Seeing an endocrinologist privately?

[KimberleyClark]

Posting for traffic. I’m hypothyroid, diagnosed in early 40s, now early 60s. Currently on 75mcg thyroxine. I’m convinced my dose is not the optimal one for me even though my GP says my levels are within the “normal range”. My weight is ballooning and I’m so tired all the time even though I sleep all night. I would like the full range of tests. T3 and T4. My question is do I need to go through my GP or can I contact an endocrinologist directly? Also has anyone done this and what was the upshot?

I went to see one through Spire by just ringing them up, costing £250. Made an appointment and they cancelled it as the doctor was ill. Next appointment was cancelled by them due to a family emergency.
Finally saw the endocrinologist who asked a lot of questions then wrote to my GP asking for more tests to be done.
That was six weeks ago and my GP apparently hasn’t yet reviewed the letter. I assume he won’t now as they are working to rule.
Sorry not giving you better news op.

I can self refer via my Bupa policy. Are you self paying?

If you have a Google and find someone you like the look of and contact them via their secretary, they may accept direct self referral.

Yes, do it. My friend has Hashimoto’s and has only started to make progress by going private.

If you are self-paying (not using insurance) you can just book an appointment with a private endocrinology consultant without a referral letter from your GP. If you are using private medical insurance you will need to ask your GP for a referral letter.

The outcome of the appointment depends on the results of your blood tests. An endocrinology consultant may alter your dose, but only within the bounds of the normal range.

The problem is that the levels that the NHS set are at odds with what would get intervention/treatment/further tests across Europe. Go private, it would be good to get another opinion, but in my DD's case, she's been treated in a "We (NHS) know better" to "how dare you question us" way.

You can get fingerprick blood tests that check T3 and T4. Not sure who is the cheapest at the moment. Probably the best place to start. I highly recommend joining the health unlocked forum run by Thyroid UK. It’s a wealth of information. Also check out the website Invisible Hypothyroidism by Rachel Hill. You might be able to improve conversion to T3 through diet, you might need T3 or NDT, or you might just need more thyroxine. Good luck!

I see a consultant in Bristol privately. She also has hashimotos so gets it.

I would 100% recommend her. It's £150 per appointment but I lost years to the NHS's management of my thyroid disease. It's been worth every penny.

Once you're on a stable dose it will just be an annual appointment.

I went on Google search and just paid to see one through Bupa. Really easy to do. She then sent the report to my GP and me and my GP changed my medication.

I’m very interested in this, I’m on 125g but still feel shite. Put on 3 stone in the last 4-5 years since diagnosis, always feel achey and tired. I do have Bupa but also wondering if I just need to go on HRT

I have Graves disease so the opposite to you (hyperthyroidism) and saw a private one shortly after my initial blood test showed I was hyper, as the NHS waiting list in my area is a year or more. Really great experience, I chose someone very experienced and it was good to have more time (30 minutes) to talk about it. London-based, happy to recommend him.

I was diagnosed with Hashimotos earlier this year. Privately, consultation only using GP requested blood tests and it cost £350 (HCA London Bridge). I’m not at a point where the consultant feels I need medication just yet, but he did specify that when I do start it will be at 100mg Levothyroxine and adjust from there.

You can self refer.

NHS ranges are not useful. My DD has Hashimotos and it is managed privately.

I made an appointment for my daughter whose prolactin levels were off the scale, we were worried that it could be a prolactinoma brain tumour causing it. Our G.P had written to an NHS endocrinologist with our daughters history, the saying lost in translation comes to mind. He missed off a medication she’d been given for nausea. I gave the private endocrinologist every single medication that she was prescribed, straight away the one the G.P had missed off was pointed out to being the culprit 😳

Apparently metroclopromide is given to women who have no milk to breastfeed, it helps to produce it, which my daughter was also doing. It reduced her estrogen to such a low level that she had menopausal symptoms, vaginal atrophy etc, she’s only 28.

My daughter has had a whole host of medical issues over the past few years, and I’m really quite paranoid about the transfer of information. We’ve even had medical notes stating she’d been given ibuprofen, she hadn’t, you just cannot believe everything, I’m very sceptical, I don’t want to be like this but it’s happened to us.

For the sake of a couple of hundred pounds and peace of mind “DO IT”, it will give you complete peace of mind.

You can ask your GP for full thyroid panel. I've had my T4, T3 and antibodies tested by the GP.
What's your current Tsh at that dose?

Yes, just google for an endocrinologist and make a private appointment, GPs are useless with thyroid diseases. I also do a private blood test every 6 months to monitor my levels myself.

Just ask your GP to do TSH, T3 and T4.

Then go online and find the exact numbers of the blood test after you have had them done.

If your TSH is above 5 but you are symptomatic, they have to put your thyroxine up.

If you’re in a position to go private do. It’s probably the only way you stand a chance of getting timely help. I hope they can sort it for you; it’s awful to experience that :(

Thanks for all the useful advice, I shall try to get an appointment with endo tomorrow.

Hello Lovely, any chance you could recommend the endocrinologist you've been seeing? TIA x