Underactive Thyroid or not?: Hi, I am new to the... - Thyroid UK

Thyroid UK

115,764 members134,277 posts

Underactive Thyroid or not?


Hi, I am new to the site but I have been taking Levothyroxine since the early 90s. I never really had any symptoms of hypothyroidism until my GP reduced the dosage from 150mcg to 125mcg, saying the thyroxine levels were too high? That was in early 2013 and I ended-up in hospital for four days. I was suffering with stomach upsets, pains and feeling sick all the time. After a whole battery of tests, including an ultra sound and MRI scan, I was released when they thought I had suffered a Pancreatic attack, yet when I thought about when it had started , it was the reduction of my thyroxine dose that coincided with the date.

My GP doesn't believe me but as soon as I increased the dose back to what it was, then everything settled down to normal? 18 months later, the second time my GP asked me to reduce the dosage to 125mcg, I again ended up in hospital and they almost removed my Gall Bladder because they couldn't understand what the problem was. Once again, back unto 150mcg and I was fine.

I have seen an Endocrinologist and he agrees with my GP that I should reduce my thyroxine intake. I have told them I will not reduce my dosage again as this causes me upset stomachs, loss of appetite, bloating, constipation, depression and weight gain. All the signs of hypothyroidism.

When will they start to look and treat me as a patient and not as a chart result. How can I persuade them that "the correct dose of Levothyroxine is the one that restores good health".

13 Replies


On what basis are they telling you to reduce your levothyroxine dosage?

Do you have the actual figures and reference ranges?

If, for example, it is on the basis of a relatively high Free T4 level, that could be caused by taking your levothyroxine in the hours before the blood draw.

I guess you do not have Free T3 levels, do you?

My last doctor interaction, he did not want to prescribe the dose I had been on because my Free T4 was fine. Of course, they hadn't even tested that - only TSH. But even so he wanted to persist in that line of reasoning. (Sorry, that is a ridiculous term for what he was doing.) So I have some understanding of the way they seem to divorce themselves from the person in front of them.

DennTow70 in reply to helvella

Hi, thanks for the reply. Sorry, I don't have my blood test results, I didn't think I would need them untill I entered this site and everyone here seems to know their TSH, T4 and T3 readings. I will try and contact my surgery to see if they will give me them.

My point is that even though I am telling them how horrible I feel when they reduce the Thyroxine dose, they are still insistant that I do? My GP says she will have to see her Legal Dept. if I carry-on taking a higher dose than they prescribe.

I am certainly losing confidance in the medical proffession.

helvellaAdministrator in reply to DennTow70

Sadly, this loss of confidence is widespread and fully understood here.

humanbean in reply to DennTow70

I will try and contact my surgery to see if they will give me them.

They can't refuse. You are legally entitled to your results under the Data protection Act 1998.

You could ask for access to your medical records online. Eventually all surgeries will have to do this but they've been dragging their heels on it for several years. You would need to take some form of picture identity, such as a passport or a picture driving license.



If you can't get online access then you will have to ask for paper copies.

From this page : nhs.uk/NHSEngland/thenhs/re...

Online access to your GP records is free of charge.

The Data Protection Act gives you the right to see your health records by making a subject access request (SAR). No fee is charged to see your records, but if you wish to take a copy away you may be charged. The charge will vary, depending on how the information is stored. The maximum charges are:

£10 for records that are only held electronically

up to £50 for those records that are not available in electronic form or only partially available in electronic form

For more detailed information about how to submit your SAR visit the GOV.UK website.

By law, you're entitled to receive a response no later than 40 calendar days after your application is received, your identity is checked and any relevant fee has been paid. You will then receive an appointment to see your records.

If you have asked to see a copy of your records, they should be written out in a form that you can understand. This means that abbreviations and complicated medical terms should be explained. If you still do not understand any part of the record, the health professional who is holding the record should explain it to you.

On the ICO's website you can find advice about how to request your personal information, or download the Subject Access code of practice guidance (PDF, 423kb).

You don't need to see a doctor to get copies. In fact people tend to be more successful when they don't and they speak to reception staff instead. Be aware that stone-walling is common, but don't be put off. The receptionists will tell you they need a doctor's permission to print out the info you want. When they tell you this, just say okay, and tell them you'll be back the next day to pick up the info, and then leave.

Doctors aren't supposed to make a profit out of giving you copies, so don't agree to pay a lot. You may get the info free, or you might be charged, say 5p a sheet.

If you are asked for £10 you could point out that you can ask for a copy of your entire electronic record for that much. See the bit in italics above.

What then as done all this & had it confirmed by Legal Expert Witnesses before diagnosed as took Late Mother to get hypoparathyroidism before her severe vascular dementia TIAs & sister after had used Function to target me out of employment withholding antibiotics so poor movement & mobility in fact dysponea [ & primary Lipo-lymphoedema for which no provision& heart failure not diagnosed till years after cardiac revived with angioplasty yet apparently will not refer or do Testing .Now this ....I fee impending doom .

helvellaAdministrator in reply to DennTow70


I wanted to come back to comment on this part of our response:

My GP says she will have to see her Legal Dept. if I carry-on taking a higher dose than they prescribe.

I don't think I have ever seen such a statement before! It sounds like they are threatening you, though in reality it might be just to protect her own back.

I have said many times, we as patients should be asked for, and give, informed consent to all treatments. Once on treatment, that should only be withdrawn after again first being given the information, and second having again consented. OK, so you are only have a reduction, not total withdrawal, but the argument, ethical, moral and legal, is the same.

We all know that reality tends to get in the way of principle, but in your case I think you might be able to apply that argument with some hope of success.

DennTow70 in reply to helvella

Hi, I think it is just to cover her own and the surgeries backside but does that not show you that they are thinking of themselves and not me the patient. I have been wondering if I am taking Morphine or Cocain and not just Levothyroxine?

I don't intend to lower the dosage I am on because I would like to live my life feeling well and not miserable and depressed all the time.

Sadly the days have gone when the GP looked at the back of your throat - palpated your jaw around to the ears - checked your finger nails and asked - how are your bowels ? Our health is now a business in the West - where there is a pill and a potion for every symptom - looking for the root cause seems to escape them.

You are legally entitled to your test results with ranges - they are YOURS ! See link below ...


I would also check the levels of B12 - Folate - Ferritin - VitD - as these are often low when Hypo and need to be optimal for hormones to work well.

Just as an aside - and very non-medical - I was once told by a Greek Doc here in Crete that he always spotted thyroid issues on meeting patients by the two necklace type wrinkles around the neck area. Your photo illustrates that well and I see it all the time - out and about - on TV programmes and so on !! I have them too !

Stick with this Forum - follow the advice and we will have you well in no time :-)

DennTow70 in reply to Marz

Hi, thanks for info and support and you do know that I will be looking at peoples necks in future!

helvellaAdministrator in reply to DennTow70


Many of us do. It can add something to dire television programs - but it's annoying when it takes attention away from a good program.

Marz in reply to helvella

'Question Time' - has lots of candidates 😊


Professor 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)."

Current madness by majority of GP's is to reduce Levo dose as they don't understand that many patients require suppressed TSH if on Levothyroxine

See point 2 in the summing up in article below

Prof Toft - article just published now saying T3 is likely essential for many or patients need high dose Levothyroxine and suppressed TSH in order to get high enough FT3


They can not make you reduce dose, simply refuse

I was told I am borderline and my gp wouldn't give me any medication despite having all the usual symptoms of underactive thyroid. The fatigue I have is definitely not normal. I have just paid for a private test and it will be interesting to see how that comes back but I can't continue to live like this, I hope it shows up something more positive. I just wish they would assess us as individuals and not as you say, stats on a chart!

You may also like...