I am incredibly frustrated and looking for some advice.After months of back and forth visits I was finally diagnosed with an under active thyroid two years ago by my gp. Since then it has been a constant fight and struggle to get my thyroid medication ever increased despite being symptomatic. Eventually I had had enough and requested to be seen privately as my prolactin levels had risen to 1600. On seeing the specialist she advised that if you are being treated for an under active thyroid the goal is to have your tsh less than 2 not the 5 that the gp had been using. Since then my levothyroxine has finally been upped from 25 to 100 in the past four months but I am still every night coming home and going straight to bed amongst other symptoms. I had asked my go to test my t3 levels but he refused and said that wasn't available on the nhs? Has anyone else had a similar experience or can offer any advice.
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elliearc
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Unfortunately, as you have discovered few doctors know best how to diagnose/treat patients with hypothyroidism, so that's why so many who are on this forum 'do it themselves' with the help.
Most doctors appear to have no understanding whatsoever about hypothyroidism or symptoms of it. Also many mistakenly believe that once our TSH comes within the range (usually top of 5) they say we're on a sufficidient dose. Not true. The aim is a TSH of 1 or lower or suppressed whichever makes us feel well with relief of symptoms.
They can keep us on too low a dose regardless of our symptoms. Before the blood tests and levothyroxine were introduced as being preferable to being diagnosed with clinical symptoms and being given natural dessicated thyroid hormones, with increases until symptoms were relieved and doses were around 200 to 400mcg of NDT which suited many better.
Ask your doctor for an increase in levothyroxine and say you have taken advice from the NHS Choices for information/advice on hypothyriodism, Thyroiduk.org.uk and the aim is a TSH of 1 or lower whichever relieves your clinical symptom.
I don't know about prolactin levels but if you email louise.roberts@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr. Toft who was a President of the British Thyroid Association and in it (question 6 I think) he says how low the TSH can go and it is below 1.
Unfortunately he's right about testing T3. My dad asked his doctor who agreed and did the blood test but then the lab refused to test it on request from a gp. I think if you're lucky you can get it tested if an endo requests it for you but alot of us test our own with medichecks or blue horizon x
If you go on to thyroid UK website they recommend who to get them tested with. If you go through a link on their website they sometimes get a donation to support the charity. You can either do them at home with a finger prick or pay extra to have venous blood drawn at a hospital or at home. Sometimes if you order the venous blood kit your surgery may do it for you for cheaper.
Ive used blue horizon and medichecks and can recommend both. I prefer medichecks personally but usually go off price as they both regularly have offers and discount codes.
You need your tsh and t4 testing with t3 so the lovely people on here can help you interpret them better as they all fluctuate.
If you haven't had them done already it can be worth getting b12, vit d, ferritin and folate checked as these can cause similar symptoms and effect how your thyroid works and uptake of meds. It's common for them to be low in people with hypo.
Medichecks thyroid ultravit and blue horizon thyroid +10 tests all of these as well as antibodies to diagnose autoimmune hashimoto's as the cause of being hypo.
Before I was diagnosed I got the basic test of tsh, t4 and t3. I wish I'd gone straight for the ultravit or +10 as when I did a couple of months later I was diagnosed and started on treatment for b12, vit d and folate deficiency. These tests wouldn't have been done by my gp for much longer
They think it's due to mismanagement of my thyroid for so long. That's what I don't get though my prolactin has come down a bit to 790 but my tsh has risen . X
elliearc - has your pituitary been checked out? I would be happier if all possible causes for the high prolactin were considered (even certain medications), they might even have it the wrong way round..
I don't know if this helps but the lack of doctors' knowledge regarding the treatment of hypothyroidism is world wide. It's not just the NHS, I have the same problem here in California. You have to study as much as you can on this subject, in the beginning you must have private blood tests so that you can relate your own symptoms to what you read and then you have to get on the Internet to buy medication that is appropriate to your situation. That is what many of us here have to do. Private blood tests are a bit expensive to begin with but after a while you stabilize and you do not have to measure so often unless you detect any change.
The frustration of trying to do all this through a doctor is that you can spend months arguing for, say, a free T3 test feeling ghastly ill until you finally get an appointment and then he says NO! When you get yourself in the driver's seat you will know what to request rather than asking the doc what he thinks you might need - because he will not know due to minimal education on this subject at medical school. I had absolutely no medical education whatever but through persistence and going a little manic, I learned enough to get back to good health, and just as importantly, acquired the confidence to ignore my doctor's incorrect advice.
And, of course, communicate with all of us on this forum, there is always someone who has suffered and recovered from something that one has - it's really amazing, straight out of left field you can match your situation with someone's comment or answer.
Sorry for the late reply I have been swamped at work. This forum has been incredibly helpful and I am so grateful for all your advice. It is definitely becoming clear that I am best taking things into my own hands and following all the advice I have received from you all. I am planning on doing a private blood test in the next few weeks and fingers crossed at will give me some information that I can work with xx
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