T4 and T3

[Zuzka1]

Please can anyone help me. I'm feeling so desperate and I don't know where to turn. I'm English but live in France. I've a under active thyroid. I'm on 75mg of levoroxine. It's not doing anything. I'm so unbelievably tired. I can not loose weight ( I've been on slimming world for a year and am the same weight) I can't get enough air into my lungs. Like I'm a smoker but I'm not. I'm soooo moody and angry all the time and this is just not me. I see the DR again on Thursday but the language barrier is hard plus I don't think she's any clue what do with me. Please please can anyone give me advise? I've two small children and I want to keep up with them. I just want to be me. Sorry such a depressing post. Marax

[bluebug]

The first thing you can do is get a copy of ALL your tests with the ranges. It doesn't matter if they are in French or English as someone on here will be able to decipher them.

Once you have them start a new post and put your latest test results in it with the range in the form of:

test name result (range)

e.g. TSH 6 (0.4-5.0)

There is a European Data Protection Directive that means all patients in the EU are entitled to see a copy of their test results and ranges. Though there may be a charge for this so your doctor cannot refuse to give them to you.

At the actual appointment also ask the doctor to test your FT3, FT4, TSH, folate, ferritin, vitamin B12 and vitamin D levels. Also get your thyroid antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (TgAb) - tested. When you do and have the results post another new thread with the ranges.

In future if you need more tests makes sure you have them first thing in the morning after fasting over night. You can drink water. Take your last dose of levo 24 hours before. You can take the next dose after the test.

Once you have these figures posters will advise whether you need:

1. a levo increase,

2. to supplement your vitamins and minerals,

3. change your diet,

etc.

[Zuzka1 in reply to bluebug]

Thank you. I have all my test results so will post now. Thank you for responding.

[Zuzka1 in reply to bluebug]

How do I create a new post? Sorry.

[Zuzka1 in reply to Zuzka1]

I found it 😃

[shaws Administrator]

My dear girl. It will be clear to many on this forum that you are probably on an insufficient dose of levothyroxine. 75mcg is a low dose. When a dose is too low for us as individuals we get more unpleasant symptoms. Breathing is one very important issue.

First thing, your TSH (which I think will be roughly the same ranges in France) should be 1 or lower. T3 is the most important hormone as it is the Active one required in all our receptor cells. T4 (levothyroxine) is inactive and has to convert to T3 and if not on sufficient T4 you may not have sufficient T3.

When you have a blood test it should be at the very earliest and a fasting one. You can drink water. Allow about 24 hours between your last dose of levo and the test. This procedure allows the TSH to be at its highest as that's all the doctors know about. They think it is easy to solve our problems but they can add to them by prescribing anti-d's, antacids, statins, or anything else rather than give the patient a proper and decent dose of hormones.

All of the following are clinical symptoms of undertreated/untreated hypothyroidism.

"unbelievably tired. I can not loose weight ( I've been on slimming world for a year and am the same weight) I can't get enough air into my lungs".

Request a full range of thyroid function test: i.e. TSH, T4, T3, Free T4, Free T3 and antibodies. Ask also for B12, Vit D, iron, ferritin and folate to be checked as well as new thyroid blood test and get a print-out with the ranges and post on a new question.

By reading this and others' replies you will know far more than the doctor you are seeing. They fail to 'look' at the patient and just acknowledge the TSH. Clinical symptoms are not part of their training so are ignorant about them.

(I am not medically qualified and have hypothyroidism which was undiagnosed/untreated).

[Zuzka1 in reply to shaws]

My last TSH result was 2.181

[shaws Administrator in reply to Zuzka1]

Many doctors wrongly believe that if the TSH is 'anywhere' in the range is o.k. It isn't. A hypothyroid patient should be given sufficient hormones for the TSH to be around 1 or lower.

Email [e-mail] and ask for a copy of the Pulse online article by Dr Toft (ex President of the BTA) and highlight question 6 I believe when he gives the recommendation for the TSH. Discuss with your doctor.

When you give blood test results always quote the ranges, the reason being that labs use different machines thus different ranges. Ranges are helpful for members to comment.

[Zuzka1 in reply to shaws]

Thank you. I will email. Now. I'm so grateful for your help.

[shaws Administrator in reply to Zuzka1]

Most of us on this forum have been in similar predicaments when not getting better when prescribed levothyroxine. Sometime on too low a dose but I am now well on T3 only as I felt worse on levo.

[Zuzka1 in reply to shaws]

Ok so because I got the heart palpitations on upping my T4 my head is telling me I need to have T3 as well. What I don't understand is do I ask for a combined T4 and T3, two separate ones or I drop T4? This is soooooo confusing. I've read on here some people saying they felt better as soon as they took T3. I so want that to be me. I've never felt this tired/bad/low. I can't stand it. It's like I've hit a gradual wall and this last week I've hit it at full pelt. I honestly can't describe the relief talking to everyone on here is giving me. I'm not imagining how bad I feel. It's real!

[shaws Administrator in reply to Zuzka1]

I have just read this and it by passed me.

As you are only taking 75mcg of T4, I think a 25mcg reduction of T4 and add 1/4 T3 which is equivalent approx to 25mcg of levo (the effect could be slightly less) and after 2 weeks increase by another 1/4.

Take your pulse/temp before you begin so you have a guide. If pulse goes too high or temp, reduce down to lower dose.

T3 calmed my palps.

(bear in mind also that I'm not medically qualified but take T3 only and I gradually switched over from T4 to T4/T3 then T3 alone)

[Zuzka1 in reply to shaws]

Sorry for my late reply too! Thank you for gettingback to me. I am seeing a Endo on the 30th so only a week to go....I'm going to see what they say first before I changeanything. Thank you. Mara

[shaws Administrator in reply to Zuzka1]

Yes, you're right. We cannot be confrontational and wait to see what he says and I hope he is open to a suggestion Good luck.

[Zuzka1 in reply to shaws]

Thank you. I will post on here for sure what they say 😬

[shaws Administrator]

This is another link which is self-explanatory:

web.archive.org/web/2010103...

[Zuzka1 in reply to shaws]

This has scared me a little regarding the breathing issues 😢

[shaws Administrator in reply to Zuzka1]

Try not to worry but it is the doctor who should be aware of clinical symptoms. The patient shouldn't be looking around for reasons they feel so bad we have no option. Give a copy to your doctor.

You can tell her you've taken advice from the NHS Choices about dysfunctions for thyroid gland. HUThyroiduk.org.

[Zuzka1]

Thank you. When I was 'upped' to 75 I got full on palpitations.....but for two weeks before they started I felt better. My dr and I then lowered me to 75 one day 62.5 the next day.....since then I feel terrible and I mean really bad. I've just upped myself again to 75mg..... I will ask for all of those things on Thursday. Thank you.

[Zuzka1 in reply to Zuzka1]

Also I've put up a separate post with my last results. X

[shaws Administrator in reply to Zuzka1]

Some people have a genetic reason that levothyroxine doesn't make them well. Only T3 will and I'll give you a link.

thyroiduk.org.uk/tuk/testin...

[greygoose]

Do you know that in France, you do not need your doctor's permission to see an endo? You do not need to get a referral. Just pick the endo you would like to see, and give them a ring, see if they're taking new patients - that's the problem at the moment, not enough doctors to go round!

Do you live anywhere near Paris? That's where the best endos are, of course. But, by googling, I'm sure you can find information about the endos in your area.

Have you tried asking your doctor for T3? Don't call it T3, they don't know what that is. Ask for Liothyronine (pronounced 'leotironin') - they can find that in their big prescribing book - or Cytomel (pronounced 'Seatomel'). There aren't the price restrictions in France, so it's easier to get prescribed.

Apart from that, you need to get your vit D, vit B12, folate and ferritin tested. They are all written the same as in English, just put on a French accent, ma chèrie! lol

Don't bother trying to describe your symptoms - except fatiguée ! - they won't know what they are, anyway. Just say you need an increase. And, if ever they try to reduce your dose, just keep saying 'non, non, non' until they give up! Just remember, you are in charge!

Now, let's have a look at those lab results!

[Zuzka1 in reply to greygoose]

Thank you grey goose. I've done another post with my results. I didn't know that about a Endo but I do have a letter from my DR to see them. I'm in Annecy.

[greygoose in reply to Zuzka1]

Oh, right, quite a way south of Paris. Nice place to live! I'm up 45 kms north of Paris, in the OIse. Not such a nice place to live! But, handy for Paris.

I'll have a look at your results.

[Zuzka1 in reply to greygoose]

Thank you