I cannot trust my GP: I have had a GP for 8 yrs... - Thyroid UK

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I cannot trust my GP

thyroidsymtoms profile image
30 Replies

I have had a GP for 8 yrs who used to categorize everything as depression or anxiety or uncurable or everyone gets it.

I used to have gut issue and my GP would just tell me that is normal thing. And I should change my diet

I had given up on NHS. I had stopped visiting my GP altogether.

However, in 2019 my situation started getting worse and my GP would still plY the same tune. I have a horrible face with skin infection, pain in my body and frequent urination. His suggestion was there is no cure and all this is symptom of depression and anxiety.

Though once I was completely knocked out , I was furious and lost it on my GP and forced him to give blood tests.

And I was diagnosed with Hypothyroidism and B12 deficiency. Even though he was not keen asked for a gastroenterology referal.

At this point i requested for change of GP to my practice which never responding. During an emergency appointment, the doctor told me I should go to CQC. After many exchanges with CQC they called and my practice was changed by GP 4 months back.

After T4 medication there is improvement in my mind clarity. Though I think i have got other symptoms and my body is out order most of the time. The good thing is my mind is back

My GP has changed he is not any better but I take advice from a doctor abroad to deal with GP in the UK and also some other groups to find out my options.

Though this GP knows I verify the crap he tries to give me like the cold hand is normal in UK, and pain is body normal thing. Or he has a dipstick test and it came back normal, so frequent urination is normal. Or blurry vision happens to everyone.

I started requesting my test result so I can get them checked to see if the action is being taken properly and i getting positive results.

However now I have noticed my surgery trying to make it even more difficult to request the results of blood tests. Last time, the receptionist told me i should speak to GP as not approved it and GP claimed he has given the approval for test results to be shared. Later when wrote the same in email , I was told I cannot request the test results via email and I should go to anima.

My GP would claim there is no T3 medication given in UK and I had to share with him NICE reference which he refused, Then I called the endocrinology Hospital and they advised they give T3 in the UK. I told this to GP and he told me he would investigate but did not even suggest he will refer me to endocrinology.

I been extreme exhaustion and pain in the bones and I told my doctor about the tests. He said it was normal to share some exercises. My GP told me there are 1000 patients in surgery and I am not the only patient.

Now I am seeing a new pattern where I cannot see where in on NHS app I will see "

Normal and no action required"

However, when I visit the GP, I am told they starting me on medication as the test result vitamin D was low.

I have also complained to ICB , MP which is another ordeal and a never-ending story.

I used to think the doctor is looking after my interests and I would not question them at all though now I have lost all my trust in the GP and feel he is an administrator whose first instinct is not to trust me and send me back 3 -4 times, only then give me superficial medicine to fix the issue rather than looking at the root cause of the issue.

I feel the GP model of NHS is flawed as they least trained and most tasked group so they just ignore the patients.

Does anyone have any advise other than changing the GP or GP surgery ( which I have done just 4 month back)

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Buddy195 profile image
Buddy195Administrator

in your last post SlowDragon recommended you test privately for TSH, FT3, FT4 plus key thyroid vitamins, if these were unavailable to you via your GP. Did you explore this further?

thyroidsymtoms profile image
thyroidsymtoms in reply to Buddy195

Not yet . I had not read the messages . I explore those now.

Though previous GP would not even like to see any test done outside NHS. How do I submit those as now I am being told by my surgery that I should not request test result on email but go via anima to request for test results.

Its interesting that as a male you have also been given the brush off regarding your physical health, this is happening a lot, both historically and presently to a lot of female patients. We're always being told its anxiety/ depression/ hypochondria/ hormones. We have an idea that males get better treatment and are taken more seriously, but this is not happening in your case.

Even when it later comes to light there was a physical cause all along, no apology, no " lessons will be learned" no improvement in care. And a lot of people are saddled with a mental health, Fibromyalgia or Chronic Fatigue label which follows them around for the rest of their life like week old fish.

And as soon as a doctor sees that they blame everything on that. And won't even consider it could be something else. Its extremely lazy, bordering on negligent medicine imo. And dangerous to boot as something potentially serious could easily be overlooked.

I believe that doctors surgeries get awarded points and therefore extra funding based on certain conditions they diagnose. Things like depression/ anxiety, high blood pressure, diabetes attract more funding, hence the alacrity in which doctors prescribe medications for these, statins are another bonus. Conversely thyroid meds get hardly any points.

So take a doctor who has no idea what's wrong with you, who doesn't want to spend their budget on tests or referrals, combined with extra money for the practice if they say you're depressed and wonder no more. I'd love to hear your GP's explanation of how depression can cause a skin infection. That's a new one.

Many GP's are partners in the surgery these days and are private businesses, driven by profit. The NHS leases their services but the days of family doctors who are primarily concerned with the health of their patients, are sadly a thing of the past.

I honestly despair and only use my surgery for absolute emergencies and getting my medication. Anything thyroid related I prefer to treat myself.

thyroidsymtoms profile image
thyroidsymtoms in reply to Sparklingsunshine

I had given up on NHS and stopped going as for all the symptoms i had either it was depression and anxiety. Or their is no cure for symptoms like skin infection, hair loss or pot belly even though i am having one meal. I would told i eat bad food without even asking what I eat. My body ache I was this is stiff ness i should dont excercise enough. Like for b12 I was i dont eat non veg enought. And for vitamin D i am told i dont go sun enough. Though now i seeking advise of other places I am told if i taking vit supplements, omega 3 and taking nut then there might be an absoption problem.

My GP never ask me what I eat yet gives me verdict when I tell them I taking advise from other doctor I was told by GP why dont I get medicine from other doctor , i told him because he is not in UK. This is supposed to be a better GP who was given on after cqc called my practice manager as the practice manager would not respond to my emails .

SlowDragon profile image
SlowDragonAdministrator

previous post

healthunlocked.com/thyroidu...

How much levothyroxine are you taking

Which brand

How much do you weigh in kilo

EXACTLY what vitamins are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/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

as a vegetarian and on levothyroxine it’s extremely difficult to maintain optimal iron/ferritin

Come back with new post once you have FULL thyroid and vitamin test results

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

Many thank slow dragon for detailed response.

1) I am on levothrozine 50 mg teva brand as of now. I did not know the brand also effect i think brand keep changing every time I order.

I am taking of the shelf multivitamin with mineral and omega 3, Plus i eat lot almonds. I try include cheeze in one meal as well. And vegs , specially peas for iron

2) For B12 , I was given Hydroxocobalamin 1mg/1ml solution for injection ampoules for one week in septemeber 2023.

3) I have in last week been diagnosed with Vitamin D deficiency as of today (24th May) . My GP has told me he will start me on

Colecalciferol 50,000unit capsules To take One capsule once weekly for 6 weeks 6 capsule

I was told I should ask for vitamin D3 for the body ache though my GP claims Colecalciferol is vitamin D3

I have also been referred to biopsy by the gastro team as she felt i might have a b12 absorption issue in the upper gut. I stil waiting for an appointment.( though my GP felt their is no need for it but I insisted on gastro referral)

I am not a vegetarian. My gp keeps telling me stuff, he also claims my vitamin d is also low because I go out in sun enough and when I asked where does the vitamin D get absorbed he said from skin and into extra drain out via liver. Though the other doctor had told me my aches might be due to vitamin deficeny and is should ask for vit D3 for the aches I am having when I told this to my GP my said how can the other know more than him when he has all the records and othe doctor has none.

I also attching all the test result from aug 2022 , nov-dec 2023 and 20 May 2024

I look forward to your suggestions.

Results18 Aug 2023- when i was diagnosed with hypothyroidism and b12 deficiency.
SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

50mcg is only standard STARTER dose

How long have you been left on just 50mcg levothyroxine

High thyroid antibodies confirms the cause of your hypothyroidism is autoimmune

No wonder your vitamin levels are terrible

This is as direct result of being left grossly under medicated on too low a dose levothyroxine. This results in low stomach acid, leading to poor nutrient absorption and low vitamin levels as direct result.

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Guidelines on eventual dose is approximately 1.6mcg per kilo per day

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose of 1.6mcg per kilo per day (approximately)

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

I have been on levo 50 mg since oct of 2023.

I am not sure of my weight as of now as the scale at my home is not working. I will check my weght and update

My gp only looked at the item in red from test report it seems my 20th of May result but did not mention anything about levo dose increase i see my TSH is at 3.81 from 20 May test results.

do you see any thing glaring from the test result from 20th may 2024. Doctor has wants to do h1bac test when asked more test as dip test came negative and he doing more test for Calcium. Below are doctor comments from today consultation ----

discussed bloods- low Vitamin D- to start colecalciferol

Has been c/o polyuria and polydipsia, no weight loss but has noticed some weight gain- HBA1c and Ca added to bloods

He also mentioned that he was unable to do OGD as he required sedation, he doesn't have anyone that can take him, asking if we can organise someone to take him to endocsocopy and sit with him for 8 hours and drp him home- i explained unfortanately we are unable to do this and he will need to organise this with the OGD team.

also asking about T3 for cold hands- I will A+G endo to discuss further

20 May 2024 result
SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

For B12 , I was given Hydroxocobalamin 1mg/1ml solution for injection ampoules for one week

August 2023 results

Are you now on daily B12 supplements or ongoing monthly or bi-monthly regular B12 injections

If not why not

Folate far too low

These both need retesting now

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Post discussing start B12 injections

healthunlocked.com/thyroidu...

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

MY GP in November told me i dont need any b12 injections as my b12 came at 328 and is normal. if I look at december though i started taking multivitamins. I see in 20 may 2024 b12 has come down to 251 but it seems gp has not picked on it as it not in red in the report.

I am taking multivitamins with minerals which has b12 and zinc and magnesium though it seems that is no effect on my b12

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

Multivitamins never recommended

A) not enough to correct low levels

B) contain iodine not recommended for anyone with Hashimoto’s

C) usually cheap poorly absorbed ingredients

You need a good quality separate daily B12 and good quality separate daily vitamin B complex

GP will only treat vitamin deficiencies

You will need to self supplement to maintain optimal levels

Retest B12, folate and ferritin at least annually

Retest vitamin D twice a year

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

I have in last week been diagnosed with Vitamin D deficiency as of today (24th May) . My GP has told me he will start me on 50,000unit capsules To take One capsule once weekly for 6 weeks 6 capsule

How low exactly was vitamin D

retest vitamin D level at end of GP prescription for LOADING dose

You will NEED ongoing daily vitamin D indefinitely

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

Many thanks again. i am shocked my gp does not even provide such info. He only looks at red marker that after test for which i have to go atleast for 3 appointments

Vitamin D was at a level on 9 on 20th may result as it came in red doctor took notice attaching the test result for your refrence.

I am booked forHBA1c and Ca test on 11 of June

20 May test results
thyroidsymtoms profile image
thyroidsymtoms

Please find the test from nov-dec 2023. Here the doctor gave me perfect health and I was told I over thinking. Most of the symptooms i are common to most people including body aches , cold hands , blurry vision, inflamed throat. i was in postion to question my energy level were also low.

As for my weight i think it should more than 80 kgs. I have so unwell for so long that most things are not working including the weighing scale.I will check my weight I keep fluctaing as i try to make sure my pot belly does not grow

Nov -Dec 2023 results.
thyroidsymtoms profile image
thyroidsymtoms in reply to thyroidsymtoms

These my last test results on 20 May , The Doctor refused test for PA as he said it had already been done and it was normal though another doctor felt is should has more tests as intrinsic factors is not sufficient to diagnose PA and he was suggesting i should focus more on my gut and kidney issue which damaging my over all body considering the sysmptoms i am showing.

My GP has told me that he will be starting me on Colecalciferol 50,000unit capsules.

20 May test results
thyroidsymtoms profile image
thyroidsymtoms in reply to thyroidsymtoms

Also I have been having issue with frequent urination since 2019. Though GP will do some test and tell me test came negative . This time also on 09May I asked told they have done dip test and it came negative. Though I was told persist with GP and ask him for further test for kidney if dip test negative.

Today I told him and he was not happy but have given test as below

HBA1c and Ca

I think one is for calcium and another is for diabetes.

Please find the dip test and I was told that no action is required as everthing came negative.

09 May dip test for frequent urniations
SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

what time of day was test

ALWAYS book early morning test, ideally before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

TSH 3.81

In need of immediate 25mcg dose increase in levothyroxine

Teva brand levothyroxine also upsets many, many people

Suggest you consider trying different brand

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets.

Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

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.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

November 2023 test was done at 10:30 am

December 2023 test was done at 8:24 am

9 may 2024 dip stick test was done 10:49 am

20 may 2024 test was done at 1:24 pm

I would have to ask my gp for does increase of levo

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

Yes request/politely insist on next 25mcg dose increase in Levo

Retest again in 2-3 months, making sure to test early morning

Likely to need further increase after this

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

low GFR

Kidney function is DIRECTLY linked to being hypothyroid (many GP’s are unaware of connection)

kidney function will improve as dose Levo is slowly increased over coming year

ncbi.nlm.nih.gov/pmc/articl....

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

vitamin D 9nmol

Obviously severely deficient.

Extremely common when hypothyroid.

Retest twice year and maintain at least over 80nmol minimum

Will take a few months to improve

B12 251 also too low

Maintain at minimum 500

Folate borderline and will improve on vitamin B complex

Look at increasing iron rich foods in your diet to maintain ferritin at least over 100-150

Vitamin levels poor because you are hypothyroid and left on inadequate dose Levothyroxine

80kilo = 128mcg approximately as eventual daily dose levothyroxine you may end up taking

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

TSH too high

No Ft4 or Ft3

Increasingly NHS only tests TSH, which is totally inadequate

Do you remember if November test was early morning

Note says TSH should be in LOWER half of range

If you had hypothyroid symptoms with TSH over 2 dose levothyroxine should have been increased by 25mcg daily after these results

Bloods retested 6-8 weeks after EACH increase in levothyroxine

December test results

B12 and folate too low

What vitamin supplements were you taking then

Down to us to self supplement to maintain optimal levels

NHS will only treat vitamin deficiencies

No iron or ferritin results

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

I am sure my gp does not know this and would not like when i ask for so many requests to do with b12 , vitamin D and Levo. He already keeps telling me I am not the only patient who needs help

Many thanks for your time and god bless. You are a star. I have not felt so much concern and time for me in so many yrs from anyone

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

The problem with Hashimoto’s (autoimmune thyroid disease) is frequently TSH is sluggish to respond

In part this is because low vitamin levels are particularly common with Hashimoto’s

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we need GOOD vitamin levels

Low vitamin levels results in relatively high Ft4 compared to Ft3 ……this tends to lower TSH

TSH is all most medics (incorrectly) look at

It’s ESSENTIAL to do full thyroid test ….TSH, Ft4 and Ft3 …..you will see thousands of U.K. members on here test privately to make progress and self supplement to maintain OPTIMAL vitamin levels

This is by far the busiest forum with over 138,000 members, vast majority are U.K. based

About 90% of primary hypothyroidism is autoimmune thyroid disease.

There’s almost 2 million people in U.K. on levothyroxine. This is not a rare disease, but it is rarely well managed or understood.

It’s highly complex, frequently affects gut and digestive system and every cell in your body

High percentage of Hashimoto’s patients benefit from strictly gluten free diet. GP should have done coeliac blood test at diagnosis of your hypothyroidism being autoimmune

And about 50% autoimmune patients find dairy free diet helpful

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

Thanks i have started asking my GP for blood test after i was bed ridden for 2 year without work because mind was not working and could not even feel how body. So financially I am not in good state and I am not keen on taking benefits. Since last 1 months my mind feel like can read or talk but now i can feel my body whhich is in pain when i body , cold hand , blurry visiion suddenly when i read , Frequent urnination. So I dont go out much other to see the sun in the morning when I wake i would not even go out because I did not have energy. I will see my GP gives good medicine, if not I think I dont have an option to but buy the good vitamins you are proposing.

thyroidsymtoms profile image
thyroidsymtoms in reply to thyroidsymtoms

I will ask my gp for coliac test was. i doubt and it will be difficult conversation as he throws lot of tantrums and keep telling me how educated he is. He younger than I am but it seems he is elder to me the way i speak. This is supposed to be GP who is assigned after complained and only after cqc called he was assigned to me.

Sparklingsunshine profile image
Sparklingsunshine in reply to thyroidsymtoms

Please dont feel bad about claiming benefits, I know there's a horrible culture of calling people who need them scroungers but the way I look at it is you've paid into the system, just like you do when you insure your car or your house.

You arent getting something for nothing and its meant to be a safety net. You are ill through no fault of your own and need time and optimal treatment to recover.

Worrying about your finances wont help with that recovery and you need a source of income to buy the supplements that were suggested. Your health is more important than your pride lol. And hopefully once you feel better you can look for work again. So look at claiming please.

SlowDragon profile image
SlowDragonAdministrator

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

Bloating and IBS common issues

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

healthunlocked.com/thyroidu...

thyroidsymtoms profile image
thyroidsymtoms in reply to SlowDragon

Mannnnnnnnnny thanks . You are star. I am guessing the GP centric is approach is the reason for the failure of this system though I doubt this willl every change if has not change 50+ yrs

SlowDragon profile image
SlowDragonAdministrator in reply to thyroidsymtoms

if GP refuses to increase dose levothyroxine you may need to see thyroid specialist

If you do need to ….get FULL thyroid testing BEFORE consultation

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations then you can transfer across.

NHS waiting time is typically over a year and if TSH “within range” referral often refused and kicked back to GP

thyroiduk.org/contact-us/ge...

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