Hi everyone, first time on so excuse any errors. I've suffered with under active thyroid now for about six years.
Started with just Levothyroxine sodium up to 175mg per day, which didn't work due to a build up of anti bodies. I was sent to a specialist and he prescribed me 20mg liothyronine and reduced the Levothyroxine to 125mg.
Now finally after years of putting weight on started to loose. Although am now on 10mg Amlodipine also now. Due to blood pressure!!
First question as I've never suffered with blood pressure before, not even during pregnancy. Can this medication affect blood pressure? Read a couple of articles about it may enlarge heart and am a bit concerned.
Second is that Liothyronine is now blacklisted and no doubt my antibodies will be building up and I'll be putting weight back on due to the Levothyroxine not working.
So are there any food substitutes that can help. I've read to avoid broccoli, cauliflower, and peanuts. To eat Brazil and almond nuts. I stick to mainly salads so as not to put weight on and still try to loose the excess, so try to keep under 600 cal a day, but do sometimes slip.
Ideally I'd like to be off the meds but realistically would very much like to use diet to reduce instead.
Anyone know if this is possible?
I have ask my doctor, but he just wants to run more blood tests in 14 days to see how I fare without Liothyronine. Then if it's made a drastic change to send me to the specialist again and ask him about other options, or put me back on Liothyronine.
Ideas please as not really up with all the medical jargon and don't want to be fobbed off again. Also don't want an enlarged heart because of the meds.
Thank you in advance.
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Janneta
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Ummm... I think there are a few misconceptions, there.
Firstly, you say "Started with just Levothyroxine sodium up to 175mg per day, which didn't work due to a build up of anti bodies." I don't know who told you that, but that's not how it works. The antibodies do not 'build up', and they don't stop levo 'working'. If you have antibodies, it means you have Hashimoto's Thyroiditis - aka Hashi's. If you want to know how Hashi's works, have a look at this post, here :
High blood pressure is a symptom of low T3. So, judging by the fact that your endo put you on T3, I would imagine that your T3 was low, and that you have problems converting T4 (levo) to T3. I doubt it was the levo itself that caused your high blood pressure.
T3 is not blacklisted. The NHS just doesn't want to prescribe it, due to the cost. But, T3 doesn't have any direct effect on antibodies - they really don't 'build up' - and it's not the antibodies that cause you to put on weight. Weight-gain is another hypo symptom, due to low T3.
As to food... As you have Hashi's, a 100% gluten-free diet, could help reduce your antibodies. So could taking selenium supplements. That's why you were advised to eat Brazil nuts, because they are supposed to contain selenium. But, they rarely do, these days, so that is not a very reliable way of supplementing selenium.
Broccoli and peanuts are goitrogens - but cauliflower isn't! - so people think you shouldn't eat them. But, unless you eat an awful lot of them, they're not going to have much effect on you. The list of goitrogens is long - and almonds are on it! So, don't know who advised you to eat them but not broccoli! It's unrealistic to think you should cut them all out of your diet. And, as you are on quite a high dose of thyroid hormone replacement, it's unlikely that they are going to upset you. So, enjoy your broccoli!
There are no food substances that are going to get your thyroid working again. It isn't all about food - although, of course, you do need good nourishment. You need plenty of protein, good fats, fresh fruit and veg. However you should avoid unfermented soy like the plague! And, as most processed foods contain some form of soy, it's best to avoid processed food.
And, on the subject of nourishment, you aren't eating enough! 600 calories a day is just rediculous! You need about three times that. If you don't get enough calories, you will not be able to convert T4 to T3 - which you can't! - so will be making yourself more hypo and that will make you put on more weight.
You're not hypo because of what you eat or don't eat, though. You are hypo because you have Hashi's, and the Hashi's is slowly destroying your thyroid. No amount of diet changes will be able to repair the damage already done to your thyroid - and given the dose you take, it's obvious that considerable damage has already been done. Thyroid hormone replacement is for life, I'm afraid.
Thank you Grey Goose. I was missing broccoli. It's one of my favourites. I'll up my calorie intake and I did ask for Selenium, but the Doctor didn't seem to have heard of it! I told him I'd thought it was produced from pigs from what I had read on the internet?
He just said we'll go with the blood tests first. See what they come back as and then go to the specialist and if necessary insist on being put back on the liothyronine.
I didn't know it was referred to as Hashi's. I'll look that up.
Umm.. No, selenium doesn't come from pigs. There might be some in pork, but it's not the best source.
In any case, if you have low stomach acid - which you probably have - then you will have problems absorbing it from food. Which is why we take supplements. And, you can buy selenium supplements on Amazon. It's far better to buy our own supplements, than to rely on our doctors to prescribe them, because doctors are renowned for either prescribing the wrong thing, or not enough of the right thing! It doesn't surprise me that your doctor had never heard of selenium. As I said, they know nothing about nutrition. He probably thought it was some kind of drug!
How can a doctor tell "but he just wants to run more blood tests in 14 days to see how I fare without Liothyronine".
It is how the patient feels on a particular hormone which should be the standard: a blood test can only reveal the whereabouts of the numbers only and that doesn't include the patient's input of how he/she feels.
If the endocrinologist has prescribed liothyronine and you need it for 'clinical' reasons you should still get it prescribed.
Yes I said that to my doctor and he was on my side. He tried to redo the prescription for me but couldn't as the NHS blacklisted it. He said we do the blood test to see if there is any difference without The liothyronine. Then we have evidence proving my need and he said he will speak to the specialist himself to ensure I get them if I need them.
He told me the specialist will need to request them.
Well he sounds to be in your corner so that's a positive! Mine hasn't a clue but that's fine by me as I go to the hospital instead of getting wrong info from my surgery.
I get a better backing from my Doctor. My specialist seems to think he's on a higher plain than me and I should bow my head in his presence. Totally opposite to you.
I am fed up though of contradictory advise as the main specialist bloke is rarely available and I just get others who are here for a bit of experience. Unfortunately due to Brexit and the hospital doctors Strick I've not seen a specialist since November 2015! I've had to phone the secretary to get a blood test form for bloods done so my doctor can keep an eye on them.
Don't know if everyone else does it, but I always ask at the hospital blood clinic to send results to my doctor too, otherwise he doesn't get them!
I'm an old lady who gets stroppy at times and my Endo doesn't look like he shaves yet! One of the things this forum as taught me is to ask more questions and query things I'm not sure of. Rest of the time I am friendly! My favourite say for years is that if everyone works to the best of their ability there are no better or worse than anyone else. Your Endo had knowledge (we hope) more than us but it doesn't make him better than us just better educated but at the end of the day re are all individuals who should be given respect who ever we are and should give the same in return. So talk to him as an equal and ask questions.
I've tried and am probably just as well educated as him. Unfortunately to get anywhere near him even bothering to listen I've had to resort to taking my husband in with me! Then he talks to him and I have to refer questions through him!!! Very irritating and difficult to not loose my temper with him.
I referred this to my Doctor who is also a specialist, but not thyroid. He's told me any problems to let him know and he will phone him directly. Which is all good. I just find it very hard and frustrating to rely on other people to get things done.
I run two companies of my own with staff to deal with. Not very good on delegation, but my staff know I'm there for them to come to if there's an issue. Plus of course don't suffer fools gladly.
Also not a good patient and not impressed after having finally got my thyroid under control and now getting slowly but surely back to my original weight find myself back to the start again.
I've got to wait for 14 days then blood tests. Then another 10 days before the results can be gone through with my doctor. If I gain weight again after struggling for so long to start loosing it I will be more than disappointed.
I'm hoping that through this group I can gain the upper hand and not be worrying if I'm asking the right questions, or missing asking for something that would help.
I've told the doctor that if this blacklisting of Liothyronine causes me to gain even just a couple of pounds I want to be referred to a professional dietitian. Plus I want liothyronine back on my prescription. Which he agreed with totally. I just need to bit the bullet for the next few weeks to see. Then I'm either back to coping, or I'm going to start a very loud debate with the specialist.
It's just so frustrating the way we are treated. Only wish there was a choice and not one made for us. One we can choose and decide ourselves. I'm not good on being told what, why, when, and how as I've always had to do this myself. I want to be included and not treated like some sort of thing! 😉
Good for you! Wish you all the best but the obstacles seem to get higher as time goes on! I was over the moon when the NHS finally realised they were paying through the nose though I didn't think they would give in as they have done with patients paying the price literally as well! I do hope this other firm that has applied for a licience to sell T3 will show what price they want and don't listen to the many medics that say T3 doesn't do anything so we shall never prescribe it.
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