nhs endo recommendation in London!!

[marinapet]

Hi All,

I was diagnosed with Hashimotos this past year and my Gp is absolutely clueless about my labs. She refused to test me for hashi's in the first place and deemed it 'pointless' because most patients with hypo have hashis. Needless to say I went to a private endo that helped a bit but I cannot afford him. Does anyone have an NHS endo in London that is open-minded to changing medications and believe lifestyle changes make a difference? Please please please help a girl out! I'm only 24 and really suffering. Please PM with suggestions. Thank you

[shaws Administrator]

I'm sorry you are suffering - it is an awful feeling.

No information about other Endocrinologists are permitted on the open forum but you would be sent a private message.

When we're diagnosed and given a prescription we don't expect to feel worse than before we were diagnosed.

As you are only 24 you have a life-time autoimmune disease and you need to read as many posts as you can and read the information the member(s) were given.

There's no quick-fix obviously but do you have a print-out of your most recent results, with the ranges that you can post for information? Many of our members are very knowledgeable but no information about doctors/endos are permitted on the open forum and you'd receive private messages.

I think, before you consider being referred to another Endo, your doctor would have to be persuaded to give you a referral letter, is to try to sort your thyroid hormones inititally.

Do you follow this procedure for blood test:-

The very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take it afterwards? If not your results could be skewed.

Did doctor test B12, Vit D, iron, ferritin and folate.

Can you get a print-out of your last results, with the ranges, from the surgery? We are entitled - some charge a nominal sum for paper/ink. Mine charge 32p.

Do you take levothyroxine when you get up with one full glass of water and wait an hour before eating?

[MaisieGray]

There is no medical treatment for Hashimoto's, only as you say, lifestyle changes such as, but not exclusively, the exclusion of gluten and/or dairy. But you don't need to see an Endo in order to make such alterations, and indeed it is not within their remit or training. Whether they are pro or con following such practises wouldn't impact their treatment of the hypothyroidism that can result from having Hashimoto's (although doesn't in every case) which is the same whatever the cause of the thyroid ceasing to function properly, or its absence. You are fairly newly diagnosed, and presumably are replacing your shortage of endogenous thyroid hormones with Levothyroxine? If so, it can take a while to reach a point of being optimally medicated and euthyroid, it's not a quick fix, and requires regular 6 wkly testing after diagnosis with dose adjustments accordingly, until you reach that point. If your Dr is not following that (and the NICE Guidelines are quite clear to guide her), and your TSH, FT3 and FT4 are being tested rather than just your TSH, then it's likely you are on too low a dose and will remain unwell. You may therefore be wrongly concluding that you can't be well on Levothyroxine and need to change medications. If you post your latest blood test results, folks here can advise what might be going on, and make suggestions accordingly. Unless you are optimally medicated and still unwell, it would be a little previous to change meds and/or ask for a referral to an NHS Endo - with the tightening of T3 prescribing rules to be Endo-initiated only, they are seeing their case loads increase and are now routinely refusing or cancelling appointments where they consider the referral to them is unwarranted - if your GP would refer in the first place. So I'd suggest two first courses of action - read widely on lifestyle changes for Hashimoto's if you haven't already done so, (and others here will offer suggestions on that too) and post your test results here, as suggested. As a more general point, NDTs are unlicensed in the UK and whilst it's not unknown, are prescribed within the NHS only rarely; and as alluded to, T3 may only be prescribed in secondary care and even then, CCGs are encouraging GPs not to support this - any treatment originating in secondary care outpatients is funded by the relevent primary care budget. So despite the latest RMOC guidelines, Endo recommendations aren't always necessarily being carried through to GP prescribing.

[SlowDragon Administrator]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

There are several functional medics in London who consider lifestyle, nutrition and diet. But functional medicine can be very expensive as often involves many test

First step recommended on here is FULL Thyroid and vitamin testing BEFORE seeing any specialist

Improving your vitamin levels and looking at gluten and/or dairy free diet too can be done first

Have you got recent blood test results and ranges you can add?

How much Levothyroxine are you currently taking?

Have you had vitamins tested?

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 with Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random