NHS Endocrinologist - appointment result - Thyroid UK

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NHS Endocrinologist - appointment result

To recap I am on a 5 x 25mcg a day, 2 x 50mcg a week protocol with my TSH bouncing around between 3-4 and my FT4 at 11 and FT3 at 5.2

I have been back on this after a brief 3 week dally with NDT but I didn't feel well on that and it made absolutely no change at all to my numbers anyway.

Endo refused to up my dosage saying that a TSH under 5 is within range and as far as she is concerned I am now treated correctly and there will be no further increases. So that's that.

After Christmas I might just bin the lot and see how I feel.

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Email Thyroid UK for list of recommended thyroid specialists

This NHS one is obviously only a Diabetes specialist and utterly clueless on Thyroid disease

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

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 Thyroid antibodies are raised

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 antibodies 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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Standard starter dose is 50mcg Levothyroxine

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

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This all sounds very complicated no wonder you are getting fed up. Are you taking 25 levo five times a day. Your endo sounds dreadful. Listen to Slowdragon.

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No no, lol!, it is 25mcg a day for 5 days and then 50mcg for 2 days

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Recommended Starting dose is 50mcg Levothyroxine dose everyday, unless over 50 years old

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

Patients find testing after 4 weeks is too soon.

6-8 weeks is recommended

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Yep, I know all that. I have been a member of these forums for a few months now.

Trouble is, I cannot choose how much I am prescribed, I can only ask multiple doctors for an increase - they do not agree though and they have all made it quite clear that there will be no increase.

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Then seeing a thyroid expert of your own choice is next step

If you get the list from Dionne there may be NHS option near you (but may be a long wait)

Or Private consultation

please email Dionne


tukadmin@thyroiduk.org

Was this last test done after 6-8 weeks constant dose on NDT?

healthunlocked.com/thyroidu...

Or 6-8 weeks constant dose of Levothyroxine

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No I switched to NDT 3 weeks before the latest test. I was not prepared to spend months on it though as I did not feel well on that. I have now gone back to the Levo but with no ability to increase the dose

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Roughly where in the UK are you

A good thyroid endocrinologist will over-rule GP and get dose increased

Suggest you get full Thyroid and vitamin testing after 8-10 weeks on CONSTANT dose of Levothyroxine

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I did tests throughout when I was on Levothyroxine and after 3 months the figures where the same as my most recent ones.

I am in Surrey with easy access to London.

If I could find a private endo that could be relied on to follow guidelines and issue a NHS prescription I have no issues in paying a one time cost. I did see a private one initially but they wanted to supply me with armour thyroid at a cost of 100 a month. This is why I went the NHS route - I wish I hadn’t!

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I might explore that avenue but this journey has already cost me in the thousands - what with time off work - and I am only 4 months in! I will just have to be prepared to be underdosed for a period of time.

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Dr P is in Surrey and easily one of the most knowledgeable men on thyroid x

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Thats interesting, could you please send me a name that I could look up?

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I sent pm x

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Just an observation really. Three weeks wouldn't be long enough to really make any comment on NDT so don't let your experience colour your judgement for the future but back to Levo. When I was taking Levo very many years and on the whole successfully the pharmacy gave me my dose in 25's saying that as I increased then I may well end up needing to add in a 25. I was happy to accept that if they were willing and able to do that. Fast forward a good 25+ years and I had a bit of a guilt feeling. I read on here I think it was the cost of both. It worked out more expensive to have my dose in 25's than have the same amount made up of a mixture of both so thinking of saving a little money for the NHS I carried on with the mixture but what a difference that made to my bloods! So in effect 4x25 was not equivalent to 2x50! So just wondering if something similar may be happening to you. Eventually I've found a better way of helping the NHS by paying to import my own NDT!

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Oh dear, you accidentally dropped a full packet of your pills in the sink full of water while trying to get one out? Silly you! So now GP, can I have a repeat prescription as my pills have all gone funny?

That way you can up your dose and see how you feel after a month.... :)

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