Thyroid UK
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Help needed

Sorry for the long post.....

I've been on levothyroxine for 21 years. When I first got diagnosed as under active I had 3 babies aged 6 weeks, 11 months and 22 months. I felt very I'll straight away after taking Levi and went back to doc who said ineedded to give it more time to work. I then went back again saying how I'll I felt and was to!d it was because I had 3 babies under 2 and what did I expect.

I started on 125mg and over the years have gone between 100 and 200mg. I have had so many medical problems over the years including bipolar and osteoarthritis. I have put on 8 Stone in weight and attempted suicide 5 times. I can't do relationships and broke up with my children's dad 15 years ago and I have no friends.

I took beta blockers for migraine and also had a dodgy heart rhythm. I took sleeping tablets every night but was lucky if I slept 3 hours a night.I self harmed and was unable to go in a supermarket alone cos I was so scared of the world.

6 weeks ago I stopped taking all my meds. For 5 weeks I felt so bloody good!! I was alive again. Last week I had my bloods done and got the results today. They would only do tsh and t4 although I asked for more they told me I'd have to go private. I live on 50 a month I can't afford to go private. When I got results today from doc on phone he said my results were really bad and i need to start Levo again. He wouldn't tell me my levels said I didn't need to know. I said I wasn't going back on Levo he said I had no other choice there was nothing else apart from death.

He is the senior doc in the practice so where can I go from here please

5 Replies

First of all, I am so sorry to hear that you've been suffering so badly and for so long.

Please phone your surgery, speak to the secretary and request a print out of your last 2 blood labs (on and off the Levo) and study them. You have patient rights - they cannot refuse. Use the info on STTM to see where you are.

Make an appointment ASAP with another dr - senior or not. Demand they refer you to an endocrinologist.

Levo is not the only way - please post back with your results and someone here will help.

Personally I find taking advice from a mix of several FB groups is really helpful, but FTPO (For Thyroid Patients Only) especially are very supportive and knowledgeable about getting off Levo. On their 'files' there's a list of Endos who are forward thinking and happy to work with you, listen to you, and prescribe T3 or NDT which many patients get on much better with.

But it really sounds like you need to change your GP quickly. I recently went into my chemist and asked if they dispensed Armour (brand name of natural thyroid) and they said yes, just for one patient! I then got told the doctor/surgery who prescribed it and I'm now changing practice to see him. They obviously can't tell you the patient's name but they can tell you the doctor.

I wish you all the best, it sounds like you've gone through hell


That doctor is breaking the law. You have a legal right under the Data Protection Act to have a print-out of your results. They are YOUR results, and never mind his archaic views on what patients do and don't need to know.


Do you have a relative who can go to see doctors with you? I was fobbed off and fobbed off for decades with various problems. I started taking my husband with me to appointments when I wanted to discuss certain topics or things that aren't visible. I'd go to the doctor on my own with a rash or an ear infection for example, but not much else. You'd be amazed at how much more polite doctors are when there are witnesses.

One thing you might benefit from - theoretically people are legally entitled to see the coded information in their GP records online. You have to register for the service.

This is the service my surgery uses - I don't know if all surgeries use the same service :

And here is the help page showing what you have to do :


To register to see your own records you have to go to the surgery (choose a non-busy time and be polite) with two proofs of identity - one with a photograph and one with an address.

Once you have gone through the process of registering you should see something... But what you see varies. Most people can see the option to book non-urgent appointments online, and can also order a prescription for any prescribed drugs that they get on repeat prescription. If you are lucky, you will also see the coded information from your GP records, including any blood test results. But ...

Many surgeries are dragging their heels on letting people see anything from their GP records. I haven't been able to see my own info yet, and this seems to be true for the vast majority of patients.

But it is worth doing anyway. Eventually you will be able to see your records.

If you can't see your test results online you still have to do it the hard way.

See the receptionists and ask for a printout of your last blood test results. Remember that the receptionists don't write the rules and they are following orders from the doctors, so don't lose your temper with them. If they say they have to get the doctor's permission to print your results, say thank you, and tell them you will be back tomorrow to pick up the printout. Be prepared to have to pay a small amount of money for paper and ink. The doctors aren't supposed to make a profit out of it.

If they ask for a lot of money, come back and ask here for more advice...


Your experience is quite similar to mine. 15 years of GP telling me that all I need to do is take levo and all will be ok. My tiredness is down to lifestyle. Other symptoms are down to depression. When first diagnosed I was a single parent with two young children. Now they have left home and my lifestyle is far from hectic yet fatigue only gets worse. I have stopped taking meds and felt no different but blood results become quite alarming. I have recently written a letter of complaint to my practice manager. Three weeks went by and I got no response so I wrote again and said I was disappointed not to have received a reply. She replied, apologising and saying that she had asked my GP to respond. Another week has gone by and I have heard nothing although my online records (sketchy at the very least) show that he has requested a whole host of blood tests so I assume I will be getting a letter soon asking me to go for bloods. If not I will be investigating the NHS complaints policy. They are already not adhering to their own practice complaints policy. Ongoing......... not going to let this drop.

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Thank you for all your replies. I'm gonna have the day off tomorrow, then Monday watch out here I come!!

I seem to have missed off a paragraph from my original post lol all it said was..... On week 6 without meds I'm sleeping a good 8 hours a night but am very tired towards evening time and I've also put on another 9 lbs in those 6 weeks. I really believed the weight was going to drop off me

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