I have asked (begged) my GP to be referred to an endocrinologist. They will not do this. I am currently on levothyroxine. I’m not feeling great. I was diagnosed with hypothyroidism 12 months ago with little support
Can anyone explain the process of accessing a private endocrinologist? I have never done this before I live in the West Midlands/Shropshire border area.
Browneyes100
Most private specialists/endos require a referral from your GP. However, there may be a few who don't.
You can send for the list of endos (private and NHS) from ThyroidUK:
Email - tukadmin@thyroiduk.org
See who you can travel to. Ask on the forum for any feedback on any particular doctor to be sent to you in a private message. We can name doctors on the forum to ask for feedback by PM but we can't discuss individual doctors openly on the forum.
If you have anyone in particular who you think you might like to see then ring and ask if they need a referral.
There is also a list of private GPs and practioners who have a special interest in the thyroid which you can obtain from ThyroidUK by clicking on the "Please contact us" link here:
thyroiduk.org/help-and-supp...
You may not need a referral at all to see one of these. Again, you can ask on the forum for feedback by private message.
Thank you so much. This is a new world for me. No one in my family or friendship groups has this condition. Trying to navigate a very confusing landscape for me. I just want to feel better and understand how to do this.
Thank you for taking the time to reply to me xx
Browneyes100
It could well be that experienced members here may be able to give suggestions that will help you before going to the expense of seeing a private specialist.
First step is to get full thyroid/vitamin testing. I doubt very much whether your GP will have done all the necessary tests, some aren't done at primary level. We have recommended private labs who can do all the necessary tests in one test bundle and you can either do this at home with a fingerprick test or you could arrange phlebotomy (extra cost).
Tests needed are
TSH
FT4
FT3
These tests will tell us your current thyroid status and show whether your current dose of Levo is right for you.
TPO antibodies
Tg antibodies
The antibody test will tell us if the cause of your hypothyroidism is autoimmune.
Nutrients:
Vit D
B12
Folate
Ferritin
All nutrients need to be at optimal levels for thyroid hormone to work properly and any low levels or deficiencies (quite common with hypo patients) bring their own symptoms.
The most popular labs which offer this test bundle are:
Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...
Check this page for details of any discounts: thyroiduk.org/getting-a-dia...
or
Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...
Check this page for discount code thyroiduk.org/getting-a-dia...
It's worth getting these tests done before you see a specialist, if they order the tests they will be much more expensive that doing them yourself.
If you want to do a fingerprick test and haven't done one before (it's not the same as a diabetic to test their blood sugar levels) then I have some tips I can post which may help, just ask if you want me to do that.
If you have any current results from tests that your GP has done then post them here and we can comment. You can obtain your results from your surgery in a couple of ways:
1) If your surgery offers online access for test results then register for it
2) If your surgery doesn't offer online access then ask the receptionist (not the doctor) for a print out, don't accept verbal or hand written results as mistakes can be made.
In the UK we are legally entitled to our results without charge or question.
When posting any test results, it's important to always include the reference range that comes with them as the ranges vary from lab to lab, eg
TSH: 2.5 (0.27-4.20)
This is the so helpful. Thank you so much. I will do some digging. I’ve been on my NHS app and it says I can register for my results. All my results have been numbers over the phone (after requesting them).
I cannot thank you enough. I know it’s going to be a long journey but I’ve realised that I need to take matters into my own hands now, as I don’t feel like I’m being listened to.
This is really helpful
I totally agree with SeasideSusie! Given the standard of treatment I’ve had from Shrewsbury endos since my lovely old endo retired, you’d be far better off asking your questions here rather than see one of them. You’ll learn far more! The only reason I still need them is to authorise a T3 prescription (which my old endo put me on years ago) once a year and that’s the extent of their usefulness.
Thank you. I don’t live far from you then. I will be coming back to this group in the first instance before booking anywhere. From what you’re saying I may need to travel to find a specialist (which I’m very prepared to do).
Thank you for taking the time to support me x
You’re very welcome. Thankfully I live just across the border in Wales, so their clumsy attempts to take my T3 away failed miserably.
As SeasideSusie has detailed, we always recommend getting full thyroid and vitamin testing done BEFORE considering booking any consultation
How much levothyroxine are you currently taking
How long on this dose
Do you always get same brand levothyroxine at each prescription
Many people find different brands are not interchangeable
Have you had vitamins, thyroid antibodies and coeliac blood test
Are you currently taking any vitamin supplements
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Test 6-8 weeks after any dose change or brand change in levothyroxine
The GP has been sending me for blood tests every 3 months. GP never explained to me about the 24 hours without levothyroxine. So - thank you. This could also reduce the accuracy of the results.
I will request my results first before sharing. Just checked my NHS app so will call tomorrow. I’ve only been told numbers over the phone (after requesting).
Another unhelpful comment I had this week is that I may be feeling unwell as due to my age (44) I may be entering the menopause. Again with no other offer of some kind of testing or support! This was another shock to me!
If I fund my own testing, will the GP then take more notice? Or do they generally ignore private tests?
GP and private tests …..GP’s vary in their responses
NHS only tests and treats vitamin deficiencies
So if vitamin results show deficient they are obligated to prescribe. But would usually repeat test via NHS first
Essential to regularly test folate, ferritin and B12 at least annually when supplementing, and test vitamin D twice year when supplementing
If vitamins are low, but within range, NHS usually won’t prescribe, but you can self supplement
Thyroid levels
NHS rarely even tests Ft4 these days, and almost never tests T3
But it’s essential to know if taking high enough dose levothyroxine - looking for Ft4 at least 60-70% through range- taking last dose levothyroxine 24 hours before test will give lowest results
Testing Ft4 and Ft3 together shows if you have good conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
For good conversion of Ft4 to ft3 we need GOOD vitamin levels
About 90% of primary hypothyroidism is autoimmune thyroid disease (hashimoto’s) usually diagnosed by high TPO or high TG thyroid antibodies
NHS refuses to test TG antibodies unless TPO antibodies are high. Significant minority of Hashimoto’s patients only have high TG antibodies
Testing both antibodies essential, and are included in private testing
20% of Hashimoto’s patients never have high thyroid antibodies. If you test negative antibodies, it’s worth getting ultrasound scan of thyroid
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
Coeliac testing essential before considering trying strictly gluten free diet
Come back with new post once you get existing results from your medical records
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.
Link re access
healthunlocked.com/thyroidu...
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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
I will get onto this tomorrow. Thank you. They have been reluctant to even share numbers over the phone, so it will be interesting to see how this conversation goes!Thank you again for taking the time to support me.
I’ve had the same experience as you by the sound of it. I was 44 when I was diagnosed. Given levothyroxine, no support or explanation. No vitamins or ferritin checked despite feeling dreadful. Did my own blood tests through Medichecks in desperation and was low on vit D, B12 ferritin and folate. Off the scale antibodies. Gp would only treat ferritin levels and gave me iron tablets. I now supplement myself and do yearly vitamin checks and 3 monthly tsh, T4 and T3. I’m struggling with no energy, hair loss, and general meh. It’s been 10 years now and menopause definitely complicates things as symptoms are very similar.
Sorry to hear this.
When you went back to your NHS GP with your private test results, did they give you medication based on these results? I’m trying to see if they take notice of privately funded tests, which I’m prepared to do. X
No, they scoffed at my private tests. But they did do their own test and said everything was borderline and eat more veg 😳 but agreed to give me iron tablets as ferritin was very low. I have no idea why these aren’t routinely tested on diagnosis of hypothyroidism as so many of us are low on the same things. I get the feeling that hypothyroidism isn’t really taken seriously once on levothyroxine. A sympathetic Gp is hard to find.
Thank you x
"Another unhelpful comment I had this week is that I may be feeling unwell as due to my age (44) I may be entering the menopause. Again with no other offer of some kind of testing or support! This was another shock to me!"This is interesting and sad. Some friends and I were just commenting that with discussions among researchers, there is just something that differs with thyroid hormone from the normal science discourse. There is still a very heavy misogynistic bent in medicine, especially when it regards thyroid. This is global - not just in the UK/NHS.
Even the language used in thyroid research talks about "preference", "feeling", rather than objective measures. This is (very) slowly changing.
Patti in AZ
It is very interesting. It made me think - ‘Is this going to be the response to everything now due to my age and gender?’
I spend a lot of time working to fight misogynistic subjectivity and gaslighting with objectivity. I put together a scored symptom checklist that some people have found helpful in tracking symptoms and confronting/discussing with their providers. thyroidcanceradvocates.net/... It's slanted toward thyroid cancer patients but can be generally useful. It's often difficult for us to objectively articulate our symptoms - a scored tracking checklist can help and shows the doc we're doing the job they should be doing.
When I was getting treatment for another cancer, the radiologist (not his nurse) sat down weekly for ten minutes reviewing a similar symptom checklist with me. It was enlightening and is how it should be.
I live in the U.S,, but I had a similar situation years ago. My GP refused to help me. So I guess I wore him down, thanks be to God. What ended up giving me a breakthrough was he sent me for a thyroid scan. That’s when, because I had some enlargement and nodules, he agreed to refer me to an endocrinologist.
You might want to ask for a thyroid ultrasound, or scan. Ask for additional tests, specifically just for the thyroid. This got “the ball rolling” for me, because he suddenly realized that treating thyroid by himself was outside of his expertise. He then recommended I see an endocrinologist and I got the support/care I was needing.
Thank you for taking the time to respond. I hope you are on track now x
Hi
Just be careful who you end up with, many endos are diabetes specialists, with a bit of thyroid thrown in for good measure. A bit like a plumber who knows a bit about electronics. As many forum members can testify they vary greatly in quality. Not all are competent or sympathetic. Some are no better than GP's. Some of the stories I've read on here are pretty disheartening. Be wary of getting your hopes up too much.
Before you commit yourself try asking the forum to private message you if they have any recommendations or opinions. There's nothing worse than trusting someone with your health, especially if you have to pay handsomely, only to find out you're no better off.
Thank you for the advice. I will come back and ask again. I just want to feel well again. Thank you so much for your support.
After many years l got an appointment with Endo, was under him for three years, l requested T3 on several occaaions and he wouldnt agree, so l paid a lot of money for one months supply, not realising at the time you need to take more than one month!I kept on asking and in the end he agreed to give me three months supply of T3.
They came loose in a small glass bottle and l had to take half twice a day, so small even pill cutter crushed them up!. In the bottle there was in fact six months supply !
I took them for four months and they made no difference and the Endo said he was right! and to this day l am positive they were a placebo!
I have has my condition for 30+ years after Thyroidectomy, l was ok until 10 years ago and have all the problems everyone gets.
I have now given up and lead a miserable life due to all the continuous thyroid symptoms, but lve had enough.
As people have said, get your blood tested privately - tsh t3 and t4. Do the blood test first thing before taking meds. It’s about £30-40 with Monitor my Health or Medichecks. Once you have those results, post here with the ranges for further advice.
Thank you. I will definitely do that. Xx
Also ask the surgery if you can register via Patient Access or Nhs app online - most surgeries have it and you can find all your results there and order prescriptions etc.
Thank you. I asked and they said they can. But I have to go in person to request it. I also asked for print outs - just to make sure! X
I'm in much the same position. Diagnosed about a year ago with hypothyroid, put on Levothyroxine 25ug, which does nothing but make me feel anxious a bit panicky. Told the doctor who said to take half the amount, still get feelings of anxiety and panic attack feelings. Asked to see an endocrinologist and was told, basically, you'll be lucky. I've since stopped taking the levothyroxine. Don't feel 100% . So, just how do you see an endocrinologist? Also, from reading about hypothyroid problems, it seems I should be having regular blood tests. Apart from the original test when they diagnosed me, I've had none.
Grumpygroo
Please write your own post, including thyroid results before starting on levothyroxine
Members can help
Starting on 25mcg is correct because you are over 65
But will still need dose slowly increased over coming months
Starting on low dose can make symptoms worse
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Very important to test vitamin D, folate, ferritin and B12 too
Low vitamin levels are extremely common when we get older and especially if hypothyroid
I have a more positive offer. I was in the same position as you so pointed out to my GP that as a patient I am entitled to a referral, and then I got one. First endo would have made me worse but luckily my GP knew enough about thyroid meds to know that so she gave me a referral to a second, different endo. Both were on NHS. I go armed with knowledge from this site but with a grateful and respectful attitude and it seems to work. Best of luck.
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