More thyroid blood resuls: My TSH has come back... - Thyroid UK

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More thyroid blood resuls

Clydeiknowyou69 profile image
24 Replies

My TSH has come back as 5.75. (0.27-4.20) Free T4 16.3. (10.0-22.0) Doctor I spoke to before bloods said if TSH was still over range I was to be medicated due to previous bloods. Now I've apparently to wait three months to get tested again. Previous bloods: March TSH 5, FreeT4 17.2, same range, July: TSH 5.57, FreeT4 17, same range. Also tested positive for TPO antibodies in August this year. *96.1 u/mL(<6.0) To speak to GP in the morning if I can get a phone appointment. Ready to throw myself in the harbour. So upset and disappointed. Any help you wonderful people.

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Clydeiknowyou69
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SlowDragon profile image
SlowDragonAdministrator

With 2 separate tests with TSH at 5 or over and thyroid antibodies and symptoms….you should have been prescribed levothyroxine in July or August

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Was latest test done early morning

Stand your ground and request guidelines are followed that you are started on levothyroxine

Request firmly that GP also test vitamin D, folate, B12 and ferritin and coeliac blood test too

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

Yes bloods were done just after eight thirty in the morning. I have a folate defiency 2.2 (3.9-26.8) Had to request this be treated, now on folic acid. Ferritin was 40 (13-250) Vitamin B12 was 343 (197-771) all from March this year. No vitamin D tested, or coeliac. Will request this if I can manage to speak to a GP in the morning. Thank you again for your reply SlowDragon.

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

Ferritin is low especially for post menopause

But GP won’t probably agree

Ferritin 40 ug/L (13 - 250) 

Just 11.4% through range

are you vegetarian or vegan?

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus red meat most days, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

When was folate deficiency found

How long have you been on folic acid

When finish folic acid prescription

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 

chriskresser.com/folate-vs-...

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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) 

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 methyl folate supplement and continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

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

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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...

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

vitamin D deficiency strongly linked to Hashimoto’s

Are you currently taking any vitamin D supplements

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

No supplements, only the folic acid. This was from March, only recently taking the folic acid. I do eat liver and red meat. Will up the vitamin C intake as well. Thank you again for your invaluable advice.

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

Hypothyroidism leads to low stomach acid, poor nutrient absorption and low vitamin levels

So likely to need to supplement

Come back with new post once you get vitamin D result

shaws profile image
shawsAdministrator in reply toClydeiknowyou69

It comes as no surprise to me that many GPs do not seem to have been taught how to diagnose/treat patients who may have a dysfunctional thyroid gland,

I pity people who do not have access to the internet as they may have many struggles and not getting the proper responses from GPs.

To read other members 'stories' click on their name and - if they've put their written histories - it also means the person doesn't have to repeat often.

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toshaws

Thank you for your reply, will read other members 'stories'.

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

The receptionist mentioned my Free T four level for not been treated at the moment. It is declining very slowly with every blood test. Is this right?

SlowDragon profile image
SlowDragonAdministrator in reply toClydeiknowyou69

As thyroid is destroyed by autoimmune disease yes Ft4 and Ft3 levels will drop

Starting Levothyroxine (Ft4) will improve levels and symptoms

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply toSlowDragon

From the receptionists response I feel she meant my Free T four is not low enough to be treated at the moment. Don't know where she got her medical degree's right enough.

tattybogle profile image
tattybogle in reply toClydeiknowyou69

'sub clinical-hypothyroidism' by definition , means that fT4 is still in the normal range.

for NHS purposes subclinical hypo is "TSH over range but under 10 ,with fT4 still in range"...... and as you have seen from those NHS guideline's .. they can (and do) treat 'subclinical hypo' with Levo if there are antibodoes and symptoms ..... so that receptionist is talking out of her A**

i was treated by NHS with TSH 5.7/6.8 .. my T4 was well with range (well it probably was.. they didn't test my Free T4 in 2003 , they only tested Total T4 which is not so informative)

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply totattybogle

Maybe we should all direct GP's, endos and staff to this site. They would maybe learn more than a thing or two. Oh if only.

tattybogle profile image
tattybogle in reply toClydeiknowyou69

it's easy enough to find, for those who have any curiosity.

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).  

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 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 GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

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.

SlowDragon profile image
SlowDragonAdministrator

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease

SlowDragon profile image
SlowDragonAdministrator

If GP remains unhelpful

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

Low vitamin levels tend to lower TSH

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

tattybogle profile image
tattybogle

don't go in the harbour ... :) You are already over the first hurdle .

with results that are (in their eye's) 'not too bad' , it is fairly common to get a routine response of 'repeat in 3 months' especially if the doctor reviewing the results is not aware of how symptoms are impacting the patient ( and it could well have been any doctor who put 'revew in another 3 months' , not necessarily the one you spoke to previously ) . Some people do not have any symptoms until their results are much worse and so GP's can tend to assume you are not suffering anything more than 'eyebrow failure' if your results aren't earth shatteringly 'bad'

Just make it very clear how much your symptoms are affecting your daily life / working / relationships etc when you get to talk to the Doctor .. and given that you now have crossed the first hurdle of "2 x over range TSH (3months apart) + positive thyroid antibodies +symptoms".. required by NHS before GP's can consider Levo treatment for subclinical hypo .. then hopefully you can persuade them to start it now rather than waiting any longer .

Since they know you have confirmed Autoimmune Thyroid Disease .. they assume it will probably only be a matter of time before they have to medicate you for it anyway.. so you just have to persuade them it's worth trying it now , rather than later.

Easier said than done when everyday feels like walking through treacle , i know, but think positive ..... and take the NHS guidelines with you up your sleeve in case they say no.

What's that saying ? ... "Talk softly ~ and carry a big stick"

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

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

~ a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

~ symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

Clydeiknowyou69 profile image
Clydeiknowyou69 in reply totattybogle

Thank you tattybogle, will just try to keep fighting with the ones who are supposed to know better. Lol. Will stay away from the harbour for now.

tattybogle profile image
tattybogle in reply toClydeiknowyou69

just imagine GP is one of these bikers ....

..right turn, Clyde :)
Clydeiknowyou69 profile image
Clydeiknowyou69 in reply totattybogle

Ha ha love it tattybogle, loved those films.

healthkiwi profile image
healthkiwi

Nothing to add to all this great advice, but sending you my moral support. I actually found myself swearing (stupid #@&€$!! 🤬 ) at your mail - so cross on your behalf when I read your final words. Personally I would today be composing a brief note to the practice manager, not being rude or complaining about [the stupidity /incompetence / intellectual laziness of] any specific GP but pointing out that under NHS guidelines your symptoms, backed up by test results, required a trial of treatment some time ago, not further delay.

Please don't despair, most of us here have had to find the strength to fight for our own health.

Clydeiknowyou69 profile image
Clydeiknowyou69

Thank you so much for your reply. There are so many wonderful people on this site. The support I have received from you all has been stupendous. I will indeed do as you suggest and relay all that has happened in a letter to the practice manager. Again my heartfelt thanks for your caring reply.

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