NHS 'guidelines' preventing my GP prescribing for hypothyroidism - help please!

[wiseoldwoman]

Hello, just joined this hoping someone can advise what to do. I am 68 female. Diagnosed 2003 under-active thyroid put on Armour and symptoms disappeared😊then it became unavailable so put on levothyroxine which worked but various issues e.g. T4=20.00/TSH=0.01 : very shakey and hyper-emotional but subsequent reduced dose seemed to work. Anyway all more or less ok until 2015/2016/2017/2020 when blood tests (different country to UK) showed I did not need thyroid medication... I have been feeling increasingly unwell - zero energy/fatigue/brain fog/dizziness/shivery etc and weight gain of about 10 kilos, also, weirdly, for about 18 months my left ear lobe (external) itches like crazy!(No eczema)

Blood tests 2022 apparently OK according to doctor, only tested TSH=1.80. Feeling so ill and tired went to private lab August 2023: TSH=3.27/fT4=9.27/fT3=4.0 (Reverse T3=0.33) Total thyroxine=59.59. Saw my doctor to discuss who despite my 'proof' (?!) was adamant that my thyroid was functioning correctly and said unable to prescribe due to NHS parameters but would test my thyroid and iron and liver etc in 3 months as it would be too dangerous to begin medication in any case. I am at my wits end as my energy is zero, even behind my eyes feels tired if that makes any sense! I am 99% certain that I have primary hypothyroidism (an ultrasound in 2010 showed my thyroid to be half 'normal' size!)

My question is (and sorry for such a long post) would a private doctor be able to prescribe or are they also bound by NHS guidelines and where can I find a truly thyroid specialist, not 'general' endo? I would be so grateful for any advice/comments, thank you.

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

Can you add lab ranges for each test? This is important as they vary from lab to lab.

What time of day were all these tests, particularly your most recent? It makes a difference as TSH is highest at 9am so you should always book as close to then as possible.

Hashimoto's can peak and trough with thyroid levels but its strange that you needed replacement hormones then you didn't.

Rarely a private doctor might go out on a limb and prescribe when you're within normal TSH range but there would be no guaranteee at all and likely you would need to prove positive antibodies.

I'd recommend getting vitamins tested - ferritin, folate, B12 & D3 as hypo's get low stomach acid and cannot absorb vitamins well from their food. Low vitamins mean more symptoms.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

[wiseoldwoman in reply to Jaydee1507]

Hi, thank you for the reply. All tests -from 2003 to 2023! - were done around 09.00 fasting.

No positive antibodies detected e.g. August 23 Anti-TG less than 0.9 ref range less than 4.0; Anti-TPO was 1 ref range of less than 9.

These bloods were sent to private lab via DHL on a tuesday.

[Jaydee1507 Administrator in reply to wiseoldwoman]

What are the lab ranges?

[wiseoldwoman in reply to Jaydee1507]

oh i just replied to tattybogle with them. is that the info you asked for?

[Jaydee1507 Administrator in reply to wiseoldwoman]

Lab range fT4 is 7.86-14.41 so 9.27 is in the 'green' but TSH at 3.27 in lab range of 0.40-2.50 is showing something not right??

Then your TSH is above range. You need 2 TSH results above range 3 months apart to get a diagnosis and begin treatment according to NICE guidelines.

nice.org.uk/guidance/ng145/...

Once you have that then its time to get a little pushy (in a nice way) to begin treatment.

[wiseoldwoman in reply to Jaydee1507]

OK, thank you, I will have a read.

[tattybogle]

Hi wiseoldwoman,

do you have the lab ranges that came with that latest fT4 test .. is 9.27 under range ?

also , totol thyroxine test, is 59.59 under range ?

[wiseoldwoman in reply to tattybogle]

Hi tattybogle, thank you for responding.

Lab range fT4 is 7.86-14.41 so 9.27 is in the 'green' but TSH at 3.27 in lab range of 0.40-2.50 is showing something not right??

The doctor said because 9.27 is within range is the reason no prescription. As Jaydee rightly says vitamins esp D3, ferritin etc very relevant which is why I guess doctor said she will test those in 3 months. Previous tests 2003-2022 show no deficiencies in B12, D3 etc or iron etc.... I have been given Calcium+D3 due to slight bone thinning but dexa showed no osteoporosis...

fT3 of 4.0 in lab range of 3.8-6.0 and total TT4 of 59.59 in lab range of 78.38-157.40.... fT4:fT3 ratio is 2.3 - whatever that means...??

[TiggerMe Ambassador in reply to wiseoldwoman]

Infuriating how they think one in range is fine!!

TSH 3.27 mIU/L (.04 - 2.5) 131.3%

Free T4 (fT4) 9.27 pmol/L (7.86 - 14.41) 21.5%

Free T3 (fT3) 4 pmol/L (3.8 - 6) 9.1%

T4:T3 Ratio 2.317 

TT4 59.59  (78.38 - 157.40) -23.8%

You have every right to feel pretty crappy with those results, do you have access to a private GP or functional practitioner on Guernsey? They can prescribe 🤗

[wiseoldwoman in reply to TiggerMe]

Thanks Eeyore100. I am not aware of a functional practitioner on Guernsey....but doesn't mean there isn't one... my GP said I could go private to a consultant here but they might have the same attitude i.e. 9.27 fT4 is fine. Don't want to dish out £250 to be told the same thing which GP told me for £64 (yes that is state price, we don't have NHS, unless it involves NHS guidelines it seems!) Guess I could phone and ask the question🤨 - if the consultant's 'secretary' knows that is... wondering how to get alternative such as Armour but I thought Armour was discontinued? I tried Thyro-Gold 2013-2015 before moving here, seemed to help but not sure maybe best to wait for 3 months, ugh!

[pennyannie in reply to wiseoldwoman]

Hello wiseoldwoman and welcome to the forum ;

Armour and Efra - the 2 leading brands of Natural Desiccated Thyroid are meant to be available on the NHS through a ' named patient only - prescription, though finding a doctor who will stick his/her head above a parapet and prescribe it to a new patient is near impossible.

Just last week we had 2 people who contacted the forum having both been on Armour for well over 20 years and they are being encouraged to switch to T4 monotherapy with the ' carrot ' of an additional prescription for T3 - if deemed necessary.

Through a medical intervention, RAI thyroid ablation for Graves Disease, I now have no thyroid function but have been refused any treatment options on the NHS bar T4 monotherapy the cheapest option which I eventually became very ill on.

I have been self medicating the last 6 years, buying my own NDT and have my life back better than left by the NHS.

Thyroid UK the charity who supports this forum holds a patient to patient list of supportive endos and doctors both NHS and private - so maybe contact admin at thyroiduk.org on Monday for a copy of the list and see who might make sense for you to see - and many are still offering video consults so distance doesn't necessarily have to be the issue.

Obviously if you can afford to pay you can be prescribed Armour - I'm not aware it has ever been discontinued - though all brands of NDT are liable to ' recalls ' from time to time as are all medicines.

[wiseoldwoman in reply to pennyannie]

Hi, thank you. So sorry to learn your thyroid medical intervention etc. It is really so bad that people are left 'high and dry' on so many issues but perhaps particularly so when many thyroid issues are relatively easy to resolve with proper investigation - and not being treated like naughty children! I didn't do too well on levothyroxine - it was better than nothing but I was just fine on Armour. Interesting interview with a nutritionalist on TV a week or so ago who said thyroid is strongly implicated in post-menopausal women with various problems but rarely investigated.

[SlowDragon Administrator]

please add most recent vitamin D, folate, ferritin and B12 results

What vitamin supplements are you taking

[wiseoldwoman in reply to SlowDragon]

Hi, october 22 iron = 17.5 (8.8-27.0); transferrin = 2.3 (2-3.6); tibc(?)=58.3 (45-72)

I do not have tests from may 2020 when D, B12 were done but doctor said all absolutely fine.

I used to take Solgar B complex and 1000 vitamin C as well as D3 and a probiotic but as I began to feel more and more tired and unwell, especially with tummy/IBS recurrence, I stopped about 9 months ago. I have seen a nutritional therapist who is ordering me Nutri Thyro Complex and Nutri T-Convert. Not sure if i should take them until after blood tests end of October to include ferritin, bilirubin, tsh and t4, actually I don't know what to do about any of it!

[SlowDragon Administrator in reply to wiseoldwoman]

nutri Thyro complex contains a lot of iodine and kelp

nutriadvanced.co.uk/thyro-c...

Iodine not recommended unless tested, found deficient and under care of iodine specialist

why would you need Nutri T convert as well

They both contain copper, selenium etc

Likely too much if taking both

nutriadvanced.co.uk/t-conve...

Genova Diagnostics for iodine test

thyroiduk.org/help-and-supp...

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Cost: £76

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

Suggest you get FULL thyroid and vitamin testing via Medichecks or BH as first step

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and if on levothyroxine……last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 or NDT …- day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[wiseoldwoman in reply to SlowDragon]

Thank you very much for your help.

[helvella Administrator]

All NICE guidelines, and many others, say something like this:

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

nice.org.uk/guidance/NG145

That means, the guidelines are not some sacrosanct edict. They MUST take into account individual needs, preferences and values of the patient and not just blindly apply the guidelines regardless.

However much we might disagree with aspects of the NICE guidelines, they do actually allow themselves to be judged inappropriate for an individual.

Mind, I have no understanding of their status in Guernsey!

[wiseoldwoman in reply to helvella]

Many thanks. I believe medics here 'follow' NHS parameters thence NICE guidelines despite not being part of NHS. My doctor is not unsympathetic but cannot step outside the box - aka guidelines, which is understandable if frustrating!

[Farrugia]

Hello - I have consulted a private thyroid specialist via online video link so if you can access that it doesn't matter that you don't have anyone locally on Guernsey. This Doctor was very thorough and she listened which is always a good start. I now take Armour having felt crap on Levothyroxine before. (She offered me some different options to try as well). The downside is it's expensive but it's worth it to me to have my life back. She's on the recommended list on this group. I don't think I'm allowed to mention her name on here but if you want to private message me then I can give it to you.

[wiseoldwoman]

Thank you to everyone on this forum - I have learnt so much in the past week from you all, it is a grand thing that you do - I have enrolled as a Thyroid UK member hoping my few pennies will help to further education and general cause of thyroid help. Wanted to say also, that I have read helvella's blog (hope I can say this on here) post on Dr Hertoghe, absolutely fascinating, and today, the letter written by Jacqueline Falkowski, absolutely heart-breaking, but both these serve as examples of the extraordinary ongoing struggle.... actually I might give copies of both to my GP as Christmas present - if we are still talking by then!! All very best to all. As my dear departed dad used to say "Never Give In"