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suspected under active thyroid

Twixandolive profile image
22 Replies

Hello looking for some help reassurance guidance with what to do with my bloods and symptoms please

TSH 2.75 range 2.02 - 4.43 mnol

Free T4 0.907 range 0.93 - 1.71 ng

Free T3 1.38 range 2.02 - 4.43 pg

T4/T3 ratio is 1.52

B12 358 range 196.48 -771

Folate 6.27 range 3-17

Ferritin 41

Transferrin 2.09 range 2.5 - 3.8

Homocysteine 13.11 range 3.7-13.9

Alkaline photosphatse 31

Cholesterol high

Bloods all done fasting and 8 in morning private

I have had many symptoms for many years

Tired fatigue weakness low sex drive moody depression lack of motivation dry scalp psoriasis dry skin vaginal atrophy nails dry ridges length and width scalloped tongue patchy eye brows loosing hair dry course frizzy hair feeling cold hand and feet bloating indigestion constipation rabbit plops Cracked heels low blood pressure dizzy

Got NHS doctors appointment next week

I know they are going to say my TSH is normal and maybe test again

The NHS only test TSH so for years it’s been normal and I get sent away

Feeling very overwhelmed and anxious

a private doctor has prescribed

25mg levothyroine

But that’s T4 and do I also need T3?

Should I go private and see a specialist in Thyriod?

thanks for any help

Xx

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Twixandolive
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22 Replies
SlowDragon profile image
SlowDragonAmbassador

please add ranges on all results

No vitamin D or thyroid antibodies tested

Ferritin is very low

B12 low

Folate low

What vitamin supplements are you taking

Are you vegetarian or vegan

Twixandolive profile image
Twixandolive in reply toSlowDragon

My vit D was 81.47

I have been taking iron 20mg for a year now and vit D 2000iu for a year now

I eat everthing

Typical diet

Porridge milk honey berries

Eggs on gluten free toast

Pork chop jacket potato salad butter

Yogurt

Homemade rock cake gluten free

Lots of tea decafs after 12

So nice and healthy well I try 😬😂

I had TPO and TGAB both normal range haven’t had the lab files yet so haven’t had actual numbers but on the bio dash board they have no attention and in range

ranges do you mean the top and bottom allowed? These are private and the range is different to the NHS but not greatly so

Crystal xx

FallingInReverse profile image
FallingInReverse in reply toTwixandolive

Ranges can be different between all labs, and even small differences at the first or second decimal point can change evaluation.

Tap the edit button in your original post above and add them in so others here on the forum can help.

Twixandolive profile image
Twixandolive

is this the ng pg or mnol?

Or the range high and low for labs?

Will try and edit my post

Joined today so it’s all new 😬😂

greygoose profile image
greygoose

TSH 2.75 range 2.02 - 4.43 mnol

Free T4 0.907 range 0.93 - 1.71 ng

Free T3 1.38 range 2.02 - 4.43 pg

This looks like a classic case of Central hypo. Both your FT4 and FT3 are below range but your TSH is only slightly raised.

Central Hypo is when the problem comes from the hypothalamus (Tertiary Hypo) or the pituitary (Secondary Hypo) rather than the thyroid itself (Primary Hypo). The thyroid is not getting enough stimulus from the TSH to be able to make enough thyroid hormone.

And this is just one of the dangers of relying entirely on the TSH for diagnosis. It completely misses cases like this. And because they never see cases like this, due to only testing the TSH, doctors think that it's very rare! Well, anything can be considered rare if you never test for it! And therefore it's not taught in med school so the majority of GPs - and even endos - have never heard of it!

But you are very much hypo with those low Frees. And the difficulty is going to be in convincing your GP to refer you to an endo who can do further testing.

a private doctor has prescribed25mg levothyroine

But that’s T4 and do I also need T3?

Should I go private and see a specialist in Thyriod?

Your private doctor should get a medal for recognising you need thyroid hormone replacement! But he's being over-cautious and not prescribing enough. At your age, the normal starting dose is 50 mcg - 25 is much too low.

It's too soon to tell if you also need T3. You might be fine on just T4 because it converts to T3. But you would need to get your FT4 up a lot higher to be able to see how well you convert.

Real thyroid specialists are like hens teeth! I wouldn't know where to find one, myself. But if you know of a good one, by all means go and see him! It would be a very good thing to do. But, in the meantime, read up on Central Hypo and learn all you can about it because you're going to come face to face with a lot of ignorance on that subject! Good luck!

Twixandolive profile image
Twixandolive in reply togreygoose

Wow thank you 🤗🤗

I just needed some reassurance and that’s what I needed. I think thyroid can cause anxiety and I can say I have had a few very anxious nights since my bloods came back, with relief maybe I have cracked it and I might get better and then the idea I have an under active thyroid.

I am very worried the nhs doctor is going to tell me I am fine as nhs guide lines ranges are even bigger now for TSH for it to be treated and they don’t test T3 I don’t think and I have never had T4 done only ever TSH which I am always with in range.

I normally get “your a woman your having periods that’s making you tired “

Oh you have two kids that must be why your tired

Now it’s Peri menopause that’s doctors day to be it’s like an umbrella to put so many symptoms and yes they do cross over and yes 45 I am prob peri menopausal

I have been offered anti depressants for my symptoms

I probably have had this for many years and it’s sad I have spent many younger years feeling tired going to bed early feeling like what’s wrong with me every time going to the gp being told I am fine.

I do have a private doctor and yes Levothyroxine given

Very cautiously given I might add

I am taking for one month then bloods again to see if it’s changing the levels and if symptoms get better or worse

Out of interest as I have been researching

I didn’t produce milk at all with both pregnancy’s Zero happened my breasts just stayed normal as they always are

My female hormones also have been all over the place for many years

I also had meningitis as a child

Maybe links with purtuity gland?

Thanks for help

Xx crystal

greygoose profile image
greygoose in reply toTwixandolive

Anxiety can be a hypo symptom, yes.

Pretty sure the NHS doctor is going to tell you your 'fine' if all he's looking at is the TSH. But as I explained, he's probably never even heard of Central Hypo. And I don't suppose he fully understands what the TSH is nor how it works. If he did, he would see how illogical it is to rely uniquely on that and not the thyroid hormones themselves. Which is why you have to have enough knowledge to explain it all to him and answer any questions he might have.

You probably have had it for many years, yes. I became hypo around the age of 8 years old, according to symptoms (my hormone specialist (retired) backed me up on that). But I wasn't diagnosed until I was 55. And despite going to many, many doctors with my symptoms I was never even tested for thyroid, as far as I know. I was just dismissed as lazy, over-eating and a bit dim!

Even though I was hypo - suspected Hashi's, so levels must have varied - I did manage to have three children. Breast feeding was a nightmare, very painful for not much gain, and I could only keep it up for a month maximum before the milk ran out!

I know little about meningitis except that it's inflammation of the sheath that covers the brain. So, if that was inflamed it could have put undue pressure on the pituitary and caused disfunction. But I don't know anything about it for certain. I could be wrong. But it does seem likely.

SlowDragon profile image
SlowDragonAmbassador

Free T4 (fT4) .907 pmol/L (.93 - 1.71)

Ft4 below range at  -2.9%

Free T3 (fT3) 1.38 pmol/L (2.02 - 4.43) 

Ft3 below range at -26.6%

So both Ft4 and Ft3 are below range

Ft3 well below range

But TSH is not rising correctly in response

This suggests central hypothyroidism

bestpractice.bmj.com/topics...

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

endocrinologyadvisor.com/ho...

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

ec.bioscientifica.com/view/...

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

You are on gluten free diet

Are you diagnosed as coeliac or gluten intolerant?

B12 and folate need improvement

Twixandolive profile image
Twixandolive in reply toSlowDragon

So the gp , after going with bloating Indigestion constipation then diarrhoea

Feeling tired fatigue poor sleep itchy ect

Said to keep food diary and to cut out gluten and wheat

I did this and I do pop less Rennie’s but didn’t really solve my problems

I have had fully allergies screened not Celiac

I am allergic to tree pollen that’s it

Yes B12 and folate I will get just waiting for Gp to tell me what strengths and type to buy

central hypothyroidism is this something The NHS will know about?

Xx crystal

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

I have had fully allergies screened not Celiac

No point testing now you are already on gluten free diet

Get ultrasound scan of thyroid next

20% of Hashimoto's patients never have raised antibodies

TPO antibodies likely lower on gluten free diet too

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Twixandolive profile image
Twixandolive in reply toSlowDragon

I did have a celiac test before quiet a few years ago but it was all fine

I will add the lab numbers for TPO and TGAB still haven’t had them through

I think I will be self funding and ultrasound of thyroid

Would MRI of piturity gland and thyroid?

Or just the ultrasound needed

Thanks so much for your help

Crystal 🤗

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

ultrasound initially

Approx £100

thyroiduk.org/testing/other...

MRI of pituitary much more expensive and not necessary at this stage

Has anyone tested oestrogen, progesterone or testosterone levels

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

B12 358 range 196.48 -771

Folate 6.27 range 3-17

Yes B12 and folate I will get just waiting for Gp to tell me what strengths and type to buy

GP will say these are “fine” as they are within range

But they need self supplementing to improve to optimal levels

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.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

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

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

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

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...

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 and may need 2 per day and/or may need separate methyl folate couple times a week

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 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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 if last test result serum B12 was below 500 or active B12 (private test) under 70

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

central hypothyroidism is this something The NHS will know about?

Well they “should “

But they think it so rare it’s not worth considering

as they typically only test TSH, central hypothyroidism is rarely diagnosed because it’s obviously essential to test Ft4 and Ft3 as well

See yellow box on this flow chart marked secondary hypothyroidism

gps.northcentrallondonccg.n...

Many Hashimoto’s patients have some degree of central hypothyroidism in that TSH is not very responsive to low Ft4 and/or low Ft3

thyroid-warrior profile image
thyroid-warrior in reply toSlowDragon

Thanks for sharing this useful resource, SlowDragon . I think this should be disseminated and used by all GPs in the country!

SlowDragon profile image
SlowDragonAmbassador

Ferritin 41

Transferrin 2.09 range 2.5 - 3.8

I have been taking iron 20mg for a year now

Suggest you get FULL iron panel test including ferritin

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

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

monitormyhealth.org.uk/anae...

10% off code here

thyroiduk.org/testing/priva...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, 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.

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

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

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

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Homocysteine 13.11 range 3.7-13.9

High homocysteine linked to low folate and/or B12

healthline.com/health/homoc...

Twixandolive profile image
Twixandolive in reply toSlowDragon

Wow thanks for all the information will have a good read

This all can about from a routine eye test in Jan and the optician saying I had curly veins and to get my blood pressure checked at doctors , which was low after a weeks blood pressure diary

So not highly blood pressure so my gp did some tests Bloods

And I had some Xmas money and decided to pay for a full health check private bloods

And this all came up in the private blood tests

so now going back next week to nhs doctors with all my bloods and still wondering if this is all linked to my curly eye veins 🫣🤯😂

But feel much more confident Levothyroxine is the right thing for me🤞🏻

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

Optician can often see if you have high cholesterol in eyes

aao.org/eye-health/tips-pre....

High cholesterol

A yellow or blue ring around the cornea may be a sign of high cholesterol, especially in a person younger than age 40. Deposits in the blood vessels of the retina can also indicate elevated cholesterol.

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.

SlowDragon profile image
SlowDragonAmbassador

psoriasis is autoimmune

having one autoimmune disease makes others more likely

a private doctor has prescribed

25mg levothyroine

This is only half the standard STARTER dose

Which brand of levothyroxine have you started on

Bloods should be retested in 6-8 weeks

Retest 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)

Typically dose Levo is increased SLOWLY upwards in 25mcg steps until on full replacement dose

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

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

TSH should always be below 2 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).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

Twixandolive profile image
Twixandolive in reply toSlowDragon

The hormones

I have labs for so far

Corsitol 530 morning 145.4-619.4 this was high end

Free androgen index 0.58 % this is low

Testosterone <0.69 0-1.42

LH 8.49

Shbg 117 27.10-128.00

Ostradiol 1298.64 this was high end estogen

Serum iron 24.5 range 9.0-30.4

All my testes results were fasted taken at 8:15 in morning only water

Will add to this as I have more

These call go up and down a lot

Twixandolive profile image
Twixandolive in reply toSlowDragon

I haven’t got my prescription yet it’s a private one

I am hoping the nhs might treat me but if they don’t at least I can be treated privately

Only got it yesterday need to go to pharmacy

It’s does not say which brand

Can I ask for something in particular are there lots of brands?

SlowDragon profile image
SlowDragonAmbassador in reply toTwixandolive

avoid Teva brand as this upsets many people

Options for 25mcg are

Vencamil - lactose and mannitol free

Wockhardt

Mercury Pharma

Crescent (rare to find)

Many people find Levothyroxine brands are not interchangeable.

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 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get prescription written for Vencamil

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free, but 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 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

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...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you decide to normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

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