone to work 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...

    MCV 76.1 (80 - 98) MCHC 382 (310 - 350) HAEMOGLOBIN ESTIMATION 115 (115 - 150)

    These results suggest iron deficiency anaemia and your 1 x iron tablet daily is not the correct treatment. Please point this out to your GP and ask for the appropriate treatment - 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.

    Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

    **

    FOLATE 2.3 (2.1 - 19.5) VITAMIN B12 174 (180 - 900)

    You are folate deficient and B12 deficient. Have you been tested for Pernicious Anaemia?

  • Thanks no I haven't been tested for pernicious anaemia

  • If possible see a different GP

    Then ask for full testing for Pernicious Anaemia before starting supplementing B12 and Vitamin B complex

  • Oh FFS, it just gets worse :(

    FOLATE 2.3 (2.1 - 19.5) VITAMIN B12 174 (180 - 900) 5mg folic acid

    Were you checked for signs of B12 deficiency before you started the folic acid?

    Folic acid masks signs of B12 deficiency.

    Please check now b12deficiency.info/signs-an... then (AND PLEASE, THIS IS IMPORTANT), go and post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

    With a below range B12 I think you are going to need to be tested for Pernicious Anaemia and you may need B12 injections. You will need to stop folic acid before having any further investigations.

    Post your folate and B12 results, any signs of B12 deficiency you may now be (or previously have been) experiencing, quote your ferritin result and your iron deficiency information too.

    I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

    "In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

    And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

    "We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    If you want to know what ignoring low B12 can do, please see the first film in this link b12deficiency.info/films/ (you don't need to watch it all to get the idea).

    Then go and ask your GP why he ignored this result. He has been negligent.

  • Thanks no I haven't been checked for signs of B12 deficiency before starting the folic acid. The GP was intending to refer me to mental health services then my B12 came back below range. She told me it was only slightly under range, nothing to worry about. Then my folate came back under range and she held off mental health services but didn't put me on folic acid straight away saying that was only just below range. I insisted she give me something to treat it because this is not the first time my folate came back below range and she prescribed me folic acid.

  • my B12 came back below range. She told me it was only slightly under range, nothing to worry about.

    I really am struggling not to write any real profanities here, but FGS what is wrong with your doctor. I'd like to see her manage with a below range B12.

    Send her the link to that film!

    Change you GP and do it quick. This one wants to put a label on you, and once you have that label everything you see a doctor about in the future will most likely be put down to mental health issues of one sort or another.

    She has been so negligent - below range folate, below range B12, iron deficiency anaemia ignored, severe vit D deficiency not being given loading doses, what else has she done to you????

    Sort your treatment out with another doctor and then make an official complaint against this ignorant b**ch.

  • I have had very bad luck with GPs, I once had my ferritin checked and it was below range and complete blood count showed MCV below range and MCHC above range. I made a complaint to the GP surgery about why the ferritin level was ignored and the salaried GP wrote back to me saying "the only ferritin result which did not look good was at 27 but since your ferritin rose back into range at 48 no treatment was necessary."

  • She obviously needs to go back to med school

    Why does she think there are ranges?!!

    Unbelievable

    Avoid her in future if at all possible

    With Hashimoto's we usually need B12 at top of range and definitely above 500

  • Thanks I no longer go to that practice, I complained about her and she wrote back to me saying since my ferritin went back into range again during the follow up blood test no treatment was necessary. I also had a high TSH at the time, above range and again she said my symptoms were psychological and she sent me away with antidepressants. I only took one and that was it.

  • Don't let the B......s get you down.

    They know nothing about Hashimoto's

    Took me 20 years with Hashimoto's until I found this fantastic support group and realised importance of vitamins and gluten

    Had to fight the "mental health" tag too.

    Don't accept a negative coeliac test as proof you don't have gluten issues

    Only 5% are coeliac, over 80% gluten intolerant.

  • Have now posted on the pernicious anaemia forum.

  • no problems. The more the merrier :)

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