We're to go next ?

I have not been on for a while but have come to the end of the road after seeing the 3rd endo they have done all the tests the are prepared to do every one is comming back in range my throid antibodies are over 1300 my tsh is at 6.71 not sure about my t4 but they said I need an increase of meds from 100mg to125mg I feel so ill all the time my thyroid hurts I have gut problems massive headaches joint pain neausea lightheadedness very very tied unable to function most days I have high colesterol and been put on statins a am 53and also going through the change I have tried help from dr p with no luckjust felt worse what do I do now plessssse help

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  • I am so sorry for the hopeless way you are being treated but nobody can help much unless you can post recent blood tests for thyroid. You need to call your GP practice and ask for these and any other tests they have done, with all the reference ranges.

    There are so many possibilities of what is wrong. Maybe you are not converting T4 to T3. Maybe you are low in iron, ferritin, Vit D, B12 and Folate. These all need to be high in range. Have they ever been tested? Have you tried taking out Gluten completely from your diet? Many people go gluten free and find it makes a huge difference.

    Your TSH is high, so clearly something is wrong but the increase in Levo may make a difference to your symptoms, or you may need some T3 added to the Levo.

    Please post again when you have results and people can help.

  • In your shoes, I would come off the statins. They are notorious for giving people bad side effects. If this worries you then you should buy and read The Great Cholesterol Con by Dr Malcolm Kendrick. He also has a blog which is very informative, and is often entertaining as well. His main interest is in debunking the cholesterol/heart disease link.

    drmalcolmkendrick.org/

    If you ever manage to get your thyroid treated optimally your cholesterol will drop anyway. High cholesterol used to be diagnostic for hypothyroidism, but many doctors appear to have forgotten that.

    I would second what Hennerton says about getting some of your vitamin and mineral levels checked.

    Another book that I can thoroughly recommend is Dr Barry Durrant-Peatfield's book, Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it. I learned a lot from it and I still refer to it a lot.

    Since you have Hashimoto's you might benefit from reading this book by a fellow sufferer :

    Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause by Izabella Wentz

    Izabella Wentz also has a website : thyroidlifestyle.com/

    I know it is very, very hard to do when you feel so awful, but educating yourself about your condition is absolutely essential if you are to have any chance of helping yourself to get better. It is a sad fact of life that few of us can rely on the medical profession to help us when we don't fit neatly into the category of "take this levothyroxine every day for the rest of your life and you will be fine".

  • I was recently diagnosed with TPO antibodies after feeling very unwell and my TSH levels had been all over the place. I read several books and have decided to try Paleo diet, no gluten or dairy to reduce antibodies. I had been on wheat free diet due to food intolerance and decided to stick with GF bread and porridge until I had some other blood tests. GP arranged another TSH and antibody test. Haven't got the results, but when I phoned today the receptionist said my TPO had come down markedly! I will get a print out tomorrow. "food for thought!"

  • ...am afraid the Docs can only do so much - and as others have said it is all about learning as much as you can about making yourself well. After 40 years of Auto-immune illness I have learnt the most since being diagnosed with Hashimotos in 2005....and joining this forum. Make a small start and take baby steps to wellness. It does not happen overnight - it takes a long time for things to go wrong and just as long to correct....

    Blocking cholesterol with Statins is NOT a good idea. We need cholesterol and most of it is produced in the body for a reason. The brain needs it as do the Adrenals - and it will complicate the hormone picture. Also VitD will be low as cholesterol is a much needed precursor for the production in the skin. Low VitD has been found in many people with a wide range of chronic conditions...

    Hope you soon feel better...

  • When you are properly treated for your hypothyroidism your cholesterol should correct itself without you needing to take statins.

  • No wonder you are confused if they say your bloods are 'within range'. With a TSH of 6+ whilst on 100mcg is negligent to say the least as they haven't bothered that you are still very unwell.

    If you are have gut problems, the addition of more natural products to increase stomach acid would be beneficial.

    stopthethyroidmadness.com/s...

    If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft. Question 6 states that some need a suppressed TSH or the addition of T3 to a reduced T4.

    It could well be that levothyroxine just doesn't suit you. I also had severe pain on it as well as feeling constantly unwell. If you can afford a private consultation, email louise.warvill@thyroiduk.org for a list of sympathetic doctors who may prescribe an alternative to levo.

  • What is the alternative to levo?

  • There is liothyronine (T3) of which T4 (levo) should convert to enough for your needs. Both are synthetic. Many do well on T3 as it is the active hormone and goes directly into your cells unless you have some sort of resistance.

    There is also Natural Dessicated Thyroid Hormones and several brands. Few NHS doctors prescribe this. It is called natural as it is derived from pigs or cows thyroid glands and has been in use for over 100 years, bu the BTA make false statements about it. It is more synergistic with the human body and contains T4, T3, T2, T1 and calcitonin like human thyroid glands.

  • There are three thyroid medications :

    1) Levothyroxine, commonly referred to as levo or T4. This is artificial. As far as I know, the main purpose of this is to act as a storage hormone. It acts as a source for the production of T3 which is the active hormone that the body uses lots of. T3 is vital in maintaining the metabolism at a decent level. Some people feel ill on levothyroxine because their bodies are unable to convert the T4 to T3.

    2) Liothyronine, commonly referred to as T3. This is also artificial. This is the already converted hormone required to keep the metabolism going. It is much quicker in effect than T4. The NHS is charged a horrendous price for this, and is reluctant to prescribe it (to put it mildly).

    3) Natural dessicated thyroid, commonly referred to as NDT. This is usually sourced from pig thyroid, although sometimes it can be made from cow thyroid. This is about as "natural" as a medication can get without resorting to using humans (bad joke - sorry). It contains all of the hormones that are produced by the healthy human thyroid gland, not just one. Many people are only able to tolerate this, and don't feel well on any of the artificial options. Getting this out of the NHS is very hard indeed.

    Edit : I see shaws beat me to an answer, so you get two for the price of one.

  • Thank you Shaws and humanbean, very helpful.

  • firstly i know what i would do with the statins ........and that is throw them in the bin

    Have you got results for ferritin and folate because if your body cannot convert Thyroxine T4 into the T3 your cells are screaming for you will feel more ill by the day thanks to reverse T3 and a toxic state

    I would be minded to try NDT instead but not until you post

    ferritin

    folate

    b12

    resukts because they are critical

    Quite why 3 Endos are incapable of helping you really is beyond belief

  • My last endo tested urinarymetanephrines normal 5-hydroxy vitamin d ttg adjusted calcium cortisol egfr prolactin are all within range I have had folate and ferritin in the passed all have come back in range and magnesium are all alright so as you see I am at my wits end I am also battling menoupause and recently diagnosed with osteoarthritis in neck wrists fingers and thumbs everyday is horrendous I cry constantly what do I do if I try to see private doctors what happens with my gp I work fill time and have to force myself to get up everyday I look forward to sleep to get away from the pain and feeling unwell do I try the diet option I've seen dr p no change I cannot afford to pay much more I go back to the endo in July but expecta discharge then so please give my some hope I am frightened to come off statins as blood pressure 158/95.

  • You really need to get paper copies of all your blood tests, and it is vital you get the reference ranges too. When doctors say that things are "normal" they mean that results are within the reference range. But for many things there is an optimal range that is much narrower than the reference range. And where the optimal range is depends on what is being measured. Some things should be low in the reference range, some things are best in the middle of the reference range and some things should be in the top quarter or the top third of the reference range.

    If you already have your results perhaps you could post them in a new question, including the reference ranges, and people may be able to point you in the right direction to start you on the road to getting better.

  • If you want to read more about NDT in a way that we lay people can understand, may I recommend the Stop the Thyroid Madness website?

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