Thyroid UK
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Low thyroid still?? Help!

Hi I posted yesterday that I have been in treatment for Cfs although a recent hair analysis shows that my thyroid isn't functioning optimimly. I have been on 25mg levothyroxine for about 10 years but in te last 2 years I wake feeling tired and unrefreshed, some days in just incredibly lethargic. I have muscle aches in the morning and sore tired eyes. My thyroid bloods always come back within normal range. I have just obtained these from the doctor which were done last month. Can anyone shed any light on their interpretation of these results please?

tsh 4.1

T4 17

No t3 test..

22 Replies
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Dee. Your TSH is too high for you to feel well. You probably have a GP whos aim regarding treatment is to put you back in range rather than treat you untill you are free of symptoms. Most people feel well with a TSH of around 1 or lower. There is a pulse article written by someone called Dr Anthony Toft who was the previous head of Bristish thyroid association. I am not a great fan but in this article he recommends giving enough levo so that your T4 is at the top of the range ad TSh less than one. If you contact admin at thyroid uk (email address on website) I am sure they will be able to send you a copy to show your GP. Itmay be worth you trying to find another GPin the practice who is more enlightened re thyroid treatment. If you can find outfrom your pharmacist if any of the local GP have been prescribing T3 you will have found a better doctor.

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Thank you so so mUch for your reply. Just your knowledgeable reply has reassured me! Thank you. I will do what you have said and get back to you again if you don't mind?

Xx

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Just rung 2

Pharmacies... Both who said they have had no experience with giving out t3.... 😏

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Thats a shame.

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Your dose of 25mcg is too low. Your doctor has been 'happy' just to keep your TSH somewhere in the range - even near the top when it should be 1 or lower. You have to insist on an increase and say you've taken advice from the NHS Choicies for information/advice about dysfunctions of the thyroid gland.

If you have nevert had thyroid antibodies tested, ask for these next time.

Do you have the earliest possible blood test, fasting, and allow a gap of 24 hours between last dose and test? If so your doctor has to increase your dose.

When you state your results it is helpful if you can put the ranges - labs differ and it makes it easier to comment.

Your doctor should also test B12, Vit D, iron, ferritin and folate as deficiencies also cause symproms. Again - doctor thinks anywhere in range is fine when we need all to be optimal to enable thyroid hormones to work properly..

Post results, with the ranges for comments.

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Thank tou. I will

Also had anyone had experience of endocrinologists who have dismissed their results?? I did several years ago and now wonder if I just showed have seen someone else!!!

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Just a few of us lol. The problem with thyroid care is more to do with the endos than the GPs. GPs are just following suit.

We are working towards better guidlines for everyone.

I often think it is better not to get a second opinion from an endo unless it is one on our list here. Often the endo will endorse the GPs poor treatment and no chance of getting the GP to budge on it then. It is a very alarming situation in which we have found ourselves inwhich thepeople you would normaly be able to rely on for help and good treatment are not able or willing to provide. A lot of us think it is down to big money for the pharamcetical companys who provide most of the training for doctors these days. If someone with a thyroid issue is left untreated or with inadequate treatment they often need an array of medication to deal with loads of different symptoms. Why cure when symtom relief makes so much more profit.

There are some reasonable endos and Gps but unhelpful ones seem more common. It is a big ongoing fight. Welcome to the battle ground.

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Thank you. I have emailed for the doctors list but I haven't had a reply. Does anyone on here have a list they are happy to share please? I'm just so keen to get this sorted now as I'm so fed up! I'm in kent. Thank you so so much

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In the UK we aren't diagnosed until TSH is 10. In other countries people are diagnosed at 3. There's a huge difference there.

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may i ask what thyroid antibodies is for please

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There are 'two' types of hypothyroidism although one is called an Autoimmune Thyroid Disease.

If antibodies are present in our blood, it is called an Autoimmune Thyroid Disease as the antibodies attack the gland and wax and wane until the person is hypothyroid. Sometimes the person feels they are hyperactive due to the antibodies attacking. It is commonly called Hashimoto's.

If someone has hashi's by going gluten-free can reduce the antibodies attack. Treatment is the same.

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It's a fact that many on this forum have had failures with their doctors/Endocrinologists that they now suit themselves. Source their own thyroid hormones and have recovered their health.

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Hi, I have seen doctor and he is happy to up my levothyroxine to 50mg and then recheck in 6 weeks. Hoping I'm heading the right direction! Getting private bloods done next week- will post results when received.

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I am glad you are getting an increase. Our body cries out for thyroid hormones to replace the ones we aren't producing for some reason. Our metabolism cannot work effectively, so hopefully you will be given a test every six weeks with an increase until you feel well and TSH is around 1. Many doctors believe that anywhere in the range (which is up to about 5) is sufficient but it isn't. Remember to get the earliest test etc. etc.

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Sorry what do you mean the earliest test? Just to be tested at earliest opportunity? And should I take my levo before the test? Sorry if seem silly questions but I want to do it right. My fatigue the last few weeks has been really awful and I'm surviving the day by resting on the sofa and doing very little pottering. Hoping for improvements now! X

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Shaws means book the earliest appointment of the day for blood draw.

Advice always given on the forum:

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

Post your new results in a new thread, include the reference ranges, and members will comment.

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Your GP was very wrong to leave you on 25mcg dose. That's only half the standard starter dose and most patients needs dose increased in 25mcg steps up from 50mcg to somewhere between 100mcg and 200mcg

Nice guidelines saying how to initiate and increase.

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

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Very important to test vitamin levels and thyroid antibodies

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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Thank you so so much. Honestly your comments have given me so much hope knowing something is definitely not right with my levels!! I have a private blood test booked already for next week and I'll let you know the levels then. Thank you xx

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It comes as a shock to find out that neither doctors nor endocrinologists know how best to return us to good health. They know no clinical symptoms nor how to relieve them which is by proper dose and hormones which suit us.

If you want to respond to several members at the same time you press the @ and the beginning of their name and look down the page and you will get a selection. i.e. Dee8686 and the person will be alerted.

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Hi Dee8686

Feeling tired and unrefreshed in the morning was what led me to go to my doctor and have blood tests a few years ago...I had no other symptoms. My TSH was 22!

I concur on feeling very well now with TSH around 1...I have been as low as 0.3.

25mg is a tiny dose - I take 150mg of levothroxine. I was within the "normal range" on 125mg but instinctively felt I needed more and my doctor supported that. That was maybe a year ago and all has been good since then I am glad to say.

My wife has the auto-immune version of the condition so takes Armour Thyroid which we are luck to get via the NHS (my wife had to see an NHS consultant privately first to get it). She is also now topping up with 25mg of levothroxine but that is new so can't tell how well that will go yet.

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Thanks for your reply! I am having private tests done next week and also having tests for antibodies and t3 which my doctor wouldn't do. Did you feel incredibly tired all day too before

You reached your best dose? I'm now so excited at the prospect of getting my health back and cannot believe that this has been overlooked by my gp and an endocrinologist who assured me I was fine!

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I was fairly asymptomatic before the diagnosis - I was tired and unrefreshed in the morning but was better after I got up and got moving. Through the day I often felt "not myself" it was hard to put my finger on it.

150mg is good for me now....I feel myself again and have for a good while.

Good Luck!

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