Here goes..... I am 32 years old and have hashi's, diagnosed Feb 2018. At the time I was diagnosed I had been feeling poorly for years and had numerous doctors appointments and tests. My symptoms were not all 'typical' hashimoto symptoms. They were - anxiety, racing heart (especially at night), dry/stinging eyes, very light and extremely irregular periods, constipation, dry nostrils/lips, hair loss, thin nails, post nasal drip, headaches/pressure feeling in head, frequent urine infections. My metabolism was fast, my friends and family were shocked because I'm always eating! When I was diagnosed my blood test results were;
TSH - >100.0mlU/L [0.3-4.5]
Free T4 - 6.6 pmol/L [10.0-22.0]
Antibodies TPO - 653 (above high reference limit -59)
The strange thing is that I had TSH & T4 tested in Nov 2015 whilst experiencing the exact same symptoms and it came back normal! I had positive TPO's in a blood test in 2008 but was told I didn't need to do anything about it (at the time I didn't understand what antibodies were or what they were doing to my thyroid gland)
Since Feb 2018 I have been taking T4 - 75 Levothyroxine a day, but feel no better. All the original symptoms but the main problems that i really struggle with almost every day are my stinging eyes/head pressure and constipation. My periods are a bit better but still not right. I have tried gluten free (strictly for 3 months) and it made me feel no better, I have also been taking selenium. I had an appointment with an endo a few months ago and he said to wait longer for the T4 to 'kick in' but not sure I believe him. Diabetes and sex hormones test came back normal. Have privately tested for adrenal problems - normal. Had T3 tested in April last year - normal ( 5.0 pmol/L [3.1-6.8] ).
My partner and I have been trying for a baby since July 2017 and haven't managed to conceive, he has a son. I have been referred and am waiting for a fertility appointment. I eat really healthily and exercise regularly. My BMI is healthy.
I have just had my bloods tested again and they are as follows;
TSH - 3.44m[iU]/L (0.3-4.5) GP said this is normal
Free T4 level 22.2 pmol/L (10-22) Slightly high by GP said he isn't concerned.
I have asked for another endo appointment and curious about trying T3 or NDT.
Has anyone experienced my symptoms or have any advice?
Really appreciate any help as i'm really fed up. When i was diagnosed, i finally thought they had found my problem and I would feel better, a year later and I don't and it is getting me down, especially as my partner is 45 years old so we would like a baby asap!! I have forgotten what it feels like to feel like my normal self and have given up with my GP.
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When your doctor says 'normal', all he means is 'in-range'. But, your TSH is too high, even though it is 'in-range'. So, as your FT4 is high, that probably means that you have a conversion problem, and your FT3 is low. But, the NHS in all its stupid 'wisdom' does not test the FT3, so we cannot know for sure. But, your TSH should be 1 or under when you are on thyroid hormone replacement. And certainly below 2 for you to conceive. You probably need to find a new doctor that knows something about thyroid, because I don't think this one does.
I have now changed my GP practice and have paid to see an endocrinologist in 2 weeks time. Do you have any advice on how to prepare for the endo appointment? I would like to try T3 so I thought about taking some reports I have been reading regarding how some people benefit from T3, instead of just T4....or do you think that would annoy him?! Thanks
It possibly would, yes - especially on a first appointment. At least get to know the man and his ideas before bombarding him with reports and articles.
What you do need are past blood test results, and a list of your symptoms, and notes of anything you want to say or ask, so that you don't come away remembering something you wanted to say and didn't. But, first appointment, best to play it by ear and just answer his questions.
My endo agreed that my TSH was still too high, he would prefer it to be much lower especially to conceive and have a healthy pregnancy. He will not prescribe T3 to do this though. He says T3 is too unpredictable and not suitable for pregnancy. He has suggested i increase my T4 so that my T4 will actually go too high (it is currently borderline high according to the ranges) and hopefully then my TSH will come down. He said he has a few patients who have to run their T4 much higher than others to feel well. I am now taking 100 levo per day (increase from 75) and need to have my bloods done in 6 weeks time to check levels. Do you have any thoughts? Thank you for your help.
I don't think your endo really understands how it all works. The only reason your TSH is high is because your thyroid hormone is too low. If your FT4 is top of the range, then that means that your FT3 must be low. If you keep increasing your dose of levo in order to increase the FT3 and thereby reduce the TSH, your FT4 level could reach a point where it becomes toxic.
And, I don't really thing that a high TSH is counter-indicated for conceiving because the TSH itself prevents conception, but because it indicates that the thyroid hormones are too low. The aim is not to reduce the TSH by any means, but to insure that you have enough thyroid hormone in circulation to make you well, which will, incidentally, reduce TSH. He's another doctor that puts the cart before the horse!
He says T3 is too unpredictable and not suitable for pregnancy.
I think he's just making excuses. Perhaps you should ask him in what way T3 is too unpredictable. And, I think the only answer to that is 'in the way that I don't understand it'! I self-treat on T3 only, and don't find it in the least 'unpredictable. You increase the dose, the FT3 rises, you lower the dose the FT3 reduces. What is unpredictable in that? And, if T3 is not suitable for pregnancy, how do euthyroid people manage? Because they make plenty of T3 naturally. It never stopped anybody getting pregnant and having a healthy baby.
There is the idea that only T4 can cross the blood-placenta barrier. That may or may not be true - some people are beginning to thing it isn't true, that T3 can cross it - but, even if it is true, the mother still needs enough T3 to be healthy and to carry her pregnancy to term. I just don't think this man really knows what he's talking about.
Thank you Greygoose. Having thyroid problems is the most frustrating thing!! I think I maybe need to find an endo specialising in thyroid conditions but I don't know if such a thing exists, and I can't afford that at the moment. I did ask him why he doesn't agree with T3, he said a few things about lack of control over it (which i didn't understand) and that thing about the placenta. I asked about testing my T3 levels, he said there is no point being obsessed with how much T3 is in the blood because it all depends on how much the cells actually use. I might still have symptoms and a high-ish TSH because the receptors are not using the thyroxine in the correct way because of a faulty gene. I have read about this before - thyroiduk.org.uk/tuk/testin... although strangely, he thinks the way to resolve this is to get my T4 higher, not to introduce T3.
I asked about testing my T3 levels, he said there is no point being obsessed with how much T3 is in the blood because it all depends on how much the cells actually use
That might be true for a euthyroid person, but for a hypo it depends how much T3 you put in the blood! Or how well you can convert. What he's actually saying is that he doesn't really understand how T3 works.
I might still have symptoms and a high-ish TSH because the receptors are not using the thyroxine in the correct way because of a faulty gene.
Not, the TSH is nothing to do with how much hormone gets into the cell - besides, it's not the receptors that use thyroxine. What he means is that the faulty gene could cause thyroid hormone resistance, where the hormone cannot get into the cells. But, in that case, the TSH would be low, the levels of FT4/3 would be good, but you would still have symptoms. But, if you never test the FT3, you're not going to know any of this. I think he's really very confused. Does he draw diagrams? lol The confused ones usually do. I've seen some weird diagrams in my time!
The DIO2 gene test is to do with converting T4 to T3, not getting the hormone into the cells. Not the same thing.
Increasing the T4 would be ok if you're a good converter, because what is needed is to flood the receptors. But, he cannot know how well you convert without testing the FT4 and the FT3 together. I think he really needs to go back to school!
Thank you. As i have a new GP now, i am going to insist he checks my T3 when he does my bloods in 6 weeks time. I did have T3 tested once before in April last year (I was diagnosed last Feb) They said it was normal.
TSH (range - 0.3-4.5)
3.3
Free T4 (range - 10-22)
19.9
Triiodothyronine T3 (range 3.1-6.8)
5.0
Thank you for all of your help. It's frustrating me. I feel like there is a complete lack of interest from GP's and endo's to learn more about thyroid conditions.
'Normal' is an opinion, that's all. And your FT3 would only be 'normal' for you if all your symptoms were gone and you were well. If you still have symptoms, then it is not 'normal' for you, and should be higher. In any case, your TSH was too high, at that point, so your body certainly doesn't think your FT3 is 'normal'!
To be honest, when a doctor says 'normal', all he means is 'in-range', his lack of knowledge of thyroid doesn't allow him to go any further than that. And, as you say, they are just not interested in increasing their knowledge. Just content to sit on their derrières and imagine they know it all because they 'did' it in med school.
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