TSH 0.01 - heart palpitations and feeling stres... - Thyroid UK

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TSH 0.01 - heart palpitations and feeling stressed

CharlyMae profile image
38 Replies

Hey!

My TSH has now dropped to 0.01, what’s the lowest it can go?

I have been advised to drop my meds down to 25mg of thyroxine.

Any ideas why it’s gone so low?

Background:

I’m 8 months postpartum, eating healthy and walking lots! I have quite a stressful job.

Thanks :)

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CharlyMae
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38 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Do you know what the FT4 and FT3 results were? Sometimes if your TSH has got suppressed it can stay there for a while and even never go back to 'normal' so you need to see what the free results are to see whats happening.

25mcgs is a tiny dose and not likely to help anyone with hypothyroidism unless you're just having a Hashi swing?

Have you recently had your vitamin levels checked - ferritin, folate, B12 & D3?

CharlyMae profile image
CharlyMae in reply toJaydee1507

I have under active thyroid and Hashimoto’s so most likely a swing.

My T4 is 16.9 so in range and they don’t test T3 in the U.K.

:)

Jaydee1507 profile image
Jaydee1507Administrator in reply toCharlyMae

To get a complete picture you would be better off getting private tests done as many members of this group do. Thyroid UK offer discount codes. thyroiduk.org/help-and-supp...

What is the range for the FT4?

What dose are you currently on?

You need a good B complex, look for active or methyl type.

Having OPTIMAL vitamin levels is vital for thyroid hormone to work well.

Use thsi calculator to work out how much vit D and K2 to take to get your level to 100. K2 is needed to make D3 go towards your bones. grassrootshealth.net/projec...

Jazzw profile image
Jazzw in reply toCharlyMae

they don’t test T3 in the U.K.

Oh yes they do but sometimes the lab who does the tests decides that it isn’t necessary. But with a TSH of 0.01 post pregnancy I think your doctor (if they wanted to) should be able to over-rule the lab and specify on the blood form that an FT3 level needs doing.

If not, many of us resort to private blood tests to get a handle on the situation ourselves.

If you’re still hypo (and a low TSH does NOT necessarily mean that you are over-medicated) then 25mcg isn’t going to be enough for you to function well. Downright cruel to leave you on such a low dose in fact. :(

Singwell profile image
Singwell in reply toCharlyMae

They will if you dig your heels in! Talk to your GP. Being post partum you're in a position to ask for that extra test. Also, the palpitations.

CharlyMae profile image
CharlyMae in reply toJaydee1507

B12 and Vit D low but in range! I am taking vitamins

Jaydee1507 profile image
Jaydee1507Administrator in reply toCharlyMae

Which vitamins are you taking and have you retested to make sure you are taking enough?

See this reply to you from SeasideSusie with comprehensive advice on vitamins. healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

ESSENTIAL to regularly test vitamin D, folate, ferritin and B12

Plus don’t dose according to TSH ….but according to Ft3 and Ft4

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Exactly what vitamin supplements are you currently taking

Important to stop vitamin B complex, (as contains biotin) 3-5 days before blood test

Purplecat4321 profile image
Purplecat4321 in reply toSlowDragon

Hello SlowDragon. It is Meerkat 1234 before that G1K2 now Purplecat4321 The forum keeps blocking me out so I have to use a new username. Anyway going up the levothyroxine has made me really unwell. Pounding heart aching muscles numbness wheezy chest and chronic anxiety and insomnia and constipation and nausea hyperactivity and aggression. Gone back to 25mcg and doctor calling me on Saturday morning. I feel terrible.

SlowDragon profile image
SlowDragonAdministrator in reply toPurplecat4321

Please write a new post of your own.

Don’t hijack someone else’s post

Purplecat4321 profile image
Purplecat4321 in reply toSlowDragon

I wasn’t hijacking somebody’s else’s post tattybogle says this belongs to CharlyMae.I am totally confused.please would you sort it out. It wouldn’t let me in on Meerkat1234

SlowDragon profile image
SlowDragonAdministrator in reply toPurplecat4321

Here’s your Meerkat1234

healthunlocked.com/user/Mee...

Purplecat4321 profile image
Purplecat4321 in reply toSlowDragon

I can’t get your reply on meerkat1234

SlowDragon profile image
SlowDragonAdministrator in reply toPurplecat4321

Purplecat4321

Sent you private message on how to proceed

Purplecat4321 profile image
Purplecat4321 in reply toSlowDragon

Hello SlowDragon. Another doctor rang and said stay on 25mcgs levothyroxine because of pounding heart. I am so sick of having no care we need to go privately. Still my eating is biggest problem and I am so weak. Nobody can give me any stomach acid and can’t take supplements.

tattybogle profile image
tattybogle in reply toPurplecat4321

purplecat4321 , you need to start a new post of your own , this is CharlyMae's post . things will get very confused if you ask questions about you on this post .. and charlymae will keep getting email alerts about it that are not for her .

At the very top of the page ( on the right hand side) , you will see a box marked "WRITE" ,

Click on that and write your new post in there .

Purplecat4321 profile image
Purplecat4321 in reply totattybogle

Hello tattybogle. What name can I use in the new post. I wasn’t hijacking’s anyone’s post has Meerkat 1234 but forum wouldn’t let me in can you tell me why. SlawDragon says there has been technical issues for a while. I have to start again but don’t know how too.

tattybogle profile image
tattybogle in reply toPurplecat4321

and this one is Charlymae's

SlowDragon profile image
SlowDragonAdministrator

6 months ago vitamins were terrible

healthunlocked.com/thyroidu...

Ferritin was EXTREMELY low and you had high CRP (test for inflammation)

Ferritin result can be higher with inflammation…..iron might be very low

Request GP do full iron panel test for anaemia including ferritin

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

BB001 profile image
BB001 in reply toSlowDragon

Years ago I read research that said to process thyroid hormones one needed a ferritin level of 70-90. No idea which research it was though.

McPammy profile image
McPammy

suppressed TSH normally indicates you are on too much medication. If you didn’t take your levo on the morning of the blood draw the T4 an/or T3 results will be lower than if you had. It could be spiking over T4 or T3 ranges after ingestion. I’d do another test but next time take your medication as per your normal routine. If it’s over range then that’ll be your answer and your levo dose would need reducing slightly.

Partner20 profile image
Partner20 in reply toMcPammy

FT4 may spike 2-4 hours after taking levo, which is why leaving a gap of a few hours between levo and a blood test is recommended. However, there is no such instant effect on TSH. If there were any such effect, TSH would be instantly lowered after taking levo, which does not happen. To accurately assess overmedication, at least FT4 is needed, too.

McPammy profile image
McPammy in reply toPartner20

if your T4 or T3 is spiking regularly/daily your TSH would reflect that by being suppressed. T4 or T3 levels can go up and down as you take your meds daily. TSH doesn’t change as often and it checks the balance of hormones over a longer period of time. I’ve had bloods done both with taking and not taking meds. T4 and T3 changed but TSH remained the same. It was to find out which of T4 or T3 was over medicated. It turned out it was T3 in my scenario. The aim of the game is to mimic a healthy persons TSH of 1-2 by fine tuning your daily medication if possible. And importantly to feel energised and healthy.

Jazzw profile image
Jazzw in reply toMcPammy

That’s a very ideal world scenario which unfortunately just isn’t on the cards for many with hypothyroidism. I think over time, if you take thyroid hormone replacement, the TSH response can become blunted. It sometimes doesn’t rise, even when FT3 and FT4 levels are low.

If I blindly followed my TSH readings only I’d conclude that no thyroid hormone replacement was necessary—my TSH no longer rises in response to absence of thyroid hormone in my bloodstream. I know this because I tried it, and believe me, it’s no fun once you crash. It can take months after reinstating sufficient hormone replacement to feel right again.

The idea that you can mimic the condition of someone with a fully functioning healthy thyroid is the idea that’s keeping huge numbers of hypothyroid folk around the world chronically undermedicated and chronically ill. It isn’t that simple—please don’t make it sound like it is.

McPammy profile image
McPammy in reply toJazzw

I think I’m very lucky then to have managed to feel very well and energised by fine tuning my levothyroxine T4 medication dose 68mcg a day, in my ideal world. I’ve not changed my T3 liothyronine doses of 5mcg twice a day. I’m taking Liquid Levothyroxine which makes it extremely easy to adjust rather than tablet form which doesn’t go lower than 12.5mcg. My t4 and t3 levels are normally low midway on blood tests not ingesting that morning. And near the top of the ranges after ingesting. My TSH was always too high around 4.5 when on levothyroxine only for over 10 years. 4 years ago I started combined therapy adding liothyronine T3 as I kept collapsing and ended up unable to walk. Since starting T3 my TSH is now around 1.00 (0.35 - 5.50). I’m a poor converter. I’ve never felt so healthy and well as long as I stick to my routine and don’t change brands. I’m 64 and feel 46. I consider myself lucky only because I worked at balancing my hormones to feel well. I can’t be the only person to mange to keep their TSH and levels in range on T3 plus T4 therapy and be happy and well. But I must say that my private only and my NHS endocrinologists are both extremely happy with my results and outcome. Not as pleased as I am though.

tattybogle profile image
tattybogle in reply toMcPammy

i'm fairly convinced that reason you can manage to keep your TSH in range while taking enough T4/T3 for you to feel good , has a lot to do with whatever the reason is for you having "TSH always too high eg 4.5 when on levo only "

many of us get very low in range / below range TSH from doses of Levo that symptom wise were not remotely overmedicated and with fT4 fT3 well within range ..

so it seems logical to me that while you would be able to keep TSH just within range or closer to 1 on combination treatment , someone what got "TSH always 0.5 on levo" , would most likely end up with TSH extremely low when on combination therapy . Your circumstance is "great if you can get it ", because it has the obvious benefits of allowing TSH to help a bit with conversion (and anything else 'clever' it gets up to ).. and also of keeping endo's very happy.

But someone who had low TSH on levo (without being overmedicated) is highly unlikely to be able to replicate your TSH / FT4 /fT3 pairings.

i think it's a "comparing apples and pears" situation .

I hope you're starting to feeling better again now McPammy after your recent forced adventure down the "levo tablet" avenue ?

Jazzw profile image
Jazzw in reply toMcPammy

That’s brilliant. I’ll admit to being slightly jealous! But am really pleased for you. :)

Sorry if I sounded a bit angsty in my first reply—I should have re-worded that a little more gently I think.

waveylines profile image
waveylines

My TSH is always suppressed at 0.02. I'm on a combine medication. I am not over treated because both my Ft4 & Ft3 are in range. In addition I don't have any signs or symptoms of over treatment. So please dont be alarmed. A suppressed TSH doesn't necessarily mean you are over treated. TSH, thyroid stimulating hormone isn't a thyroid hormone.....its a trigger signal from your pituitary telling your thyroid to make more or less thyroid hormones. Treating by the TSH alone has scientifically be shown to lead to under treatment......but still the NHS persists with this protocol.

Charlie-Farley profile image
Charlie-Farley

the blood tests are only a guide. How you feel is the absolute most important thing.

I put this on another post but my reply is pertinent here.

With conflicting results, big question marks over quality vs cost etc, one has to keep coming back to what about symptoms?

By all means use tests as a (rough) guide, but symptoms are unequivocally the best calibration to our individual wellness.

When an instrument is calibrated that is to ensure it produces consistent results that can be compared to each other. It doesn’t mean calibration to the individual should be ignored. We all respond differently to hormone replacement.

I have a suppressed TSH - I accept this is required in my case to become symptom free. Being under medicated to satisfy a ridiculous (and very unscientific) obsession with TSH leaves thousands with lingering symptoms that have short and long term serious health impacts in their own right.

Symptoms are bespoke. to us. There will never be a test that accurately predicts the dose of replacement hormones each individual person requires. The test has to be calibrated to the person. A doctor should be noting an individual’s response to treatment and comparing the test results, thus treating the patient.

Not dosing according to the test results and ignoring symptoms, or putting it down to something the patient is, or is not doing ie gaslighting and doggedly treating the lab work (not the patient).

The more the holy grail of accurate reproducible tests is sought the closer we get to symptoms being ‘made redundant’ by ignorance and laziness.

If the interpretation of tests and the inherent limitations are not properly explained to doctors and endocrinologists alike we will see no improvement in treatment.

Currently we have the ‘Your Normal’ (when in range) paradigm for blood test results. To give you a feel for how inadequate this method of ‘interpretation’ is :

I was ‘Normal’ at 75ug of Levothyroxine- though severely symptomatic. My 6 1/2 stone friend is fine on 75ug.

I was ‘Normal’ at 100ug - but still symptomatic

I was ‘Normal’ at 125 ug - but still symptomatic

I became well at 150 ug of Levothyroxine and at 5’ 8” tall and just over 15 stone that may not come as a surprise, but I had to FIGHT for every dose increase.

Improving testing for the most part will make no difference if the 🤡 reading off the lab sheets don’t know $*ite from pudding. This is a systemic problem with actually a NOT so massive knowledge gap that needs plugging. The problem is it is a WIDESPREAD knowledge gap.

Science and medicine have long since parted company and basic scientific principles have been lost. New methodology has been introduced and doctors have not been trained to understand it. Even putting ‘normal’ on a lab test printout is abhorrent - it goes to reinforce the current paradigm.

KrazyKatMT70 profile image
KrazyKatMT70

Mine just did too ! My TSH was way below zero ! Not sure if it has to do with colder temperatures or not . I was .137 and was changed to .125. I did lose a lot of weight lately , not sure if that affects it or not !

tattybogle profile image
tattybogle in reply toKrazyKatMT70

KrazyKat ..TSH can't go 'below zero' :

0.001 is 0.001 higher than zero

0.05 is 0.05 higher than zero

0.2 is 0.2 higher than zero

zero is 0.000

but most TSH machines cannot accurately measure right down to 0

So when it is lower than the machine can measure, the result will say eg . <0.05 ('less than' 0.05) or <0.01 or <0.005 depending on the machines limits .

KrazyKatMT70 profile image
KrazyKatMT70 in reply totattybogle

yeah, I’m mistaken, I looked it up. It’s .05

kiefer profile image
kiefer

Having a "distressful" job can cause an elevation in cortisol levels, which can result in palpitations, and anxiety can increase due to a compensatory adrenaline response.

Elevated cortisol levels can suppress the TSH level, reduce conversion of T4 to T3, etc. Overall, it down-regulates thyroid function.

"Thus when cortisol levels are manipulated through pathologic as well as physiologic ranges, a negative relationship is found between cortisol and TSH. Both exogenous and endogenous (i.e. Cushing’s Syndrome, stress) corticosteroids suppress TSH [19-22] while low cortisol levels elevate TSH [23,24]. These studies all taken together suggest a physiologic feedback loop where lower thyroid function increases cortisol, but cortisol feeds back to reduce TSH"

ncbi.nlm.nih.gov/pmc/articl...

Based just on the dose (25mcg), you're most likely undermedicated. As others have said, you'll want to obtain a Free T3 level along with TSH and Free T4 as your standard testing protocol. This not only protects you from those accusatory voices but serves as documentation confirming that your TSH may be suppressed for reasons other than overmedication.

There is a knee-jerk response by most doctors when they see a suppressed TSH. They immediately conclude that your Free T3 (the active unbound molecule) is elevated above normal levels. They were taught this as medical students, they do not read medical literature after finishing medical school, and that's why "that's their story and they're sticking to it."

tattybogle profile image
tattybogle

CharlyMae Looking at previous history , your T4/T3 were previously going over range , probably as a result of post partum changes/ wobbles as thyroid hormone levels adapt and settle down again in the months following a birth , which is fairly common.

or hashi's 'hyper' swing .. also common in the months after a birth.

So now , after (how long?) on 50mcg :

TSH 0.01

fT4 16.9 [ in range } what is the range ?

GP now reduced to 25mcg

What was previous TSH result ?

is this a further drop in TSH since last test ?

TSH can get 'stuck' at low levels for a while once it's been low , so even though fT4 level has now reduced on 50mcg .. your TSH may not have caught up yet.

So whenever TSH has been low , GP needs to consider fT4 levels/ and symptoms too,.. not just TSH .

Heart palpitation an feeling stressed could be a sign of overmedication , but not always , some people feel like that when undermedicated

tattybogle profile image
tattybogle in reply totattybogle

2 yrs ago March 2021 :

Diagnosed Hashimoto's.

TSH 44

fT4 7 [9-20] .

started on 25mcg ! levo.

(taking a ppi , allergic to cows milk, stopped eating soy now , gluten /dairy free already )

April /May 2021: Results on 25mcg ..... TSH 3.4

Levo increased to 50mcg

TPOab 600 [0-34] ~ GP wasn't willing to confirm hashimoto's until ultrasound scan done ! (very weird , since GP has hashimoto's herself apparently )

July 2021 results on 50mcg 0.88 (3 months after diagnosis)

8 months ago July 2022 : I had a baby 4 weeks ago and I thought my thyroid was off as my speech was slurred and I was extremely tired even for a new parent

TSH 0.8

T4 14.5 / or ? 14.8 [12-22] a.m test but after taking levo , so ?'false' high FT4 result.

Doctors think it’s all normal but I know I don’t feel right! feel dizzy inside... I’m wondering whether it’s that or my inner ear. My speech feels slurred too and I feel slow

August 29th medichecks results inc vitamins healthunlocked.com/thyroidu...

TSH: 0.03 [0.27 -4.2] (8.30 am test , no levo for 24 hrs )

FT3 : 8.53 [3.1-6.8]

FT4 : 29.2 [12-22] (seaside susie suggested to lower dose to 25 mcg fr now and see how it goes .. ? hashis hyper sing, ?post partum wobble)

Thyroid peroxidase antibodies 304 <34

" have been medicated for 2 years now but after having my son 12 weeks ago, I felt awful! Extremely tired (not just newborn tired), dizziness, blurry vision, vertigo and just feeling really slow like I’m waking in mud…"

Sept 15th 2022 : "When I had my bloods done on the 25th August it showed I was swinging into over active - TSH 0.03 I definitely felt weird and still do… That same week I reduced my meds but I still have heart palpitations, anxiety, racing thoughts, can’t focus and I have this butterfly feeling from my throat down to my stomach.

It’s been nearly 4 weeks since reducing meds and I’m due to get another blood test soon but I still feel over active…"

Charlymae ..What were the results of that blood test on 25mcg ?

What happened to your dose in between then and now ?

Now Feb 2023 : "Hey! My TSH has now dropped to 0.01, what’s the lowest it can go?

I have been advised to drop my meds down to 25mg of thyroxine. Any ideas why it’s gone so low?

When did you increase back to 50mcg ?.. you had already reduced to 25mcg in aug /sept.

please can you give us the missing result betwen August 25th and now and any dose changes ~otherwise you will not get good advice as members making replies will be confused.

CharlyMae profile image
CharlyMae

Hey everyone!

Sorry there are so many messages to reply to and I will try and get them done.

I have attached my latest bloods for thyroid and vitamins below!

Test results
CharlyMae profile image
CharlyMae

more results

Test results
CharlyMae profile image
CharlyMae

more results

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