Hi
Just wondering how people work with a private endo? Did you get a referral from your GP and then pay per appointment? Or just fully off your own back? What's the average number of appointments you have per year with the private endo? Do they only give private prescriptions or will they give NHS prescriptions too? Will the GP liaise with the private endo if they've not referred you?
Sorry lots of questions, but grateful for any info!
Thanks in advance
Private doesn't always mean better than NHS ! Most private Endos also work in NHS and their views will be the same.
I saw one when I had hyperparathyroidism and it was a waste of money and time although she did refer me to an excellent NHS surgeon.
I actually researched and chose one Endo but as she was on leave at the time I saw one of her colleagues, what a mistake that was !
Private tests and prescriptions are expensive, my GP was happy to organise some tests but other specialist ones I needed to pay for. My GP refused to support the private prescriptions so that was a dead end.
The private Endo didn't work for me but other private specialists I've seen have been worth it.
Thanks - I should have said I've had a recommendation from someone here for an endo in my area (London) that is good and would prescribe T3 if needed (don't know yet if I would need it as I'm unmedicated).
My GP is speaking to an endo for me to see if the recommendations is treatment (fingers crossed) but I am just trying to line up alternatives and understand how much it might cost me and how it would work longer term if that's the route I have to take.
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
Vast majority of endocrinologists are Diabetes specialists and useless for thyroid patients
If you choose to see a particular endocrinologist privately, they often want a letter of introduction from GP (referral letter). As it's a private referral, GP would be obligated to write this
Seeing any endocrinologist is typically £200-£250 as initial consultation
We ALWAYS recommend getting FULL Thyroid and vitamin testing privately via Medichecks or Blue Horizon BEFORE seeing any endocrinologist
If vitamins are low, working on improving low vitamin levels by supplementing BEFORE seeing consultant.....and retesting thyroid levels again before consultation
Standard starting medication is always Levothyroxine. As this is very cheap, GP would be likely to follow consultant's advice on prescribing on NHS
If consultant wanted to prescribe T3 or NDT, GP would not prescribe these on NHS without seeing an NHS endocrinologist and initial trial via NHS hospital pharmacy
Thanks - great info as always!
Hello slow dragon, there is an endocrinologist in my area who is nhs and also private. How would you go about getting an appointment with that person on the nhs? Would you have to go private first? I’m guessing you can’t request to see a particular Endo from your go?
this particular Endo does prescribe t3
I found an Endo from the list , my gp agreed to refer me on the nhs , my appointment came through (3months wait) I rang his secretary at the nhs hospital he works at and she gave me his private secretaries number , she said I could see him the following week privately for £250. When I saw him I told him I couldn’t wait the 3 months to see him on nhs and he agreed to see me on the nhs the same week , he did a full range of bloods and I now see him every 3 months . I already had t3 purchased from Greece he agreed to arrange a private prescription.
Thanks
Thank you for the valuable info. This person is on the list too. I just need to get an appointment with him. I don't think I dare to begin t3 unless it is prescribed I just don't dare do that. I'd love to try NDT actually. Anyway thank you very much and good luck on your journey!
You can request to see a particular endocrinologist on NHS. It's much more difficult to do if they are out of your local area
NHS appointment likely to be a minimum of 3-6 months wait...sometimes longer
If this endo is head of department, on NHS even if requested to see that person in particular, you may only see an assistant endocrinologist
Thank you. I think he is the head of the department (I've found his name on Dionnes list via private email. he's at my hospital. I have all the relevant information I just need to speak to him, which is the tricky part. I would wait the three months for an appointment but I doubt my doctor would give me one. I could try emailing him maybe?
You can request your GP refer you to an endocrinologist of your choice.... You should get to see them in person if you have requested a named endocrinologist.......but you may end up only getting one of his assistants
Thank you. I have seen one of his assistants before she was literally more interested in her coffee than me, she makes me want to scream, but he is good so worth a shot thankyou for the valuable info. Thankyou very much xx
Does he have a private clinic?
You can jump the queue and get to see the right man....but at a price
He is Nhs and also private. Is it about 200 pounds for a private consultation? Oh god part of me is so scared to even try. But it seems to have helped so many on here. X
You will only be getting a NHS Endocrinologist who still has to follow NHS guidelines so why bother ....
Initial consultation is usually around £200-£250
Always get FULL thyroid and vitamin testing done before any consultation, but especially if paying for private one. Otherwise first appointment is waste of time and money
Thankyou very much. Blimey this is complicated for a hypo brain to handle which is probably why petition to this bad treatment is quiet. I find I get so far on any task and then just Peter out! Good luck everyone xxx
Looking through your recent posts
You had recent small dose increase in Levothyroxine
Bloods need retesting 6-8 weeks after each dose increase in Levothyroxine. (Or after brand change in Levothyroxine)
So you will need TSH, FT3 and FT4 tested
Always get blood test as early as possible in morning and before eating or drinking anything other than water and last dose Levothyroxine 24 hours prior to blood test
Your high antibodies confirm you have Hashimoto's
Are you on strictly gluten free diet?
If not, this is likely the next step to try
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Your previous post shows you have low vitamin D
Are you now supplementing vitamin D and magnesium?
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
You also need B12 and folate tested, if not been done. Ask GP or test privately
Do people see a private endo once only, or a few times a year?
If starting on Levothyroxine, care should normally be transferred to GP ......usually with letter advising GP to dose so that TSH is in lower part of the range, and/or to test FT3 and Ft4 and use these as guide rather than a TSH
If situation is more complex (e.g. Central hypothyroidism) then you might need to get repeat blood tests privately 3-4 times per year while working out required dose etc
Rare to get FT3 tested on NHS
Perhaps seeing endocrinologist twice Year. Or even just emailing blood test results to them
The Endo consultants work also for NHS and also have their own practice
The difference is the private consultation requites payment and does not stop there any blood tests required you will also pay for them
Initially it’s not a bad idea to see a consultant one of
He or she will then refer you to the NHS hospital they practice it is a quick way to be seen under the NHS
Thanks everyone, very helpful
T3 prescription to NHS from private endo
Referral to private Endo
Private endo not much help...
private Endo consultant
How long does it take levothyroxine to start working?
