Don't no where to turn

Hi just wondering if anyone has any advice I was diagnosed with under active thyroid 5 years ago after birth if my 2 nd child prior to this I was always such a happy go lucky person now five years later I am at my wits end with mood swings depression hair loss fatigue and anxiety it is affecting every area of my life i have never felt myself since starting levothyroxine my bloods never stabbalise I have read about the t3 but my dr said they do nit do it in my area any advice would be great

13 Replies

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  • Laurajake123,

    If you post your recent thyroid results and ranges members will advise whether you are optimally dosed or whether you need a dose increase. If you have any results for ferritin, vitamin D, B12 and folate post them too.

  • Thanks for replying I only my recent tsh was 4.6 so my doctor has increased me from 125 to 150 my vit d was fine he said and that's all that has been checked don't have result and my doctor only checks t4 and tsh my t3 never been checked every time I get my bloods done I'm either slightly over or slightly under it's as if my doctors Don't seem to be taking all my symptoms seriously they just say it's all trial and error getting my dose correct but I just feel like how long can I go in feeling like this the anxiety is the worst feel like I'm going crazy sorry for the long reply just new to the site

  • Laurajake123,

    "VitD is fine" is just an opinion so get into the habit of finding out exactly what your blood test results and ranges are.

    TSH 4.6 means your FT4 will be low and is why your dose has been increased to 150mcg. FT3 is rarely tested in primary care. Once your TSH is between 0.4 - 1.0 you might want to order a private thyroid test via thyroiduk.org.uk/tuk/testin... to check your FT3 level.

    You should have a follow up test 6-8 weeks after increasing dose to 150mcg in case dose needs further adjustment. Arrange the blood test early in the morning when TSH is highest, and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after the blood test.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 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_...

    If you're still feeling unwell in 6 weeks it may be worth asking your GP to check ferritin, B12 and folate which are commonly low in hypothyroid patients and cause symptoms similar to hypothyroid symptoms.

  • If your doctor is just dosing by the TSH, you will never get your dose right. He should be more interested in the FT4. Once you are on thyroid hormone replacement, the TSH is irrelevant, and it doesn't matter how low it goes. But, if your doctor reduces your dose every time it goes below range, you will spend the rest of your life increasing and decreasing your dose, without ever feeling well.

  • Ask your GP for another blood test and say you've had advice from the NHS Choices for information and advice.

    Blood tests for thyroid hormones have to be a the very earliest possible, fasting (you can drink water) and allow a gap of 24hours between last dose of levo and test and take afterwards. If you don't follow this procedure your results will be skewed.

    Tick of your nical symptoms - we should have none when on an optimum dose and not necessarily with levothyroxine.

    GP should also test B12, Vit D, iron, ferritin and folate

    From now on always request a print-out of the results with the ranges. We are entitled by Law to have them.

  • go on medichecks.com and order a T3 test, unfortunately GPs can be quite unhelpful when it's about the thyroid.

  • That's great thanks wasn't aware of b12 or follate until reading these posts I really feel I have been fobbed off for to long by doctors I have an appointment Monday at doctors where I am going to see if I can have a referral to specialist as the doctor did admit last time when I asked about the t3 test and I mention about me having ibs that I may not be absorbing treatment and if there an alternative treatment that he wasn't to sure so really hope I get to see an endro if not I will def get private t3 test x

  • Personally, I would not recommend going to see just any old endo. Most of them are diabetes specialists, and know little about thyroid. You would be better off getting the list of recommended endos from Louise. Just email her at :

    louise.roberts@thyroiduk.org.uk

    Otherwise, you risk ending up worse off than you are now. There are no - or very few - actual thyroid specialists.

  • GPs know little about the thyroid and nutrition in general, so while you as a patient think you are being fobbed off you are suffering the effects of their lack of knowledge.

    As a person it is your duty to find out as much as you can about any conditions you have as it is your health not any doctors you see.

  • Is your IBS really due to low stomach acid? Low acid is very common in hypo as everything slows down and low acid is more common than high but doctors are apt to take symptoms as being due to high acid rather than low acid and will provide antacids when we, the patients need acid in order to dissolve food intomach particularly protein.

    scdlifestyle.com/2012/06/hy...

  • Thanks for replys I will ask my doctor for those bloods test Monday just want to feel like myself again which I have not for five years I am just gradually feeling worse not sure about acid with my ibs there just certain foods that I can't eat was thinking of buying multivitamin but so scared it makes me worse think I will wait to see what dr says Monday

  • Wait till you get your results. He should test TSH, T4, Free T4, Free T3 and thyroid antibodies. Those he or lab wont do (they believe TSH and T4 is sufficient) you can get them privately from one of our recommended labs.

    There is no point supplementing until we know we have a deficiency.

  • Sounds like you have autoimmune thyroid disease also called Hashimoto's. Has your thyroid antibodies ever been tested. Ask the GP if you are not sure. If the test is above range ever, then this confirms as 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. Important to test these. 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.

    As you have Hashimoto's then hidden food intolerances may 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/the-gluten...

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

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