Please help - I don’t know what to think or wha... - Thyroid UK

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Please help - I don’t know what to think or what I should say to my Dr

Niteflite profile image
34 Replies

In October my 75 Levo was slightly reduced because my Dr was concerned about my low TSH 0.02 (0.35-3.5). I have just had my test results prior to a phone appt. with my Dr tomorrow. The result is ‘Satisfactory’. TSH remains suppressed but less so than previous result - therefore continue)

TSH 0.11 (0.35-3.5)

T4 12 (8-21)

T3 3.5 (3.8-6)

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Niteflite profile image
Niteflite
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34 Replies
Lora7again profile image
Lora7again

Why oh why do the NHS use the TSH as an indicator of how the thyroid is functioning ??? I really have no idea because it does not indicate how much T4 or T3 is in your system and yours is quite low and needs to be in the upper third of the range. My Dad is on 100mcg and that is not a high dose but he is elderly and it suits him. You need an increase not a decrease in my honest opinion.

Niteflite profile image
Niteflite in reply toLora7again

Thanks for replying. I am approaching 68 yrs and I think my Dr is very aware of my age. She actually has hypothyroidism herself so I expected her to have a better understanding.

Wetsuiter profile image
Wetsuiter in reply toNiteflite

OMG

DippyDame profile image
DippyDame in reply toNiteflite

Bah humbug! Nothing satisfactory about that result!

Your FT4 is only 30.7% through the range and your FT3 is 13.6%.... a clear sign of under medication, when both should be around 75%

You are under medicated and your GP is only going to make things worse by reducing your dose.....you need more LT4.

You have been asked about nutrients....very important to support conversion of the storage hormone T4 to the active hormone T3. The trillions of cells in your body need an adequate and constant supply of T3 in order to enable the body to function properly.

Your low T3, therefore, is most likely your problem

Sadly medics are frequently clueless about thyroid function and yours appears to be no exception. They are so wrongly wedded to diagnosing by TSH.

This might help convince your GP....it is written by researchers, eminent in their field.

bmcendocrdisord.biomedcentr...

Age is not a reason....just a flimsy excuse!

I'm 74 and take 137.5 mcg T3....a whopping dose and I'm not about to keel over.

You have already been given good advice and in your situation I would be speaking nicely but firmly with my GP armed with the advice offered.

I find writing a list of what I want to ask, and point out, has always helped me, especially if I'm having an iffy day when it's all likely to comes out as a long ramble!!

Best of luck

DD

Niteflite profile image
Niteflite in reply toDippyDame

Thank you. You’re very understanding! I’ve got lots a bits of paper around me at the moment, just hope I can put them in order.

DippyDame profile image
DippyDame in reply toNiteflite

Of course you can!

jgelliss profile image
jgelliss in reply toDippyDame

Ditto !!!! Great Advice ….

Lora7again profile image
Lora7again in reply toNiteflite

That is not old I am 60 and my Dad is 78 ... he and my mother were very young when they got together.

Niteflite profile image
Niteflite in reply toLora7again

I don’t feel old, it’s the Dr who thinks I am. I was put on 25 Levo to start with “because of my age”!

Lora7again profile image
Lora7again in reply toNiteflite

He is wrong to do that ...I sometimes wonder what they were taught at medical school?!?

jgelliss profile image
jgelliss in reply toLora7again

Oh Agreed .

Wetsuiter profile image
Wetsuiter in reply toNiteflite

nice.org.uk/guidance/ng145/...

section 1.3.7 refers to age, but NOT to keeping you sick

section 1.4.1 refers to avoiding suppression of TSH. Not sure if i know what the definition of suppression actually is.

SeasideSusie profile image
SeasideSusieRemembering

Niteflite

Unless there has been a typo in your post, your FT3 is below range. T3 is the active hormone that every cell in our body needs and the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges.

How do you feel?

Both FT4 and FT3 are too low, you could do with an increase in dose.

Niteflite profile image
Niteflite in reply toSeasideSusie

As you say, the T3 is below range. I have always loved exercise and can still do a certain amount but cycling which my husband and I enjoyed has become slow and laborious for me. My digestion is problematic despite a careful diet. I’m cold (esp. hands), sleep badly, have a very foggy brain, sudden tiredness, muscle weakness. I’ve probably forgotten something but you get my drift.

My Dr won’t want to increase because of age and danger to heart & bones.

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

Would strongly suspect you have autoimmune thyroid disease (Hashimoto's )

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and BOTH TPO and TG thyroid antibodies

Your conversion of FT4 to FT3 is terrible. This is often linked to low vitamin levels and especially after inappropriate dose reduction

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did the last test?

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...

For thyroid including antibodies and vitamins

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

Osteoporosis can be linked to LOW FT3

Your FT3 is clearly BELOW range

thyroidpatients.ca/2018/07/...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne at

tukadmin@thyroiduk.org

First step is to get vitamins and thyroid antibodies tested

Come back with new post once you get results

Niteflite profile image
Niteflite in reply toSlowDragon

Thank you. I am taking all this on board - slowly!

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

Look back through previous blood test results and see if you ever had thyroid antibodies tested

If not...that's next step

Plus vitamin D test

B12 could be higher

Wetsuiter profile image
Wetsuiter in reply toNiteflite

Low T3 is a danger to the heart

in reply toNiteflite

I’m 76, take 125 of Levo a day and my TSH is always 0.02. My cardiologist is aware of this and says it’s not a problem.

Niteflite profile image
Niteflite in reply to

That’s interesting to know, thanks

jgelliss profile image
jgelliss in reply toNiteflite

Strength and Sympathy to you . I'm afraid that your Dr is afraid of his own shadow . It might be time to look for another Dr that is a good listener and *Gets It* . Being hypo/hyper is a contributing factor to osteoporosis and heart diseases and more .

I'm just wondering where do Dr's get their information or rather miss information's from ?????

Niteflite profile image
Niteflite in reply tojgelliss

I think you’re right.

There’s probably a special college for them somewhere!

jimh111 profile image
jimh111

Your TSH is inconsistent with your combined fT3, fT4 levels. We would expect the TSH to be much higher. Given the TSH is not reflecting your thyroid status it cannot be used to titrate your medication, it is a faulty marker for thyroid status. Your low fT3 and low normal fT4 show you are undermedicated. If your doctor is reluctant ask them to show you their thyroid results! I bet they will have higher fT3, fT4 with a higher TSH demonstating that your TSH is not behaving as it should.

Marz profile image
Marz

Have you managed to find your results for B12 - Folate - Ferritin - VitD that should have followed you to your new surgery ? If they are low in range then it is usually more evidence you need an increase in Levo and could be another cause of your fatigue and other symptoms.

No wonder you feel tired with such awful results. Your GP may have a thyroid problem but seemingly knows nothing about understanding test results - sigh ! My new GP recently asked me if my TSH was suppressed due to taking T3 ? No hiding behind lack of knowledge ... Having a low FT3 means there is not enough to go around all the trillions of cells and things begin to go wrong. A little like trying to spread a teaspoon of butter on a whole loaf of bread 🤔

Are you taking any other meds/supplements ?

Age is just a number - I am 73 and take 75mcg of T3 - vaguely equivalent to 250mcg T4 and I'm not alone on this Forum - many doing the same !

Niteflite profile image
Niteflite in reply toMarz

The folate was 16.1 (2.7-15), ferritin 93 (23-300) and B12 594 (130-1,100) but can’t find any vit D result.

I don’t take any other meds but have for a long time taken vitamin tablets, more recently B12 and biotin. I also make my own kefir which I consume daily.

I agree age is just a number which is why I try to carry on doing the things I’ve always enjoyed doing!

humanbean profile image
humanbean in reply toNiteflite

Did you stop taking your biotin a week before testing?

Biotin distorts the results of all sorts of blood tests, not just thyroid function tests.

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

Niteflite profile image
Niteflite in reply tohumanbean

Yes thanks, I did.

Marz profile image
Marz in reply toNiteflite

So it must be the Low in range T3 causing the problem ... Once supplementing B12 - further test results will be skewed. Check out Low T3 syndrome if you can ...

Niteflite profile image
Niteflite in reply toMarz

Yes, I’ve just been trying to get my head around that.

Marz profile image
Marz in reply toNiteflite

Increasing your dose of T4 could improve the T3. T4 produced by the thyroid and the dose you take is a storage hormone doing very little in the body. T4 needs to convert into T3 - the Active hormone. Optimal T3 levels are much needed for good body functions.

jgelliss profile image
jgelliss in reply toMarz

Marz many are so frightened from the information's their Dr's are feeding them . They don't know whom to believe and where to turn to for the right information . Meanwhile they are feeling awful . Does that make sense ? Marz your 73 * Years Young* . Who is counting ?????

Marz profile image
Marz in reply tojgelliss

When I first joined and knew very little - I would click onto the Username of members posting to learn more about them. Quickly you can form a picture and soon ' feel ' which posts resonate positively ... as individuals we all need different approaches ! Guess this is why this Forum works so well - there is something for Everyone !! - even us oldies can have a voice !!

With the Thyroid being in the Throat Chakra - the voice is key and not being able to express ourselves can have a negative effect on the thyroid - I have read ! Apologies, did not mean this to be an essay 🎁🌻🕯

Niteflite profile image
Niteflite in reply toMarz

That is an interesting reminder Marz. I really should have remembered about the throat chakra. I think that point has been quite relevant to me.

jgelliss profile image
jgelliss in reply toMarz

Marz *Love* your assessment . Your assessment sums it all up *so well* . Thank You .

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