Urgent help please. Private endocrinologist tomorrow or NHS 2 to 3 months wait?

If you go private and prescribed levothyroxine (approx £1.50 per month) your GP will most probably prescribe. If it is Natural Dessicated Thyroid Hormone, your GP (if willing) can prescribe on a named-patient basis. -private about £50 per month (someone will correct if I am wrong). If prescribed T4/T3 privately T3 is much more expensive (some will clarify price).

thyroiduk.org.uk/tuk/treatm...

You must make sure the person you are going to see is sympathetic to thyroid hormone problems, otherwise it may be a waste of money. Thyroiduk.org have a list of sympathetic ones and if you email louise.warvill@thyroiduk.org she can send you details.

If you see an NHS endo it would be wise to do some homework first and find the best one in your area, one that will give you T3 if needed and one that isn't TSH driven.

Moggie x

Had appointment today with private endo in Oxford. After all my fears he was brilliant. Thanks for your support. He recommended 50,000iu Vit D (which I got while I was there) 1 a day for 6 days and then 1 a month (doctor recommended 1000 iu a day). He also said he thought I probably needed T3, but we would get my Vit D levels right and would see me in a month.

Best wishes

Kathy

Hi Kathy! Please could you message me the name of your Oxford endo? Thanks

Thank you all. I understand the Prof I can see tomorrow privately does have thyroid listed as an area of expertise but he is not on the list. Whether he is sympathetic to it I don't know. Does anyone know if I could just see him for an initial appoitment and then go back to NHS for the rest of my treatment or if this would be frowned upon and the NHS wouldn't want to know?

Don't panic. I sincerely doubt this is a simple either tomorrow or in 2/3 months. There would likely be at least dozens of private consultation slots with various endos available over the next few weeks.

Be calm. Research the person.

Regardless of which endo you see, NHS or private, it is up to your GP to prescribe long-term. If he will prescribe, you are home and dry, if not, well, you're not.

It is possible, of course, that a private endo might say "T3", but GP says no. And your only obvious route is to keep getting repeat private prescriptions from the private endo at considerable cost (both for the piece of paper and the actual medicine). But see what happens before you worry about that.

Rod

Thanks Rod

I have researched as much as I can

Professor J Wass

Profess•Professor of Endocrinology, University of Oxford

•Head Dept of Endocrinology 1995-1998

•Chair, Society for Endocrinology 2006-2009

•Chairman, European Federation of Endocrine Societies 2001-2003

•Sub dean Medical School, St Bart's 1989-1995

The main focus of my department is the treatment of pituitary tumours, in particular the medical therapy of acromegaly and replacement therapy with growth hormone.

We have also founded international collaborations looking at the genetics of osteoporosis and auto-immune thyroid disease. These collaborations have been successful in establishing for example the importance of PTHR1 in the genetic cause of osteoporosis.

In collaboration with other members of OCDEM we are also involved in the elucidation of carbohydrate intolerance seen in Turner's syndrome and are beginning to shed further light on metabolic abnormalities in both sexes and in polycystic ovary syndrome.

What do you think?

I am going tomorrow at 3.00pm so will let you know how I get on.

Kathy

I couldn't possibly advise either way - but he does sound interesting. I think I'd like to sit down and have a long chat about pituitary and thyroid issues with him.

Doesn't help you decide...

No - but he does look quite smiley in some of his photos so her's hoping!

Kathy

Just found out from a PM that Prof Wass has a reputation for not listening and being scary. Not the sort of person I want to talk to. In fairness, this was some years ago and at that time he was NHS, now he is private. I wonder if that makes any difference?

Kathy

I wouldnt worry to much about the prof, he does seem to fit all the criteria though. I would continue to wait for the NHS endo and in the mean time go to the private one and if you have joy, brill, if not at least you have the nhs endo to fall back on,

The prof you mentioned above seems to cover a variety of issues, which is a great start, after all you are paying him, so I feel he will be more smpathetic, I have been to private endo, he was fantastic however it was my g.p that was a issue.

good luck xx

Thank you Merissa. I have made an appointment with the private endo and you are quite right that I will at least have an NHS one to fall back on. I must go prepared and try not to let him intimidate me. Thanks for your support.

Kathy

Had appointment today with private endo in Oxford. After all my fears he was brilliant. Thanks for your support. He recommended 50,000iu Vit D (which I got while I was there) 1 a day for 6 days and then 1 a month (doctor recommended 1000 iu a day). He also said he thought I probably needed T3, but we would get my Vit D levels right and would see me in a month.

Best wishes

Kathy

Hi Kathy

Just one Q - does he also do NHS..? x

Louise

x

Great news and lets hope that the VitD works for you. I was on the same amount but 50,000iu every day for two weeks. It brought my levels up from 12.5 to 154 and I felt great BUT it looks like, after only 6 months, they have gone back down again.

You must make sure that your GP tests your VitD on a regular basis (which they dont like doing as its an expensive test), if my GP had done this she would have picked up my problem again.

I did a blog all about my experience (as it wasn't without its problems) and have linked it for you to see. There are also some very interesting comments on it. I hope you can access it as it was a while ago and have just noticed its coming up "only visable to members"

thyroiduk.healthunlocked.co...

Moggie x

Sorry just read this as well as your blog Moggie. Interesting about my doctor needing to test vitamin D regularly. I wonder what the answer is to the levels decreasing again? Should you/ I be having a large dose of Vitamin D, say, every couple of months? Have you been back to your doctor?

Kathy?

Haven't yet found that one out - where does all that vitD go? If I am low again I will be asking the endo to explain and will let you know, and a few others on here who want that question answered.

My GP told me to take 1000iu every day to maintain levels but I didn't get on with this due to heart palps. Raise the questions with your endo next time you see him, although he has put you on a 50,000iu maintenance does once a month hasn't he.

Moggie x

Yes he has but the maintenance dose is only for 6 months and the endo is private and very expensive so not sure if I will continue to see him. I had to buy the vitamin D privately from him - £10 for 12 tablets. I am due to see him in a month so I will ask the question and let you know.

Kathy x

I know £10 seems a lot for 12 tablets but you only have to look on Amazon to see how much their suppliments are to realise that they are quite a bargin, expecially as you only have to take one a month. Hopefully your GP will step in and pay the cost.

Moggie x