Confused

[Carriebaby]

Hi through working this weekend I happened to meet 4 women who were doing well on Levothyroxine now 3 of them were peri menopausal and eat all the wrong foods😤 Also they said they never took vit or mineral supplements and had never had weight issues since taking Levothyroxine 😬 I'm so confused as I eat a low carbohydrate diet take supplements to aid my thyroid, drink plenty full fat milk, coupled with all recommended vitamins and minerals and still can't drop a pound in weight nor lower my cholesterol 😢 Now I've sent for NDT and need advice as I am currently on 100mg of Levothyroxine and have sent away for 1 grain.  How soon before I start this new med do I stop taking Levo and would anyone recommend how much I should start with 

[Jazzw]

Because some people do brilliantly well on levo. Probably the majority of people do - that's why GPs look at us funny when we tell them it doesn't work for us.

You may have other nutritional deficiencies. You might be short of Vit D, Vit B, iron etc (multivitamins don't solve the problem if there is one - not enough of anything in them). You may have gut absorption problems (which would render multivits useless). You might be wheat intolerant, lactose intolerant, casein intolerant, lectin intolerant etc. Or, it might be that due to genetic variants your particular type of hypothyroidism doesn't respond well to levo.

Anyway. When you get your NDT, because you're already on 100mcg of levo you can stop taking levo one day and take a grain of NDT the next. No need to taper anything off. If after a fortnight it feels like you need more NDT, add another half a grain and see how that goes for the next fortnight. And so on. Most seem to need at least 2 grains but it is highly individual and less might be right for you. I did ok on 2 grains for quite a while but now take 3 grains. It's important not to rush things though - give each half grain raise in dose at least a fortnight, preferably longer.

[Carriebaby in reply to Jazzw]

Hi Jazzw I have to agree I get told to go away and join a slimming club by my GP.  Insult to injury 😡 I've had lactose and glutton tests to which I'm normal I take fit d, all the b's iron ect I also take a organic coconut supplement as I've been told coconut is a fab sup to incorporate anyway I will ask my doc to take further fit & mineral tests just to tick that of the list of things needing to investigate and when the NDT arrives I will give it a go.  I have also sent away for an adrenal support sup and the book on T3 by Paul Robertson. I'm hoping to eventually get to the bottom of why I'm not getting better and what will work for me in the future 😀

[greygoose]

Just saying 'they take levo and are doing well', doesn't tell the whole story, does it. Jazz has outlined some possible différences between them and you. But you also have to take into consideration how much they are taking, and how long they've been taking it. Not do you know how bad their hypo was at the time they were diagnosed. 

You are only on a starting dose, you Don't say how long you've been on it. Are you taking it correctly - empty stomach, with a glass of water, one hour before eating, two hours away from suppléments, four hours from calcium, iron, estrogen and vit D? Are you getting tested in the right way - early morning, fasting, 24 hours between last dose and test? Do you have adrenal problems? There are so many things to take into consideration that you cannot just make a straight comparison like that. We are what we are, and we need what we need, and should never compare ourselves to others in any department!

[Carriebaby in reply to greygoose]

Hi grey goose I was speaking to one woman in particular who like me had been on Levathyroxine for 18 years had gone through the menopause like me and who was on the same dose like me !! I've been on numerous doses through my 18 years ranging from 150 down to 75 and always tested on TSH any time it's been reduced was because I had too much and was suffering from heart palpitations ( not a nice feeling) coupled with a tightening in my throat and jittery feelings. I have been checked for calcium deficiency and Lactos / gluten to which I'm normal. I do not eat any bread and also eat a low carb diet. I guess I'm just frustrated as I think my GP thinks I'm a pain in the neck because I tell her I don't think the medication is addressing all the symptoms of my under active thyroid 😡

[greygoose in reply to Carriebaby]

Well, I Don't suppose it is. As I said, you're only on a starter dose.

So, you've been taking Levo for 18 years, and your dose has never got any higher than 150? And they've been upping and downing your dose according to the TSH? And they've only ever tested the TSH? That is borderline negligence!

Did you ever get copies of your results? It is your legal right to have one, so always ask for it. Did you ever feel well on any dose? If so, do you know what your TSH was at that point?

I'm afraid we cannot just sit back and let our doctors get on with it when we have thyroid problems, because they just have no idea what they're doing. We have to be active, not passive. You just cannot trust them to know what they're doing.

So, are you planning to self-treat now, with your NDT? What does your doctor think about that?     

[greygoose in reply to greygoose]

Oh, heart palpitations can be because of too much or too little hormone. But you really can't tell which it is without getting the FT3 tested.

[Carriebaby in reply to greygoose]

She won't do it 😬

[greygoose in reply to Carriebaby]

Then you'll have to get it done privately.

[Carriebaby in reply to greygoose]

Hi again, when I was first diagnosed 18 years ago I was started off on 25 then upped regularly until I was on 150 for the first 2 years I did relatively well and my weight which had risen by 2 stones was reduced to my previous weight. But I constantly has weight issues thereafter and putting me   Back up by 2 stones.  I then went into the menopause which has added another stone and elivated my cholesterol 😢 I can't take more than 100 mcg as I feel unwell and get a tight throat heart palpitations and feelings of being jittery ! My doc is not helpful and won't do any other thyroid tests so just depends on the TSH results my last results were TSH 0.50 Free T4 17.3 which they deem normal. My biggest issues is the weight gain 3 stone and my cholesterol 7 HDL 1.7 IDL 4.68 Triglyceride 1.37 HDL Ratio 4.12 blood sugars 5.1 so not diabetic.  I have asked for active T3 test but it was declined and she added that the NHS don't do that test as its not necessary 😁

[greygoose in reply to Carriebaby]

Well, she's totally ignorant, then, isn't she.

Have you asked for a referral to an endo? Because they can,  and often do, order FT3 tests. Besides, your doctor doesn't seem to be able to treat you correctly, so it's about time she handed you over to an endo. She's had a fair wack - 18 years! - and failed miserably, so...

Your cholesterol, in itself, is totally irrelevant. Don't worry about it being high, probably just means your FT3 is low. High cholesterol is a symptom, not a disease.   

TSH 0.50 Free T4 17.3 does look normal - although it would help if you posted the range - but it doesn't tell you what your FT3 is. They really are amazing! How can they deem the most important number to be 'not necessary'? It's very necessary. But not testing it is just another way of keeping you sick - and that's just what Big Pharma wants!

Time to start putting your foot down, and taking charge of your own health. Get your own tests done privately, and if necessary, buy your own T3 or NDT.

[Carriebaby in reply to greygoose]

That's exactly what I'm doing sent away for NDT and going to get my T3 revers T3 ect plus my progesterone as I'm through the menopause and think I may be Estrogene dominant !! 

[greygoose in reply to Carriebaby]

Well, at this stage, I'm not convinced rT3 is a helpful test. Not Worth spending extra money on, anyway.

[Carriebaby in reply to greygoose]

Just spoke to my GP today and told her I wanted the T3 test done as I didn't think the Levothyroxine was addressing all my symptoms  so getting bloods taken next week !! Just hope the T3 test will show up wether I've got a low amount getting to my cells .......fingers crossed as if I have I think they may prescribe me T3 What a result that would be 😀

[greygoose in reply to Carriebaby]

Ummm... no, the test will not show whether T3 is getting into your cells. It will just show what's in your blood. Which is why people can have high levels according to the test, but still have hypo symptoms.

That's one of the reasons you need optimal vit D, vit B12, folate and ferritin - and good levels of cortisol - to help the T3 get into the cells.

[Carriebaby in reply to greygoose]

Oh no and here was me thinking I was getting somewhere as I thought low levels of T3 in my blood stream would point to the conversion from T4 not taking place properly or in large enough to elevate hypo symptoms .......I'm gutted 😤

[greygoose in reply to Carriebaby]

What? Now you've got me confused. lol They are two different things. 

1. If you have high levels FT4 and low levels of FT3, then you aren't converting correctly.

2. If you have FT3 higher in range then FT4, then you are coverting properly.

3. If both are low, then you don't have enough T4 to convert.

4. If you have high levels of FT3 but still have hypo symptoms, then you probably have an absorption problem - i.e. the T3 isn't getting into the cells. 

To find out if you have a conversion problem, you need to do the FT4 and the FT3 at the same time and compair them. 

There is no test to show how much T3 is getting into the cells.

Conversion and absorption are not the same problem.

[Carriebaby in reply to greygoose]

What test shows up that you are not converting T4 to T3 then if not this test ? 

[Marz in reply to Carriebaby]

...as greygoose has mentioned above - you need BOTH the FT4 and the FT3 tested.  If the FT4 is good and FT3 is LOW then possibly you are not converting well.

[Pastille]

Hi Carriebaby, I am 46, (prob perimenopausal, got symptoms) Eat a great diet, lots of fruit and veg, protein, hardly any gluten, Just increased levo to 125mcg, added all the supplements (though they do need improvements) and just added 5HTP. I have been on levo for 18 mnths, gained 3 and half stone, and feel like I am living in someone elses body, physically and mentally !! I have constant symptoms :((  it's not working out too successful for me either. I will prob have to go down the T3 route and I dread asking my GP to test for that! I have just increased my own levo dose bcos I doubt he would do it so I want to say 'see I'm okay on this dose' , so he'll prescribe it!! Nightmare. But yeah, some people just get lucky, It's all trial and error. Good luck with T3 

[greygoose in reply to Pastille]

If you are sensitive to gluten, 'hardly any gluten' is as bad as lots of gluten. With Gluten it's all or nothing, I'm afraid.

Did you buy your own levo to increase your dose? Why didn't you buy some T3, instead?  

[Pastille in reply to greygoose]

Hi GG, no I had some levo left over from previous prescriptions. I can't really afford T3 at the moment. I was going to buy some last week and then I changed my mind and thought I'll wait and see how the levo increase goes. I have very little gluten now but I know what you mean, I am weaning myself off I do bloat less though for some reason but the lattes are my weakness :/  Must say I do feel a teeny bit brighter with this increase to 125mcg  and my temperature is much better. Thanks

[greygoose in reply to Pastille]

If you find the right source, T3 is very cheap. But I'm afraid I can't help you with that one.

I Don't understand the connection between lattes and gluten. But I hope they're not soy milk lattes! lol

[Pastille in reply to greygoose]

Oh I was just going on about bad food/drink habits I can't get out of lol, I get carried away

[greygoose in reply to Pastille]

OK lol

[Carriebaby in reply to Pastille]

Hi I'm actually waiting on a private prescription from America for NDT which is more nature not synthetic and gives me T4 and T3 as Levo isn't cutting it!! It is cheaper to purchase than T3 which seems really costly unless you get it from Turkey. My GP won't prescribe it let alone do further tests as she is blinkered and thinks the TSH blood test is the only one required 

[Pastille in reply to Carriebaby]

Oh well I hope it works out for you, Maybe you could look around for a more sympathetic GP once you know it works. It might be easier that way rather than it sounding like a trial basis. Good luck  

[BeansMummy]

I have family members who tell me how well they do on levothyroxine, and have no issues or problems. There is this underlying suggestion that I make mountains out of molehills, that I am "looking for" issues to complicate everything etc.

I was asked why I needed the B12 injections, which I get from my GP. I listed the awful symptoms I was having. One relative, who still maintains that he is healthy, said that he thought it was normal for everyone to have pins and needles in their fingers and hands, plus a host of other symptoms. And no, he has never had his B12 tested.

Another family member maintains that, despite a fluctuating TSH and a GP who changes their levothyroxine dose based on just that test, it is normal to feel extremely tired, gain weight and feel depressed when you get older. 

I've given up saying anything because they have GPs who know everything. They believe their doctors when they say that the little white pill they take every day will sort everything out. It makes me sad that people I love live in cloud cuckoo land.

[Carriebaby in reply to BeansMummy]

Well I totally relate to you as I have family members who think I'm a hypercondriac and my weight gain is due to over eating !!! Exasperated doesn't even come close!!!!!

[BeansMummy in reply to Carriebaby]

I've stepped back from saying anything now. I have never pushed them to "do" anything, but I have suggested talking to their GPs about their symptoms, or request tests etc. I feel sad that they are in denial about their own health, and I never get asked how I am. I'm fed-up with people giving me well-meaning advice, but it isn't helpful (do they really think that going to bed earlier will enable me to sleep? They do not understand how unwell we can be).

Thankfully, my husband and adult children are extremely supportive.