Clueless: My TSH readings started out at 0.02, my... - Thyroid UK

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Clueless

Pictur profile image
60 Replies

My TSH readings started out at 0.02, my T3 was 5, and my T4 was 22. My medication was reduced from 150mcg of levrothryoxine to 125 mcg. Each reading after that my medication was the. Reduced to 100 CD, then to 88 mcg. My last reading in July my TSH was 0.11, my T3 was 4.3 and my T4 was 17. My meds have now been reduced again to 50 ,CD. What is going on with my thryoid? I am getting g hot flashes, roaring in ,y head.

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Pictur
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Nanaedake profile image
Nanaedake

We would need to view your thyroid blood tests along wiith the lab ranges, which you need to add next to the test result, to make sense of your tests. In addition, do you have thyroid antibodies results?

Pictur profile image
Pictur in reply to Nanaedake

The ranges for TSH (0.35-5.00), T3 (3.4-5.9) and T4 (12-22). In Sept TSH was 0.02, T3 was 5.0 and T4 was 22. O

I was on 150 mcg of levrothryoxine. It got reduced to 125 after these readings. In Jan my TSH was 1.3, T3 was 3.8 and T4 was 15. Again. Ed’s were reduced to 100mcg. In May my TSH was 2.65,T3 was 3.3 and T4 was 11. Again meds were reduced to 88mcg. InJuly my TSH was 0.11, T3 was 43 and T4 was 17. Again meds reduced to 50mcg. Just went for another blood test last week. Haven’t got results yet. I feel li,e I did when I was hyperthyroid, having hot flashes and Roark g inside my head. can you shed any light on what. Ishtar be happening.

Pictur profile image
Pictur in reply to Pictur

In July the T3 was 4,3 not 43

helvella profile image
helvellaAdministratorThyroid UK in reply to Pictur

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Nanaedake profile image
Nanaedake in reply to Pictur

Have you got thyroid antibodies? Have you had TPO and TgAb antibodies tested? You say you've been hyperactive in the past. So, have you been treated for an overactive thyroid previously?

What medication are you taking in addition to levothyroxine? Have you had vitamin levels tested? I ask because all these factors can affect how your thyroid is working so for a full picture you need more details.

The results you give above show thyroid blood test results fluctuating with thyroid function dropping on a reduced dose of levothyroxine in Jan and May and then recovering in July despite a further dose reduction. There could be various reasons for it so more info is needed. Do you always do blood test fasting and at the same time of day?

Pictur profile image
Pictur in reply to Nanaedake

no I have only had my TSH, Free T3 and Free T4 tested. I was on the higher dose of levrothryoxine probably for about 4 years. My dr. never tested my thryoid for 4 years. I told him I wanted it tested. That’s when the first TSH reading was O.02. He sent me to an endrocnologist who said I was hyper thryoid and started the first reduction in meds. I have had no other tests for vitamins. it just seens that no one understands how the thryoid is supposed to work and we suffer for their lack of know.edge.

Nanaedake profile image
Nanaedake in reply to Pictur

Well, you can't be hyperthyroid if you have hypothyroidism. You can be over medicated but in September your FT3 was within the lab range and your FT4 was at top of lab range. If it were me with those results, I might have just slightly reduced my meds by 12.5 mcg but no more and then retested in 6 weeks.

Presumably you asked for thyroid tests because you had symptoms is that right?

You definitely need antibodies and vitamin levels testing. Ask for TPO and TgAb antibodies, vit D, B12, folate and ferritin to be tested. When you have results then post here so people can help you make sense of what's happening.

What were your thyroid test results when you were diagnosed hypothyroid? Have you got a copy? If not then I would get hold of a copy with the lab ranges.

Does your endocrinologist think you were wrongly diagnosed as hypothyroid because he/she has reduced your meds down to what is considered a starter dose of 50mcgs.

How are you feeling now?

Pictur profile image
Pictur in reply to Nanaedake

I see my dr. next week. I will ask for those tests. I am getting hot flashes (way past menopause) but feels the same. I have a roaring in my head when I stand up. I am very irritable which is not like me. I have a headache all the time. Thank you for your advice.

greygoose profile image
greygoose in reply to Pictur

Sounds like you have very low blood pressure - a classic hypo symptom.

Pictur profile image
Pictur in reply to greygoose

Never thought of that, it is possible though. I will post my recent test results next week, hopefully things get better.

Nanaedake profile image
Nanaedake in reply to Pictur

I think the Endocrinologist is making you ill.

greygoose profile image
greygoose

Actually, it's your doctor that is clueless. He doesn't know that he shouldn't be dosing by the TSH. Difficult to say without ranges, but your Frees sounded good at 5 and 22. But, his majesty didn't like the suppressed TSH, meaning that he knows nothing about thyroid. So, now he's intent on making you ill, just to get your TSH back in range.

The TSH is of little use once you're on thyroid hormone replacement, unless it's high. If your Free levels are good then it's more than likely that your TSH is going to be low - you can't have it both ways. But, as he doesn't understand how it all works, he is sacrificing the Frees on the alter or the TSH. Can you change your doctor? This one is going to make you very sick.

Pictur profile image
Pictur in reply to greygoose

I have been doing so,e research and read that if you are on Metformin for type 2 diabetes that it can cause low TSH levels. Is that true and if so what course of action would be recommend dead?

greygoose profile image
greygoose in reply to Pictur

I don't know much about Metformin, but I have heard that, yes. In which case, you ignore the TSH and dose by the FT3 - which is the most important number, anyway. The TSH has little value after you start thyroid hormone replacement, at the best of times. And, doctors are so very wrong to dose by it.

Pictur profile image
Pictur in reply to greygoose

Thank you so much for taking the time to address my concerns. I feel so much better being more informed by people who know so much more than drs. There is so much info out here at times it is overwhelming.

greygoose profile image
greygoose in reply to Pictur

Indeed it is. And it takes a while to learn to pick out the wheat from the chaff! :)

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin D, folate, ferritin and B12

Likely to be low when under treated

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to regularly retest vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Marz profile image
Marz

In your last post of 10 months ago - it was suggested you had anti-bodies tested and the very important B12 - Folate - Ferritin - VitD. It seems this has not happened - good levels of vitamins and minerals will help your thyroid hormones to work better in the body - both your own and the ones you take. If you cannot find your last post - click onto your username ! 🤩

boru profile image
boru

Have you been taking biotin at all leading up to testing ? Large amounts of biotin through food or supplements will skew thyroid blood tests.

greygoose profile image
greygoose in reply to boru

The results aren't skewed, they're pretty logical. It's the GP that doesn't understand thyroid.

boru profile image
boru in reply to greygoose

Well, that’s a given: re Doctor. However, biotin can fog the picture even more and throw doctor and Patient off alike.

Found even a cup of blueberries in a shake have thrown personal results off.. & supplements have taken several weeks to clear out of system.

greygoose profile image
greygoose in reply to boru

Agreed. But the results are not skewed. They are logical.

boru profile image
boru in reply to greygoose

I dunno, the results look a bit weird to me, worth asking the question and hearing the answer before assuming. something not right, on a T4 medication (no t3 to automagically suppress Tsh) and reduced t4 quite a bit and TSH still very much suppressed ...

Wonder if testing is occurring after taking thyroid pill. That might explain

a bit too.

Clueless let us know when you’re getting blood test, and whether you’ve taken thyroid meds beforehand.

Generally you should be waiting a full 24 hours after taking thyroid to have blood test.

greygoose profile image
greygoose in reply to boru

What, exactly, is it about these results that bothers you? What do you think is wrong? The suppressed TSH? The TSH is a very unreliable indicator of thyroid status.

If the blood draw was too close to taking the levo, it would give a high FT4, it wouldn't affect the other results.

boru profile image
boru in reply to greygoose

Sure it does.. t4 will lower tsh soon after taking it especially 4 hours after. Seen it a number of times personally ..

And it won’t necessarily give a high (Above range ) t4 , any increase can be completely within the range... t4 is built up over several weeks not one dose..

We are not sorcerers 🧙🏻‍♂️ here and can read minds etc ..

Best to get answers from clueless and respond accordingly.

Biotin consumption or taking meds before test are critical pieces of information needed to help.

greygoose profile image
greygoose in reply to boru

Sorry, but TSH does not move that fast. It takes days rather than hours.

Who is clueless? The OP is called Pictur.

Biotin consumption or taking meds before test are critical pieces of information needed to help.

Of course they are. But, I'm pretty sure they don't apply here.

Simba145 profile image
Simba145 in reply to greygoose

Greygoose if you lowered you Levo intake how long would it take for your tsh to rise to whatever the new baseline is?

greygoose profile image
greygoose in reply to Simba145

Impossible to say. Sometimes, if it's been suppressed for a long time, it won't ever rise. Do you want it to rise? Are you over-medicated?

Simba145 profile image
Simba145 in reply to greygoose

No clue tbh, my medicheck arrived today but i wanna wait a few days because it was a heavy weekend.

I feel like i has more energy before and maybe I pushed to have my dose increased to fast

boru profile image
boru in reply to greygoose

Seen TSh move from 3.5 to 1 same day via blood tests : one taken before meds(synthroid) and the other exactly 4 hours after.

Pictur, my apologies, I confused your headline with name.

greygoose profile image
greygoose in reply to boru

Well, that doesn't surprise me. TSH does do that: highest early in the morning, and drops throughout the day. Nothing to do with taking your levo.

boru profile image
boru in reply to greygoose

You’re contradicting yourself now: sound like a doctor.

greygoose profile image
greygoose in reply to boru

How on earth am I contradicting myself??? You said the TSH moves quickly after dosing. I said it doesn't. However, it does rise and fall every 24 hours. Which is why it's always recommended on here to have the blood draw early morning (when the TSH is at its highest) and leave a 24 hour gap between the last dose of levo and the blood draw (because it will affect the FT4 result). Where's the contradiction in that?

wanttobenormalnow profile image
wanttobenormalnow in reply to greygoose

I think she is saying that she believes that the dose of T4 is effecting the TSH thereby making it drop after taking it in the morning. And by 24 hours later it raises again to the highest level PRIOR to taking it again.

So the end result is the same for both of your concepts, but you are each believing that it gets to these points in a different manner.

T4 can take up to 9 days for 50% of the dose to clear the body; so there should not be a effect on TSH from the T4 dose if you took it in the morning, hypothetically. I don't know if they've proven this in a study. However your levels of free T4 will show a peak 2 hours after your T4 medication is taken.

wanttobenormalnow profile image
wanttobenormalnow in reply to wanttobenormalnow

okayso having said that, if your t4 levels peaks 2 hours after you take it then wouldn't that make your pituary gland reduce the TSH?? It would say "oh no there's enough circulating hormone now, so i am reducing TSH!" It does logically make you think that the TSH would be affected. More research try to find studies on how TSH affected after T4 ingestion.

greygoose profile image
greygoose in reply to wanttobenormalnow

No. It probably wouldn't even reach the pituitary in two hours. It just doesn't react that fast. The reaction is very slow. I think the research has been done, but I don't have access to it.

greygoose profile image
greygoose in reply to wanttobenormalnow

No, I don't really think that's what she's saying. She's saying that TSH will rise four hours after taking levo. Which is not true. It doesn't move that fast in response to a dose of levo.

The half life of T4 is 7 days, but that's got nothing to do with the reaction speed of the TSH.

Levels of FT4 will peak a couple of hours after taking it, but the TSH will not be affected.

wanttobenormalnow profile image
wanttobenormalnow in reply to greygoose

She said TSH went from 3.5 to 1 in four hours. So TSH went down.

I will do more research, what i found on how the "system works" unfortunately does not say anything about the length of time that these mechanisms of communication work from your pituary releasing TSH to your thyroid releasing thyroid hormone Etc. But I will keep looking.!

They have already proven in studies that food taken in will decrease the TSH in response, so it's hard for me to believe that taking your one dose for the day of T4 would not somehow also stimulate a reaction . That's just me personally but I need to find studies if there are any that prove this one way or another. I know what the common belief is amongst doctors and the forum - that TSH is not stimulated post intake of T4, but I have not found any studies so far.

greygoose profile image
greygoose in reply to wanttobenormalnow

Yes, my mistake, she said down, not up. But, she's still wrong. TSH changes throughout the day. It's highest early morning, then drops throughout the day. The four hour drop was due to its diurnal pattern, not due to taking the levo.

Actually, they haven't proved that TSH drops after food. And there was only one study. The research was badly done. But, they haven't proved that it doesn't, either. There is still a big question mark over that. We advise people to fast just in case.

Simple logic will tell you that the TSH cannot move that fast. You take your levo, it stays about an hour in the stomach, moves into the gut and has to be absorbed through the gut wall into the blood. The gut is quite a long way from the pituitary in vascular terms, so it will take a while to get there. The pituitary then has to react, and lower its production. BUT there is already a certain level of TSH in the blood. Where does it go? It can't leave the blood that fast. It doesn't just evaporate. It is slowly excreted. So, even if the pituitary is now producing less, it cannot just instantly lower the amount that is already in the blood. Seems obvious to me.

Simba145 profile image
Simba145 in reply to greygoose

If that’s the case sounds like t makes more sense to take it late at night. I’ve seen a few papers showing better results from late night dosing

greygoose profile image
greygoose in reply to Simba145

Sorry, if what's the case? I don't understand what you're talking about.

It depends on the person what is the best time to take it. Late at night isn't right for everyone, anymore than early morning is right for everyone. You have to experiment to find what's right for you.

Pictur profile image
Pictur in reply to boru

I usually take my medication between 4 or 5 am. I did not take a pill the morning I had my blood test and I was also fasting.

boru profile image
boru in reply to Pictur

That’s great.

Any biotin foods you eat regularly or supplements bcomplex etc that have biotin ? Biotin can take days or weeks to get out of system.

Your Dr seems like they’re not aware that there is other causes of low TSH and it doesn’t mean you have to lower dose causing the terrible symptoms you’re having. Good document below about causes of low TSH- goes through most of them. It could be very helpful you to fight your case in regards to getting your free hormones nearer to a person without hypothyroidism.

It is discrimination against people with autoimmune disease that they’re not afforded the same amount of hormones that people without hypthyroidism have. You should ask them to have their own t3 and t4 checked to see if it’s fair that you have to live on such lower amounts then them.

mdedge-files-live.s3.us-eas...

wanttobenormalnow profile image
wanttobenormalnow in reply to boru

@BORU What would a cup of blueberries throw off a result of? I ask, because I use them all the time in smoothies

boru profile image
boru in reply to wanttobenormalnow

Blueberries high in biotin. I use them too daily in shakes and they threw off a blood test I had the next day. False high result which was normal once I cutout the blueberries for a few days.

in reply to boru

good to know

wanttobenormalnow profile image
wanttobenormalnow in reply to boru

I cant find anywhere that it says that blueberries are high in biotin. Do you have anything published that shows that? Not trying to argue just need proof! :)

greygoose profile image
greygoose in reply to wanttobenormalnow

medalerthelp.org/vitamin-b7...

Not a mention of blueberries to be seen.

And, according to this, blueberries don't contain any biotin at all.

whfoods.com/genpage.php?tna...

wanttobenormalnow profile image
wanttobenormalnow in reply to greygoose

@greygoose yes, thats what i found also. I think maybe @boru got it mixed up with something else. it is important for me to be able to establish facts that are written in the commentary to be true facts. I don't need to be going down any rabbit holes! I am sure the intention was to help though...there are alot if moving parts so it can be easy to get confused!

in reply to greygoose

I think that the modern testing uses biotin in the procedure, therefore it can give false answers.

"Most commonly, biotin use can result in falsely high levels of T4 and T3 and falsely low levels of TSH, leading to either a wrong diagnosis of hyperthyroidism or that the thyroid hormone dose is too high. " from here: thyroid.org/patient-thyroid...

Pretty sure we're told to stop biotin for 5? days before testing here.

helvella profile image
helvellaAdministratorThyroid UK in reply to

The time period is not properly researched and, like everything else, there is likely variability.

Some of the earliiest reports suggested a couple of days for high but not super-high doses.

in reply to helvella

I don't take it, but I'd err on the side of caution if I did

greygoose profile image
greygoose in reply to

Yes, I know that. And we should stop for 5 days or a week before the blood draw. But, there's no reason to suspect biotin intervention in these labs because they're logical, which is all I'm saying. I am not trying to deny the problem with biotin.

wanttobenormalnow profile image
wanttobenormalnow in reply to greygoose

@greygoose you are making perfect sense! I hear you!

greygoose profile image
greygoose in reply to wanttobenormalnow

Thank you. :)

experimental1 profile image
experimental1

@boru; Good call about biotin, if OP is taking it in supplement form or eating many eggs, daily.

MaisieGray profile image
MaisieGray in reply to experimental1

The results aren't skewed as far as I can see, but regarding biotin, as I understand the problem it relates to supplemental biotin and not that which occurs normally in food. If I remember correctly, Medicheck cautions only about the supplemental form in its warning. Do you have a reference for cautioning about food?

experimental1 profile image
experimental1 in reply to MaisieGray

Understand. As for biotin from food sources, it was just a thought. I eat several eggs a day, including a few raw ones, so I might be at risk for skewing lab results.

helvella profile image
helvellaAdministratorThyroid UK in reply to experimental1

According to the link below, eggs typically contain 10 micrograms of biotin each.

The impact on tests is usually regarded as starting much higher - that same link says 10 to 300 milligrams a day. Indeed, it was specifically those with Multiple Sclerosis and other disorders who were taking extremely high doses who were among those whose test results caused the alarm to be raised.

I think it would be hard to reach one milligram a day from food sources (unless they were themselves "fortified" with biotin).

ods.od.nih.gov/factsheets/B...

Wetsuiter profile image
Wetsuiter in reply to experimental1

Eggs ??? Haven't heard that one before

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