Endo not available on NHS?

[seaker59]

NHS patient.I have been diagnosed with hypithyroidism for 8 years. It took 2 years one operation to prevent 365 days per year period. Endoscope to check my stomach because vomiting each night given pump inhibitor and gaviscon that I could not swallow. Xrays to check my knee when it could take no weight. Given crutches and 3 different diagnosis from broken bone to cruciate ligament problem.Sent to speech therapust for sore and hoarse throat.Calorie control diets, cost of joining slimming world. Cost of vitamin supplementation. Changed the way I work from being well paid professionnal to self employed because of symptoms. Hot flushes all day despute not having a show for 3 years.Surgery insisted bloods normal for two year could not possibly be what I suggested ie thyroid problem. Now on 150mcg of levo and no better but apparently bloods fine. Never provided with test results.Surgery cancelled medication because I did not go for blood test when their own appointment system prevented me from doing so. Finaly wrote a letter asking to see endo and complained. Miracles happened got a call the next day appointment available that evening to see GP and meds re-instated. Told Endo not available on NHS now going private and they will provide referal letter. I am laying in bed with terribble joint pain cramps and swollen knee and ankle while writing this post. The sad thing is that I am not an isolated incident.I have lost faith in the medical profession. They dont listen and they are completely useless in the art of diagnosis and they want a pay rise. I dont think so.

[shaws Administrator]

Welcome to our forum and I am so sorry you've had to go on the terrible journey on your own.

On this forum we have many sorry stories and yours is awful.

It is now time to take your own health into your own hands but it will take some time but at least you can be hopeful that there may be a rainbow at the end.

First I don't know whether you can afford a new blood test for thyroid hormones. We have private labs which can do a full blood test which consists of more than TSH and T4.

We need TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. (if you've had antibodies tested before you don't need it).

All blood tests have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and test and take afterwards.

Your GP should test B12, Vit D, iron, ferritin and folate. If we have deficiencies in these - all have to be optimal - we can have clinical symptoms too.

I will guess your Free T3 is low (and I am not medically qualified) but had undiagnosed hypo).

I will give you a link to TUK blood test results and you can read why FT4 and FT3 are necessary if we don't feel well.

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

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

The reason many of us do not get referred to Endocrinologists is it is assumed that doctors are able to treat us. It might be that many do well on levothyroxine but many, particular on this forum, do not or need some advice. Sometimes dose is too low to keep the bloods 'in range' so not optimal for the patient.

Always get a print-out of your results with the ranges for your own records and you can post for comments.

[seaker59 in reply to shaws]

Many thanks for your reply. I will be collecting the letter from the surgery in order that I can book a private consultaion. I will keep the forum updated if there is anything positive I can share with other sufferers.

[shaws Administrator in reply to seaker59]

Quite a few members have been very disappointed with private consultations and spending money for no reason.

If you email [e-mail] she has a list of 'sympathetic' doctors. One whom may be near you.

[shaws Administrator]

This is a link to private labs.

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

Levothyroxine does not suit all patients or cannot convert it to sufficient T3.

[TracyJackson123]

Oh my goodness that's terrible! My knee is also getting worse the fatter I get. Now I am armed with more information I am trying to see my GP ASAP but it's not easy!

Hope you get some relief soon & get some much needed help xx