Urgent advice needed on labs - very very high F... - Thyroid UK

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Urgent advice needed on labs - very very high FT3, I'm freaking out.

Charlyemmalouise profile image

Hello,

Below are the results of my labs I had done this Friday. I have been taking T3 only for a year. I kept increasing the dose because I don't have any symptoms of hyperthyroid or too much T3. My pulse is around 60, blood pressure is very low, BBT around 36, and that is only recently since I had a vitamin D injection. Before that, BBT was 35.0 for months and months...

I got up to 150mcg total but I have now reduced that to 125mcg. On the day before the test, I took 75mcg at 6pm and 25mcg at midnight. So 9 hours approx between last dose and test. I normally take it all in one go.

I expected my T3 to be high, but not this high. I am freaking the f*ck out. Panic stricken. Please advise how to lower the dose. That's what needs to happen right? I also have awfully high blood sugar which I have found out is strongly linked to too much T3 in the system. I'm very insulin sensitive so I don't have type 2 diabetes.

I'm underweight too. But everyone in my family is skinny. My mom weighs almost the same as me and is around the same height, and she eats well.

Please be gentle with your words - I am already terrified by these results... really really upset and shocked :o

And lastly, thank you. This forum is amazing. So glad I found it.

CRP <0.3 (<0.5)

Ferritin 120 (13-150)

Magnesium 0.88 (0.7-1.0)

Cortisol 325 @ 9:35am (166-507)

TSH 0.04 (0.27-4.20)

T4 total 21.8 (66-181)

Free T4 3.3 (12-22)

Free T3 18.4 (3.1-6.8)

Anti-Thyroidperoxidase abs <9.0

Anti-Thyroglobulin Abs 14

Vitamin D 213 OPTIMAL

Vitamin B12 1476 HIGH (145-569)

Serum folate >45 (8.83-60.8)

ETA: I have been doing B12 injections... I will stop now! And I have not had any biotin at all, so that is not interfering with results :)

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greygoose profile image
greygoose

I'm sorry you're so shocked and terrified by these results, but remember that a blood test is exactly that: a measure of what is in the blood. And T3 in the blood doesn't do anything. It has to get into the cells to be active. And, unfortunately, there is not a test to tell how much gets into the cells. So, it could be that you have some degree of thyroid hormone resistance, and not much of the T3 you are taking actually gets into the cells.

How did you increase your T3? By no more than 5 mcg every two weeks, or less? Could be, if you increased faster than that, and didn't allow your body time to adjust - especially as the dose go higher - that you missed your sweet spot.

You say you don't have any symptoms of over-medication - those aren't always easy to spot - but do you feel well? That's the most important thing. No trembling of the hands?

In any case, don't fret about it, just stay calm and assess what is really going on in your body. :)

Charlyemmalouise profile image
Charlyemmalouise in reply to greygoose

No trembling of hands whatsoever. I started T3 at 25mcg (cytomel), and didn’t feel a difference whatsoever for a month (maybe more, can’t remember).

Then I switched to liothyronine, the only kind I could get, in 50mcg per tablet. TINY TABLETS so it was just not possible to split, even only in half! So I went up to 50 overnight. And then still felt lousy, so went up to 100. Eventually 150. My vitals barely budged. That’s how and why it happened that fast/dramatically.

I have lost weight. But I also amended my diet, exercise a LOT, and do ashtanga yoga every day. I walk about 8 miles a day when I have energy. So I can’t say the weight loss is 100% due to t3.

Any suggestions for where to go from here?

Thanks for your reassuring reply. I have been losing my mind with worry, didn’t even want to post the result 🙄

SeasideSusie profile image
SeasideSusieRemembering

Charlyemmalouise

It's a shame you deleted your other thread because DippyDame had responded and she has experience of thyroid hormone resistance. I have tagged her so hopefuly she'll come along and comment.

Vitamin D 213 OPTIMAL

Vitamin B12 1476 HIGH (145-569)

Serum folate >45 (8.83-60.8)

ETA: I have been doing B12 injections... I will stop now!

All these are high.

What exactly are you supplementing with? Besides the B12 injections it looks like either B Complex or folate and Vit D.

Were you self injecting B12 because of B12 deficiency/pernicious anaemia.

Vit D is on the way to toxicity, which is suggested to be a risk when level reaches 220nmol/L. I would stop this now if supplementing and retest in the autumn/beginning of winter to check your level then supplement during the winter months if necessary. Recommended level is 100-150nmol/L according to the Vit D Society and Grassroots Health with a recent blog post on Grassroots Health recommending at least 125nmol/L.

Ferritin is good, is that a natural level or are you supplementing for that?

Charlyemmalouise profile image
Charlyemmalouise

I have heard from dippy dame and her resistance :) in a previous thread. I’m not sure that I have the same due to my elevated blood sugar, which would seem to suggest hyperthyroidism. Confusing bcos I don’t have any other symptoms of hyper! I sleep 9-10 hours a night and don’t feel jittery or anxious unless I’ve had a bucket of coffee.. happens sometimes..!

B12 I’ve been injecting due to suspected pernicious anemia or malabsorption. I had an ED for almost 20 years and vomited 10x a day for 10 of those years, so my digestion is weak.

Vitamin D - I had an injection for the first time ever about a month ago when I legit thought I was going to die. I was so weak. Could barely walk down the street. 1 week after the injection (200,000 IU) I was feeling the best I’ve felt in months and months and months. Depression and brain fog lifted. I had boundless physical and mental energy all day and into the evening… so I decided I probably had been D deficient! But after one week of feeling amazing I felt like crap again. Although the brain fog lifted and I have def felt better than before, but still went very much downhill. I got one more injection in the hope it would fix me again, and then did these bloods about ten days later.

Ferritin is naturally high. Actually I am shocked because the last time I checked ferritin it was 12! And this was only 10 months ago. I was also anemic with low hematocrit. I may have a full iron panel done because I have struggled with anemia my entire life, largely due to the ED.

I know my actions may seem extreme but I have been desperate.

Folate - I have not been supplementing specifically. But I take a high quality multivitamin. It’s 60 pounds for a one month supply so it’s not cheap, and I did a lot of research into the brand. I take it a few times a week.

greygoose profile image
greygoose in reply to Charlyemmalouise

I can understand being desperate, but that doesn't make increasing too quickly a good thing to do. And due to that, frankly, no-one can have any idea where you are right now. For how long had you been on a steady, unchanged dose when you did these labs? And, how long did you leave between your last dose of T3 and the blood draw?

But you didn't say how you feel now. Do you feel good? Or do you still feel bad?

It doesn't matter how much a multivit costs, it's still usually a bad idea for all sorts of reasons. Which one are you taking? What are the ingredients?

Charlyemmalouise profile image
Charlyemmalouise in reply to greygoose

I have been steady on 125 for a month. Before that was steady on 150 for four months.

There were 9 hours between last dose of t3 and the blood draw. The night before, I took 75mcg at 7pm, and 50mcg at midnight.

I normally take it all in one go, 125mcg at 5pm.

I have since reduced the dose to 112.5. And actually I feel ok. Not amazing, but not bad. For months I have been feeling good until I eat a meal, and then crash massively, which I put down to a blood sugar/metabolic issue probably tied somehow to thyroid. I have been feeling better for sure since I went down to 112.5. The post meal crash isn’t so severe.

The multivit I’ll take a pic when I get in!

greygoose profile image
greygoose in reply to Charlyemmalouise

One month is not really long enough for testing. It should be at least 6 weeks.

That's rather a large reductions should be no more than 5 mcg, just like increases. So, if I were you, I'd stick at that for six weeks, and then retest and see how you are. :)

Charlyemmalouise profile image
Charlyemmalouise in reply to greygoose

Stick at 112.5? :)

greygoose profile image
greygoose in reply to Charlyemmalouise

Yes, for now.

Charlyemmalouise profile image
Charlyemmalouise in reply to greygoose

Here is the multi. This bottle has lasted since October lol I barely take them! Not helpful that the label is over the %NRV

Vitamins
greygoose profile image
greygoose in reply to Charlyemmalouise

Well, it's not as bad as some, granted, but really not worth the money.

For a start, it contains iodine, and you really shouldn't be taking that as you're hypo. You'll already be getting 60 mcg iodine from 150 mcg T3, so even though you've since reduced your dose, you won't be short of iodine because it's recycled in the body. Plus what you get from your food. And, as you're taking a high dose of T3, your thyroid will have stopped making thyroid hormone, so you need less iodine, not more. Excess iodine can cause all sorts of problems.

On the other hand, it doesn't provide enough B12 to treat a deficiency, and your body won't be able to use that B12, anyway, because the multi contains vit C, and the two should never be taken together.

It contains vit D, but not it's cofactor magnesium, so you'll be running short of magnesium. So, all in all, you won't be getting your money's worth out of this supplement.

Incoguto profile image
Incoguto in reply to Charlyemmalouise

For me the post meal severe crash happens when overdosed. When I reduce dose, it goes away

Charlyemmalouise profile image
Charlyemmalouise in reply to Incoguto

Wow thanks for writing this! Not heard anyone else complain of this symptom before! I firmly believe it to be linked to high blood sugar.

I wore a CGM (glucose monitor) for two x two week periods. They were spaced about 6 weeks apart.

Both showed my BG to be running high, but the second period it was much much higher. Well into the diabetic range. And it was during the second period that I truly felt the worst I have ever felt. Fatigued, weak and dizzy after meals. I removed carbs from my lunch and it helped a little, but not as much as I’d hoped.

I’ve decreased my dose from 150 to 112.5 and I definitely am feeling better! There is hope! Thank god. Life in that state was not worth living.

Thanks for this response. Are you on t3 only?

Incoguto profile image
Incoguto in reply to Charlyemmalouise

No worries at all, have you checked insulin? It can skyrocket when overdosed as well.I'm on Armour and a tiny bit of levo. I take about 25 mcg t3 within Armour.

Glad you're feeling better!

tattybogle profile image
tattybogle in reply to Incoguto

Now you come to mention it.. i wonder if that was true for me too .. hard to say for sure because i'm less physically active nowadays and i've moved the time of day i eat... but a few years back i had big problem with crashing after eating a meal ( going very cold about 20 minutes after eating a meal and really needing to go to sleep for an hour )I'm now on a slightly lower dose of Levo for last couple of years .. and it doesn't happen anymore ,,, could be just cos i've changed my lifestyle / mealtimes though .... but it's interesting .

Incoguto profile image
Incoguto in reply to tattybogle

That's it, I would also feel cold, then hungry, tired, moody. I'm still adjusting my dose and in the last two weeks I have been hungry all the time, irritated and had to pee 20 times a day no joke. Turned out I was a bit overdosed

tattybogle profile image
tattybogle in reply to Charlyemmalouise

symptoms of overmedication can be tricky to recognise .. they don't always follow the classic pattern . But the fine tremor one is often pretty reliable: hold arms out in front . palms facing down , fingers loosely outstretched ..look for very fine tremor in fingers .. (balancing a sheet of paper on the back of the hand can make it easier to spot if doing the test on yourself )

i've been overmedicated on levo, and felt lousy , but my heart rate wasn't fast , my blood pressure was fine and i didn't feel 'hot '

i had symptoms of pain that felt like kidney stones and a rather overactive and uncomfortable/tense bladder. I had lost weight , but i wasn't eating much as i had no appetite . I was very weak and struggled to walk to the shops . i was very jumpy if startled . sudden noises would literally make me jump .

i did have more frequent bowel movements that usual , but not to the point of diarrhoea .

All this lot had the GP's thinking i had cancer somewhere so they sent me for all sort's of tests .. and to be honest i felt so lousy i did wonder that myself .. but it was just slight over medication and everything was improved after a few months on a slightly lower dose .

it was an elderly GP who spotted what it really was ... by asking me to hold my hand out an d noticing a very fine tremor that i hadn't noticed myself... it's not like a parkinson's tremor.. it's nearly invisible.

So keep an open mind to the question of "do you have symptoms of overmedication?" .... your report of 'feeling so weak you could barely walk down the street' could be overmedication.

Don't expect overmedication to feel like 'too much energy/ anxious/ jittery '... i'm my experience it feels like you're dying and you're exhausted .. and you brain doesn't work , and neither does your body ... it could quite easily be mistaken for under medication until you know what your own subtle reactions to it are.

DippyDame profile image
DippyDame in reply to Charlyemmalouise

OK, I'd forgotten that I responded to your earlier post!

That post obviously failed to resonate!

Are you perhaps trying to fix too many separate things with a common cause instead of fixing the common cause itself!

You are treating "suspected" conditions eg PA, not a specific diagnosed condition.

Follow Seaside Susie's excellent advice above regarding your nutrients

In one way or another many of us have probably felt as you do....at one point I could see no way out of my poor state of health and medics were no help.

Confusing bcos I don’t have any other symptoms of hyper!

That's because you are not hyperthyroid! It is confusing when "hyper" is so often used to describe overmedicated!

Finding this forum and the generous and knowledgeable members here probably saved my life

I carefully followed advice, read extensively and eventually discovered the missing pieces of the puzzle. Unfortunately it took me until the age of almost 70 to realise and accept that doctors don't always know best.

Some damage is irreparable now but I'm delighted with what has improved....my body and brain function again! Thank you TUK!

I have heard from dippy dame and her resistance

But are you now aware of what that "resistance" is, what has caused it and how it can be overcome?

It can result in cellular hypothyroidism...not glandular hypothyroidism and therein lies the difference.

rejuvagencenter.com/thyroid...

The link to Tania Smith's article that I gave you below is also worth reading.

Accept that there is no quick fix then concentrate on working very slowly to put things right ...untangle your issues, one thing at a time.

I expect I've said more than enough ...so rant over and best of luck!

Charlyemmalouise profile image
Charlyemmalouise in reply to DippyDame

Oooh my dear, your previous response definitely resonated! And I read every article you sent to me :)

I understand the concept of cellular vs glandular hypo. Like I said, I read all the materials you sent…

Please don’t think I was not grateful!

I appreciate each and every anecdotal piece of advice - truly.

I am just working on a gut feeling that I’m over medicated, particularly due to the blood sugar issue, which is closely tied to having high t3. At a long period of 150mcg I got muscle wastage

Also the overwhelming consensus of people on the forum was overmedication. And these bloods are alarming with my ft3 at three times the upper limit! My heart dropped like a stone when I saw that 🆘

Can I ask if you ever had lab work done when you were at 200mcg?

And yes. I’m aware that I am guessing on various issues like PA due to symptoms rather than bloods. I was so severely ill with eating disorders that I lost trust in my body to absorb anything.

But believe me I will not be doing this anymore! Lesson learned!

DippyDame profile image
DippyDame in reply to Charlyemmalouise

I didn't think for a moment that you were ungrateful....just very anxious and confused! Absolutely understandable when you feel rubbish.

Lab work on 200mcg T3 would have returned with TSH and FT4 on the floor and FT3 in orbit...so no tests. Just careful monitoring of signs and symptoms, as mentioned.

RTH or not.... now that you also add you experienced muscle wastage that signals overmedication ...a red flag!

In your shoes I would do what I suggested above...(advised by a reliable medical source, others may suggest it's too fast but it did me no harm)

Stop all T3 for a couple of days then restart at 50mcg

Tests will be fairly reliable when on 50mcg

Test after 6/8 weeks

Then very slowly increase by 5mcg doses every 6 weeks

There is no quick fix

Increasing faster and with bigger doses can cause you to miss your " sweet spot"

I'd be inclined to concentrate first on getting your dose right then see how your symptoms pan out.

Your poor body is probably rather confused right now!

DippyDame profile image
DippyDame

OK! Stop panicking and breathe!Been there!

I self medicate but read a great deal before starting out....and since.

I had reached 212mcg T3 and finally felt overdosed so knew I had to cut back.

I was advised to stop T3 for a week but I only managed 4 days!

I started again on 50mcg and gradually built up the dose again....now managing on 100mcg with occasional small tweaks.

We aim to find out the smallest dose we need...not the biggest dose we can tolerate!

It's tricky and involves trial and error.

If one is HYPOthyroid then it is almost physically impossible to become HYPERthyroid

You may instead be overmedicated....or not!

Do you feel well?

If you have a type of thyroid hormone resistance - RTH - ( as I do) then you will need a supraphysiological dose of T3 to overcome that resistance.

Do you know if you have RTH?

Tolerating a supraphysiological dose is basically the clue!

Thyroid tests were not designed for T3 only treatment

We have to monitor and dose by signs and symptoms...good old fashioned clinical evaluation.

People with RTH can tolerate doses of T3 which would be dangerous/ fatal in other circumstances.

The large dose of T3 is needed to act as a " battering ram" against the cells

The force (or size of dose) helps push at least some of that dose into the cells from the serum which carries the T3.

The remainder sloshes around in the serum until it is metabolised and eventually excreted by bowel and bladder.

T3 does not become active until it reaches the nuclei of the cells, via T3 receptors.

This helps explain why it is necessary to take a high dose of T3 ( this will depend on the severity of the resistance) to overcome the resistance

It also explains why RTH patients( on the correct higher dose) do not become overdosed...

The dose should be large enough to overcome the resistance but not so large that an excess of T3 reaches the nuclei causing overdose when the hormone becomes active.

On T3-only both TSH and FT4 fall...mine are ( almost) off the scale!

This is just how the body works.

My GP freaked out at my high FT3 and sent me for a heart scan....all in good order

Low weight can be a symptom of overmedication...but your family are thin!

I lost over 2 stone when correctly medicated!

My heart rate is also close to 60bpm...so no racing heart rate

Do you have hand tremors?

Arms outstretched, palms down, thumbs close together

A sheet of paper laid over the backs of your hands should remain steady if not overdosed.

Yes, time to rethink B12 injections...are they prescribed?

No evidence of autoimmune disease/ Hashi's

Clearly I cannot diagnose...I'm not medically qualified this is just my personal experience

Make of it what you will!

My thyroid journey is further explained in my profile

This might help

thyroidpatients.ca/2019/08/...

Hope this helps....but be prepared to face opposition from medics!

After discussion/ explanations mine leave me to it now!

Hope that is gentle enough!!

Charlyemmalouise profile image
Charlyemmalouise in reply to DippyDame

How does one define ‘tolerating’ high doses of t3? I was taking 150mg for months and felt fine. Didn’t start to feel like I was dying slowly for a very long time.. I guess it built up in my system or the effects of overmedication did.

You say to first get the dose right and then work on symptoms. But how do I know when the dose is right when all I really have to go on is my symptoms? Would really love your thoughts here!!

I went down to 112.5 for the last week and INSTANTLY felt much better. No crashes after eating, felt strong and weight went up by 1kg.

But now I’ve lost that kilo plus another half kilo which for me is really not good!!! My bmi is 17.0 and I look AND feel like death again. I woke up about 40 million times during the night last night and have a blaring headache, am crushingly fatigued and don’t want to be alive today. And I took the same dose, did all the same things, ate the same food (organic, gluten/dairy free healthy foods!!!) as I have been for the past week. This is all SO confusing and overwhelming when I feel so monumentally lousy. I’m thinking of coming off the t3 for some days like you did and then going down to 50… how did you feel when you did that?

Thank you for all of your advice!! I really don’t know what I’d do without this forum right now

DippyDame profile image
DippyDame in reply to Charlyemmalouise

How does one define ‘tolerating’ high doses of t3? An indication that you may possibly be able to cope with a lower dose than you are taking despite the fact that you are tolerating a higher dose.

Less is sometimes more!

I found that I was tolerating 212mcg until it became clear that it was too much.

I don"t think it has anything to do with T3 building up in the system

The half life of T3 is only about 24 hrs.

The reason is more likely to be that some of the T3 receptors become inactive as a result of low T3 supply in the serum...which in turn would mean less T3 entering the cells and therefore affecting health.

The original large dose may after some time help to reactivate at least some of the dormant T3 receptors resulting in the need for less hormone.

More active T3 receptors = more T3 in the cells.

I imagine this eventually settles to a point which ensures any remaining resistance is overcome by a lower T3 dose than before.

This has been my experience, explained in very basic lay terms...but I've read of others here who have experienced a similar reduction in dose required to resolve symptoms.

You say to first get the dose right and then work on symptoms.

Sorry! I cannot see where I said those words!

On higher doses of T3-only ( I.e amounts that take FT3 above ref range) we have to monitor the dose according to symptoms (ref Dr John Lowe)

You reduced to 112.5mcg and felt better immediately...good, but far too soon to be sure! Again time is needed to allow the new dose to settle.

There is no quick fix!

But! It sounds positive.

Weight can vary by a kg fairly readily, so I wouldn't hold too much sway by that.

However it could indicate that the high dose was causing you to lose too much weight...metabolism in overdrive!

I reached that point but quickly realised what was happening....why I started to reduce my dose.

You say you are eating "a healthy diet".... by that do you also mean that it is a balanced diet! Also, essential that vit D, vit B12, folate and ferritin are optimal to support thyroid function

And, have you been over restricting your calorie intake ?

Instead of looking at the whole problem as a massive ball of tangled threads we need to slowly unpick the threads and try to straighten them out one at a time...easier said than done when you feel totally rubbish!

I can't emphasise enough that I am not qualified to advise this is just my personal experience but in your shoes I would aim to reduce your dose, wait 6 weeks( 4 at the very least if it gets to be difficult) then review the situation before considering an increase...5mcg at a time. More and you may miss your sweet spot!

It can be a long hard slog...been there!

But if you don't try you will never know.!

Unfortunately, as we often repeat.... it's a case of trial and error....and time,

Sorry this has turned into another DD-rant!!

We understand how devastating this can all feel....but there is light at the end of the tunnel. Hang on in there!

Over medication on thyroid replacement for me gives me itchy skin and dizziness. Also a weird look in my eyes that my husband and best friend notice (I don’t). Chest palpitations.

Under medicated gives me flaky skin like snow, palpitations in my ears, cracked lips, need to sleep all the time etc

It’s useful to identify your own body’s under / over medicated symptoms I find.

Your doses of Liothyronine sound truly enormously high.

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