Endocrinology appointment update: Hi This is a... - Thyroid UK

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Endocrinology appointment update

Otto11 profile image
14 Replies

Hi This is a follow on from my previous posts regarding undermedication. My levels were as below in January

TSH 3.4

B12 401

Ferittin 115

Vit d 81

Folate 6

This is when I was referred to an Endocrinologist who went also off previous blood tests & said i had been undermedicated for some years. This is in my previous posts. He increased my thyroxine from 75mcgs to 100mcgs daily & repeat bloods in July were

TSH 3.9

T4 18

T3 3.2

B12 804 (as I had been given an injection from GP)

Ferittin 87

Vit d 93

Folate 11

The Endocrinologist again increased my Thyroxine again to 125mcgs daily.

He arranged repeat bloods in September but only for Thyroid these results were

TSH 1.1

T4 23

T3 3.4

I didn't get the results until I had my phone appointment so didnt get the chance to prepare any questions & the line was also bad as I was abroad on holiday at the time of the call.

He said all was perfect & discharged me. I'm a bit concerned as my T3 is still quite low & T4 slightly high.

All bloods were done first thing in the morning on an empty stomach.

Can I please ask your opinions on these results. Thanks in advance.

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SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Are you getting B12 injections regularly

High thyroid antibodies in previous post confirms autoimmune thyroid disease also called Hashimoto’s

Have you had coeliac blood test done if not already on strictly gluten free diet

Have you tried dairy free diet

Otto11 profile image
Otto11 in reply to SlowDragon

Hi thanks for your response. Yes bloods done early morning with no Thyroxine the previous night. Not currently taking any vitamins. My B12 injections were stopped at the beginning of lockdown by my GP who refused to re instate them but the Endocrinologist asked him to restart them so this was the first one in over 2 years. Ive been on them every 3 months for 11 years prior to this. My 100mcg Thyroxine are Accord & the 25mcg in Mercury. Same brands so far. The Endocrinologist did say it was purely undermedicated simple Hypothyroidism as I did ask if it was auto immune as I have RA. Not had a coeliac test done or on any diet at all.

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

So going forward you’re getting B12 injections every 2 or 3 months?

Suggest you get FULL thyroid and vitamin testing done including thyroid antibodies

As you have one autoimmune disease, others are more likely

Virtually guaranteed your hypothyroidism is autoimmune

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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

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...

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

Only do private testing early Monday or Tuesday morning.

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

SlowDragon profile image
SlowDragonAdministrator

As you are (finally) getting B12 injections ?…… it’s recommended also to supplement 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 and will help improve B12 levels between injections 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

SlowDragon profile image
SlowDragonAdministrator

come back with new post once you get antibodies results

medichecks.com/products/thy...

Assuming you do have autoimmune thyroid disease

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.

Otto11 profile image
Otto11 in reply to SlowDragon

Hi thanks for your response & all the links. I havn't had the chance to look at them all yet. However just one question. I had antibodies done in February they were Thyroglobulin antibody 131 (0 - 115) & Thyroid Peroxidase antibody <9 (0 - 34). Do these antibodies change? Will they still need to be retested? I am due another blood test in December so should I just ask my GP to add them then? That's if he agrees of course.

Also i've just read from someone else's post that Hypothyroidism can affect your Cholesterol level. Mine is done yearly & had in done in September & it is 7.3. No one has questioned it. I'm now thinking that could be related.

Thanks in advance

Lynda

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

Above range TG antibodies could be due to autoimmune thyroid disease (hashimoto’s) but NHS currently only diagnose autoimmune thyroid disease by high TPO or by high TPO and high TG antibodies. They are unlikely to diagnose on just high TG antibodies

NHS rarely tests thyroid antibodies more than once

pubmed.ncbi.nlm.nih.gov/303...

Conclusions: Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden

many members get full thyroid and vitamin testing done privately once a year. This includes thyroid antibodies

Yes high cholesterol levels are linked to being hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Otto11 profile image
Otto11 in reply to SlowDragon

Hi SlowDragon

Thanks for all your help. Just a quick update. I have managed to get my Thyroid checked again by my GP who also allowed T4 T3 !!! My current results are now

TSH 0.57 (0.27 - 4.2)

T4 22.0 (11.0 - 22.0)

T3 3.7 (3.1-6.8)

Ferritin 130 (11.-307)

Folate 7.1 (2.7 - 17)

Serum Transferrin 1.68 (2.00 -3.6)

B12 832

Vit D not done for some reason but was 93 last time in July

TPO antibodies Neg

TG Antibodies 131 in May

Bloods done first thing etc etc. no supplements for 7 days before. Currently still on 125mcg Thyroxine daily., although this time I have been given a different brand called Wockhardt for the 25mg tablets.

As I previously said I have been discharged from Endocrinologist so all in the hands of my GP's who seem to know or understand very little about Thyroid results. I have had no feedback from them regarding these results so any input would be great. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

Bloods done first thing etc etc. no supplements for 7 days before. Currently still on 125mcg Thyroxine daily., 

Was last dose levothyroxine 24 hours before test

Are you taking a good quality daily vitamin B complex

Assuming last dose levothyroxine was 24 hours before test

Results show very poor conversion rate

FT4: 22 pmol/l (Range 12 - 22) 100.00%

FT3: 3.7 pmol/l (Range 3.1 - 6.8) 16.22%

Most people when adequately treated will have Ft3 at least 60-70% through range

Likely to need addition of small doses of T3 prescribed alongside slightly reduced dose levothyroxine

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

tukadmin@thyroiduk.org

high cholesterol is linked to LOW Ft3

Otto11 profile image
Otto11 in reply to SlowDragon

Thanks this is what I thought but wasn't sure. The Endocrinologist I saw is really a Diabetes Specialist. He did say if I needed to return in the future then that would be fine but obviously that means I will need to be re referred by my GP which definitely isn't going to happen. I will try to discuss with my GP but we are currently waiting 14 weeks just for a call back here. I will do as you suggest regarding Thyroid UK & see how we go from there. Many thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

Roughly where in U.K. are you

NHS endocrinologist referral approx year ….so realistically a private consultation initially

over 60,000 prescriptions for T3 in England in last year

Searchable by sub-ICB location or by GP surgery

openprescribing.net/analyse...

Otto11 profile image
Otto11 in reply to SlowDragon

Hi

Awful statistics just awful. I’m in York not a big teaching hospital. Closest would be Leeds I guess.

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

on the list is at least one private option for consultation via zoom

Will pm you

Otto11 profile image
Otto11

Thank you. I will look at the links shortly. I only have half a Thyroid after partial thyroidectomy 27 years ago. Would that alter anything?

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