This is the first time I'm posting. I've been suffering from thyroid problems for almost 29 years. I was diagnosed with a hot nodule when I was 15 and as a result had a partial thyroidectomy. I've been on levothyroxine ever since. I felt my thyroid was controlled for most of this time but in the past 5 years I don't feel well. The main issue is hair loss which is constant (daily). There is no history of hair loss or thinning in my family. I've been to my GP countless times and every time is the same thing, my TSH and T4 are within the guideline levels so my thyroid is ruled out. I was anaemic and have been on ferritin for the past 4 months. I'd like to see an endocrinologist but would like to have a recommendation from someone that has seen a "good one" and was happy with the outcome. Could anyone recommend an endocrinologist that they liked? If one of your symptoms was hair loss that would be a bonus.
Thanks in advance.
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I'll start by saying no to your question. I can share my experience though. I've seen two, one NHS the other privately. My cousin is also a Consultant but in Canada. I saw them visibly perplexed, indicating a lack of real knowledge of this very specialist area. They simply follow the old TSH rules mantra laid down by the ''guidelines''.
There used to be a popular and experienced Endo who helped people but I think he was a one off and sadly died.
In general I find doctors make little attempt to get to the root of anything. Just follow blindly the most simplistic things they know.
A starting place maybe a teaching hospital where someone has a special interest in your issues.
Thanks Fibrofoggy. I have been having the same experience with doctors in general in the UK. Very few have the ability to get to the bottom of multifactorial/complex cases. It's disheartening.
I am, however, still hopeful that there will be at least one person who will have had a good experience...I hope?
Thyroiduk.org.uk - is the website and we are under its 'umbrella'. It is a very small charity with three people in the office - one is Lyn Mynott who started Thyroiduk and has two people to assist her they work in the background to try to get a change of attitudes of the medical professionals.
I'm looking for recommendations not just a list. I think a recommendation is much more valuable as it is based on the patient's experience with that particular professional. Once someone has seen a practitioner, they can gage whether it is someone who has a more holistic approach or someone that adheres strictly to the book. I've seen so many specialists recently privately and have spent some serious money. Most of which, I'd say my money was wasted as I felt I was not listed to and as a result my problems have not been solved.
I tried to get in, via the NHS, to see a highly recommended Endo at Kingston Hospital but he’s no longer working there. He took early retirement and is now working privately. PM me for his name.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Hi, I would agree with Slow Dragon, we need to become experts on our thyroid test results. Your doctor telling you they are within range is not good enough as GPs are rarely clued up in thyroid conditions. you can be ’in range’ and still need a dose increase. Please get a print out of your latest results and post them on this forum. If only TSH and T4 are being tested, Then maybe you would consider doing a home blood test through one of the companies recommended on Thyroid UK’s website that will also test free T3, which is the most important thyroid hormone. I hope this helps.
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