Urgent advice needed please. Blood test readings advice. Very high T3

[Numberone1]

Ive received my blood test results from Blue Horizon this morning and Im very concerned.

I take T3 and have done for about 2 years. My levels have never been amazing but the last test I did, the T3 reading was above the range ie it was something like 12.3 and the top of the range was 6.8.

So, I halved my dose of T3 and a couple of months later have done another test. The results arrived this morning and I don't quite know what to do about them.

These are the figures: I know that taking T3 you should disregard TSH and T4 figures but I'll show them anyway.

FREE T4 L. 6.28 Range 12 - 22 (I know this should be low because of T3 only medication).

FREE T3 H. 22.87 Range 3.1 - 6.8

TSH High 6.68 Range 0.27 - 4.2

T4 TOTAL L 47.3 Range 64.5 - 142

Immunology

Anti-Thyroidperoxidase abs H 326.5 Range <34

Anti-Thyroglbulin Abs H 462.3 <115

Help me please. Is the "free" levels something different to what I normally ask for with the results and any suggestions as to what I should do now.

Many thanks

Susan

[jimh111]

Could be a number of things. Assuming you have not had similar results before narrows it down.

Did you take your thyroid medication (liothyronine?) within a few hours of drawing the blood? This would give spurious results. I think you should allow at least three hours between taking T3 and doing a blood test. I know a lot of patients would suggest a longer time.

Was this a finger prick test? It's only my view but I do not trust these to be accurate as there is too much scope for mistakes.

I can't think of any other reason you would get a single result with high fT3 and high TSH.

[Numberone1 in reply to jimh111]

Hi

Thank you for your response. I do know about taking medication etc before the test and for that reason I hadn't taken anything since the day before.

Also, I used the same method and the same company for the testing. I dont understand the dramatic increase when I had actually have halved the dose since my last test in July (that was a little higher than it should have been ie 12.6) which is why I halved the dose.

Any suggestions welcomed.

A bit scared now and assume I shouldnt take any T3 for a couple of days and then speak to someone.

[PinkNinja]

I think you need to get your pituitary checked. With a t3 that high your TSH should be suppressed but it is also high. I suspect your high t3 is due to your high TSH. Please get this checked by a due just to make sure there's nothing what going on like a pituitary problem.

[Numberone1 in reply to PinkNinja]

I have thought of that but I have never had this kind of high result of T3 before. It has suddenely raised. Before I was ever diagnosed I had very low ie below range T4 and I know that can be a sign also but I lived with that for 19 years!

Do you agree that I shouldnt take any more T3 for a couple of days at least? The thing is I have no symptoms of having a too high T3 ie racing heart, high temperature etc etc. I always thought I would know if the T3 intake was too high because of those tell tale symptoms. Also, because I only take T3, is the TSH figure inaccurate also?

I would also like to add that there has been a change to my diet and Im wondering if the high rate is because of that ie I don;t eat gluten now and I am on a very low calorie diet (still not losing weight). Therefore as my stomach is mostly empty and the lack of gluten I wonder whether I am just absorbing more.

[PinkNinja in reply to Numberone1]

I can't really advise as I'm not medically trained but usually TSH is below range on t3 but yours is high. Your t3 is very high for someone who hadn't taken any that day. These are very atypical results for someone on t3, hence my concern.

[Numberone1 in reply to PinkNinja]

I agree, totally confused and concerned. Apparently below range T4 with an ok TSH can be a sign of pituitary problems and I lived with that for about 19 years with no advice from GP. I have only recently discovered that. The doctor at Blue Horizon commented "this is not a straightforward set of thyroid test results". So confused. I have asked them to re test if possible.

[diogenes Remembering]

There is an unusual but not that unusual possibility. Some people on T4/T3 therapy make antibodies to them which actually bind the T4 and T3 to the antibody proteins - and thus give a very high protein-bound T4/T3 load. Some FT4 and FT3 tests are extremely sensitive to this and give extremely high spurious results. Strangely enough, production of these antibodies can wax and wane in the blood, and successive results can be weirdly different with the same dosages. It would be useful to know by exactly what method the FT3 and FT4 tests were done. Some are terribly sensitive to the phenomenon others not so much. If you could find an answer to a question to the diagnostic company " are your FT3 and FT4 assays one-step or two-step", that would be a helpful first start point. If one-step, then more likely to give problems than two-step.

[Numberone1 in reply to diogenes]

Thank you for that advice. Firstly I am not on T4/T3 therapy. I take T3 purely. I have a couple of questions I have put to them already and shall pursue with yours too. However, I have always had the tests done for the last couple of years by the same testing company so I would imagine if I had changed that source, I would understand different levels?

Im following the "how you feel" way of life with this damn illness and I can honestly say I feel well so this has definitely concerned me and my instincts.

[greygoose]

You do have Hashi's, so could it not just be a Hashi's flare? Just an idea.

[Numberone1 in reply to greygoose]

Never heard of that. What do I do? Is it dangerous like Thyroid storm? I don;t have any symptoms so not sure what to do with that one.

[greygoose in reply to Numberone1]

A Hashi's flare is when the antibodies attack the gland and damage a few cells. As the cells die off, they dump all their hormone into the blood. So, you go temporarily hyper.

I'm not sure what bloods would look like in that exact moment. But it does take the TSH time to adjust - it isn't instant. So, could be that for a brief moment, you would have high T3, high T4 (both from the hormone that's just been dumped) and a high TSH because it hasn't had time to catch up.

This is just a guess on my part, no research papers or anything to back it up. It just seems logical to me that this can happen - if you happen to do a blood test at just the right moment. But it could be a number of other things...

[Numberone1 in reply to greygoose]

This is all a nightmare isnt it because I can imagine cutting the T3 back because of these results and it only being temporary, then causing more problems because too low. I did have an instance a couple of weeks ago of weird palpitations that lasted for a few hours ie not fast rate but flopping over of heart feeling. Makes me wonder if that was the "flare". Can't be sure though can I.

What would you do? ie if it is just a temporary blip. I can't allow myself to walk around with T3 being that high though... I guess as my T4 isn't high but low, then it might not be that anyway.

[greygoose in reply to Numberone1]

Well, I can't really say, because I wasn't diagnosed until my gland was almost gone. I'd been putting up with the highs and lows for 50 years and told all sorts of rubbish about my symptoms - mainly that it was all my fault! So, I didn't have to worry about that sort of thing - be grateful for small mercies!

But I did over-dose T3 for a while - I'm on T3 only - and it didn't kill me. Perhaps, knowing that it's probably temporary, you could just stop the T3 for a couple of days, see how you feel, then start again at a lower dose and work up going by symptoms. I Don't see what else you can do. Apart from getting another test and see what's happening now...

[Numberone1 in reply to greygoose]

Yes I sort of decided to do that ie not take for a couple of days and work up. However as I have no symptoms I can't tell whether Im going too high again. As I said, a nightmare. Having said that a couple of weird things have happened, as I said above about the flopping heart, I have been getting weird electric shock type sensations every now and then throughout the body and also my memory has become dreadful lately ie dementia like although Ive put that down to menopause stuff.

So far as getting another test, I have only just had these results from a few days ago and I have asked Blue Horizon to possibly re-test - they did offer. But I shall definitely get the test done in a couple of months after lowering everything.. Such a nightmare because I go to the US in a few days and I don;t want to be feeling unstable ie when my thyroid is low I get extreme anxiety and panic attacks. Also when the T3 was around the top of the range, I developed weird breathing stuff going on which caused a heart scan to be done. I can't bear to think of that starting up again while Im abroad.

Thank you for your help so far. Why have doctors said its all your fault? I was all ready to go to my GP with super duper results and now I can't!

[greygoose in reply to Numberone1]

Why was it my fault? Because I was stupid, greedy, lazy, hypochondriac, hysterical, neurotic, and there was nothing really wrong with me, I was imagining it all! Take your pick! I was finally diagnosed at the age of 55. Nobody thought to do any tests before that!

Electric shock type sensations... Have you had your B12 tested? Your potassium? Sodium? Do you supplement with magnesium? Sounds more like an electrolyte/vitamin/mineral problem rather than a hormonal one.

OK, so you do have symptoms when you're getting too high : breathing problems. The 'flopping heart' I do tend to associate with over-dosing, too - although it's not a medical term. lol I do think I know what you mean.

But, then again, heart problems can be due to low B12 or iron, or magnesium, too. So, the only way to find your way though all that is more testing, I'm afraid.

[Hidden]

I would suggest that you don't try and figure this out yourself. You need to see an Endo. X

[Numberone1]

Sadly my GP won't refer me. I have an under active thyroid and you don't get to be seen by an endo. I feel something strange has happened though, that after 2 years of feeling ok on T3, something crazy has happened to unswerve them.

[Girlscout2]

Hi there

Your antibodies are high, you have hashimotos disease (high TPO and high TgAb) - what is your doctor proposing to do about that? Do you have any swelling or pain in your neck? Have you had an ultrasound or a scan?

You might, as others have said, be in an upswing of hashitmotos, and your thyroid - as part of its death rattle, antibodies will eventually destroy your thyroid - could be spitting out hormones.

Why are you on T3 only if you dont' mind me asking?

GS

x

[Numberone1 in reply to Girlscout2]

My doctor has proposed nothing. I have never been told I have this issue. I did the test myself and hope to think that the GPs have done it in the past also. I have never been offered a scan but equally I don;t have any swelling or pain. My Aunt had a goitre when she was diagnosed underactive. I wanted to go to my GP with my amazing test results which I have collected over the last couple of years but these latest results have scuppered it all. Its now important to get my T3 down. What I don't get is that the last results in July showed a higher T3 but equally a high TSH. I halved my dose of T3 but now the T3 result is even higher! Also my TSH is still high and I really don;t understand that. If Im going to my GP with these things, I need to understand what Im saying.

The reason I am on T3 only is because T4 made me really ill. I literally hurt everywhere, I piled on even more weight, I felt old and puffy. I tried different forms of T4 prescribed by my GP, even Eltroixin only. However, I went outside for more advice and it was decided that the more T4 I was on, the worst it got because I wasn't converting it, so I take T3.

What can be done with Hashimotos disease? Is there a protocol? Isnt it quite common?

Susan

[Girlscout2 in reply to Numberone1]

Hi

Have you read Colin Dayan's paper (endo prof at Cardiff I think) in the lancet on interpretation of thyroid function tests? Here it is: keck.usc.edu/en/Education/A...

If you scroll down you'll see that there's section on raised TSH and raised FT3 or FT4 - one of the reasons for this is the interference of TPO antibodies which you have a lot of!

Did you ever try natural thyroid, many hashis patients get their antibodies down with sufficient doses of NDT. Other have good results with LDN (but it doesn't suit everyone as can increase cortisol as it did in my case).

I think your antibodies are interfering with your blood assays. Do you feel hyPER? What symptoms have you got going on?

I think in some rare cases T3 only seems to be the only thing that works for some people, as a general rule I think too many people are doing T3 only and it's not without significant risk (it can mess up all kinds of things in your body, and the body also needs T4 which has important functions in and of itself). I could not tolerate levo at all, and I had my thyroid surgically removed, so that was a scary place to be, I seem to be doing fine on NDT, but took a while to get my body to the point where it could use it. I had galloping Graves and Hashis (so my antibodies were in the thousands) ...

How are all your co-factors such as vits, minerals, iron, b12, vit D etc? What are your iron levels? Do you know?

I think in this case the antibodies have a huge amount to do with it, and your thyroid will be inflamed too .... And yes hashitmotos is the most common cause of hypothyroidism.

Hope that helps a bit,

GS

x

[Numberone1]

Oh wow?! I guess he is under proper supervision with that high amount of T3? I don;t fancy medicating myself with those levels.

I may say I have not symptoms but on the other hand do I? However, if the amount Im taking is giving me a very high T3 level, it does mean Im absorbing it but its not converting probably because the TSH is still bad at 6.5. I assume your son takes that high dose but its not changing his T3 levels?

It scares me really. What is the symptom of over stimulation? And why has it suddenely shot up? My pulse rate is not racing, my heart isnt racing but my joints are still painful (overdose of T3?), I still can't lose weight on only 600 calories a day.

Such a shame I can't get the right answers from my GP who wont refer me anywhere.

[Numberone1]

Interesting about your Son and I have sort of replied to your comment below. But can you tell me whether the fact that he was reduced sensitivity, that his TSH in the meantime remained high. Did he have any symptoms with such high Free T3?

[Numberone1]

My daughter is type 1 diabetic but does manage to control it. My Mums sister has been hypothyroid for many years and had extremely bad health, could hardly walk etc. I have no idea why cant of protocol she followed but the chances are she just followed what the doctor said and still dealt with all the pain she suffered. She now has coeliac disease.