For over 4 years I have been patient and listening to waffle but now my health is suffering. I have had several health problems, not connected to my thyroid but now, all of my problems seem thyroid related. My doctor has consistently just ramped up my Levothyroxine, even though I told her that it was making me ill, she now has me on 200 mcg but I only take 100 or I'm not able to function. Everytime I have spoken to the two doctors regarding T3 testing, or trying T3 they say "we cannot test for, or prescribe T3, carry on with the T4" I offered to pay privately for the testing, they refused. Now I have bought a test kit from Medichecks "Thyroid Check UltraVit with Folate Blood Test" and I have a private nurse going to take the blood. I advised my doctor that I was doing this, to which she replied "we can discuss that once you've got it done" what she doesn't know is that I have a top thyroid specialist who has agreed to give me an opinion. Last time I had a private blood test done, I sent it to my doctor online, they told me that they hadn't received it, they gave me an alternative email, I sent it again, 3 months later I mentioned it to the doctor, again they claimed no knowledge of it. I took a hard copy into the surgery and the doctor seemed a bit peeved, I gave it to her, on a further visit, I mentioned the test and she claimed no knowledge of it. As I was now getting used to the way they work, I booted up my laptop and showed it to her again, I sat there and said I'd wait while she entered it into my records, I bet it's vanished again. What is wrong with some of these doctors, they make enough money?
Why do doctors insist on fighting patients when... - Thyroid UK
Why do doctors insist on fighting patients when they know that they are wrong?
I meant to include the following in my post. My symptoms: calf muscle ache, pelvic ache, dry wrinkled skin, neck ache, lethargy, knees aching badly and eyesight problems.
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I am pointing this out purely to ensure that you know your options. 
(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)
Do you have any results you can share with us ? Plenty of people here who can interpret your test results and offer suggestions.
How are your nutrients - B12 - Folate - Ferritin - VitD ?
Does your surgery have on-line access to records ? Worth asking ...
Geese your doctor sounds quite miserable! Can you not change to another GP? We often advise unhappy patients in the Netherlands to change GPs if the breakdown in doctor patient relationship lies there. Not everyone’s personalities will get along so it’s perfectly okay to ask for a new GP. I no longer live in the UK but I had a good relationship with my GP.
What are your test results like?
In this area (I live in the countryside) the surgeries are overloaded and few, this surgery was the only one that would let me register. I am now going for a private opinion and will report my surgery to the GMC.
Good luck! I hope you get the help you need!
69dream it maybe worth posting your other health issues as thyroid issues effect the whole body as hormones it secretes affect a lot of target tissue/glands
My GP is useless and he has actually admitted he knows nothing about thyroid disease. I don't actually involve him now and I do my own private blood tests through Medichecks and if I need to I source my own medication. I have had to do this because they have never helped me in the past 12 years. You can read my story on my profile page if you are interested. The treatment of thyroid patients by the NHS is dismal. I actually used to work for the NHS a few years ago and my husband was a hospital manager so we do know the system. Unfortunately most doctors including Endocrinologist stick to the NHS guidelines which is going by the TSH which is a pituitary gland hormone not a thyroid hormone.
Can you put your blood results on here? We need the TSH, T4,T3 and any antibodies results you might have. Also if you have any vitamin levels like B12, Iron & Ferritin, Vitamin D and Folate. All these need to be optimal for the Levothyroxine to work.
I have had more help and support from sites like this one and others in the US than I have ever had from any doctor.
Just to add I did ask my local MP to write to Matt Hancock about my treatment or lack of and also the NHS guidelines if you scroll down my threads on my profile page you will see the reply I got.
I am not the only thyroid disease sufferer who is in the same situation and this is why sites like this one exist.
Go onto the NICE website - National Institute of Clinical Excellence - and download the thyroid patient treatment pathway.
The pathway will tell you what your GP should be doing. You probably need to see an Endocrinologist if your ranges are ok and you still feel ill. Or just cut through the NHS completely and see a private endo - It costs £150 and its was the best £150 I’ve spent in my entire life! The forum can private message you good endos in your area.
Just to add make sure the Endocrinologist specializes in thyroid disease because a lot of them specialize in diabetes. I have the list of recommended Endocrinologist myself and some of them are expensive so if you can't afford it you might have to see one through the NHS.
I have just done a bit of research about your practice and the NHS Mid Essex CCG are is responsible for effective clinical commissioning of The Trinity Medical Practice.
Here is a link to make a complaint.
midessexccg.nhs.uk/contact-...
Thank you so much. x
You're very welcome x
If your TSH and FT4 results are not out of range then the GP surgery will likely have a policy not to test T3. My surgery openly has that policy. Because T3 has to be monitored and supplied by an endo in the first instance my GPs admit they cannot test for it or prescribe it. They also admit that their knowledge of it is limited.
in London my NHS standard thyroid panel includes FT3 the only thing I can't get done is RT3.
RT3 is not worth doing. Raised RT3 can be down to many things only one of which is thyroid related.
Can you PM me with details of your private Endo please? I'm having massive issues with my doctor over my meds and just want to find someone to listen to me who actually understands what I'm talking about and medicated me properly.
So are you taking 100mcg levothyroxine everyday
Do you always get same brand of levothyroxine
Bloods should only be tested after minimum of 6-8 weeks on constant unchanging dose and brand of levothyroxine
What vitamin supplements are you currently taking?
Important to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS
I meant to also say, my doctor refuses to discuss other makes of Levo, she advises me "they are all the same and we only do the Mercury Pharma, but they are all exactly the same"
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Personally I only ever take mercury Pharma. But it doesn’t suit everyone
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Many patients need lactose free levothyroxine
Teva, Aristo and Glenmark are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Research on malabsorption issues
academic.oup.com/edrv/artic...
Gluten intolerance and malabsorption
thyroid.org/wp-content/uplo...
Lactose intolerance
ncbi.nlm.nih.gov/pubmed/240...
Lactose intolerance was diagnosed in 75.9 % of the patients with HT
read.qxmd.com/read/24796930...
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
Many thanks for all the info, the really sad thing is that I've had to research on the web and come here, for information that should have been given by my GP.
GP’s rarely aware ....and many endocrinologists are only diabetes specialists and unaware too
Levothyroxine may be the 2nd most prescribed medication....but there’s an extraordinary lack of knowledge or interest in helping the 10-20% of patients who struggle to recover on just levothyroxine
With around 2 million people in the U.K. on levothyroxine, that’s a lot of patients left struggling on their own
Hence this extremely busy forum ...111,500 members and growing
As I'm doing a range of tests next week I stopped all vitamins etc a week ago, I was on zinc, B12, D, solenium. The problem is that my doctor is either completely ignorant or she deliberately lies to me. This is a typical conversation: Hello doctor, I'm having real problems with this Levothyroxine, it's making me ill......... I doubt it's the Levothyroxine as your TSH level is fine........... but I've still got most of my thyroid symptoms but now my vision is not right, my legs and calves are aching so badly that I can't walk very far, I have problems with my waterworks, I ache all over, I just feel very weak and my sleep pattern is totally disturbed........ you have to remember that you're not a young man anymore, you're fine and as I say, your TSH is normal........can we not test for T3, RT3 etc?...... because of government guidelines I cannot test you for T3, I cannot prescribe T3 and I am not allowed to even talk to you about it......I will pay for the Lab test myself, could you just draw the blood for me if I pay for the test kit?..... no, no I can't do that and I cannot talk to you about it....... I just feel really terrible, some days I stay in bed as I'm so lethargic and achy..........how do you feel mentally?...... well, to be honest, I get depressed sometimes because I'm no longer capable of doing anything...... is it possible that your symptoms could be psychosomatic?..... as you can see, my hands are like wrinkled prunes a lot of the time, my skin overall is now totally dried out and looks like the skin of a 100 year old person, and I do not have a habit of imagining things, all of this could be answered if you would engage with me properly and just suggest which private tests I should have...... right, if you can come back between 8 and 10 any day, we'll do another blood test and see how you are now..... is it going to be a different test or the same as all of the other 15 or so that we've already done?...... it'll tell me how your TSH is now, get that done and we'll talk again.
It's Groundhog Day.
Sending you a hug 🤗 I think you need one.
That's totally rubbish and wrong. My GP will test my FT3 and my TSH is always done with FT4 even if I didn't ask for the FT3. They can test it. They can talk about it. They might have difficulty prescribing it, I'm not sure. The lack of talk about it for me is that the GP just sees all my results are in the range and because he doesn't understand the Dio2 gene test results, he says there's nothing he can do. But that's a different argument, that's about his lack of knowledge. He's never refused to test FT3.
Yes ...typical
Increasingly NHS lab refuses to test Ft3, or sometimes even Ft4, if TSH is within range
Getting FULL Thyroid And vitamin testing privately is first step ....and I agree it’s annoying that they won’t even help with blood draw
Follow SeasideSusie tips on how to do DIY finger prick test
Hi 69dream
Your symptoms sound more like adrenal or testosterone issues. From one comment in your posting I'm guessing you're male? If you go down the private blood test route, I think it would be a good idea to have a testosterone test (this could have an impact on adrenals as well). You could also get one for adrenal health, but the testosterone one would be best to do if nothing else.
Sincerest apologies if you are not male. But even so, hormones and adrenals come to mind, purely from the pain aspect.
Good luck
You may be correct, but a lot of people with hypo-T suffer very stiff and painful joints due to 'mucin' build-up. I once pointed out to my GP that 25 years of all-over 'arthritis' had been banished after a few months on T3 monotherapy (private). She wouldn't believe it, and retroactively diagnosed me with "psychosomatic arthralgia"! Ain't no such thing...🤬👺
Wow! I can relate to this - although my GP is outwardly sympathetic and understands that Beta-blockers make me ill she appears not to make any connection to my hypothyroidism (other GP's haven't either) Then last December she asked if I would like to change my mood (didn't know I had one) and prescribed Mertazapene - anti-depressant. I did take it and the episodes of palpitations, dizziness and awareness of my pulses did subside for about 3 months.
On a check-up call she suggested I took it for 12 months. I did sleep through the night but could hardly wake in the morning. As time passed (6 months later) my muscles appeared to become inflamed, and some of the other symptoms re-appeared. Anyway, I weaned off, especially when I read the paperwork in detail - I was having the side effects AND it advised prescription of 4 to 6 months OR UNTIL SUICIDAL SYMPTOMS subsided!!!!! I didn't know that I was suicidal and it suggested that I wasn't really being listened to and found the affect disabling.
At no stage over the years has any doctor (to my knowledge) checked my B12 level - which deficiency (I've read on this site) can affect the heart!
So I do sympathise - perhaps the medical schools need to improve their teaching about Thyroid problems and the treatment! - good luck.
Same experience here. Debilitating symptoms started four years ago. Neck, arm and wrist pain so bad couldn't lift my arm, crushing fatigue, couldn't think or focus, skin problems, and the list goes on. GP was diagnosing me with fibromyalgia and testing for arthritis and auto immune disorders. Both of my Drs got tired of me so I've booked an appointment with a private practice who will have more than 15 minutes to spend with me. I'm on the edge of losing my job over this because my Drs kept ignoring my pleas to put me on a leave from work. I took the leave anyways. They don't see the suffering and daily struggle people go through. If you don't fit the ABC 123 paradigm of treatment then there has to be something wrong with the patient!
Yep - as I said to the previous post I really think that medical schools should include more about the affect of thyroid problems and the treatment. Its as though they graduate thinking that they know it all - I thought Doctors would have more of an open mind. It took two years (20 years ago) to even be diagnosed. . . and a chance appointment with a locum who suggested that there were 3 possible reasons for my symptoms and she would test for them - the result hypothyroidism! My own GP was so nervous when she gave me the result. Hmm?!
Regardless of FT3 testing, which some GPs and labs refuse to do, (and which will not generally be done if your FT4 and TSH are within range), if your FT4 and TSH are optimal, your GP should be addressing your remaining symptoms, which may not be thyroid-related at all. You should, at the very least, be given a comprehensive range of blood tests to check your general health. Regarding private blood test results, diagnoses and recommendations, be aware that GPs are under no obligation to accept or acknowledge such findings, even those that come from from an NHS source, so check that your GP will actually accept information gained privately before you pay out, unless you are going to continue in the private sector. I would recommend giving your GP a list of your symptoms, ask what they think could be the cause, and give them a chance ti investigate. If you are concerned about the brand of levo you are taking, and Mercury is the only one supplied to your practice pharmacy, simply get the prescription transferred to a different pharmacy, or ask for a written one that you can take elsewhere in person. Hopefully you can get things sorted out soon.
Thank you for your advice but the biggest problem I've got is that my doctor refuses to listen, so much so that I started listing my symptoms in emails and sending them, which resulted in them ignoring them. When I complained about the unacknowledged emails I was told "oh, that email address is broken, it doesn't work anymore" I then asked for a current one which she gave me, I emailed various to her and it was fine, then when I emailed her about my symptoms and commented that I'd done it to make a record of what I was complaining of, I got
"*** This is a generic practice email address and is not regularly monitored, nor is this a confirmation of receipt of your email ***
Please do not use this email address for general correspondence
We only use email for limited correspondence to verified NHS senders.
You are responsible for the security of the information you are sending and therefore you must assess its sensitivity and whether email is a secure enough method of communication.
Any submission to the practice for general email enquiries will not be acted upon.
Any submission to the practice for these services by email will not be acted upon.
And if I ask for a current email address this is what they give me, but then refuse any email where I try to make any kind of record.
Can you try writing a regular letter and sending it by registered mail? I don't know the UK postal system, but in the U.S. I always send in my tax payments by registered mail, return receipt requested. Someone on the receiving end must sign and date the attached green post card, which the postal service sends back to me. This gives me written proof that the envelope was delivered. It costs about $6 US extra, but it's worth it to me. One time the government tried to claim I hadn't paid, but I had the proof that I sent them something. It was up to them to find what I sent and prove that it wasn't payment. They were not able to do that, given my proof of their receipt, so they couldn't charge me late fees when I sent them a replacement payment.
Thanks for your reply., I have documented all that's happened and once I have a proper diagnosis I will take the appropriate action.
Good luck - persist - I'm going to as I can't believe just how many others have had similar problems with being heard and believed.
Hi. This is just disgraceful. Politely I would recommend a new dr. You have nothing to lose because this GP is biased. A new GP will have a fresh set of eyes and I agree with other posts about testosterone and adrenals. I wish you the very best.
I have exactly the same problem with my GP practice. They insist I use the phone, knowing I have verbal aphasia and severe apnoea, and therefore can't manage phone conversations.
Surely, that is discrimination and against any and all inclusivity rules?
My argument (with the practice) exactly! I know I need to follow it up...😣
It's now pretty clear that having FT4 very high in (borderline) or above the reference range increases modestly the chances of things like atrial fibrillation. It is simply wrong to pile on more and more thyroxine in therapy to try to force a healthy outcome. FT3 is an absolutely essential measurement to discover what your body's response in converting T4 to T3 is, for a given dosage. And also piling on T4 is counterproductive in that the excess is converted to the inactive substance reverse T3, which the body rapidly gets rid of.
I think that unfortunately, because my doctor does not have enough knowledge regarding thyroid, she seems to think that my symptoms are imagined. Once you have a doctor who believes that you are a bit of a hypochondriac, there is no real prospect of getting much in the way of decent treatment.
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