Thyroid UK
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Advised to stop thyroxine after 20 years.

Hi I'm a 71 year old woman who was diagnosed with an underactive thyroid about 20 years ago after I had private blood tests. My GP said I was in normal range according to NHS blood test but private blood tests showed otherwise. I started on 25 mcg and at one time went up to 75 mcg. I have been on 25 mcg of Levothyrine for a number of years now and felt fine. Blood tests were fine too. When I had a blood test in Dec 2017 my GP said it showed I was having too much so told me to take 1 every other day. I was retested 2 months later and GP said I was still on too much and stopped thyroine altogether. I have to be retested in April. However I have since been feeling very tired, my skin is dry and I sometimes feel a bit light headed and nauseous. I am trying to lose weight but I really have to cut right down to 1100 calories and then I lose it really slowly. My GP says its very unusual to have to come off thyroxine and I am worried. I don't want to develop an overactive thyroid but I'm struggling.Should I have private blood tests again?

34 Replies
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I am sorry you are in a predicament Topsy147. At least you have a doubt to ask for members' comments.

For myself, I would refuse to change my dose due to the blood test as I would take note of any clinical symptoms I have developed. If you don't/didn't have any clinical symptoms on your tiny dose of 25mcg, I would refuse.

First, on 25mcgs did you have symptoms as the dose is tiny.I give a link below and tick the ones you have.

Your doctor is another who is poorly trained and has the belief that they can improve our health by adjusting the dose up/down which is the worst they can do for the patient.

Ask your surgery for a copy of your most recent blood test results, with the ranges and post them on a new question.

Do you always get the very earliest blood test - fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test? If not, request a new blood test and follow the above procedure, i.e. 24 hours gap between last dose of levo and test and take afterwards. It should also be the earliest and fasting.

Ask GP to test (and say you have been recommended by the NHS Choices for advice about hypothyroidism) TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. (if GP or lab wont do all of these, if you can afford it we have a private lab that will do home pin-prick tests).

GP should definitely test B12, Vit D, iron, ferritin and folate.

They are too quick to reduce dose rather than increasing it. I shall give you a list of clinical symptoms and if you were on an optimum dose you should have none.

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

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Thank you for your reply. I have quite a few of the symptoms on the check list. I don't think my GP will agree to further tests so I would appreciate details of the private blood tests.

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Private labs are below: Medichecks has a special offer every Thursday and Blue Horizon also do the necessary ones I mentioned above.

Make sure you are well-hydrated and if you need any help, you can post and those who've drawn blood will advise.

Follow procedure, i.e. the earliest possible blood draw and gap of 24 hours between last dose of levo and draw.

Your GP should test vitamins.

thyroiduk.org.uk/tuk/testin...

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My GP said no point having repeat blood test until 2 months have passed as wouldn't give an accurate reading. Is this true? Also are private pin prick tests just as accurate?

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Yes they are accurate. If you wanted blood drawn the labs mentioned can tell you where it could be done. Some may find drawing blood difficult.

I would ignore the doctor as none could diagnose me until I diagnosed myself when TSH was 100.

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Thanks very much for your advice. I will get some more blood tests done. My Serum TSH level was 0.14 mu/L. Normal range 0.35-5.50 mu/L. My liver was tested in Jan. and was normal and also HbA1c (dont know what this is) but it was normal. Not had the other tests though.

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Topsy... you are getting good advice from other folks on here but, in case you are curious, I just thought I would let you know that the A1C test you were given is for diabetes and you apparently are okay in that regard.:)

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You need to ask the GP for your blood test results. They are legally obliged to provide them. They can make a printing charge, but it is usually not that high.

It is obvious you need to go back onto your 25mcg dose, but get those results first.

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Why don't you ask your GP to test other vitamin levels and do a general health check, ie liver and kidney function etc? Vitamin D, B12, folate and ferritin could be checked. If any of these are low they could cause your symptoms. In addition if you have any problems absorbing these nutrients from your diet then you might have low levels even if they are in NHS range. Get a copy of all blood tests so you can discuss with your GP.

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Always ask for actual printed copies of results. Sounds like a GP that doesn't understand how to read a test result

You are legally entitled to copies of your own blood test results, so ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max)

As you are now very likely hypo it's essential to test vitamin D, folate, ferritin and B12

B12 tends to lower as we age anyway.

If you had low vitamins this can cause TSH result to be too low. GP should test FT3 and FT4 as well, not just adjust treatment according to TSH

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT4 and FT3 plus vitamins

Private tests are available. NHS often refuses to test FT3 or antibodies

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 ideally be done as early as possible in morning and fasting

When on Levo, 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. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Hashimoto's often leads to low vitamin levels

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Thank you for your reply. I think I need to get some more blood tests.

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Thanks for advice. I will get some more blood tests done. My Serum TSH level was 0.14 mu/L. Normal range 0.35-5.50 mu/L. My liver was tested in Jan. and is normal and also HbA1c (dont know what that is) but not had the other tests.

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Do you know if you have high antibodies? Do you know if your doctor is just testing your TSH? If so, she will have no real idea if you are over-medicated or not. You need to get hold of those results - with ranges - to know what's really going on. But my guess is that your doctor doesn't know very much about thyroid.

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Thanks for your reply. I think I need to get some more blood tests.

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Well, it might be an idea to get hold of the results of the old ones, first.

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Just looked at blood test form. Only testing Serum TSH level.

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OK, then your doctor is actively keeping you sick. She should at least test the FT4, but the most important number is the FT3. Only if the FT3 is over-range, are you over-medicated.

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Thanks for advice. I will get some more blood tests done. My Serum TSH level was 0.14 mu/L. Normal range 0.35-5.50 mu/L.

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You might be best to get your own private tests and if you want to consider these, I shall give you a link. They are home pin-prick blood tests and you need T3, T4, Free T4, free T3 and thyroid antibodies. Make sure you are well hydrated a couple of days before drawing blood which has to be at the ealiest possible, or the labs can arrange for you to have it drawn elsewhere. Medichecks or Blue Horizon are recommended:-

thyroiduk.org.uk/tuk/testin...

GP should test B12, Vit D, iron, ferritin and folate.

Everything has to be optimal and it is ridiculous we have to go onto a forum as doctors are so ill-informed and untrained in that they know no clinical symptoms.

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

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Yes, but the point is, the TSH is totally irrelevant once you are on thyroid hormone replacement. It cannot be relied upon to accurately reflect thyroid status. The important number is the FT3.

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After 20 years on treatment it is simply ludicrous to suggest removal of therapy if you feel well on it. 20 years continuous taking T4 means your body's way of working has firmly got used to the daily pill. To remove that now means your body has to readjust to the new situation.And it might react badly. At your age this is a very big ask indeed and you could take years to achieve a new stability with all the misery of these intervening years. Why does your doctor say you are taking too much T4 at this tiny dose? TSH below normal -not necessarily important. It's the position of your FT3 that is important - no useful decision can be made until that is known. FT4 on therapy is not very informative.

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Thanks for advice. I will get some more blood tests done. My Serum TSH level was 0.14 mu/L. Normal range 0.35-5.50 mu/L.

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Diogenes is thyroid researcher and scientist, so definitely knows what he's talking about!

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diogenes knows what he is talking about as he is very knowledgeable about thyroid hormones, having a Paper accepted a couple of months ago.

He is also Dr Midgeley and is a scientist/researcher particularly about thyroid hormones (so I believe).

thyroiduk.org.uk/tuk/confer...

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Yes. And if it were me I would change doctors.

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It makes me so angry that some ignorant know it all gp pokes his or her nose in on our health and trashes it. You need to change your gp!!😊😊

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Most of us on this forum have had to go-it-alone and have recovered our health. We used to believe what doctors said to us as I did until I got hypothyroism. That's when I learned that they know absolutely nothing at all except misdiagnose me as did Specialists as well. I never had a blood test but if people do they only look at the TSH and T4 and they know nothing about clinical symptoms when the patient first consults them about their disabling symptoms and may well give a prescription for the symptom when hypo has affected our whole body.

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Is there any way you could order T4 online yourself and self medicate?

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You should absolutely refuse to stop levothyroxine.

If they insist, ask for this in writing.

As soon as you have it in a hard copy fire complaint to NHS that your doctors are in breach of GMS contract for refusing to prescribe treatment.

Throw medical negligence, incompetence and inability to practice to the complaint, ask for audit and thorough investigation into doctors ability to practice medicine.

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Lots of doctors wrongly think as well that when we reach 70 we should take less!

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Could it be that some also feel"She's 70, had a good run" and don't try as hard? Similar to the orthopedic surgeon who puts more effort into an athlete's knee surgery than in a 70 y.o. lady with a walker! Just a rhetorical question and my own opinion. irina1975

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I'm not sure we will ever get the truth on that. My grandmother who brought me up had PA. she was born in 1886 and her early treatment was daily raw liver but when she reached 70ish she fainted whilst out on a very cold morning and an ambulance was called. The hospital stopped her injections as they said it would cause her to have a massive stroke. She died from a massive stroke a few years later butvim still sceptical. Changing her dose I may well have swallowed but stopping it...... doesn't feel right even now. So regular testing, and acting on results so why should age come into it? .

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I'm sorry this happened to you. Every life is valuable regardless of age and no one's life has more value than anyone else!

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I prefer to think age is just a figure!

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