The NHS is a sick joke!: After being mistreated... - Thyroid UK

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The NHS is a sick joke!

Mlinde profile image
64 Replies

After being mistreated by the NHS for the past 13 years for my underactive thyroid, I booked an appointment to see an endoctrinologist last week and guess when? June 2022!!! Eight months away.

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Mlinde
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes, that’s about typical, even from before pandemic

Suggest you get FULL thyroid and vitamin testing done now, yourself

See exactly what your thyroid and vitamin levels are

There’s lots you can do to improve symptoms between then an now

What are your most recent thyroid and vitamin results

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Do you have autoimmune thyroid disease diagnosed by high thyroid antibodies

If yes, are you already on strictly gluten free diet.

If not get coeliac blood test done (via GP preferably) BEFORE trialing strictly gluten free diet

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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

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

List of private testing options

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Mlinde profile image
Mlinde in reply toSlowDragon

I've had all the tests (private) and for example;

Thyroglobulin Antibodies: >4000.0 IU/mL (range: 0-115)

Thyroid Perioxidase Antibodies: 200 IU/mL (range: 0-34)

Simply put my body DOESN'T convert T4 to T3. End of story.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

So, like 90% of primary hypothyroid patients you have autoimmune thyroid disease also called Hashimoto’s

Next step is to get vitamin D, folate, ferritin and B12 tested

Plus coeliac blood test BEFORE considering trial on strictly gluten free diet

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

For levothyroxine or Levothyroxine plus T3 or NDT to work we MUST have optimal vitamin levels

There are many members who were in similar situation who have made vast improvements getting vitamin levels optimal and strictly gluten free diet/dairy free diet

This is essential BEFORE considering adding T3 or NDT

Mlinde profile image
Mlinde in reply toSlowDragon

Been here, done that. You seem to have an obsession with gluten. Vit D is fine, folate is fine, B12 is fine and yes, I know I have Hashimotos. I know what's wrong with me! What I can't get is the right treatment!

Vit D: 123 nmol/L (Range: 50-200)

Folate: 4.7 ug/L (range: >2.9)

Vit B12: 193 pmol/L (range: 25.1 - 165)

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Folate is too low

What vitamin supplements are you currently taking

B12 on high side

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

So you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.

Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Mlinde profile image
Mlinde in reply toSlowDragon

I DON'T have Coeliac, I'm NOT gluten intolerant.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Have you actually tried 3-6 months on gluten free or dairy free diet?

If not tried it you won’t know

Mlinde profile image
Mlinde in reply toSlowDragon

No, and I don't intend to

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, I am closing this post to further comments. Members here don't deserve to be treated with such a bad attitude.

SeasideSusie profile image
SeasideSusieRemembering

Mlinde

I think that's a fairly typical waiting time and it's not just endocrinology. Obviously it should be just a couple of weeks if cancer is suspected.

I've had hospital appointments for other things come through saying they have my referral and will contact me again nearer the time an appointment is available. Then 6 months later another letter asking to let them know if I still want to be on the waiting list and if they don't hear anything they will take me off the list.

The NHS is on it's knees, Covid has had an impact, some areas have longer waiting lists than others. Unfortunately it is what it is.

Whilst you are waiting, why not make a new post, tell us your thyroid story, post your current results for full thyroid panel and key nutrients, and members will comment and maybe be able to help you.

Mlinde profile image
Mlinde in reply toSeasideSusie

It has nothing to do with 'Covid'!

SeasideSusie profile image
SeasideSusieRemembering in reply toMlinde

Covid has had an impact in some areas. Hospitals were seeing less patients on a daily basis so waiting time would have been extended due to this and it has had a knock on effect in some areas.

We don't allow "political posts" on this forum so I have edited your post to remove this reference.

Mlinde profile image
Mlinde in reply toSeasideSusie

Censor away

shaws profile image
shawsAdministrator in reply toMlinde

I agree with both your comments and the majority on the forum would also agree.

I had to diagnose myself. If you wish you can click on my name and it takes you to my 'personal page'.

You can also copy/paste some of your history into your Profile page and members can read it, if they wish, and you don't need to repeat answers.

Some members are unaware that they can give information on how they became to be diagnosed (or who remain undiagnosed) and don't need to repeat in future.

Mlinde profile image
Mlinde in reply toSeasideSusie

I'm afraid I've run out of energy to post my 'experiences' here, suffice to say, I'm one of the ones for whom Levothyroxine DOESN'T WORK! My body doesn't convert T4 to T3. Thus my free Thyroxine is 'within range' (15.2 pmol/l Range: 12-22)

But TSH is off the scale (21.30 mIU/L Range 3.1-6.8)

And Free T3 is way under @ 2.3 pmol/L Range: 12-22)

And, I might add, that not only have I NEVER been asked for my symptoms, taking Levothyroxine since 2008 has NEVER affected my symptoms, which are the same today as they were 13 years ago. The NHS is joke.

SeasideSusie profile image
SeasideSusieRemembering in reply toMlinde

Well that's a shame. There are many members here who don't convert T4 to T3 who have a wealth of experience to share and could possibly point you in the right direction.

Mlinde profile image
Mlinde in reply toSeasideSusie

I know what the solution is, a different medication.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

gov.uk/drug-safety-update/l...If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

Your GP can prescribe liquid levothyroxine as trial while you wait

But only an NHS thyroid specialist endocrinologist can initially prescribe T3 on NHS, via hospital pharmacy for 3-6 months trial. Assuming trial goes ok, endocrinologist will formally write to your GP to take over care and cost of prescription, with annual review back with endo

Vast majority of endocrinologists are diabetes specialists and won’t prescribe T3

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

...NHS and Private

tukadmin@thyroiduk.org

Mlinde profile image
Mlinde in reply toSlowDragon

It doesnt matter what brand and it never has, my symptoms have remained constant for 13 years regardless of the brand. As I said before, more than100 mcg and I get heart palpatations, so there's no point raising the dosage. Elsewhere, it's suggested that I split the dose through the day, but given Levothyroxine's long latency, I can't see what difference that would make. It's obvious, to me at least, that Levo doesn't work.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

You might find my profile info helpful

Personally I split my levothyroxine

Many other members do so too. In theory it shouldn’t make any difference….in practice many many patients find it does

It’s ESSENTIAL to work out which brand is best for you and always get same brand levothyroxine at each prescription

You may need beta blocker to reduce/stop palpitations while getting dose levothyroxine high enough

I only recovered my health with the knowledge and support of this forum.

helvella profile image
helvellaAdministrator in reply toMlinde

In my view, that is a misinterpretation of how levothyroxine is actually processed in our bodies.

Some people have found improvement by splitting their levothyroxine dose.

If nothing else, it would reduce the maximum T4 level that usually occurs around two or so hours after ingestion.

(It does seem presumptive to consider single-dosing as the only sensible approach when release of T4 by a working thyroid is pulsatile and continues throughout each and every 24 hours.)

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, 'Elsewhere, it's suggested that I split the dose through the day, but given Levothyroxine's long latency, I can't see what difference that would make. '

Some of us can't tolerate large doses of levo all in one go. Palpitations may be a clue that you can't either. Splitting the dose to say 50cmg in the morning and 50mcg at bed time can and does help some people.

Think of it a little like food. If you had to have all your days meals at one sitting, you might not be able to manage that. But two or three meals spread across the day is much easier on the digestive system.

Don't knock it until you've tried it :)

Mlinde profile image
Mlinde in reply toRedApple

Hmmm... worth trying out. BTW, I got the palpatations immediately after switching up from 100 to 125mcg. The problem with all these suggestions is that it takes at least a month for the body to adjust and given that from the very beginning my symptoms, regardless of dose or when I take them (I take mine at night, long after food) have never gone away, how do I know what works? Stopping the Levo entirely, which I've tried, just left me feeling even colder.

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, ' I got the palpatations immediately after switching up from 100 to 125mcg. '

Try the inbetween dose of 112mcg. 25mcg dose changes is convenient for tablet prescribing, it doesn't mean that's what your individual body requires.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

I got the palpatations immediately after switching up from 100 to 125mcg.

If the 25mcg tablets were different brand (especially if Teva ) it’s likely the brand. Teva upsets many people

If the brand was the same as you usually get ….then try splitting the dose

Taking the extra 25mcg early morning

humanbean profile image
humanbean in reply toMlinde

You have two choices.

Do nothing and keep deteriorating, or try and do something to improve how you feel.

There are no guarantees that you can improve much. But a common finding on this forum is that conversion from T4 to T3 can be improved by optimising various nutrients and/or by making changes to diet.

One reason for poor conversion is a genetic problem. The NHS won't do the test (as far as I know), but you might be able to pay for the test yourself :

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

I can empathise with you on the subject of the medical profession and the NHS. I've had my own difficulties with them. But doing what I can to improve my own health has made a big difference to my quality of life.

Mlinde profile image
Mlinde in reply tohumanbean

In terms of diet, I'd say I have a healthy, balanced diet, lots of fresh veggies, organic if possible, fish, chicken, don't eat fast food/processed food, rarely drink, dont smoke. I'm not allergic to anything. I'm not obese, I'm not diabetic, I'm not overweight (probably under). For someone whose had 2 heart attacks and I'm 76, and I know it sounds weird but I think I'm in good health otherwise.

I do use supplements, vits d3/k2, C as well as zinc (alt days), magnesium and I recently added Folate and Selenium (just for a month).

As to the genetic test, hmmm.... y'know you get to the point where this incessant testing becomes obsessive, so I'll give this 'test' a rain check I think.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Testing positive for Dio2 gene variation can help persuade NHS to prescribe small dose T3 alongside levothyroxine

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

Mlinde profile image
Mlinde in reply toSlowDragon

£88 and they're not doing them right now, guess why?

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

They are now running Dio2 test again

There was a backlog….and test might be processed in USA (limited flights)

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, You didn't take note of the dates (today is 8th November 2021):

'temporarily holding any further genetic testing service until October 21.

This means if you choose to purchase this test before then...

SeasideSusie profile image
SeasideSusieRemembering in reply toMlinde

But TSH is off the scale (21.30 mIU/L Range 3.1-6.8)

And Free T3 is way under @ 2.3 pmol/L Range: 12-22)

You might want to look at tests/results/ranges again as you have mixed them up, and correct them if you want members to respond.

The range for TSH is not 3.1-6.8

The range for T3 is not 12-22

Mlinde profile image
Mlinde in reply toSeasideSusie

whoops, sorry, TSH: 21.30 mIU/L (range: 0.27-4.2)

Free T3: 2.6 pmol/L (Range: 3.1 - 6.8)

humanbean profile image
humanbean in reply toMlinde

Your most immediate problem is not so much that you can't convert (which may be true but isn't your biggest problem right now) but that you are terribly under-medicated.

How much Levo are you prescribed?

Mlinde profile image
Mlinde in reply tohumanbean

It doesn't matteer how much I take! I'm on 100mcg, more than that and I get heart palpatations. Stopping it entirely also makes absolutely no difference, except I feel even colder.

humanbean profile image
humanbean in reply toMlinde

It doesn't matteer how much I take!

I would say it does matter. If you said your dose was 400mcg of Levo per day my response might be different to being told your dose is 100mcg per day.

I'm on 100mcg, more than that and I get heart palpatations.

Palpitations can be caused by low or deficient levels of nutrients, which can be tested and treated, if appropriate.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Free Thyroxine is 'within range' (15.2 pmol/l Range: 12-22)

But TSH is off the scale (21.30 mIU/L Range 3.1-6.8)

And Free T3 is way under @ 2.3 pmol/L Range: 12-22)

These ranges aren’t correct

TSH range is typical 0.4-4.5

Ft3 range is 3.1-6.8

Please repost

If Ft4 is only 15.2 (12-22) you are under medicated and need 25mcg dose increase in levothyroxine

ALWAYS stick to same brand levothyroxine at each prescription

Mlinde profile image
Mlinde in reply toSlowDragon

As I said elsewhere, more than 100mcg and I get heart palpatations, so increasing the dose does absolutely nothing. Under medicated? 15.2 is right in the middle of the range! In any case, part of the problem is the reliance purely on blood tests.

SeasideSusie profile image
SeasideSusieRemembering in reply toMlinde

Under medicated? 15.2 is right in the middle of the range!

No it isn't, it's 32% through range. The middle of the range is 17.

Calculator here chorobytarczycy.eu/kalkulator

or add lower and upper limits of range then divide by 2: 12 + 22 = 34 / 2 = 17

shaws profile image
shawsAdministrator

Rather than wait that long, members will give advice of what helped them to relieve their clinical symptoms by taking the advice of our 'experts'. By experts I mean that those people who were either misdiagnosed or given an insufficient thyroid hormone replacements to relieve clinical symptoms. and educated themselves as the medical professionals seem to be following guidelines that are not leading to a 'symptom-free' life.

Rocky profile image
Rocky

Is there any way you can afford to go private? I was really ill in March and got referred to an Endocrinologist and have had to wait 8 months for my appointment. I have the faulty DIO2 gene and am Homozygous, which means I have the faulty gene off each parent. I paid myself for this test. I paid to see a private Endocrinologist, as I couldn't wait any longer. I have been put on a trial of T3 by him, and have just seen my NHS Endocrinologist for the first time last week. She was very knowledgeable and is willing to work with my private Endocrinologist until I feel confident enough, and does prescribe T3. I was able to tell her how much better I was feeling on my T3 trial. I couldn't wait any longer and was deteriorating every month. I am also waiting for an appointment with the Gastroenterologist since August, to confirm celiac disease, and they have lost my referral. I feel for your frustration and it doesn't help when you are feeling so ill and have to wait so long

Mlinde profile image
Mlinde in reply toRocky

Nope

pennyannie profile image
pennyannie

Hello Mlinde :

Best bet is to take matters into your own hands like many of us on here have done to get back to better health.

First and foremost get a full thyroid blood test organised through one of the private companies listed on the Thyroid UK website, who are the charity who support this forum, and some offer a nurse home visit to draw your blood, so it's relatively stress free.

Make an early as possible morning appointment, fast over night, just taking in water, and do not take your T4 medication until after the blood draw, and refrain from any supplements for around the previous 7 days so we can see exactly what your body is holding onto.

We need to see a TSH, T3, T4, antibodies, inflammation, + ferritin, folate, B2 and vitamin D.

Thyroid UK also hold a list of patient recommended endocrinologists and specialist, as it does seem that you need to know who to go and see, rather than waste more money.

Referred to as a conundrum by the NHS I improved my QOL by reading a couple of books and this forum.

I'm with Graves Disease post RAI thyroid ablation and managing lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism and now self mediate and have my life back, as good as it's going to get.

Mlinde profile image
Mlinde in reply topennyannie

I've done all this!

pennyannie profile image
pennyannie in reply toMlinde

OK then -

So just throw up the results and ranges on this post and let forum members help you with anything that doesn't sit right :

Mlinde profile image
Mlinde in reply topennyannie

CRP HS (Inflammation): 1.5mg/l (Range 0 - 5)

Iron Status: 158 ug/L (Range: 30 - 400)

Folate - Serum: 4.7 ug/L (Range: > 2.9)

Vitamin B12 (active): 193 pmol/L (Range: 25.1 - 165) (in Japan, these levels should be 3 times higher!)

Vitamin D: 123 nmol/L (Range: 50 - 200)

TSH: 21.30 mIU/L (Range: 0.27 - 4.2)

Free T3: 2.6 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine: 15.2 pmol/L (Range: 12-22)

Thyroglobulin Antibodoes: >4000.0IU/mL (Range; 0 - 115)

Thyroid Peroxidase Antibodies: 200.0 IU/mL

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

If TSH is over 2 you need 25mcg dose increase in Levothyroxine

If can’t tolerate as single dose - split it taking 50mcg waking and 75mcg at bedtime

Which brand Levothyroxine are you currently taking

Alternatively GP can prescribe liquid Levothyroxine. Many people find that easier to absorb and tolerate - usually as split dose

Mlinde profile image
Mlinde in reply toSlowDragon

You just don't get it, do you? Levothyroxine has NEVER worked, not in 13 years. I have exactly the same symptoms now (forget the blood test) as I had 13 years ago, Levothyroxine simply doesn't work, the T4 is NOT being converted into T3 (never mind the 3 years of brain fog that the Levothyroxine itself, gave me).

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

If you didn’t want any constructive help..why post?

So you have been taking 100mcg levothyroxine…..taking it everyday without fail, and taking it correctly, on empty stomach and then nothing apart from water for at least an hour. No other medications or supplements within 2 hours….no iron, magnesium, vitamin D, HRT, calcium or PPI within four hours

Always same brand levothyroxine at each prescription?

Which brand?

FT4 is too low so you’re under medicated, and many people need higher dose levothyroxine than 100mcg

So definitely need dose increase in levothyroxine before considering anything else

But TSH is 21 on 100mcg you’re also likely looking at malabsorption issues

academic.oup.com/edrv/artic...

Coeliac, gluten intolerance, lactose intolerance, H Pylori, SIBO etc etc

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, 'You just don't get it, do you? '

Plenty of people on this forum 'get it'. That's why they are here. Lots have found the help and support given here by their fellow members has helped.

Please bear in mind that this is a patient to patient support forum. Members here support and help eachother. Ranting here doesn't achieve anything. We can't change how the NHS operates. But we can and do help each other.

If support and helpful suggestions from fellow patients isn't what you want, then there is little point in you interacting here.

pennyannie profile image
pennyannie

So, I believe we are looking at Hashimoto's AI thyroid disease.

It will likely be in your best interests to get checked out for coeliac and start to look at what food you eat as many people suffering with Hashimoto's have " leaky gut " and find once they remove certain foods such as gluten, dairy, wheat from their diet their inflammation is reduced.

There is full explanation on Hashimoto's AI disease o the Thyroid UK website and I believe many people have been helped with the AI component of this disease by reading the research and publications of Dr Izabella Wentz who has this health issue.

As for your Thyroid hormone results it shows that you are unable to convert the T4 - which is a prohormone into the T3 which is the active hormone that is the fuel the body runs on.

Your TSH has risen to over 20 - whilst on T4 - Levothyroxine and this is the first alarm bell that should have rung in your doctor's head.

Once on T4 - we look to have a TSH down at around 1 :

On T4 only medication the accepted conversion ratio is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in at around 4 or under :

So you find your conversion you simply divide your T3 into your T4 and I'm getting 9. 26 :

So the logical answer is to drop some T4 and add some T3 as you are clearly not utilising the T4 medication,

Currently depending o where you live you may. or may not be able to be prescribed T3 - Liothyronine. It is a post code lottery and on costs rather than on efficacy of medication.

Doctors were once allowed to prescribe both T3 or Natural Desiccated Thyroid if the patient wasn't improved on T4 only, but currently you need a referral to endocrinology and again your endo ill more than likely being constrained by the local CCG than his/her knowledge.

Some doctors are writing private prescriptions for T3 and sympathetic to their patient's ill health, others are not, so pot luck again there.

The alternative is to ask other forum members who self medicate for a trusted source of supply and then DI for Yourself like many of us o this forum have been forced to do.

I'm not saying it's the right thing to do, it is not, and I am sure we would all like to feel we were in " the NHS system " and had support - but when push comes to shove - it's your health and you know you need action sooner rather than later.

If you go into openprescribing and then analyse - or it maybe analyse and then openprescribing you can see by CCG and then by doctors surgery where the T3 - Liothyronine is being actively prescribed, though whether that helps at all, I don't know - it didn't help me - but that means nothing :

I'll leave others to read the rest of this blood test, if I may, I can't do the links ( I know ) ( ! ? ) :

Mlinde profile image
Mlinde

I've been flat out refused any other meds than levothyroxine. One endo, even managed to preempt my visit to him by stating in the letter, I won't (can't?) prescribe T3, never mind NDT, my preference frankly, so what was the point of the visit, when it's obvious that Levothyroxine doesn't work (I canceled the appointment). I feel sometimes, here, that I'm trapped in a circular argument, with the same stuff being regurgitated, ad nauseum, no wonder I get irritated and my texts censored. I don't have a leaky gut, I don't have coeliac, I'm not gluten intolerant, I have a busted thyroid that hasn't been treated properly for 13 years. And, moreover, I'm pretty certain the cause was severe stress that 'overloaded' my HPA Axis, that in fact occurred 20 years ago, 7 years before I was diagnosed (by accident). I say this because in retrospect, certain symptoms occurred 20 years ago that I ignored, as they passed but they were clearly a signal by my body, to me that something was wrong!

Oh, and different brands make no difference because the stuff doesn't work anyway.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

All but impossible to get NDT on NHS

Typically 6 prescriptions per person per year

Armour NDT

2,200 prescriptions in England in last year

openprescribing.net/analyse...

Erfa NDT

356 prescriptions in last year

openprescribing.net/analyse...

T3

57,000 prescriptions in last year

openprescribing.net/analyse...

pennyannie profile image
pennyannie in reply toMlinde

OK - so, if all the above can be ticked off as not being relevant we are left with two other options T3 only mediation or trying Natural Desiccated Thyroid.

I don't have a thyroid and having tried by myself both a T3/T4 and Natural Desiccated Thyroid I find NDT softer on my body, but than I'm also living with the consequences of Graves and taking radioactive iodine to burn my thyroid out in situ.

After reading up on this forum I too believe I've lived with thyroid issues long before diagnosis and Graves Disease is also a poorly understood and badly treated AI disease for which the NHS have no answers, and understand why you may feel as though you've been sidelined, for want of a better word.

So, the choice is yours, there are forum members self medicating who may help you with reliable sources of both T3 and NDT.

It's wrong, it's galling, and we end up not being able to work, and then need to finance our on health requirements from our savings - don't get angry with us - we are here to help you get even - though it might be at your expenses in the short term, until you feel better able to take on the medical mainstream.

I tried but the stress simply exacerbated my symptoms so now I try and help others on here as we all do - we all get it - as we've all been there in some shape and form.

Mlinde profile image
Mlinde in reply topennyannie

I'm with you! But I simply don't have the finances to go private, I've already spent 100s on tests of one kind and another. What I want to do, is find a reliable source of T3 at a reasonable price and mix and match with T4, thus the main hurdle is figuring out how much of each will I need as I understand that T3 is many orders of magnitude more powerful than the T4-T3 conversion. I read somewhere here, that someone was paying about £11 a month for T3 which is easily doable.

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, 'What I want to do, is find a reliable source of T3 at a reasonable price 'Please start a new post requesting sources for T3. We cannot discuss sources on the public forum, so conversations will need to happen by private message.

pennyannie profile image
pennyannie in reply toMlinde

I know. many of us are in the same boat, me included :

This forum can be a life line is you choose to come on board :

Just grab the ore, start a new post asking for trusted suppliers of T3 - by private message - PMs.

You will be helped with everything you need to know :

You'll need to read up a bit, and then the confidence builds as you become your own best advocate, like most of us have had to be - there is a wealth of knowledge and support here,

I feel lucky that I found this forum and respect everyone on here who give back of their time just to try and help others and this is just how this amazing forum works.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Private prescription enables access to Thybon Henning 20mcg liothyronine tablets via specialist pharmacies in U.K. at 50p per tablet

Typically dose T3 is 2 or 3 x 5mcg per day (cutting Thybon Henning 20mcg tablets into 1/4’s)

2 x 5mcg = £7 per month

3 x 5mcg = £11 per month

Thybon Henning 20mcg tablets only available via private consultation and prescription

RedApple profile image
RedAppleAdministrator in reply toMlinde

Mlinde, 'I've been flat out refused any other meds than levothyroxine. '

Yes, and so have many members of this forum. Plenty here have had no choice but to purchase their own alternative thyroid meds and self medicate. Self help is what this forum is about, in whatever way works for the individual.

humanbean profile image
humanbean in reply toMlinde

I'm pretty certain the cause was severe stress that 'overloaded' my HPA Axis, that in fact occurred 20 years ago,

If you are right with your supposition then I wonder if you've ever had your cortisol levels measured? Cortisol and thyroid hormones have a strong relationship. I had huge problems with thyroid hormones when I first started taking them, but at the time my cortisol was very high (it was over the range), my iron was below range and my ferritin was very low in range. By reducing my cortisol, and improving my nutrient levels I can now tolerate thyroid hormones well enough to make a difference to how I feel.

You know, you are making it very hard for people to help you by telling us all that we don't know what you've gone through and we are wasting your time. If you want us all to stop you should leave the forum.

😉

Mlinde profile image
Mlinde in reply tohumanbean

Funny you should mention that because that was the last test I had:

Result: Cortisol (morning): 4450 pg/ml

Reference Range: 920-12900 pg/ml

Result: toward the lower end of Green

Low Cortisol as best as I can understand it, contributes to a wonky thyroid.

SlowDragon profile image
SlowDragonAdministrator in reply toMlinde

Most reliable cortisol test

regeneruslabs.com/products/...

Mlinde profile image
Mlinde in reply tohumanbean

PS: Unfortunately, at the time, testing my cortisol level was the last thing on my mind, never mind my TSH!

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