I have been diagnosed as hypo for about 5 years, and have never been seen by an Endo. I have been coping with my symptoms up until now but am starting to feel worse than before I was diagnosed, despite taking my meds as prescribed and my bloods being 'within the normal range'.
Is it worth asking for a referral or am I just wasting my time? Not sure what else can be done for me...
If anyone could offer me some advice I would be very grateful.
Many thanks,
Nikki
Written by
alocinrewog
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After my experience of being referred to an NHS endo i wish I had done my homework first. I would get all your results going back to when you were first diagnoised. Put them in an easy to read format with changes of medication and dates. Work out what your problems are, not feeling right is not going to cut any mustard with them. Then, before you ask to get referred, call up a couple of hospitals in your area and speak to the secretaries of the endos and say that you are looking to be referred and wanted to know if xxx prescribes any other mediation other than Levo if required. Or ask if they are open to alternatives to T4 only.
Don't be agressive about it (most of us don't have the energy to be aggressive anyway!) but there is no point in being referred to one of the closed minded Endos. If you find one, like I have, that said that she has seen Armour being prescribed in letters, then you know they are open to options. I am going to see this one privately next week.
It takes a lot of energy this blasted illness, so why waste it on being seen by someone who doesn't really care.
There are GOOD Endos within the NHS Mine is absolutely brilliant.. I had a very bad problem the other day I tried to contact his secretary she wasn't available for 24 hours. The switchboard at the hospital paged him and he rang me immediately plus he was in Scotland on holiday. I think that is amazing. Most of the Endos that you see privately also work at NHS hospitals a few times a week. I don't know where you are situated but if you are in the East Sussex area let me know in conversations. Maybe I can help I can but try. There are a lot of people in N.H.H that are very caring. Mind you the first one I saw was a nightmare but then people have gone to Birmingham to see a private Endo and it has been a total disaster. I think it takes time to find the right one for you. Don't give up
I was diagnosed with Hashimotos in april 2011 (early days I know) & my GP is referring me to an Endo at the Royal Sussex Count Hospital in Brighton. You mention you were treated in East Sussex. Could I ask where, by whom & was it successful?
Hello, it would appear you are in East Sussex area. Your endo sounds brilliant. Would it be possible to know who and where he is. I am in Brighton and both my daughter and I would like a good NHS endo. I'm not sure how to contact you privately. Do I just send you my email address?
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<b>Updated on Jan 9 2011 10:53AM:</b> I was referred to an Endo as soon as I was diagnosed hypo. After two years I was prescribed a trial of T3 to be added to T4, provided I stayed within 'range'.I do not think they would prescribe other than T4 initially. For me, T3 is amazing. I asked to be referred back to my GP so that I can now have some control over my meds myself and not be 'raised or lowered' according to my blood test.
I was very interested in you saying that you have found a verygood endo in East Sussex well we live in West Sussex and not been able to find a really good endo so far, are you able to tell me how you found this Dr. I would be grateful.
Hi, I have just answered your other question but will answer this one too.
There are many people who do not see an Endocrinologist when they are diagnosed as they are fortunate enough to take their levothyroxine and get on with it.
Then there are people like me who had a battle to be diagnosed and in my case an Endo told me that I was not hypo even with a TSH above 7 grrr
Then there are people who still have symptoms like yourself who are told they are fine because their TSH is within range. In many cases an increase in needed, or maybe two increases in meds as for many of us we feel heaps better when our tsh is below one and our free t4 at the top of the range.
Not all Endocrinologists are good, there are many out there who will tell you that your problems are not caused by your thyroid.
It is impossible to say that you would be any better off if you saw an ENdo because of not knowing whether he/she would help.
You may need T3 adding to your meds, all I know is that thousands of people are suffering either from not being diagnosed or because they are not taking enough medication.
If you don't get any further with your doctor (ask for blood test results first of all and let us know) then if you are interested in seeing a doctor privately then Dr Gordon Skinner would be able to help you.
Try your GP first, if you are not happy with him/her then see a different one and insist that you aim for your tsh to be under 1 and your free t4 to be at the top of the range!
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