Hi, I am wondering if anyone can advise on finding a private endocrinologist that I don’t need a Gp referral for?
I have had hypothyroidism for 22 years and currently take 150mcg levothyroxine. I have been really struggling recently with hormonal imbalances (particularly during my menstrual cycle). My Gp is not the slightest bit interested in how this all affects my ability to lead a normal life and I feel I could really benefit from further tests and advice from a specialist.
All my Gp ever says is “your last blood test was within range” without actually telling me what my levels were. I have recently (since June 2020) started suffering with severe migraine, tinnitus and facial tingling/numbness as well as the usual heavy clotting, fatigue, dry skin. Also gaining weight despite having a very poor appetite. Gp feels that the symptoms are not linked to hypothyroidism and diagnosed menstrual migraines, but refuses to investigate further despite the prescribed medication (atenolol and amitriptyline) making no difference to my symptoms?
Any advice would be most appreciated. Thank you.
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Jinjin44
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Before considering seeing any thyroid specialist endocrinologist you need to get FULL thyroid and vitamin testing done
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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too frequently only TSH is tested which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you always get same brand of levothyroxine
Which brand of levothyroxine
Only test after minimum 6-8 weeks on constant unchanging dose and brand of levothyroxine
Do you have Hashimoto’s
What vitamin supplements are you currently taking
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
You can usually get a login from the surgery to view all your results online. Still, I'd pay for T3 t4 and tsh to be tested ASAP so you have a full picture. Take meds 24 hours before test and test first thing in am. Don't take vitamins with biotin in for a week before the test.
Nice guidelines say docs should aim to increase meds til symptoms are managed and tsh is not lower than 0.04. You're probably needing an increase.
For me migraine, tinnitus and facial tingling/numbness is too much Levo. Fatigue, dry skin are normally not enough Levo but in some respects they can also just be - being a hypothyroid person. Weight gain - just Levo thats what it does. I wouldn't bother with an endocrinologist they are just expensive quacks. If you really want to fix things try NDT (natural dedicated thyroid) But it's not an easy road. Hard to buy, hard to use, but once you work it out - life can be back to what was once pretty normal. or Maybe try 100mcg Lev for a few weeks and see if you feel better.
I’m glad you said that. I’ve been thinking for ages that levo caused my tinnitus and dry skin. As soon as I went up to 100mcg from 75 I felt pressure in my ears and they don’t stop ringing. I’m going to drop back down to 75 and increase my t3 further and see what happens! 😊
Many on here will identify and sympathise with your symptoms making it really tough to take control of your health journey but possibleThe more information you can post such as where you are based the more people can help and private message you
On migraine -I found mine was hormone related and discovered massive improvement after going dairy and gluten free also no tomatoes or potatoes
Maybe try a functional doctor ( very good one in Exeter LW) as they can also look at all issues such a mental and emotional we are not always aware of affecting our health
Assume ( not sure your age ) discounted menopause which can produce all these symptoms-good luck -keep posting
I saw a private endo (in London end of 2019) without a GP referral. If you know which endo you want to see, it's worth giving the sec a ring and seeing if you need to be referred or can do it yourself. If you don't know who you want to see, it's worth a (new) post to ask for recommendations (by PM) in your area - along with why you want to see them. [For example the guy I saw was very well informed and useful for a second opinion, but doesn't "do" lio in his NHS practice, which I'm currently getting]
It's also worth getting the list of private endos (and T3-friendly endos) from DIonne at Thyroid UK - tukadmin@thyroiduk.org
To get the most from your appointment, I would strongly recommend
(a) getting your historic blood results from the GP - as SlowDragon says, you are legally entitled to these and need to see what has been tested and what the actual results were;
(b) getting new (probably private) test results - of everything {TSH, free T4, free T3, antibodies if not already done and known to be high, ferritin, folate, vit D and B12]
(c) preparing a little written summary of your thyroid "journey" - how long; what meds and increases; what symptoms you now have etc - that you can give him/her beforehand
(d) a list of questions to ask when you're there [in case brain fog takes over in the room]
(e) ideally, if allowed, someone else to go with you - both to remember anything you have forgotten and reinforce how you aren't properly "you" at the moment on current meds
Finally, be aware that - even without a GP referral to kick the thing off - the endo is highly likely to write to the GP afterwards to confirm the appointment and his/her opinions
If you do decide to go down the private route you can organise that yourself without a GP referral although it would obviously help and save money if you have some results to take with you.
Hi there I think if I was you I think about changing my GP. I know what it's like to have hormonal migraine and suffered for many years till my GP prescribed Naratriptan it was fantastic for me and no longer did I dread the time of the month as it would just take the migraine away completely. Hope you can find a way forward with all your thyroid problems I too suffer and really don't know where I'm going with it all but that's another story.
There is a website you can go on that insurers recommend where GP’s can issue you with a referral. I think it costs £80 for one. Something like that. It’s absolutely fabulous for people who don’t want to go through their doctor. If you want it I’ll dig out the link.
My endo is in Kent and London and is open to all medication where appropriate. He’s NHS and private. Xx
Thank you all for your replies. I’m going to request my results from the surgery and go from there. I think I just want someone to look at everything as a whole picture. E.g. thyroid function, hormone imbalances, any vitamin deficiencies or allergies that may be affecting things.
I had been prescribed the TEVA brand for a while and things got so much worse. I’m now back on usual brand and my symptoms have calmed down a lot but are still there. I understand it can take a while for the TEVA to come out of my system so hopefully things will continue to improve 🤞.
I wonder if it’s possible to switch to Hyperthyroid during menstrual cycle due to hormones??
I live in Leicester and am 45 so could well be peri menopausal.
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