Thyroid UK
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400mg levothyroxine

Hi i have been a type 1 diabetic for 14 years I am currently 23 stone 6 and was 17 stone pre diagnosis, i have suffered for years with low thyroid etc etc, I am now 45 years old and the weight increase and aching body is really starting to affect me. I have changed doctors due to a house move and the new doctor stopped my liothyorine and upped me from 300mg to 400mg levothyroxine believing the . I also take Cymbalta 60mg for pain in my feet Do any of you know of a combination of other drugs or natural remedies that may help me, so sick of feeling like i have been run over every day. regards Steve

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Do you have the results of your blood tests? If so, can you post them on here, with the ranges?

This new doctor obviously knows little about thyroid. Increasing a dose of levo by 100 mcg is insane. It shouldn't be more than 25 mcg at a time.

To be taking 400 mcg and still feel hypo, either indicated an absorption problem, or a conversion problem. If it's a conversion problem, keep increasing the levo is likely to make you worse, rather than better. That is something that doctors just don't seem to be able to get their heads round! And that is why we need to see your results, to see what sort of a problem this is. :)

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I shall ask for a copy of my recent bloods from only 2 weeks a go and post the on here, thank you for your replies,

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You're welcome. :)

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My Blood Tests are as follows Serum T4 Level (XaERr) Rsult 13.6pmol/L [12.0-22.0] Serum TSH level (XaELV) Above range 16.00 miu/L [0.35-5.5] above high reference limit

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And that result was on 400 mcg levo? If so, you have an absorption problem. How do you take your levo?

Did your doctor increase your levo by 100 mcg all in one go? That might be making you feel a bit rough, too. Increases and decreases should be only 25 mcg at a time.

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Hi, that was on a 300mg dose and i have felt rough for as long as i can remember, up until i found you guys i used to take in the morning as i was never told not to. I have since learned my other meds may take the edge off , so for 3 days now i am taking them at night alone around 10.00pm 4 hours from my evening meal and 8 from breakfast

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Oh, it was more than take the edge off! You were hardly absorbing anything to have levels like that on 300 mcg.

So, now you need to wait six weeks and get retested, because things will probably change - I hope they will, anyway! Then, you need to get your FT4 and FT3 tested together, to see how well you are converting. :)

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Ok thank you, so would you recommend i carry on with my t3 liothyorine? i have lots at home

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Not right now, no. Because your T4 is probably going to turn out high, so you're going to need to sort that out, first. And, at the moment, you have no idea how much of it is being converted into T3, so you could over-dose. Give it six weeks and then see where you stand.

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ok thank you

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You're welcome. :)

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For information on eating well with diabetes of any kind, this website is brilliant :

diabetes.co.uk/

It has half a million members and is patient-run. It also has a forum :

diabetes.co.uk/forum/

And a low carb program with lots of information and loads of free cookbooks :

diabetes.co.uk/lowcarb/

All the above links and info is free, there is no membership fee.

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The pain in your feet, particularly if it is concentrated in your heels, might be plantar fasciitis. It is a common symptom of hypothyroidism which is untreated or under-treated or wrongly treated. If you got your dose of thyroid meds right for you then the plantar fasciitis might disappear (mine did).

I realise of course that foot problems are common with diabetes, so I hope your doctor and/or diabetic nurse are keeping a close eye on your foot health.

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With regard to your hypothyroidism, taking you off your T3 was cruel, but not uncommon in the UK these days. It is a hugely expensive medication and doctors are making up excuses about why they can't prescribe it when the truth is they simply want to save money.

It is possible (but getting harder and harder) to buy T3 on the web. But most of the sites selling it are body building sites and they are unreliable, and also hugely expensive. You need to post a new question on here asking for sources for T3 to be given to you by private message. Explain why you need it - members are paranoid (with good reason) about losing access to the few reliable suppliers of T3 that are left. I think one of the few places you can buy it now is in Mexico. Also Turkey might be possible.

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Another problem keeping you ill is likely to be nutrient deficiencies. People who are hypothyroid have lots of gut problems as part of the condition, and extracting nutrients from food can be very difficult, so many of us supplement. But supplementing blindly or with multivitamins is pointless. You need to know what you are deficient in and how deficient you are in order to determine the best dose of supplement(s) you need.

To start with, ask your doctor for tests of ferritin, vitamin B12, vitamin D, and folate. Also ask for a full iron panel. It is not uncommon for members to be severely deficient in all of these nutrients.

Make sure to always ask for copies of any blood test results (of any kind), including the reference ranges. It is also possible that your surgery may allow access online to the coded information in your medical record. Some surgeries do, many don't (yet) but they will all have to allow this eventually. Ask if you can get access, and take proof of identity with you when you ask.

Once you have copies of recent blood tests create a new post and post your results and reference ranges for thyroid, nutrients, iron panel and full blood count (if you have them), and then ask for feedback and advice.

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Thank you for the info, I shall get what I can from the doctor and post on here

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My Blood Tests are as follows Serum T4 Level (XaERr) Rsult 13.6pmol/L [12.0-22.0] Serum TSH level (XaELV) Above range 16.00 miu/L [0.35-5.5] above high reference limit

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Good grief, no wonder you feel so ill. TSH needs to be about 1 or below to have a chance of feeling well. I would guess that your conversion from T4 to T3 is very poor.

With results like that, despite taking 400mcg T4 a day, you really, really need to experiment to find out if diet changes improve your absorption.

As has been mentioned to you already in this post, giving up gluten is essential for all of us. There are a very few people who get no benefit, but the majority of us do.

I was given the full works in terms of testing for celiac disease - blood test, endoscopy, gut biopsies, and was told that I didn't have it. I kept on eating gluten for 5 years after that, with my health continuing to deteriorate. When I did finally give up gluten, reluctantly and in desperation, I got benefits within a week.

People often say that anyone with positive thyroid antibodies should give up gluten. I don't even have positive antibodies, and yet I still benefited.

Other comments about diet :

1) Eating low calorie to lose weight impairs T4 to T3 conversion. While you don't have enough T3 don't try to lose weight. If you don't eat enough, your T3 drops, your metabolism slows, and you'll actually put weight on. Worry about your weight when you have enough T3 and you are optimally medicated.

2) Don't try to do masses of hard exercise. Go for a gentle walk, or go swimming. Maybe you could try yoga classes. Hard exercise uses up precious T3. You won't have enough, so keep your T3 for normal daily life, not for pumping iron.

3) You need to find another source of T3 as soon as possible!

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Thank you very much for the reply, so putting gluten aside what should I be doing re my meds? I have already started taking them at night as opposed to the morning with my other meds, I have read this will help absorption , how do i get my reading near 1? and not 16

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Well, no doubt your doctor will suggest increasing and increasing the dose of T4, but unless you can improve your absorption then it might not achieve much.

I would suggest you try NDT (Natural Dessicated Thyroid) if you haven't done so already. It is made out of (usually) pig thyroid but could be cow thyroid. It is the treatment that was used for treating hypothyroidism before the synthetic Levothyroxine was created, and many, many patients preferred it and hated the change to the synthetic.

Doctors tell their patients that hypothyroidism is a simple disease to diagnose and a simple disease to treat. If you've been told that, your doctor was lying to you (although - to give the benefit of the doubt - possibly didn't realise he was). Most hypothyroidism in the US and Europe is autoimmune in origin. So, assuming you have autoimmune hypothyroidism, then in the beginning your thyroid was healthy, but your immune system went bananas and started destroying your thyroid.

If you want to get well you can't just treat your thyroid. You have to calm the immune system down. You also have to try and stop the damage increasing in your thyroid. You have to repair the damage in your gut and other sites where inflammation has set up home and is causing lots of symptoms. You have to supplement nutrients that are low, because your gut hasn't been able to absorb them.

The cheapest NDT available is from Thailand. Lots of people on this forum do well on Thai NDT.

The products you are looking for are Thiroyd (weird spelling is deliberate), Thyroid-S, and T.R. Man or just T.R.

There are other more expensive forms of NDT. If you need the names and the info you'll have to ask about them in another post.

Summary :

1) Find out your levels of nutrients. The main ones (to start with) are vitamin B12, folate, ferritin, vitamin D. Your doctor may do them for you, but if he won't then ask about how to get them tested privately.

2) Knowing your Free T3 is helpful too.

3) Give up gluten, religiously. Change your diet to a lower carb and higher fat one. The link I gave you to the diabetes website low carb program is ideal I think, but check with the people who are diabetic

diabetes.co.uk/lowcarb/

4) If giving up gluten doesn't help at all (it does happen to some people, but most of us benefit), then you can start eating it again. You may find that giving up animal milk products helps you. Some unfortunate people have to do both.

5) Get some NDT.

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Thank you so much for taking the time to help me, I shall start putting this into place now, finally should I start taking my t3 liothyorine again as I have plenty

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It would be better to know how good or bad your T3 level is before starting to take it again.

And the other point is - if you can no longer get it prescribed what will you do when it runs out? It's very hard to find online these days.

Since your TSH is so high and you feel awful, you could start the T3 again while you try and get some NDT (but be aware that NDT doesn't suit everyone).

The best tests for keeping tabs on nutrients and thyroid are these ones :

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

If you want to ask about testing and how its done, ask in a new post.

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I shall force my gp to prescribe it again, but i have ordered some NDT and shall give that go, thanks again for your help

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As you are type one diabetic, which is autoimmune probably your thyroid is also autoimmune (Hashimoto's)

Have you got recent blood test results, plus do you know if Thyroid antibodies ever tested?

What about tests of vitamin D, folate, ferritin and B12. If you have them, post them here. Extremely common for these to be too low & then Thyroid hormones can not work.

That is extremely high dose....suggests gut issues and poor absorption

It's suggested all autoimmune patients may do better on gluten free diet, but certainly many/most Hashimoto's patients find gluten free diet really reduces symptoms

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

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I paid for my whole family to have a range of tests to see if we are intolerant to a range of foods and drinks etc and my wife was gluten intolerant , but i was only yeast intolerant , I use to take vit d and folic acid but didn't seem to make the sightless bit of difference to me , i juts take a generic multi vitamin now .

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Anyone with Hashimoto's needs to try gluten free - it's more to do with leaky gut (holes in gut lining) that allows gluten to incorrectly cross into blood, causing raised Thyroid antibodies

Generic multivitamin is normally not good idea, with Hashimoto's absolutely should not take any iodine (often in multi)

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My Blood Tests are as follows Serum T4 Level (XaERr) Rsult 13.6pmol/L [12.0-22.0] Serum TSH level (XaELV) Above range 16.00 miu/L [0.35-5.5] above high reference limit

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What dose of liothyronin were you on? It sounds as if you are another victim of cost cutting by GP who has no knowledge of thyroid treatment!

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40mg a day

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My Blood Tests are as follows Serum T4 Level (XaERr) Rsult 13.6pmol/L [12.0-22.0] Serum TSH level (XaELV) Above range 16.00 miu/L [0.35-5.5] above high reference limit

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I had to get private tests done, started supplements for everything I was low on(most!), extreme fatigue so cortisol test-very low, more supplements, researched everything and realised T3 was answer for me,read of others experience on here and went for it. Was on 200mcg levo and went to 75mcg T3, I feel really good for the first time in years! I have just increased my dose by 37.5mcg, I am monitoring my heart rate and temperature. I can't do blood pressure because it won't fit-I'm over 25stone. I am going on how I feel, I know many will be horrified but it works for me-everybody is different! I know somebody who swapped straight to NDT and they are doing really well! You are the only one who knows how your body works and what will suit you and your situation, do some reading and go for it! I hope you will feel as well as I do, best of luck!

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