Thyroid UK
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Recently Diagnosed

When diagnosed my TSH level was 6.61.

I have now been on 25mg of Levothyroxine for 3 months and I've just had another test and the TSH was 4.66 which the doctors said was normal!

I have a doctors call scheduled tomorrow but I don't know enough about it to know what to say but I'm told that my TSH level is still too high!

I have asked for all my test results since I joined the practice so that I can compare but I know I don't feel any different on 25mg and wondered if I need a higher dose?

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Hello Caroline, yes your tsh level is too high if you follow recent research and the Thyroid UK’s advice of keeping your TSH lower than NHS guidelines. I Thyroid UK say aim for 0-2. Can anyone verify this? Also have you had your thyroid antibodies tested too? The docs need to treat the symptoms and not just the blood results!

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Dr Toft's article

thyroiduk.org.uk/tuk/about_... > Treatment Options

"Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org and highlight question 6 to show your GP.

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Thank you so much.

I will email her now. x

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Yes I've had my antibodies tested but I haven't had the results yet. My doctor who is very good but admits to not specialising in the thyroid has asked to speak with me tomorrow about all the results but I'm betting as the doctors receptionist told me my TSH level was normal (4.66) that I'll probably get the same spiel from her! I just need to be a little clued up before I speak to her! Also my friend who has also been recently diagnosed is on 75mcg of levothyroxine and her TSH levels were 4.16 on being diagnosed and then after 2 months of being on 50mcg and having a TSH level of 1.10 they put it up again by 25mcg! I don't get it as my levels are a lot higher yet I'm only on 25mcg!

Thank you x

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Firstly "Normal" range of TSH doesn't apply after diagnosis.

My Endocrinologist wrote my GP that my target therapeutic TSH level is maximum of 2. However I have learned on here of the opinion that patients feel better when TSH is kept between 0.3 and 1. So yours is still too high.

Secondly, retests would generally be after a shorter period. By now you should have had 3rd set of tests to see if you need a further increase in dose which I would have expected to have been increased to 50mcg approx 6 weeks ago.

Have you read the Levothyroxine patient leaflet - the part about the age groups and retesting and dose increases? If you were seeing GP then I would suggest taking it with you to show him when you query your dose as you are still feeling no better.

Were you given a reason for being started on the lower dose ?

You could ask for a referal to an Endocrinologist, don't know how long that would take.

Did you have your Adrenals tested before starting your Levothyroxine?

Were you given any reason for being started on 25mcg and not increased at a later date?

If you haven't had the following blood tests then I would ask doctor for them :

Thyroid Antibodies TPO and Tg (these may confirm Hashimoto's Autoimmune Thyroiditis - treatment won't be different but again least you would kniw)

Also some nutrients levels :

Vitamin D, Calcium;

B12, Folate and

Ferritin.

As you probably have some deficiencies which need prescribed supplements.

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I'm going to second guess that the doctor will say to me tomorrow that they'll keep me on 25mcg and retest in maybe a months time! I'm only saying that as that's what they've done since I joined the practice! I've asked for all my thyroid test results for as far back as they have them just so I can look and compare. They simply don't understand enough about it and rely instead on what the NHS says is "normal"!

I haven't read the patient leaflet on levothyroxine so I will need to do that.

The doctor told me they always start everyone on 25mcg which I've now found out is low but again I think that's down to their lack of knowledge!

No I haven't had my adrenals tested but I have read a little about it!

When they started me on levothyroxine she told me my ferritin was "normal" - whatever that means! The same for my B12 (which has in the past been "borderline" for injections) but I'm waiting for Vitamin D, Zinc and magnesium results!

I just need to get them to send me all my results and then I can look into stuff a little bit better and give the forum a little more information to be able to help me further!

Thank you x

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Hi again. You need Folate tested as well. You don't say your age, or whether or not you have any heart or other conditions - you don't have to - as you check out the leaflet you'll see what I'm on about!

I was over 50 years old when I was started on the 50mcg dose (nearer 60) and was under the impression that this was the starter dose for adults, generally. But Endo arranged a Short Synacthen Test to check my adrenals were ok first.

I had 3 appointments in the Endocrinolgy department the first 2 with the Consultant then discharged on the 3rd by his Registrar. My dose was increased to 75mcg on the 2nd. But this was all 6 years ago.

Rather than wait for someone to send your results to you, why don't you ask your GP tomorrow if you can call in and collect a print out?

I know some people can access them on line. So will be looking into that! Been told our Practice doesn't do it.

Have you only had TSH tested and not T4 , Free T3 ?

If you have symptoms and GP won't address them you could still ask for urgent Endo referal. But I would keep an open mind about tomorrow - see what GP has to say first.

If you are not happy after the call then I'd make an appointment and take someone with me and take a list of symptoms and a list of questions.

At least, tomorrow, try and get GP to say you can have results print out. That way, when you call in to reception and say "the Doctor said . . . " - They can't argue with that.

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Hi...I'm nearly 52. I think they've tested me for T4 and I did ask them to test for free T3 but I know not all labs will do it! I will find stuff a little easier to understand once I have everything in writing in front of me because right now I feel lost! I'll see what the doctor says tomorrow!

Thank you.

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Well you have enough info for your call tomorrow - you have the Levothyroxine patient leaflet and the link Slowdragon sent (cks.nice . . . . ) . After the doctor has spoken, if she doesn't say she's increasing the dose then query if with her. There seems to be no reason for you not being started on 50mcg. Unless you have other medical conditions.

Ask her why you weren't started on 50mcg and when will you go on to it.

Maybe she has your Antibodies results to give you.

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Hi...the doctor has increased the dosage to 50mcg and wants me to test again in 8 weeks.

Incidentally my levels were as follows:

TSH - 2.55 in a range of 0.2 - 4.5

Free T4 - 9.4 in a range of 7 - 17.0

B12 - 286 in a range of 145 - 900

Folate - 5.4 in a range of 3 - 20

Vit D - 70 where anything over 50 they say is normal!

She just kept saying that all my levels were normal and within the range!

Thank you. x

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These are my levels of TSH and Free T4from 2009

TSH Free T4

Sep 2009 - 8.06 11pmol (10-23)

Oct 2009 - 4.48 12pmol (10-23)

Nov 2010 - 4.59 11.5pmol (9-23)

Mar 2013 - 5.47 11.9pmol (9-23)

Jan 2014 - 2.74 11.8pmol (9-23)

Mar 2015 - 3.94 11.9pmol (9-23)

Feb 2016 - 4.35 9.6pmol (7-17)

Oct 2017 - 6.61 8.5pmol (7-17)

Jan 2018 - 2.55 9.4pmol (7-17)

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Your B12 and Folate are low in range. In particular your B12 is very low - I would be asking to be tested for Pernicious Anemia. Check out the symptoms of PA.

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You are under medicated on 25mcg

The standard starter dose is 50mcgs, unless frail, elderly or heart condition

See here - print out and take to GP section on initiation and titration

cks.nice.org.uk/hypothyroid...

If you have raised Thyroid antibodies this is autoimmune thyroid disease also called Hashimoto's

Low vitamin D, folate, ferritin and B12 very likely especially when under medicated as you are

Insist on testing

Typical Low vitamins due to under medication and detailed supplements advice

healthunlocked.com/thyroidu...

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I haven't anything to add to the replies below. Make sure you are taking it on an empty stomach, 1 hour before or 2 hours after food. Take B12, D and selenium supplements. You should have been started on 50mg and then the dose adjusted after the first test after 3 months. On the day of your blood test make sure you don't take your medication until after the test.

The people on this site are very knowledgable and will give you the best advice. I had to change to T3 as I was making reverse T3, but of course the NHS does nothing about this, I had to see a physician in another country to get myself sorted.

Good Luck.

Pam

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Thank you - I take my meds at 06:00hrs and don't have caffeine until at least 07:30. I was taking B12 tablets but they didn't seem to make a difference which the doctor confirmed and said the injections were the best way of the body absorbing it but my levels seem to have raised slightly so they said I don't need the injections! I'm waiting to see if they tested my Vitamin D levels, magnesium and zinc! I read about selenium but I haven't looked much into what that does!

I have a really good doctor but she's not a thyroid specialist so like most GP's in the UK, she's lead by what the NHS says! I will see what she has to say tomorrow.

Thanks again - everyone is so amazing and helpful.

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If we have taken any B12 vitamins, it takes four months for levels to return to pre-supplement levels

Did you get a low reading originally? Another result to get hold of tomorrow

B12 and folate work together. Always important to test both. If folate is low and B12 that suggests a problem

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Thank you - I will ask the doctor re my B12 and folate levels.

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Your doctor should refer to the guidance in the link that Slowdragon mentioned and/or refer you to a specialist ie Endocrinologist.

I'm not sure what you mean when you say your doctor is led by what the NHS says.

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I mean she's led by what it says in the results - i.e. the receptionist told me my levels were "normal" which indicates to me that it says that in my record so that's also what the doctor would have to go on! They can't just make up words surely?! I think it must say that in the results!

I am going to suggest being referred to a endocrinologist as I also seem to be suffering (and have been for years) from the the symptoms of arterial disease and only today have I found this out!

I will post some of my results which I picked up from the doctors last night after my call with my doctor and everyone can tell me what they think as I'm totally in the dark.

Thank you x

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If you have arterial disease diagnosis - is that the reason you were put on a low dose by your GP?

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No! It's only today when I had a light bulb moment and realised the symptoms I've been having in my hip and leg such as painful cramping, numbness and weakness of my calf muscles for bloomin years are demonstrative of arterial disease which can be exacerbated by TSH levels being too high! My doctor just said that they start everyone on 25mcg but I'll see how I get on with 50mcg.

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Aren't they also symptoms of Pernicious Anemia? Not sure, I'd have to check.

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Don't wait for test results to tell you whether you need vit D etc, just go and buy some and take them, you need to take Vit D, Selenium and B12 daily, regardless of what your results are. B12 should be taken sub lingually (under your tongue) it is rendered useless by the stomach acids.

In the UK there is no sun, you need daily vit D, regardless. And read any of the thyroid books and you will see that regardless of results there are vitamins and minerals you need to take.

You have to be proactive about your thyroid treatment, you can't sit back and wait for the doctor to advise you, because they won't.

It's a thyroid journey and we are all travelling, you are just getting on the road.

Pam x

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This forum is recommended by NHS Choices for thyroid dysfunction and I'd run by Thyroid Uk. If you have a look At their site you will find lots of useful info and a list of thyroid symptoms. It's a huge list but thankfully we don't get too many but I think it would be useful to print off the list and then tick the ones you are experiencing. Hopefully that might convince your doctor to give you a trial to see if that helps your symptoms.

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Hi - I think your doctor is way too conservative and should have put you on levothyroxine back in 2009 when your TSH level was over 8. I was ill for years and didn't know why. I was in and out of the doctors office with different symptoms which all turned out to be thyroid related. I just wish they would teach doctors more about this disease as it would save us all so much loss of quality of life. Thank god for this forum! We can all learn and get our lives back.

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