Thyroxine Blues

Dear all,

40 years ago had a subtotal thyroidectomy (cancer) and have spent all that time trying to find the best L thyroxine does which typically is 100 mcg/day. When I started then no internet, no warnings about taking it with iron (which I did) or with soy milk (which I did) and I stored the tables on a nice sunny ledge in my kitchen. The 70s and 80s were just a constant fatigue.

More recently, frustrated with always feeling HYPO cause different doctors said "but Loy, your TSH is within range", that's not the problem you are simply ageing and that is why you always feel cold, fatigued, brittle hair, lifeless skin etc..you know the symptoms as well as I do.

Went to see an integrative doctor who claimed to know about thyroid cause I suspected T3, or lack of, was the culprit. After extensive blood tests, apparently so.

Before I went to see him my bloods were: TSH 4.78 (Ref 0.5-6.0), FT4 18.8 (Ref 11.0-2201) FT3 4.2 (Ref 3.2-6.4).

When my bloods came back he told me that my FT3 was really low as was my TSH ( i don't have those numbers yet). So, given I assumed that he specialised in thyroid stuff, I assumed he knew what he was doing. I went from 100 mcg T4 daily plus another 25 T4 mcg daily and 20 mcg T3 nails (which is 20x4)=80 mcg T4. In other words, he more than doubled my daily T4 dose.

Needless to say I wound up in hospital 3 weeks later with serious headaches and high blood pressure of 190/110.

The headaches are more like pressure in my head like intracranial hypertension and I am now on regular blood pressure tables.

Subsequent labs: TSH 0.42 (Ref 0.5-6.0), FT4 15.9 (11.0-22.0) FT3 5.0 (3.2-6.4) Yep, TSH really sucks.

So, a couple of things if I could:

1. Has anyone else endured a similar scenario and how was it resolved for you?

2. Anyone any info on the relationship between excessive L thyroxine and T3 and intracranial hypertension? And how that was resolved?

3. Relationship between high blood pressure and thyroxine if any and resolution.

The problem is that when I took the T3, for the first time in my thyroxine life I had a glimpse of what my body could be rather than being hypo all of the time. It was that good before it went pear shaped.

23 Replies

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  • drll,

    Welcome to our forum and sorry to hear you are feeling so unwell.

    As you are probably now aware, thyroid hormone replacement meds should only be increased in small increments, in order for the body to tolerate and utilise additional hormone positively.

    Your latest results aren't indicative of you being over medicated, as are actually good. You would expect your TSH to be lower as when medicating T3 the pituitary often senses thyroid hormone in the blood stream and reduces TSH secretion (many doctors don't acknowledge this ).. T4 level is fine and T3 is just over half way through range.

    I would think your adrenal glands are suffering from not only years of low thyroid hormone but now this huge surge of additional thyroid hormone, that will have further compromised adrenals glands, simply unable to keep up with the boost in your metabolism..

    Long term low cortisol levels can disrupt the HPA axis (hypothalamus-pituitary-adrenals), decrease T4 - T3 conversion, cause big blood sugar issues and deficiencies in sex hormones post menopausal.

    Inner heat and headaches are common symptoms often felt for a few days when T3 is first introduced. Your symptoms appear to be of a more severe nature so if I were you, I would stop the T3 and re-introduce more slowly ... 5mcg daily (split into two doses am & pm). After one week if no ill effects are felt, introduce another 5mcg and so on until you are medicating 20mcg T3 daily.

    If headaches or inner heat is felt, you will need to reduce to the previous dose for another week. You will not need to reduce Levo as your T4 levels are not high. Retest thyroid hormones (including T3) after six weeks and post any results complete with ranges (numbers in brackets) for members to comment. Some members find measuring temps and pulse to be helpful when dosing T3, and observing any improvements. Also keeping a log of how you feel.

    My adrenals glands were severely compromised with the introduction of ill suited thyroid hormone and I also experienced high blood pressure for two years, which has now dropped back to normal after achieving optimal thyroid hormone meds that are working. It is not just about thyroids meds but also supporting the adrenal glands and having adequate cortisol supplies and optimal iron and nutrient levels.

    Ask your GP to test Vit B12, folate, ferritin, Vit D and post these results complete with ranges (numbers in brackets) for members to comment.

    .

    Hypothyroidism

    thyroiduk.org.uk/tuk/about_...

    .

    Thyroid & Cortisol

    hypothyroidmom.com/cortisol...

    .

    As it is unwise to medicate T3 without testing levels, members use private labs, when doctors are uncooperative.

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

  • I would agree, with the above. You were heading in the right direction but it was done dose wise to quickly. I would also agree the labs including Tsh is much better.

  • I very much appreciate your comments Radd, thank you. I have been around this area for a long time, but what happened was new for me. I have stopped the T3 and I decided not to use it until there was stabilisation of my BP and the fact that it took 2 years for you did not exactly cheer me up. I have been retested last week and I should have my lab results this coming Friday, but my (conventional) GP still fights me re having my T3 levels tested as he thinks the only measure is TSH. Unfortunately, it is really hard to find a responsive doctor in this regard and this is why I had hoped the integrative doctor would be better. Needless to say, there was no conversation about how my new T3s should be introduced into my body and I guess I have given up hope of finding someone (in Melbourne, Australia) both sympathetic and competent. But this has been the story for me for the past 40 years, and believe me, I have looked.

  • Let's hope there's a solution. 40 years is a lifetime of illhealth.

  • Unfortunately I have suffered with years of ill health too. It has impacted on my life including work and relationships to a very big extent. Wish the internet was available in the 70s and 80s too as I wish if I had known then what I know now, things may have been different.

  • We cannot look back as we'd build up a lot of resentment but we, ourselves, can now try to give some life back into our bodies despite the dreadful guidelines laid down by the Associations.

    What hormone works for one person, may not always work for another, so it is trial and error and we should be allowed options. The problem is doctors are prohibited unless someone goes private and many people are unable to work through illhealth and so cannot pay. Also some who've gone private have been let down.

  • I have come to the conclusion that the only person I can trust with my health is me. After just realising that my GP (who is one of the better ones in the bunch) didn't tell me that my Hba1c is too high two years ago, I am not taking anyone's word for anything any more.

    I'll research it and make my own decisions, thank you very much. They may not be very good decisions, but at least they will be mine.

    FFS! They bleat on about the diabetes epidemic killing the NHS, so why not at least warn patients if they are heading in that direction?

    dril, start doing your research and take control of your own health. You can get any testing you need privately nowadays, and any medication with a bit of ferreting. Of course it is risky, but its probably more risky trusting the average doctor.

    Rant over! I'm going to walk my dogs in the sunshine, and then go to a Koi farm to drool!

  • Totally endorse everything you say! If we all became our own doctors, we would get better treatment.

  • When I take my dogs to the vet, I get a diagnosis(with justification when its not clear cut), and then we discuss the options.

    If only I could find a vet to treat me.

  • Love it!

  • Ruthie, thank you for your comments. Of course in a very general sense you are absolutely right and for many years I have been taking responsibility for the thyroxine stuff, doing things that were not in the doctors playbook. However, the doctor who gave me the T3s demonstrated profound knowledge about all sorts of things related to thyroid (reverse T3, B12 deficiency, D vitamin and so one) while at the same time I wanted to believe what he was saying because of 40 years of feeling mostly like crap. It was a perfect symbiotic situation because I wanted T3 as a sort of last hope to fix my body. And it worked brilliantly, at least for a while. And yes, perhaps I should have done more research (like I usually do because as an academic at an Australian university that is what I am used to doing), but I really was that desperate to find a solution. But as I said, I do share your frustration about doctors and endos in relation to thyroid.

  • I think if you'd taken more T4 you would have felt better too. T3 isn't always the holy grail, but perhaps getting off levothyroxine and trying some NDT (natural dessicated thyroid which contains both T4 and T3) would be better for you. T3 is a natural high, it used to be prescribed as an anti-depressant, as did levo (less powerful), which is maybe why you felt well until you crashed. Start from the bottom - add a little T3 and see how you feel.

    Stay on a dose for a few weeks before raising, drop back if you start to feel worse.

  • Your bloods actually look good now (TSH isn't really important when you are on meds), but I suspect that such as large increase in one go was too much - usually you'd work up to it by adding a quarter of a T3 tablet and increasing each week. You also need ferritin, folate, D3 and B12 to be optimum in order for your meds to work correctly.

  • Hi drll,

    I have had a total thyroidectomy (cancer) .After many years of minimal energy my first experience of T3, post second surgery, was a revelation, I came to life. Needless to say, I was put back on thyroxine, became very ill and then had a huge battle with an Endocrinologist to get my T3 back. After trying to 're-introduce thyroxine at various levels at various times it became clear that I was only healthy with NO THYROXINE AT ALL. I have been happily taking T3 only now for over 5 years (now having to buy from abroad).

    Just telling you this so that you are aware that the thyroxine could be the problem and increasing your levels might be absolutely the wrong thing. I would keep taking a small amount of T3 and try reducing the T4. Increase the T3 slowly after a few weeks and reduce the T4 until you start to feel well. Unfortunately you are unlikely to get any official support for this action, but it's your body and we all know when it's running well.

    Keep an eye on your blood pressure, as you when you start to get your system up and running with T3 your blood pressure should come down (you might need to come off the meds).

    Good luck.

  • You could also have a defective gene called DI02 which means we cannot convert synthetic levothyroxine into sufficient T3. T3 being the only active thyroid hormone required in our billions of receptor cells. I am unable to get link at present so will have to reboot my computer.

  • I still cannot access TUK so, in the meantime, this is a past post which might be helpful:

    healthunlocked.com/thyroidu...

  • Drll, The second blood results you've posted do look quite good. The freeT3 is the most important number, and the rule of thumb is that it should be in the top third. The TSH doesn't really matter, it will likely end up well below 1.

    But I'm guessing that you didn't wait for 6 weeks on that dose to take the blood test? You need that or close to that for things to settle down and the test to be valid. If you had it much more quickly than that, it won't be accurate and it might be the levels would have ended up higher or lower.

  • You've had a horrible time and when you go to a doctor you expect them to know how best to treat you and it comes as a surprise that you have to research for yourself.

    I have a thyroid gland and I don't know how some can manage on levothyroxine alone when they have no gland.

    When you added T3 to T4. What combined dose did you take (of both T3/T4).

  • He gave me 20 mcg of T3 to be taken in 2 halves am and pm. I was taking 100 mcg L thyroxine but he also bumped that up by another 25 mcg. So the problem was that I went from 100 mcg T4 to over double that and that is why I wound up in hospital (125 mcg T4 plus 20 mcg T3 x4 to equal 80 mcg equivalent of T4 =205 mcg T4.

    With hindsight what I think should have happened is that

    1. I should have started of very, very slowly on the T3, only one dose per day.

    2. I should have reduced my T4 so that the total amount I was taking should have still equal the 100 mcg T4 I was on before I started this adventure. For example, if I started of at say 5 mcg (5x4=20 mcg T4) then I should have reduced my T4 to about 80 mcg or there about. Does that make sense? Its guesswork on my part.

    3. However, the other problem is the half life problem of T3. Day 1 T3 is 5 mcg in the example above, but on the second day it is 5 mcg of another T3 plus the 2.5 in your system from the previous day, and so on. Might not sound much, but on the second day that is 7.5 mcg T3 in your body or 7.5x4=30 mcg T4 equivalent. I think that this means on the second day of taking T3 I am starting to exceed the 100 mcg that I was taking before all of this, that is 110 mcg T4. Now I don't know how significant that is but over time it may very well be.

  • Your doctor probably had not much knowledge of using T3 and so you were on too high a dose of hormones altogether.

    There's absolutely no problems with T3 - it is absorbed into your system and there's a smooth transition and one dose lasts between one to three days.

    If you go to the date November 9, 2005 on the following link to read the q/answer.

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

    This is also a quote from the above link:-

    Dr. Lowe: The physician should call a pharmacy and request the leaflet given to patients when they pick up a Cytomel (T3) prescription. The physician would learn, as the patient leaflet on Cytomel explains, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." Other than Nystatin, he probably will find that no other drug he might prescribe is as free from adverse effects as T3. "

    This is another excerpt:

    In one study, a researcher found that T3 levels were significantly lower in 42 of 65 stroke patients. [Liang, D.S.: Stroke and thyroid hormones. Chinese Journal of Neurology & Psychiatry, 24(6):352-354, 384, Dec., 1991] It is certainly possible that the low levels of T3 were partly responsible for the strokes. It is well-known that low thyroid hormone levels result in high blood fat levels, and high blood fat levels predispose patients to heart attacks and strokes. By lowering blood fat levels, the use of T3 is likely to help prevent, rather than cause, strokes in some of the above-mentioned physician's patients.

    The use of T3 is even beneficial in patients with the most frail heart conditions. Researchers in one study reported, "Triiodothyronine [T3] administration in patients undergoing cardiopulmonary bypass surgery is safe, may lessen the need for pharmacological (vasodilator) therapy, but may increase heart rate." [Vavouranakis, I., et al.: Triiodothyronine administration in coronary artery bypass surgery: effect on hemodynamics. Journal of Cardiovascular Surgery, 35(5):383-389, Oct., 1994] "

    I had 10mcg added to a reduced T4 (75mcg). Before that I also tried NDTs but, for me T3 only has been a revelation.

    I now take T3 only once daily. This dose lasts between one to three days. For me it gives me normal life. It calmed all of my disabling palpitations and other symptoms.

    p.s. levothyroxine is the inactive hormone and has to convert to T3. Sometimes it doesn't do so efficiently particularly if we are on too low a dose..

  • If I understand you correctly, every day you take 10 mcg as one dose and you take 75 L thyroxine (so that is an equivalent of 115 mcg T4.)

    I think that this is what I was saying in point 2 above, that is, for every additional 1 mcg of T3 I take, I need to reduce my T4 by 4 mcg.

    Thanks Shaws, because that confirms what I need to do once the pressure in my head goes, hopefully sooner rather than later.

  • My combined dose of T4/T3 finished about five years ago and I've been on T3 only since.

    The quotes I gave above were from Dr Lowe who has since died and he was also an Adviser to Thyroiduk.org.uk

  • Sorry that you have been dealing with this for so long. I am going on year 5 with NO thyroid because of cancer. I have learned a couple of thiings in regard to your post. One is that if you start having rapid heart beat and cannot sleep at night, your doseage is probaby too high and the other thing is that low potassium levels can attribute to high blood pressure. Maybe have your potassium checked to see if that could be causing it.

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