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Can anyone recommend a thyroid-knowledgeable doctor in London?

(13 Posts)
Lovepancakes Wed 05-Feb-14 22:18:22

Ideally who I can ask to be referred to by our GP. I'd be so grateful as just not convinced my blood results rule thyroid out but I know too little.

For example I have
Fatigue (been ongoing and this is the hardest health issue I have)
Infertility /few periods
Skin very dry (it peels if I don't use E45 on my face)
Vitamin D deficiency (working on this)
Severe gluten intolerance (started 5ish years ago)
Brain fog
Can no longer walk far without getting v irritable later as tires me

I just know there is something odd going on and thyroid fitted the bill until my results said normal- I don't understand what they mean but Serum free T4 (XaERr) was 13.4 pm ok/L (9-23)
Serum TSHIRT level XaELV 1.48 miu/L [0.3-4.2]

I asked once here before but i don't think it can be coeliac related as I've been strictly off gluten for years now?
Maybe it is just the Vitamin D deficiency otherwise so I should just be patient to see if working on this helps (my bones seem to have been affected according to blood tests and they ache slightly)
Thanks if anyone's read this far

RockinD Fri 07-Feb-14 12:22:38

I�m sorry, I can�t help with a doctor � good thyroid doctors are few and far between and the best of them all has not long died.

You clearly have symptoms that could be ascribed to a thyroid condition and the gluten intolerance and vitamin D deficiency are often all part of the same picture.

Your results are only normal in the sense that they are within the reference ranges. Your TSH looks pretty good, but your FT4 is low in the reference range. The T4 converts to T3, which is the active hormone your body needs and if you are low in T4, which you are, you will inevitably be low in T3, which could explain your symptoms.

I�m pleased to see you are working on the vitamin D. There will undoubtedly be a protocol in your area for getting this up to scratch, but it may well have passed your GP by. Because vitamin D is fat soluble, you need gelcaps or spray instead of tablets, and the equivalent of 2,00iu per day to raise your level steadily and keep it where it should be.

To find out what is really going on with your thyroid, you really need to get FT3, TPO and TgAB tested. The NHS can do all of these, but the lab may resist, whatever your GP says, so if necessary you can get them tested privately through Genova Diagnostics or Blue Horizon.

At the same time you need to get B12 and folate tested and also serum ferritin. B12 needs to be above 500 and ferritin above 70, although again your GP may say that they are �normal� if they come back within the wide reference range.

That�s something to be going on with, but think about coming to join us on the thyroid support thread and we will see if we can get to the bottom of this for you.

Lovepancakes Fri 07-Feb-14 16:28:45

Rockingd you are so wonderful and I wish I could do something wonderful for you too. It's most thoughtful of you to give me all this information and I'm so grateful to have something more to go with. Thank you, thank you and I shall follow every part of your advice. I'm humbled by your kindness explaining it all.

ohfourfoxache Fri 07-Feb-14 16:44:37

Jeremy cox at st Mary's - he's great

There is also a chap called Paul Harriman who is also really good - don't know where he is based now though.

I would strongly advise against the team at the royal free - they don't know their arses from their elbows IMHO

Hth!

themessyapron Fri 07-Feb-14 16:55:08

Dr Hurel
Private at London Bridge
Nhs at UCLH but you might see one of his team
One of the best apparently.

Do you have your thyroid levels results? I would post them on the thyroid thread in general health. People will be able to tell you if they are good/bad. GPs are useless re results.

themessyapron Fri 07-Feb-14 16:57:03

Just seen you have your results
This is the thread www.mumsnet.com/Talk/general_health/1887250-Support-thread-for-those-with-thyroid-related-disorders

Lovepancakes Fri 07-Feb-14 17:01:50

In fact some of this was on my recent blood test ive just seen, my B12 was446 ng/L and serum ferritin was52 ng/L. But I don't have the other things

Lovepancakes Fri 07-Feb-14 17:05:28

Oh this is wonderful! - I will ask for a referral. And maybe then they can test for the FT3 etc there. Thank you so so much. I feel so cheered I don't have to just give up and carry on battling feeling useless whilst our children need and deserve so much more energy from me

RockinD Fri 07-Feb-14 19:43:38

blush Thank you pancakes. The NHS are so useless where I live that I have had to get to grips with all this in considerable detail, diagnose myself, present a case for treatment and stand on them every step of the way, otherwise I would have been on the scrapheap years ago.

Happy to help.

AttilaTheMeerkat Fri 07-Feb-14 19:52:09

www.thyroiduk.org.uk/tuk/index.html

The above is the homepage of a very good non woo website called Thyroid UK about the thyroid gland and issues pertaining to it.

I hope this will help you.

mercibucket Fri 07-Feb-14 19:52:47

do you actually have celiacs? i know you say severe intolerance but maybe it is celiacs?
t3 is a good test to do but remember thyroid symptoms are similar to other things, tbh i would also be looking elsewhere for answers.

Lonecatwithkitten Fri 07-Feb-14 23:13:02

Like rockin I was thinking your symptoms are very typical of pernicious anaemia - low B12.

fivecupsoftea Sat 08-Feb-14 12:15:30

Hi Lovepancakes. I too suffer from brain fog, and find that walking a lot makes me feel that I need to sit down. Last year I was posting similar things to you, thinking it must be my thyroid, as the symptoms seem similar, I now know that I have POTS there is a website POTSUK that explains it. POTS affects your digestion and a lot of people improve with a gluten free diet. pm me if you like (I've never pm'd anyone I'm not sure how to do it to be honest!).

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