Rubbish GP? Hypothyroidism: So I kept making... - Thyroid UK

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Rubbish GP? Hypothyroidism

Hibichan profile image
16 Replies

So I kept making appointments to see my GP (over the last 6 years) as I was exhausted, felt down, was achy, dizzy, etc etc. And they kept putting it down to me being a new Mum (again 6 years ago) and then on depression and anxiety.

Each time I left feeling let down, defeated and kind of like 'Well maybe this is how everyone feels and I just can't handle it'

This got worse over the past few months, like very rapidly to the point where I was aching so much, had calf pain, agony in my joints, couldn't stay awake as I would get physical pain if I tried, dizzy spells, headaches and then numbness in my legs. The most scary being numbness combined with dizzyness and heart palpitations.

I literally thought I was dying.

I spoke to the GP and explained all of this and was begging for help. I was so distressed and scared. She said we'd start with a blood test and then see how it goes.

I got my results with says hypothyroidism and prediabetes. My GP (a different one to the one who sorted out the blood test) said 'Oh it's hypothyroidism, don't bother Googling it. All your symptoms though are caused by anxiety. We'll do a blood test in 12 weeks'

Obviously I Googled it as I'm not just going to ignore it.

Since then I've had good days, bad days but in general feel unable to cope. Today I have been in bed most of the day. I've not been in work this week as I've been too dizzy, exhausted and achy. But then I am stressing about money which also doesn't help. I need to work but I just can't some days.

I contacted the doctor again as I can't live like this. They will call me on Friday.

I'm so miserable. I have so much I want to do, so much I want to achieve and just feel like I'm trying to get through the day. I have a pile of washing to sort out, clothes to put away and I need a shower (I haven't had the energy to wash for a couple of days) and ideally a want to go to work. But the thought of even picking up a dish just makes me feel like crying. I don't know what to do.

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Hibichan
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

So how much levothyroxine were you started on

How long since diagnosis

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Standard starter dose of levothyroxine is 50mcg

Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most important results are always Ft3 followed by Ft4. When adequately treated Ft3 should be at least 60% through range

Important to regularly retest vitamin D, folate, ferritin and B12 too. These frequently are low and often need improving by supplementing

do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

Hibichan profile image
Hibichan in reply to SlowDragon

I was diagnosed about three weeks ago and haven't been given any medication or any advice. Just told to have another blood test in 12 weeks and that's that.

SlowDragon profile image
SlowDragonAdministrator in reply to Hibichan

Yes it’s true you need 2nd blood test if this was first abnormal thyroid result

As levothyroxine is usually prescribed for rest of your life it’s important to retest 6-8 weeks after first abnormal results

Meanwhile suggest you get hold of actual results. See EXACTLY how hypothyroid your results suggest you are

Meanwhile request GP test vitamin D, folate, ferritin and B12 levels now

Or test privately

See flow chart on here re starting levothyroxine

gp-update.co.uk/Latest-Upda...

SlowDragon profile image
SlowDragonAdministrator

Highly likely thyroid levels have been tested numerous times in past .....get hold of all your previous results

Hibichan profile image
Hibichan in reply to SlowDragon

This is the first time they've tested me for it. They always just go 'Meh, it's depression' and leave it at that. They never did any blood tests. Should they not be doing a scan on my neck or anything. I had thyroid issues when I was about 14 and remember having tons of blood work, scans, X rays, etc. But then nothing and now I'm 34 and here we go again lol

Hibichan profile image
Hibichan in reply to SlowDragon

I have my results here -

Specimen

Specimen Type: TYPE UNSPECIFIED

Specimen Reference#: 1

Collected: 03 Feb 2021

Received: 03 Feb 2021

Provider Sample ID: 1016938053UE

Pathology Investigations

Renal function tests

Serum sodium level 140 mmol/L [133.0 - 146.0]

Serum potassium level 3.9 mmol/L [3.5 - 5.3]

Serum creatinine level 82 umol/L [53.0 - 97.0]

Glomerular filtration rate > 60 mL/min [60.0 - 150.0]

GFR COMMENT Interpret eGFR with caution for people with extremes of muscle mass.

Liver function tests

Serum albumin level 44 g/L [35.0 - 50.0]

Serum total bilirubin level 5 umol/L [0.0 - 21.0]

Serum alkaline phosphatase level 49 iu/L [30.0 - 130.0]

Serum alanine aminotransferase level 19 iu/L [10.0 - 31.0]

Please note: The quoted ranges apply to non pregnant population.~Trans

aminases (ALT/AST),

gamma-glutamyl transferase (GGT) and bilirubin are 20% lower than the

non-pregnant range throughout

normal pregnancy.

Serum TSH level 6.08 mu/L [0.35 - 5.0]

Above high reference limit

Serum free T4 level 10.3 pmol/L [9.0 - 20.0]

If not on thyroxine, TFTs suggest possible subclinical hypothyroidism.

Serum C reactive protein level 2 mg/L [0.0 - 5.0]

Serum ferritin level 31 ug/L [20.0 - 275.0]

Serum vitamin B12 level 1106 ng/L [180.0 - 914.0]

Above high reference limit

Low <145~ B'line 145 - 180~ No

rmal 180 - 914

Serum folate level 10.6 ug/L [2.7 - 34.0]

Low <2.3 ug/L~ B'line 2.3 - 2.7 ug/L~

Normal 2.8 - 34

ug/L

HBA1C (DIAGNOSTIC)

Haemoglobin A1c level - IFCC standardised 39 mmol/mol [20.0 - 42.0]

HBA1C COMMENT For Diagnosis

An HbA1c greater or equal to 48 mmol/mol is consistent with a diagnosi

s of type 2 diabetes.

If HbA1c is greater or equal to 48 mmol/mol but patient has NO symptom

s, suggest repeat HbA1c in 2

weeks.

A value of less than 48 mmol/mol (6.5%) does not exclude diabetes diag

nosed using glucose tests.

HbA1c 42 - 47 mmol/mol: Consider patient to be at high risk of progres

sion to type 2 diabetes.

Consider referral to the National Diabetes Prevention Programme (NICE

PH38 September 2017 - Type 2

diabetes: prevention in people at high risk).

For Monitoring

Less than 20mmol/mol (<4%) - Consider risk of hypoglycaemia.

20mmol/mol - 42mmol/mol (4% - 6% ) - Non-diabetic ref. range(excellent

diabetic control).

48mmol/mol - 59mmol/mol (6.5% - 7.5%) - Targets for Diabetics.

Greater than 64mmol/mol (>8%) - Poor diabetic control.

Serum total 25-hydroxy vitamin D level 62 nmol/L [50.0 - 150.0]

Analysis performed by immunoassay which detects 100% Vit D3 and 82% of

Vit D2.

Full blood count

Haemoglobin concentration 135 g/L [115.0 - 165.0]

Total white blood count 7.4 10*9/L [4.0 - 11.0]

Platelet count - observation 381 10*9/L [150.0 - 450.0]

Mean cell volume 85 fl [76.0 - 96.0]

Red blood cell count 4.64 10*12/L [3.8 - 4.8]

PCV 0.394 /L [0.37 - 0.47]

Mean cell haemoglobin level 29.1 pg [27.0 - 32.0]

Neutrophil count 4.3 10*9/L [2.0 - 8.0]

Lymphocyte count 2.3 10*9/L [1.0 - 4.8]

Monocyte count - observation 0.7 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.4]

SlowDragon profile image
SlowDragonAdministrator in reply to Hibichan

Serum TSH level 6.08 mu/L [0.35 - 5.0]

Serum free T4 level 10.3 pmol/L [9.0 - 20.0]

Serum ferritin level 31 ug/L [20.0 - 275.0]

Serum vitamin B12 level 1106 ng/L [180.0 - 914.0]

Serum folate level 10.6 ug/L [2.7 - 34.0]

Serum vitamin D level 62 nmol/L [50.0 - 150.0]

So you need thyroid antibodies tested at next test to see if cause of hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease

Any close family members have any autoimmune diseases. Often runs in families

Make sure next test done as early as possible in morning before eating or drinking anything other than water

This gives highest TSH

TSH is over range indicating hypothyroid

But because Ft4 is within range, its classed as sub clinical (slightly ironic considering its common to have lots of symptoms with these results)

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

Common when hypothyroid to develop LOW stomach acid. This leads to poor nutrient absorption and low vitamin levels

Your folate, Vitamin D and ferritin are all slightly low.

What vitamin supplements are you currently taking, if any?

Hibichan profile image
Hibichan in reply to SlowDragon

Thank you so much for going through that and explaining.

I started taking kelp tablets this week and I take a multivitamin and vitamin D regularly and have done for a while.

My Dad and Uncle both have cealiacs disease but that's all I know in relation to my family and autoimmune diseases.

SlowDragon profile image
SlowDragonAdministrator in reply to Hibichan

Never take any kelp or iodine

Likely to make you much worse

Important to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

Vast majority of hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Iodine should only ever be taken if tested and found deficient

Multivitamins are never recommended on here. Too little of what we do need. And usually cheap poorly absorbed ingredients.

As your dad has coeliac disease you should automatically be tested

Autoimmune thyroid disease, aka 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 over 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 and slowly lower TPO antibodies

While still eating high gluten diet ask/insist GP for coeliac blood test first or buy test online for under £20, just to rule it out first

(Explain your Dad is coeliac )

healthcheckshop.co.uk/store...?

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...

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.

SlowDragon profile image
SlowDragonAdministrator in reply to Hibichan

Instead of multivitamin suggest you start with just supplementing to improve low vitamin D and low folate

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...

NHS Guidelines on dose vitamin D required

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

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/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 via NHS test options

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

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

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

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Low folate

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

This can help keep all B vitamins in balance

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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...

Only add one supplement at a time then wait at least 10 days to assess before adding another. Suggest starting with vitamin D

Hibichan profile image
Hibichan in reply to SlowDragon

Thank you so much for all your advice and guidence. I really appreciate it. You've been incredibly helpful <3

SlowDragon profile image
SlowDragonAdministrator in reply to Hibichan

Your Dad needs to test his vitamin levels.

As coeliac common to have low vitamin levels

Hibichan profile image
Hibichan in reply to SlowDragon

I know he gets B12 injections at the hospital but not sure about anything else.

Bearo profile image
Bearo

I might be tempted to persuade the GP to do a thyroid antibodies test. If the result was positive then you are hypothyroid caused by autoimmune disease (Hashimoto’s) and it won’t go away, so you’d be in a strong position to request starting treatment- no need to wait twelve weeks.

If GP won’t do any testing any sooner you could do a private blood test that included the antibody tests - then if it was positive show your GP that the diagnosis is there in the blood result.

Failing those options, or a private test that didn’t confirm Hashimoto’s, I’d follow Slow Dragon’s good advice and also pressure the GP to test as soon as possible - push the receptionist to book a test in, say, eight to ten weeks time - even ten weeks is sooner than twelve weeks.

Sorry you are feeling so poorly, but hopefully you will get treated soon.

Hibichan profile image
Hibichan

Thank you so much for your advice. I have an appointment on the phone with my doctor today so will ask. I really appreciate all the help as otherwise I get all muddled on the phone and don't know what I'm asking for or what I need and get fobbed off time and time again.I have a little notebook at hand to write key words in to remind me to ask. I get a little nervous and forget what I'm doing most of the time lol.

Hibichan profile image
Hibichan

My doctor is going to run more blood tests, check for celiacs and then was like 'Well you know, it's probably not your thyroid causing your symptoms as it's not been going on long enough'

*bangs head against brick wall*

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