Hello! I have been diagnosed with Hashimotos which apparently in the UK goes untreated until it becomes a full blown hypo/hyper thyroid issue. I was actually diagnosed by a Spanish endocrinologist while going through IVF treatment which my Dr's here in the UK agreed was a diagnosis they hadn't picked up on. I spent a year on levothyroxine prescribed by the Spanish fertility clinic bur was told I wouldn't get it on prescription in the UK until my blood levels reflected hypo/hyperthyroidism. The difference the levothyroxine made to my overall health and wellbeing, energy, mental health was astounding! Lots of symptoms including loss of sex drive and fatigue that I put down to mild depression as a side affect of years of tough fertility treatment were alleviated, I felt back to myself. Coming off the levothyroxine resulted in all the old symptoms coming back over time sadly. Does anyone have any advice on where I go from here? Has anyone had a diagnosis of hashimotos disease and recieved any treatment or has anyone went private and been given levothyroxine or have any advice on how to get it? Thanks in advance
Help getting a levothyroxine prescription - Thyroid UK
Help getting a levothyroxine prescription
Do you have any previous blood tests you can share so we can see what your TSH levels were at, and preferably FT4 and FT3 levels.
Some NHS GP's still stick to the TSH must be 10 or above, but some are more flexible, especially if you have very low FT4/ 3 levels, raised antibodies or have clear symptoms.
Do you know what your thyroid levels are currently?
I don't have recent ones but I will be gping for some soon so I can get that information. Thanks for responding, that's very helpful.x
I dont know how you feel about self sourcing and treating yourself. If you dont get any joy from an NHS GP and dont want to pay a private Endo then you can ask members for reliable sources via private message. Levo isnt expensive and its not illegal to import medication for personal use.
Oh OK, brilliant, thank you. Any suggestions if a reliable member to private message?
Post asking for any possible sources.
Your post will be CLOSED to prevent inadvertent replies on forum.
Welcome to the forum Gillm84
So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Patient to Patient tip is to ask for earliest possible blood draw (as TSH highest then), preferably before 9am.
Also avoid any supplement with Biotin in 5 days before blood tests.
If previously diagnosed elsewhere U.K. medics should still continue Levo, as this is usually necessary for rest of your life
How long have you been off Levo completely
Presumably you have high thyroid antibodies confirming hashimoto’s
Absolutely ESSENTIAL to test vitamin levels too
Sudden withdrawal of levothyroxine will frequently result in low vitamin levels
Low vitamin levels tend to lower TSH (all many medics incorrectly look at)
What vitamin supplements are you taking
Bloods should be retested 6-8 weeks after dose change or stopping levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to confirm your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and after reduction in dose
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test (and ….once back on levothyroxine…….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
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
with 2 tests on NHS with TSH over 5, especially with high thyroid antibodies and symptoms you should be treated
Slowdragon 'If previously diagnosed elsewhere U.K. medics should still continue Levo, as this is usually necessary for rest of your life'
Unfortunately, it doesn't work like that in the UK. A UK doctor has to take responsibility for any medication they prescribe. This isn't a problem when relocating from one part of the UK to another, but if hypothyroidism has not ever been diagnosed in the UK, a UK doctor is unlikely to prescribe medication until the diagnosis has been made in the UK. There have been instances where people have had to stop taking thyroid medication and wait it out until their TSH has reached a point at which the UK doctor agrees that medication is needed. By this time, the individual is likely to have become very unwell.
Would they do that to a diabetic……I doubt it
Current understanding is extremely poor on what disaster sudden withdrawal of levothyroxine can do to a patient
'Would they do that to a diabetic……I doubt it'
Whilst both diabetes and hypothyroidism are dependent on medication for life, the two are not comparable. For someone with T1 diabetes, life expectancy without insulin could be just a few days. A few weeks at best.
A slow decline into I'll health is OK. What a great system we have and it's so wonderfully reassuring that the UK medical profession is far up it's own... that they won't accept a diagnosis from Johnny Foreigner- cos they're just so on top of things here.
This is a much wider problem than just Hashimoto’s the U.K. lack of willingness to accept diagnostic letters etc from other countries leads to many difficulties but particularly in the field of autoimmune. Even here on Health Unlocked there is no central autoimmune forum so at present I am on 4 here for Hashimotos, Coeliacs ,Pernicious Anemia and Rheumatoid Arthritis. I also have Hyperparathyroidism and Sarcoidosis. We need to get better at asking the why question of why are our bodies doing this rather than what symptoms can we alleviate.
Filicatlasy 'here on Health Unlocked there is no central autoimmune forum'
The existence of a forum for any condition here on Health Unlocked, is dependent on there being a reputable charity or organisation that will take overall responsibility for the forum. This forum is under the umbrella of the Thyroid UK charity. If there is a 'central autoimmune' charity/organisation here in the UK, then they could, if they are willing, start an HU forum.
Yes but there is part of the problem, I wonder why we have separate charities, specialists, departments for what are basically all autoimmune diseases, perhaps we should be convincing Thyroid U.K., Coeliac UK , the charities for Rheumatoid Arthritis, pernicious anemia, hyper parathyroid, MS, Lupus, etc to be thinking of joint action on finding a cohesive collaborative approach to the root causes of autoimmune. Particularly as so many of us seem to start with one condition and end up with 2, 3 or 4. How would someone start such a campaign.
Do remember that this forum is not the Thyroid UK charity itself. The admins here simply volunteer to help moderate and have no special position with respect to Thyroid UK.
If you think that you have any ideas, contact Thyroid UK (and the other relevant organisations).
Yes, testing my antibodies levels was the way I was diagnosed in the Spanish clinic initially which my GP confirmed however ass it does not effect my thyroid level to which would be the marker for treatment here in the UK they will not prescribe anything. Hashimotos is not currently treated with medication in the UK until uour basic blood levels indicate a thyroid issue. I was treated by the Spanish clinic in the hopes to help balance hormones with the hope of the end result for me to be able to conceive, as my fertility journey gas cone to an end so has my medical intervention of this disease until it gets worse enough for UK practitioners to deem treatable. I have never had an issue with any mineral or vitamin deficiency but I will definitely look into this on my next round of blood work. Thank you
So what were TSH, Ft4 and Ft3 levels BEFORE starting on Levo in Spain
I'd like to know this too. My dic had said she will prescribe me "if I want". My t4 is 10 and t3 is 4 mol/l. Tsh is still in range but I am symptomatic. What change in symptoms did you notice
I'd like to know this too. My dic had said she will prescribe me "if I want". My t4 is 10 and t3 is 4 mol/l.
What’s the range on Ft4 and Ft3
You are legally entitled to copies of actual results and ranges
ALWAYS test early morning, ideally before 9am and only drink water between waking and test
If/when on levothyroxine…..last dose levothyroxine 24 hours before test
Make sure to maintain GOOD vitamin levels
On Levo ….TSH should be below 2.5 before considering TTC
Some medics would say all patients should have TSH below 2.5 before conception
Pregnancy
Before considering TTC thyroid and vitamin levels need to be stable
verywellhealth.com/infertil...
.
Pregnancy guidelines
NICE guidelines that if hypothyroid or subclinical you should see endocrinologist BEFORE TTC
cks.nice.org.uk/topics/hypo...
See pages 7&8
btf-thyroid.org/Handlers/Do...
Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception
cuh.nhs.uk/patient-informat...
thyroidpharmacist.com/artic...
Low ferritin, low thyroid levels and miscarriage
preventmiscarriage.com/iron...
Low iron and hypothyroid
endocrineweb.com/news/thyro...
Folate and B12 and Neural tube defects and autism
Hashimoto’s
Gluten and dairy
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
Do you still have any contact with Spain? Private treatment in the UK, for both doctor and medication, will be more expensive than in Spain.
No unfortunately not. As soon as I was no longer a patient of the fertility clinic there I was no longer under their care so conversation my prescription ran out, thay was the end of my treatment sadly.
”…diagnosed with Hashimotos which apparently in the UK goes untreated until it becomes a full blown hypo/hyper thyroid issue. ..”
-+-+-+
Sorry to hear this but that may be a peculiar UK GP issue?!
Not correct! Risky and negligent care!👆
For all thyroid problems you need a proper diagnosis from a consultant NHS doctor specialising in endocrinology/diabetology. Not a GP OR physician assistant (pseudo “doctor “) 🥹😳
Blood test results need specialist interpretation!
My primary HYPOthyroidism (autoimmune aetiology) was actually diagnosed and TREATED by an NHS consultant specialist doctor. Have been on Levothyroxine now 100mcg/day for the last three years.
God forbid if my GP alters my dosage without any consultation!
Please keep on questioning and challenging arrogance and ignorance particularly from GP surgeries!
Keep well. Take care!
BTW the administrators on this forum are SUPER AWESOME!!👍👏👏👂
Thanks for you response. When TTC I was seen by an endocrinologist in Spain as past of my treatment when they discovered the antibodies/hashimotos. No matter how hard my GP pushed the endocrinology department at my NHS hospital refused me treatment because my thyroid level was not above the number used as marker for treatment. Myy GP did not alter nor stop a prescription, they don't habe the ability for a start. I was never prescribed anything by any NHS specialist it was always from an endocrinologist from my fertility clinic in Spain. Once my treatment finished with them I no longer got treatment for the hashimotos as that was part of a fertility plan. Hashimotos doesn't seen to be taken seriously by tbe NHS the same way Hyper/hypo thyroidism is unfortunately even though it is usually a precursor that I'd say the sooner diagnosed and treated would be more helpful than letting it progress to a more worrying condition
hashimoto's (raised TPOab) is not treated by the NHS betty , as there is no available 'treatment' for it.
The resulting hypothyroidism can be treated ( IF it happens~ not everyone with raised TPOab becomes hypothyroid) .
NHS GP's can treat:
~ hypothyroidism (T4 below range).
~ and 'subclinical' hypothyroidism (TSH over range but FT4 within range) IF symptoms are a problem.
raised TPOab give GP's more confidence to initiate levo treatment in 'subclinical' hypo cases, because these show that progression to overt hypothyroidism is more likely at some point.
NHS endocrinology are very unlikely to accept a referral based only on positive TPOab .
I'm not sure that's the way it works though, in the UK straightforward hypothyroidism is usually diagnosed and treated by a GP. The NHS doesnt see the need for those patients to be seen in secondary care, ie via an Endo.
Even if a GP is willing to refer someone on to an Endo the Endo will often refuse the referral. Waiting lists are already ridiculously long, with some patients waiting 18 months or more. If everyone with Hypo had to be seen by an NHS Endo then simply the whole system would be gridlocked. It just couldn't work.
And the other issue is that many NHS Endos ( not all ) are diabetes specialists and know little more about thyroid than your average GP. So there are many members who've waited months to be seen, gone in with high hopes, only to have the same orthodoxy repeated to them that they've heard before. This is especially true where the patient wants a trial of T3.
I'm not saying all NHS Endos are bad, and it sounds as though you are receiving good treatment which is great, but there are enough poor or mediocre ones out there that make me question whether a referral is worth the hassle.
So am I just lucky?
I’m a long term type 1 diabetic (30 years) and it was my NHS consultant diabetologist who diagnosed my primary hypothyroidism initially and prescribed and manages my Levothyroxine. An exceptionally intelligent and very caring doc.👏👍
GP did not diagnose me.
I feel so depressed and sad for you people.
I don’t like feeling and being privileged. Sad for you guys.😭😢
You are lucky.
And it is painful to have to say that.
An irony being that so many members find the endocrinologists they see (if they even get that chance) are diabetes specialists with all too little understanding of thyroid issues.
And very pleased you hit the jackpot.
Hi,
I wouldn’t say “I’ve hit the jackpot”!
More like I’ve pulled “the short straw” in life!😱
With the following AI diseases all diagnosed by NHS consultant dermatologists, diabetologists, endocrinologists, nephrologists I’ve the following to manage and treat 24/7:
Type1 diabetes, primary hypothyroidism, DLE(Discoid lupus erythematosus), SCLE (Subacute cutaneous lupus erythematosus), Lupus nephritis (class 5), SLE(Systemic lupus erythematosus), diabetic retinopathy, CFS, ultra photosensitivity, sudden, painful joint pain, serious foot neuropathy, autoimmune alopecia etc etc All confirmed. Not being hypochondriacal!🙄🤣
I also live alone. Sad.
My philosophy : if you’ve presently got one AI disease you can be sure that others are knocking at the door with a host of dreadful symptoms mostly INVISIBLE to others. Sad.
The jackpot was the "An exceptionally intelligent and very caring doc." ` 
I think people who have such a lot of autoimmune issues should be right at the top of some list for investigation - for two reasons.
First, as individuals trying to cope with so much.
Second, as beacons, lighthouses, whatever - literally telling researchers so much about autoimmunity. Surely there must be commonalities across these? For example, genetic composition, or history of (or current) infectious agents such as viruses or bacteria, or toxins?
Hi Gillm85,
I am Hungarian with Hashimoto and living in the UK - so resonating with all that you described. No treatment whatsoever and NHS never testes my antiTPO level as my THS was in the normal range. I went to Budapest, had a massive thyroid testing privately (it was about £120 tops) then consulted an endocrinologist ( £50 or a bit more but not hundreds) and she prescribed me levothyroxine for 2 months immediately. Probably she would be able to prescribe you more, but not sure.
If you have your blood tests already you can present it to the doc, but I wanted to have fresh results with the iodine level included ( turned out to be below the normal range!!!)
I know it's not the ideal case to travel foe this but they speakEnglish and you are treated immediately and with attention and care.
Doctor name / details redacted
I was here - but she works in more places in Budapest.
Let me know if I can help in anything further, get well soon!Gabi
It is NOT allowed to identify individual doctors and, most especially, not to post as if a recommendation.
This applies regardless where they are located.
If you wish to help the person, send them a Private Message (also called Chat) with your information. (The poster might already have asked for Private Messages.)
Guideline 30 applies:
30. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
I was diagnosed with subclinical hypothyroidism and raised antibodies (TPO) earlier this year. I'd had symptoms for a few years prior. My GP practice have been brilliant and started me on 75mg daily so it's possible for levothyroxine to be prescribed. I do count myself very lucky though, reading some posts here. Good luck!
i wouldn't rule out support from you GP as some do u understand and others are willing to be educated, like mine. The fact you were doing well on Levo and you have a diagnosis should be enough, if not then it is worth changing your GP for one that cares about your ongoing health. Btw my Sister was diagnosed in Spain and her GP here honoured her prescription.
I have hashis with symptoms but TSH, FT4, FT3 were all in range but not optimal, was never diagnosed by NHS, but was able to get treated by a private GP; now getting levo via a private pharmacy that lots of us use!
Best of luck getting the treatment you need, you're in the right place for advice don't know what is have done without this forum
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