Advice on dose and levels

[Lizziemac87]

Hi, just joined and hoping to get some advice. I was diagnosed hypothyroidism when I was 17 I'm 32 now. I can't remember the last time I had a normal blood result. I take 200mg of levotyroxine and my tsh level is low this time so they will most likely put my medication down to 175 and I will have another test in 4months and they will put it up again. Its a high dose for someone my age and I think I should be refered to an endocrinologist but the last time I suggested that they refused said its not necessary with an underactive thyroid.

[greygoose]

I don't know about necessary, but it's highly undesirable to see just any old endo. Very few of them know anything about thyroid, and have some very strange ideas. They mess a lot of people up! Unless you know of an endo that is really good with thyroid - from a patient's point of view, not the opinion of his colleagues! - it's not really worth it.

Of course, your GP doesn't know anything about thyroid, either, or he wouldn't be dosing by the TSH, which is 100% wrong and will never make you well. You need at least your FT4 tested, but preferably the FT3, too.

Your age has nothing to do with your dose. Absolutely nothing. You need what you need. And, it sounds likely that the reason you need 200 mcg (which isn't as high as all that, really) is because you don't convert T4 to T3 very well. But, you won't know that until you get your FT4 and FT3 tested at the same time. Would you be in a position to do private testing?

Do you have Hashi's? That is determined by antibody testing. How about your nutrients? Have you had vit d, vit B12, folate and ferritin tested? If the answer to those questions is 'no', then private testing is highly recommended.

[Lizziemac87 in reply to greygoose]

Hi, Ive never been tested for hashi's I don't think. My main question being is that for some reason my thyroid condition is so badly managed but why? And why have they not done anything. This has been going on for years now.

[greygoose in reply to Lizziemac87]

It's badly managed because your doctor is dosing by the TSH. And, he's doing that because he is so badly educated in thyroid that he doesn't know any better.

[Marz in reply to Lizziemac87]

Many of us here have a badly managed thyroid - that's mostly why we are on this forum learning from each other 😥 There are 107,000 plus members so you are not alone...

[SeasideSusie Remembering]

Lizziemac87

Its a high dose for someone my age

Not necessarily, we need what we need, whatever our age.

I think I should be refered to an endocrinologist but the last time I suggested that they refused said its not necessary with an underactive thyroid.

Some people are referred, some are not. Hypothyroidism is often treated in primary care and never referrred to an endo. To be honest, so many people have been disappointed with their endo consultations that it's not always a good thing.

The best thing to do is let's start at the beginning.

Do you have any test results to share with us? If you don't have them then if you have online access to results then make a note of the test name, result and reference range and post them on the forum. Also include past results when dose has been changed so we can see why.

If you don't have online access then ask the receptionist at your surgery for a print out, don't accept verbal or hand written results as mistakes can happen.

We are legally entitled to our results here in the UK.

For a full picture we need to see:

TSH

FT4

FT3

Thyroid antibodies

and because we need optimal results for thyroid hormone to work properly we also need:

Vit D

B12

Folate

Ferritin

If you don't have all these and your GP wont do them, then we have recommended labs who do private home tests that include all of them in one bundle. Please ask if you would like details.

Another thing is that to compare test results accurately we need to do our thyroid tests under exactly the same conditions each time. We advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

I wonder if yours have been done at different times, which may have given different TSH levels which may be the reason for adjusting your dose of Levo.

Most doctors only use TSH to determine dose, but this is wrong. TSH is not a thyroid hormone, it's a signal from the pituitary to make hormone if it detects there's not enough. It's the FT4 and FT3 that are the thyroid hormones and those are the important tests which should guide dose of Levo, unfortunately most doctors don't know this.

[Lizziemac87 in reply to SeasideSusie]

All I know is this has been going on for years and getting worse with age it seems. My tsh level from the blood test I've just had done was 0.1 private testing could be a good idea actually because I'm so sick of the same old routine everytime I have my bloods done. I've been told my results sometimes are not the results they would expect to see of someone who takes there tablets religiously. I take my tablets at 8am every morning 1 hr before brekkie or caffeine. That change in routine has made no difference.

[SeasideSusie Remembering in reply to Lizziemac87]

Lizziemac87

So is TSH all that's tested? If so it's the usual ignorance of how to treat thyroidism that we hear about on the forum.

If I were you I'd do a private test, your GP wont be able to get FT3 done, may not be able to get thyroid antibodies done, and may not be willing to do the vitamin tests.

Most popular here are the following, either of which can be done by fingerprick or venous blood draw if you prefer:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func...

You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk... (previously known as Thyroid Check Plus Eleven)

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test:

Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.

If you decide to do one then do the test Monday, Tuesday or Wednesday only, send back the same day and use Royal Mail's Guaranteed by 1pm Next Day service. This is so that it doesn't hang about the lab over the weekend which can mean the blood spoils and the test can't be done. Results take about 24-48 hours normally.

I've been told my results sometimes are not the results they would expect to see of someone who takes there tablets religiously.

In that case I'd hazard a guess that you have raised thyroid antibodies confirming autommune thyroid disease as the cause of your hypothyroidism (this is know by patients as Hashimoto's).

[Lizziemac87 in reply to SeasideSusie]

Would they not have picked up on hashimotos in previous blood work if I had it!?

[SeasideSusie Remembering in reply to Lizziemac87]

Only if they tested thyroid antibodies and in 46 years of being hypothyroid I've never had my antibodies tested by the NHS. Even if tested most doctors tend to dismiss antibodies as being of no importance despite how the patient feels.

[Lizziemac87 in reply to SeasideSusie]

That's interesting. What would my symptoms be if I did have that?

[SeasideSusie Remembering in reply to Lizziemac87]

Lizziemac87

What would my symptoms be if I did have that?

Hashi's is where the immune system attacks the thyroid and gradually destroys it. So you would have symptoms of hypothyroidism.

But because the attacks cause the thyroid to release hormone then you may have a "hyper" swing at that time. So with Hashi's it's possible to occasionally swing from hypo to "hyper" but it's not true hyperthyroidism, it's just a swing due to the extra hormone released during the attack, and then you swing back again.

It can be quite random, no pattern, you can go a long time with no Hashi's activity.

But the first thing to do is full testing, including the vitamins because Hashi's tends to cause gut/absorption problems which can lead to low levels or deficiencies.

[SlowDragon Administrator in reply to Lizziemac87]

As there is no specific medical treatment for autoimmune aspects of Hashimoto’s most medics think it irrelevant to test thyroid antibodies

But there is an enormous amount we, as patients can do

First step is it’s very Important to see exactly what has been tested and equally important what hasn’t been tested yet ...or recently

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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

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 do your tests?

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

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

Low vitamin levels are extremely common

[Lizziemac87 in reply to SlowDragon]

Just spoke to a receptionist regarding most recent blood results. They tested tsh which was 0.1 and serum t4 something? Which apparently was normal 28?

Im currently on 200mg and they have adjusted my meds to 75mg!! That's a hell of a drop I'm so confused.

[SlowDragon Administrator in reply to Lizziemac87]

You should never reduce by more than 25mcg at anyone time

So down to 175mcg ...not 75mcg

Strongly recommended getting FULL thyroid and vitamin testing before changing dose at all

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).

[SlowDragon Administrator in reply to Lizziemac87]

Ring or email GP say you are not prepared to drop dose by more than 25mcg, down to 175mcg

But you will be getting FULL testing privately yourself and will update them with results

Only Ft3 is over range (unlikely) are you over treated

If you took levothyroxine on morning before test, this gives false high Ft4

TSH is frequently extremely low when on levothyroxine, it doesn’t mean we are over treated

Low vitamin levels extremely common, these often lower TSH too

[Lizziemac87 in reply to SlowDragon]

What do you mean about the ft3?

[SlowDragon Administrator in reply to Lizziemac87]

Link explaining blood tests

thyroiduk.org/tuk/testing/t...

Levothyroxine is T4 ....it has to be converted into Ft3 before we can use it at all

Helpful film

drbradshook.com/understandi...

Many, many people are poor converters of Ft4 to Ft3....various reasons....hashimoto’s...low vitamins...gluten or lactose intolerance etc etc

First step is to get FULL thyroid and vitamin testing....usually that means private testing as NHS refuses to test

[SlowDragon Administrator in reply to Lizziemac87]

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

[e-mail]

GP should never dose on just TSH and Ft4

[tattybogle in reply to Lizziemac87]

Hello lizziemac.

I hope this story helps..... A Cautionary Tale !......

Have faith in your instincts more

Believe in doctors less.

If you feel stable and "OK 4 U" don't change your dose much at all .unless they can prove to you that FT3 /FT4 are above top limit. Even then... do the thinking your self.

They are taught at GP school that "odd" levels on blood tests usually caused by "patient not compliant" ,but YOU kno_ you are taking Levo as prescribed. Actual cause... most likely... you being an individual human being not a statistic!

I have just spent 9 months doing as told, because GP said "that TSH is MUCH too lo_" "you'll die" ....i kid you not...

Outcome.....I eventually became mostly confined to sofa. Digestive system gone to sleep completely. The little life i had, much diminished.

Latest blood test.... GP said a that's a bit better... i said ....that's fine 4 you ,but i have to live in this body and it doesn't function!

My levels:

29/5/18. TSH 0.046 (0.57-3.6) FT4 14.7 (7.9-14) FT3 5.1 (3.8-6) 125 mcg Levo

20/5/19 TSH 0.041 FT4 20.5 125 mcg.

. then told to take 112.5

26/9/19 TSH 0.097 FT4 22.7 112.5 mcg.

. then told to take 100 me and GP had "a frank exchange of opinions" . . 27/3/20 TSH 0.511 FT4 19 100 mcg.

. .

So obviously... i'm not you , i'm 54, post menopausal, i have had a TSH of about 0.05 since 2005 ,FT4 close to/above limit ,not had FT3 above 5.2 even if FT4 at top limit.................

I cannot say something is safe 4 you to do, but i can say, blindly doing as i am told, against my instincts, has definately messed me up !

So ....Since Sept , I have asked for ALL my old medical history ,blood test results and ranges , i have put my TSH ,FT4, FT3 and gp visits into a list so i can make sense of it . I have come to this site and learned load's, and looked at published science studies till i can understand them (thanks to feeling too rubbish most days to do much else but lie on the sofa and read the same line over and over)

Outcome........i am confident and have convinced my gp that my TSH is best for me at about 0.05 ,he has put on my notes that i understand the risks, and he's agreed I put dose back up to 112mcg /125mcg because "he doesnt mean to make me ill"

Update:

2/4/20 I have been taking 112mcg for 7 days ,starting to feel better, but i'll not be surprised if it takes month's to get back to doing anything usefull.

P.S I didn't die

P.P.S I'll be standing up 4 myself at GP appointments ,and in future i'll be taking the dose I think i need and insisting politely but confidently on seeing MY blood test results (and ranges)

There are some very experienced ,helpful, and lovely folk on here

Best of Luck

Tat x

[tattybogle]

Thankyou x to whoever for editing that for me. Admin?

i did make a nice set of easy to read columns, but then they re-organised themselves somewhere on their way through cyberspace! Sorry i'm a bit of a luddite.... more at home with a pen and paper!