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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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?
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.
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 .
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
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.
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)
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
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.
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).
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
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.
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
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
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
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
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.
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
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.
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.
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
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.
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).
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
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
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.
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.
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.
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
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
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
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
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
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
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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