Advice in advance of blood tests

[sarah7o]

Apologies for the long post but i feel the background is important.

April 2017. After 8 years of feeling unwell and being told by my GP that there is nothing wrong with me i was finally diagnosed as sub clinical Hypothyroid and put on 50mg Levo, raised to 75mg.

TSH 4.38 range 0.27-4.2

T4 11.8 range 12-22

Jan 2018, With no change to my health i was referred to an Endo,

TSH 0.54 range 0.27-4.2

T4 21.2 range 12-22

T3 4.8 range 3.1-6.8

I was told that as my T4 was at the top of range and TSH an the lower end there was no more they could do. He discussed the fact that T3 may help but that it wasn't available on the NHS.

I went away and did lots of research, tested privately for DIO2, which i have inherited from one parent. A private test for Thyroglobulin 394 range 0-115, Thyroid Peroxidase Antibodoes <9 range 0-34. I have been strictly gluten free for 2 years. I eat a plant based diet and have been supplementing the following for over a year. B12, Magnesium, Selenium, Vit C, Zinc, Folate, Iron, P5P, R5P.

September 2018, With no change to my health i asked to be re referred to back to the Endo feeling that i filled the criteria to be trialed on T3. I was told that the CCG did not allow him to prescribe T3. He suggested that i go back to my GP and ask to be referred to a specific Endo that was currently allowed to prescribe T3 on a case by case basis saying that he would speak to the GP in support of another referral should i be refused.

Feb 2019, I have now see another Endo and been told that the CCG no longer allow them to prescribe T3. After a very candid conversation with the Endo they have agreed not to discharge me and to send me for the following bloods. FT3 ,FT4 ,T3H, Cortisel ,FSH, LH, Vit D, IGF-1.

I am very unwell. Insomnia, depression, weight gain, brain fog, physical exhaustion, hair loss to name a few. I struggle to get through each day.

Please can someone advice me on what of my meds and supplements i should stop taking, and how soon i should stop before my blood tests to get an accurate reading?

My next question is about T3. I think it is unlikely that i am ever going to be prescribed it on the NHS despite fitting their criteria.

Does anyone actually get it on the NHS?

Is it worth pursuing or should i consider self medicating once a have clear, up to date, bloods?

And where can i get help with sourcing and dose?

Thanks in advance.

[SlowDragon Administrator]

This is so utterly wrong. Which CCG area are you in? Many CCG's are pressuring endocrinologists not to prescribe, directly against guidelines

The UK guidelines clearly state that if an NHS endocrinologist says you have clinical need for T3 you should be offered a 3-6 month trial and if this is successful you should be prescribed

Initial 3-6 month prescription should be via endo/hospital. After trial, assuming successful, the ongoing care and cost of prescription if via your GP. Annual review back with endocrinologist

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

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

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Recent debates in parliament

Write to your MP

theyworkforyou.com/search/?...

Searchable data - put in Liothyronine and your CCG area

openprescribing.net/analyse/

Being Heterozygous DIO2 is clear clinical need

[sarah7o in reply to SlowDragon]

Thank you. I am currently under Surrey. I have been to Dorking Community Hospital and more recently Royal Surrey County in Guildford.

I have had the impression that both Endo were sympathetic but their hands are tied. Do you think think it isn't the case?

I will have a read through and try and inform myself so i can present a fool proof case when i go for my follow up but i'm doubtful that that i will ever get it on the NHS.

[SlowDragon Administrator in reply to sarah7o]

There are at least two endocrinologist in Surrey on the recommended list who prescribe T3

Which Surrey CCG. There are several options looking on openprescribin

[SlowDragon Administrator in reply to sarah7o]

Looks like Surrey has taken incorrect decision to ban prescribing on NHS

Difference is clear on open prescribing website

Surrey Downs now 0 prescriptions but in Sept 2015 there were 48

Guildford and Waverley now 0 but in Sept 2015 there were 22

Private prescription enables access to cheap T3 from Germany. 31 Euro for Thybon Henning 20mcg x 100 tablets

Joining Thyroid Trust and Improve Thyroid Treatment campaign on Facebook may be helpful

ITT have recently overturned ban in two other CCGs

[SlowDragon Administrator in reply to sarah7o]

Full figures last year

This is number of prescriptions (I think) rather than number of patients

Figures Feb 2018-Jan 2019

Surrey Downs 507

openprescribing.net/analyse...

N west Surrey 456

openprescribing.net/analyse...

Surrey Heath 76

openprescribing.net/analyse...

East Surrey 206

openprescribing.net/analyse...

[sarah7o in reply to SlowDragon]

We will shortly be moving to East Sussex. Do i have a better chance then? I not actually sure what i'm meant to put in the search bar on the link as there are various option. It could be me as i have particularly bad brain fog atm.

[sarah7o in reply to sarah7o]

So if i was referred to one of these do you think they will give it to me? I was told east surrey definitely don't as that is my closest hospital. but the above shows different.

I have no idea what to do next it's such a midfield and most of the time i am unable to get through the day ...

[SlowDragon Administrator in reply to sarah7o]

Up to you if you can face the fight to get NHS prescription

If you want NHS prescription you need to see NHS endocrinologist. Picking carefully off the Thyroid Uk list of recommended thyroid specialists

Private consultation is the other option

Private prescription enables access to cheap T3 from Germany

Obviously that supply route may be an issue if Brexit ever happens. Fortunately Brexit looking less and less likely

[SlowDragon Administrator in reply to sarah7o]

Not sure which area of sussex


Again different prescribing rates in different CCG's

January 2019 - prescriptions for that month




Brighton - none in Jan. 35 in last year

Brighton has been complete ban for some time, apart from myxoedema coma or RAI

gp.brightonandhoveccg.nhs.u...

bsuh.nhs.uk/wp-content/uplo...

But I believe ITT campaign are having some success with challenging that




Coastal West Sussex - 61 items in Jan. 822 items for last year




Horsham & Mid sussex - 10 items in Jan. 120 items last year




High Weald and Lewes - 25 items in Jan. 311 items last year




Eastbourne - 13 items in Jan. 195 items last year




Hastings - 30 items in Jan. 366 items last year




West Kent 135 items in Jan. 1158 items last year




Post code lottery

All this is purely down to current price charged to NHS for T3.

£204 for 28 tablets. £7.28 per tablet

Down from £258 at its most expensive


A long way to drop before it's anywhere near German T3 at 31 Euro per 100 tablets or that's only about 30p per tablet




Rest of world even cheaper than Germany

How to use "open prescribing" website

Go to analyse data

Drugs - start typing Liothyronine- pick Liothyronine sodium in drop down menu

Ccg - start typing in CCG you are looking for - again pick from drop down menu

Then press blue button "show me the data" ......

[sarah7o in reply to SlowDragon]

Thank you. We're moving to Hastings in a couple of months so maybe i'll do some more research and have one more go. I will also post my new results once i've had my bloods done as that may change things.

What do you think is the best way of getting another referral to a different Endo as this will be my 4th on the NHS?

Shall i register with a new GP when i move and just ask for a referral? My previous Endo said that if the doctor refused to re refer me he would be willing to speak to them to say he supported it. and wrote a letter to that affect.

[Hidden in reply to sarah7o]

Hi Sarah - Kent & Sussex hospital in Tunbridge Wells has the reputation for the best hospital in the area. May be you can get a referral to an Endo in this hospital. You could find the top specialist has private patients. He/she might recognise the need for T3 and be able to prescribe it. You can then take your prescription back to your doctor on the NHS explaining that you need the T3 to activate your metabolism.

If you haven't had tests for celiac disease such as for gluten, egg, and dairy, you might find you have another immune disease which is not helping your thyroid.

Gluten can affect many body systems and going gluten free might help after tests.

glutenfreesociety.org gives you all the info you need about gluten and it's effects and how going gluten free may help.

[sarah7o in reply to Hidden]

Thank you. I really appreciate everyone taking time to respond. I have been tested for these somewhere along the line and neither are an issue. Despite this I have been strictly gluten free for 2 years along with supplement pretty much everything, see my original post. Thank you for the recommendation. Do you know if they are prescribing T3 on the NHS and do you have the name of a specific consultant that you could pm me.

[Hidden in reply to sarah7o]

No but if you look at NHS website for their specialists. Some might be found to do both private and NHS work/ private clinicians . Each endo has a special interest - some are more into diabetes - others the thyroid.

Thyroid Uk adminstrators may have a list of endos they recommend privately, serving your area for p.m.on request. If you look up private hospital lists for Spire, Bupa, Nuffield you may find the names of the specialists. You can cross match the names and info with hospital lists of specialists on the NHS. You can see where they studied medicine and their experience.

Gluten is not the only food that may affect your health - so if you have not had tests for dairy and egg - these are sometimes never picked up unless you have tests.

[SlowDragon Administrator in reply to sarah7o]

You need to get vitamin D, folate, ferritin and B12 tested

Cheapest way is to do full Thyroid and vitamin testing via Medichecks or Blue Horizon

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

With Heterozygous DIO2 gene variation you are going to need the addition of small dose of T3

[NWA6]

Sarah, your story is heartbreaking 😢 I live in Surrey Heath. I’ve had Hashi’s for 10yrs and have repeatedly fought with my GP to raise my Levo in previous years in order to feel well and before I knew much about Hashi’s. I had an Endo appointment in Feb at Frimley Park. He said all the right things ‘treat the symptoms not the tests’ ect but then his follow up letter said that I was on optimal Levo but I was to let him know about my DIO2 test. I just received the results last week I also have the faulty gene from one parent. I have been pretty much housebound for 3wks as I’ve given up, my husband works full time and then does all the household chores as well as anything to do with our 4 children. I parent from the couch or my bed. Luckily the children are 11yrs-17yrs but it can’t be nice to see me like this.

I’ll chase the endo this week to see if they’ll do anything but reading your post it feels like nothing will be done as my tests are within range

TSH 2.5 (0.35- 5)

FT4 23.3 (9-24)

FT3 3.5 (3.5 -6.5)

I now use a Tens machine for my arms and left leg which are almost permanently sore. They feel like they are being squeezed by a boa constrictor or the pain you feel when you’ve had pins and needles and now the blood is flowing back in to the body part again.

I really wish you luck in finding a solution. It’s a long and lonely road even with support people just don’t understand what it is, I get more sympathy if I say my condition is like CFS 😩

[sarah7o in reply to NWA6]

I'm so sorry that you feel so unwell and appreciate that despite it you have found the energy to reply. Sadly i think many people are suffering the same debilitating issues. It's very hard to find the energy to research and fight when sometimes it's hard to just get through the day. When i fist got my referral to the Endo i really thought all my problems would be solved as i hear of GP's refusing to refer, but actually i'm in the same situation i was 2 years ago despite being pro active about my condition. I suggest to scroll back over the replies i have had to my original post there has been some very helpful info. It would seem if you can get to see the right Endo, and they are allowed to by the CCG, they will prescribe T3. I feel i qualify, as i'm sure you do based on the fact that if you are still symptomatic despite your THS and T4 results.

[NWA6 in reply to sarah7o]

I have had the most education from ThyriodUk and this forum. The posters here are so educated! Even when the counsellor from Regenerus phoned me to tell me my results she said that she was in awe of the members of ThyriodUk as they are proven to be THE most knowledgable community 🙌

It is only from these posters that I know now how stupid it is to rely on my FT4 and TSH results. I looked a l on my T3 and it’s akways been on the lower end of optimal and that ofcourse fits with my DI02 result.