Looking for reviews of specialists in/around London I have normal TSH (1.16mU/L) & T4 (17.2pmol) & ferritin is under at 92ug/L??

Hi everyone,

I'm a newbie and unsure if my novel is allowed, please let me know if it's not or its posted in the wrong forum etc...

I've been very ill for over twenty years and I'm 42 now.

I was tested for thyroid issues twenty years ago and told it wasn't my thyroid. I never looked at it again and eventually, though reluctantly accepted Fibromyalgia amongst other diagnoses.

My mother has virtually the same symptoms as I have although she's partially bald now and 17 years older than I am, but we are estranged and don't speak to one another so we couldn't have known each other's symptoms, we only discovered our common symptoms last year due to a family matter over my autistic nephew (sorry the mental health diagnosis is constantly hovering over me so I'm always quick to say it's not psychological!).

With the exception of severe hot flushes I've had classic hyperthyroid symptoms for decades, but of late I have gained a little weight.

My throat is permanently swollen now and my new GP sent me for basic bloods (FHS and T4) which were pretty much bang in the middle of the scale.

My GP has put me on 60mg of propranolol a day which is a God send in honesty and sumatriptan which I'm taking like smarties (my mum gets huge doses of Botox for her migraines as well as masses of sumatriptan but it's still not enough)

I'm desperate and broke as I'm passing out constantly now with severe upper kidney pain amongst other symptoms like enduring migraine, vomiting, hot flushing 24/7, muscle aches, tremors, spasm, hair loss, severe throat issues, earache, tinnitus and allergy etc and the financial impact on us is huge now, as a family we're at breaking point.

All that said, we have scrapped enough money together so I can see a specialist privately but I'm terrified I'll spend the money and still end up without any answers and I'm looking for any reviews from anyone who has seen a professional that's helped especially when their NHS bloods were normal, ideally in and around London and home countries, I'll travel to France if need be.

So sorry for the novel, I'm feeling very alone in all of this as folks are beginning to think it's psychosomatic given that the only problems on my bloods are low B12 and eosinophils.

Thank you all so so much. Mel

5 Replies

  • That last sentence ......"only problems are low B12"

    How low? Is you GP giving you injections. Are you supplementing? If do how much?

    What about folate levels ?

    Marz will probably be along to say more - she posted this link last week for film outlining how important B12 is

    Ferritin and Vit d - good levels also very important - not just "in range"

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

    Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately


    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

  • Well, if you want to come to Paris, there's a good doctor here. I used to see him. But it will cost you an arm and a leg!

    Before spending all that money on a specialist you are unsure of, it would be a good idea to post your labs on here and let people have a look. Don't forget the ranges, though. Just because a result is in the middle of the range, doesn't make it good. some need to be at the top of the range, and some at the bottom. It's a question of knowing which it should be. People here know. A lot of doctors don't.

    That B12, for example, that will be causing you a lot of problems. And other things are probably in range, but that does not make them normal - or optimal! So, let's have a look at those results and see what we can advise. :)

  • Your ferritin result looks fine so we need your vitamin B12, folate and vitamin D, but please put the ranges.

    As if any of these are sub-optimal, and sub-optimal results include what doctors say are "normal", then you will be feeling ill and it can decrease your white cell levels.

    Once you give us the results with ranges we can tell you and point you to information on how to treat it. Unfortunately in many cases you will end up self supplementing plus testing again when appropriate, as NICE guidelines mean doctors won't treat you if you are within range.

    In regards to private doctors most also work in the NHS so you won't get better treatment but just faster treatment. Also the vast majority if doctors aren't trained in nutrition for optimal health so seeing one to sort this out will not help you.

    So save your money and start a new thread with your current test results. Post them in the form of:

    test result (range)

    For example:

    TSH 7 (0.25-5)

    Vitamin B12 228 (>200)

  • Thanks for your reply blue bug, my Vit D is low and I'm on a steady dose of 5000ug/day. I only discovered my B12 was low last week when I went back through all of my medical records and if I get some energy today I'll the number but I'm now supplementing with B12 sublingual methylcolbalamin at double dose for a couple of weeks until my GP is back from his holidays.

    My bloods never show anything of merit to be honest. I used to be on liquid zinc so I'll go back through bloods to find out why the prescribed it for me too.

    Thank you so much.


  • Writing things like "low" doesn't enable people to help you. Put in the numbers.

    Also your blood tests may not show anything to a doctor but there are posters on this forum and other health/fitness practitioners who your so called "normal" results have a meaning. For example if you have had repeat full blood counts over the years you may notice your white cell count has increased or decreased but still be in range. However if you looked at this with your TSH levels you may see a pattern.

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