Underactive thyroid help please : Could someone... - Thyroid UK

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Underactive thyroid help please

WOODY1989 profile image
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Could someone give me their thoughts on these blood test results please. It appears my Vitamin D level is low, calcium level is a bit under and T3 is bang on the bottom end of being in range. The test was taken early in the morning with no food eaten or medication taken beforehand. I have been feeling knackered/washed out for a long while and go through phases where I'm not too bad for a few days then far from OK after. I was diagnosed at a guess around 20 years ago and have felt rough on and off for years i.e. aching joints, lethargic, falling asleep straight after getting home from work, unable to concentrate etc etc. In the past, doctors have said that I was in the normal range which as we all know is not always as it seems. I am getting a call from the doctor next Tuesday regarding the results of the test. Before I had the blood test, I mentioned the possibility that the T3 level was lowish before being 4.2 with a range of 3.8 to 6.0 but he quickly stopped me in my tracks saying that it was a complex issue and to get a blood test done. I accept that I am far from an expert but many people on here are very knowledgeable on the subject, probably more so than my doctor. I would appreciate any help/comments on my results

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WOODY1989 profile image
WOODY1989

More blood results

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WOODY1989

More results

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SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

How much levothyroxine are you currently taking?

These thyroid results show you are very under medicated

You need 25mcg dose increase in levothyroxine

Ft4 is only 34% through range

Ft3 is 0% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

When adequately treated most people will have Ft3 at least 50-60% through range

Ft4 at least 60-70% through range

Ft4 at 34% shows you are very under medicated

Likely low B12, folate, ferritin and vitamin D as DIRECT RESULT

What is your vitamin D result

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Many thanks slowdragon, I couldn't put all the screen shots of the blood tests on here. When I get home this evening I will write them down and send them to youThanks again

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Can’t see any thyroid results

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

What vitamin supplements are you currently taking

Can’t actually see your vitamin D result

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

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

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 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

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 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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Hi SlowdragonI'm home at last

🤣 Bone profile

Serum calcium level 2.16mmol/L (2.2 - 2.6)

TSH level 1.61 mu/L (0.35 - 4.94)

Serum free T4 level 12.2 pmol/L (7.5 - 21.1)

FT3 Serum free triiodothyronine level 3.8 pmol/L (3.8 - 6.0)

Serum ferritin level 300 ug/L (23.0 - 300.0 )

Free Thyroxin Serum free T4 level 12.2 pmol/L ( 7.5 - 21.1 )

Serum foliate level Serum vitamin B12 level 396 ng/L (187.0 - 883.0 )

Serum foliate level 7.2 ug/L ( 2.7 - 15.0 )

Comment:- Vitamin B12 deficiency unlikely

Vitamin D

Serum total 25-hydroxy Vitamin D level 37nmol/L ( 50.0 - 120.0 )

Below low reference limit

Comment:- Vitamin D insufficiency ( 25 OH Vitamin D 30 to <50 nmol/L )

These are the results I received, I currently take 125 mcg of levothyroxin and have taken them early morning for years and the same make. I'm on my feet all day at work and touch wood, never have any time off work due to illness,I do get tired and carry on although at times it is a struggle. Therefore, I am not looking for an excuse to get out of work. I am always on the go and play tennis once or twice a week and league tenpin bowling once a week.

I am 53 years old.

Thank you for your comments so far and in depth analysis. If you need any more info please just ask. I am looking for a bit of ammo for the doctor when she rings me Tuesday regarding my results as I don't want to be fobbed off any more, I've gone on for years feeling really lethargic on and off

Best Regards

Paul

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

TSH level 1.61 mu/L (0.35 - 4.94)

Serum free T4 level 12.2 pmol/L (7.5 - 21.1)

FT3 3.8 pmol/L (3.8 - 6.0)

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Your Ft4 is only 34% through range

Ft3 terrible at 0% through range

Most people when adequately treated will have Ft4 at least 60-70% through range, and Ft3 at least 50% through range

Low Ft4 shows you are under medicated

Request 25mcg dose increase in levothyroxine

Do you always get same brand levothyroxine at each prescription

If yes, which brand

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, 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

NICE guidelines on full replacement dose

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

1.3.6

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.

Also here

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

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

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I am 84kg unfortunately a little too short, not too hefty 🤣

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

84 kilo x 1.6mcg suggests the LIKELY dose levothyroxine you need is 134mcg per day

Dose levothyroxine should only be increased in 25mcg steps

Insist on 25mcg dose increase

Bloods should be retested 6-8 weeks later minimum

You may need small increase after that

But if on correct dose …..you might actually find weight starts to reduce

134mcg per day x 7 days = 938mcg per week

Small increase eg

137.5mcg 4 days week and 125mcg 3 days week = 925mcg per week

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Serum vitamin B12 level 396 ng/L (187.0 - 883.0 )

Serum foliate level 7.2 ug/L ( 2.7 - 15.0 )

These are not low enough for GP to prescribe

But

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 and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

Available online

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...

Low B12 symptoms

b12deficiency.info/signs-an...

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, then 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 sublingual lozenges

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

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

healthunlocked.com/thyroidu...

Don’t start all supplements at once

Only add one…..wait 2 weeks to assess any reactions….good or bad …before adding another

Definitely start with vitamin D

Perhaps B12 next …..then vitamin B complex….then magnesium

Retest Thyroid and vitamin levothyroxine in 8-10 weeks after getting thyroid dose increase to 125mcg

FancyPants54 profile image
FancyPants54 in reply toWOODY1989

Blimey Paul, how do you play tennis twice a week with a FT3 result like that?! You really are pushing it. You need to put less pressure on your body. That's not good for you until you can get your treatment improved and levels. up.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

Thanks for your reply, I've pushed myself for years because I always pit myself against my friend who is the same age as me and never stops, so I always think, if he can do it, I can!! I've always been fairly competitive and that mindset never leaves me. I play tenpin bowling on a Wednesday every week and still consistently beat or at least compete with people nearly half my age. Just to push the boat out, I'm off skiing in March which is why I was desperate to at least get the ball rolling with the doctor last week and this week coming to get some better medication. As you know, it ain't easy to get a phone call from the doctor these days let alone get to see them. To top it all off, our phlebotomist has jacked in and the new one left looking like I'd been beaten up by Steve Backley 🤣🤣

FancyPants54 profile image
FancyPants54 in reply toWOODY1989

Seriously, you are really over-doing it. You need to assess what is important in life and competition isn't it.

I ran a business, a home and big garden, a theatre in my spare time and at least 2 or 3 main house shows (total of 8 weeks work each) a year. I taught hoop dancing once a month and hooped myself every day. I was fit. But I overdid it. I ignored the signs and pushed on. I broke myself and now I've lost 8 years of my life to zero energy and deteriorating health. I wish I'd listened to someone telling me what could happen. When finally diagnosed I never recovered on Levo. which is why it's taken so much of my life. This group is a life-saver. I am now switching from Levo to T3. I have to buy the T3 and I use a private endo for that. I just have terrible conversion. But you don't know that yet. You might well recover on enough Levo. But you need more. Right now I just about manage to keep the business going. I have too because it's my income. Everything else is currently too much for me.

Bear in mind that increasing a dose of any thyroid hormone will probably give you a hard time for at least 2 weeks, sometimes more. So I would not suddenly increase before a skiing holiday. Or perhaps if you manage to get a 25mcg raise a day, break the tablets in half and increase by 12.25 from now until you get back.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

Many thanks for your valuable advice, I always thought life is too short to stand still but after reading what you've put I suppose it could get shorter!! Thanks, I hear you

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Serum calcium level 2.16mmol/L (2.2 - 2.6)

Calcium levels will naturally improve as your vitamin D levels improve

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D

Vitamin D level 37nmol/L ( 50.0 - 120.0 )

GP should prescribe 1600iu everyday for 6 months…..but you may do better to self supplement at higher dose

NHS Guidelines on dose vitamin D required

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

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG 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...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/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 private testing service when supplementing

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. One spray = 1000iu

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

It’s trial and error what dose we need, suggest you start on 3000iu per day and retest in 2-3 months

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Government recommends everyone supplement October to April

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

Web links about taking important cofactors - magnesium and Vit K2-MK7

When supplementing vitamin D we need to consider adding magnesium

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...

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

My levothyroxin is already 125 mcg so once on 150mcg will the vitamin D not increase sufficiently on its own or is supplementing still recommended?? My doctor did say it is a complex issue and from your brilliant answer I can see he's right. How on earth do you know this subject to this depth??

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Ok ….so you might only get dose increase for GP of 150mcg and 125mcg on alternate days initially

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable…which brand

Essential to remember to take it everyday….a weekly pill dispenser helps as easy to see if missed a dose

When do you take levothyroxine ….Waking or bedtime

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...

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

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

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

If you 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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I take the thyroxine as soon as I get up i.e. 7am. Always get the same brand, TEVA and I never miss a dose

WOODY1989 profile image
WOODY1989 in reply toWOODY1989

I had been trying to lose weight as advised as I am pre diabetic. I lost half a stone in about a couple of months but after that it was like pushing a rock uphill!! I made no further headway after eating far fewer calories than I used to and joined the gym

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Pre diabetes and being hypothyroid strongly linked

Not surprising your having trouble with blood sugar levels with such low Ft3

healthunlocked.com/thyroidu...

Exercise lowers Ft3 …..so if under medicated and exercising it can be counterproductive

Teva brand upsets many people

Have you ever had different brand…..or are you lactose intolerant

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I believe I've had the same brand, at least for the past few years

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Many people find Levothyroxine brands are not interchangeable.

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

Teva contains mannitol as a filler, which seems to be possible cause of problems.

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Do you wait at least an hour after taking levothyroxine in morning before eating or drinking anything other than water

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

What the reason for your hypothyroidism

Autoimmune? Thyroidectomy ?

For good conversion of levothyroxine (Ft4) to active hormone (Ft3) we need GOOD vitamin D, folate, ferritin and B12 levels

Poor conversion or being under medicated leads to low Ft3

Low Ft3 tends to result in LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Low vitamin levels tend to lower TSH

If improving low vitamin levels doesn’t improve low Ft3, then you may need T3 prescribed alongside levothyroxine

But first step is to improve low vitamin levels, get dose increase in levothyroxine and always get same brand levothyroxine and ensure you take it everyday

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

It's autoimmune

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Autoimmune hypothyroid…..also called Hashimoto’s diagnosed by high TPO and/or high TG thyroid antibodies

Or did you have autoimmune Graves’ disease first and RAI before becoming hypothyroid

Poor gut function with Hashimoto’s or Graves’ disease 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 a further 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

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

Request GP do coeliac blood test.

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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

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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

GP should have tested for coeliac disease at diagnosis of autoimmune thyroid disease

nice.org.uk/guidance/qs134/...

People at increased risk or with symptoms of coeliac disease

A serological test for coeliac disease should be offered 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

Have you had cholesterol levels tested

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.

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I don't think cholesterol was tested this time, don't know why not but last time it was above range at around 5.8 I believe

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Another indicator that you’re under medicated for thyroid

Cholesterol levels should reduce once correct thyroid levels

Also good idea to get testosterone levels tested

thyroidpharmacist.com/artic...

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I've never been tested for coeliac disease. My mother is 79 and she has had underactive thyroid for I'd guess about 25 years or more so I assume it's hereditary

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Yes Hashimoto’s is extremely genetic

Have you actually tried cutting gluten out …you might be astonished

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

No never cut it out or even down, sounds highly feasible to me. I do feel bloated sometimes and do have a bit of gut trouble for definate

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Thousands upon thousands of members with autoimmune thyroid disease have found that cutting gluten gives significant improvements

I was utterly astonished to discover I was gluten intolerant…more info on my profile

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

You should get coeliac blood test BEFORE trialing strictly gluten free diet

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Will do, I speak to the doctor Tuesday afternoon and look forward to it now!!

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Be ready with short list of requests

Prescription for higher dose levothyroxine

Perhaps as extra 25mcg tablets….easy to cut into 12.5mcg

Be ready with your Ft4 and Ft3 results…GP will almost certainly try to say TSH is “within range” and that you don’t need dose increase

If they refuse to increase dose will need to see thyroid specialist endocrinologist….

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

Request GP to do coeliac blood test

Prescription for vitamin D……..or buy your own vitamin D mouth spray

Perhaps consider trying different brand levothyroxine (not until after your skiing holiday)

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

What ideally should those 3 results be please, FT3, FT4 and TSH

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

High enough to improve all symptoms

Typically that’s Ft4 and Ft3 at least 50-60% through range

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing TSH in healthy population

web.archive.org/web/2004060...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Many thanks

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

I did read several posts on this site regarding the blood tests and did exactly what they said, had the blood test early morning (8.10a.m.), before any food and before taking any medication. 👍

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Hi SlowdragonFurther to our conversation the other day, I have had a call back from the doctor regarding my blood test results. Talk about hard work!!! They put my vitamin D on prescription and are gonna send me 3 tablets to take (1 a month) of 25000iu. The BMC recommend a daily amount of 800 - 1000 per day so 800 multiplied by 31 days gives me the bottom end of what is recommended. Being well low on it to start with obviously as you said needs some sort of initial loading dose but there was no mention of this. Do you think a one hit tablet a month is a good idea anyway because to me, it doesn't sound great. That is all they were gonna do, absolutely no mention of low FT4 and FT3. So I tried to explain what I'd learned etc and she basically asked me what I wanted!!! I got the 25mcg uplift in levothyroxin after quizzing her but you could hear that she had no real expertise on the subject and just wanted to get rid of me because I was tying her up in knots and throwing too many figures at her. So we'll go from there at the moment and see what comes at the next set of results

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Personally I wouldn’t take single high dose tablets vitamin D

I would suggest you buy your own vitamin D

vitamin D mouth spray by Better You .

They do one that includes vitamin K2 mk 7 (helps send increased calcium to your bones to get the stronger)

One spray = 1000iu

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

Vitamin D 37nmol/L ( 50.0 - 120.0 )

GP should have prescribed 1600iu everyday for 6 months

See NHS Guidelines on dose vitamin D required here

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

But likely inadequate dose for anyone with thyroid disease ……suggest you start on 3000iu per day

You may need higher dose

Retest in 2-3 months

Aiming for at least around 80nmol and around 100nmol maybe better

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

GP obviously not going to be helpful or keen to understand the issues

Make sure you get same brand levothyroxine at each prescription

You should get FULL thyroid and vitamin levels retested about 2-3 months time after any dose change or brand change in levothyroxine

Medichecks or Blue Horizon private test

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Only test early Monday or Tuesday morning

Come back with new post once you get results

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Many thanks, will do👍

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Looking at the side effects from the Teva brand, it looks like maybe that could be the large majority of my trouble. I've never considered it before as I believed all the levo's had minimal side effects. My legs have ached for years and I've mostly had Teva brand from what I can remember, at least over the last 3 or 4 years

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Bone and joint pain more likely linked to low vitamin D

Generally only make one change at a time or you can’t tell what’s helping….or not

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Did GP agree to do coeliac blood test

If not get tested via Lloyds pharmacy test BEFORE considering cutting gluten out

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

OK thanks, I'm hoping it's vitamin D issues but it has been ongoing for a very long time as I mentioned. I will get the doctor to test for coeliac disease with next blood test.Paul

FancyPants54 profile image
FancyPants54

Well Woody, having read through your thread this far, I'd say your GP is right, hypothyroidism is a complex subject, but he doesn't have the knowledge to help you. He's trying to fob you off telling you it's complex. He thinks it's complex, ie he doesn't have the knowledge. Most of us on this forum have either had to learn endocrinology for ourselves or rely heavily on the experience of others here to help us get out of this. With that GP you are going to have to do the same.

You need a dose increase. Aim for TSH of 1 or below. But also you need to really work on your Vitamin D levels. That needs loading doses to start off. Don't worry about cholesterol or prediabetes until your FT3 level is at least halfway through the range and preferably higher. Weight will not drop while we are hypothyroid. Ease off the exercise. You are probably making things worse, and don't cut calories or carbs hard. We need decent calories to convert T3 to T4 and cutting carbs can have a seriously detrimental effect on hypothyroid patients. Do you sweat excessively during exercise or just after? If so, that's a clue things are wrong. That happened to me.

I always recommend the book "Your Thyroid and How to Keep it Healthy" by Dr Barry Durrant-Peatfield. A lovely old-fashioned doctor, his book is an excellent primer on thyroid conditions. You can order a paper copy from amazon or a kindle version.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

I did sweat when we first started playing tennis but now I'm slightly fitter, the sweating has eased, certainly I wouldn't say its excessive no

FancyPants54 profile image
FancyPants54 in reply toWOODY1989

If it does get excessive, it's linked to adrenals I think and another red flag. I was fit for what I was doing but my head poured with sweat and I had to have a towel on hand in any exercise I was doing. It was horrid.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

I'm on a Teams based course for pre-diabetes and on the course the lady is saying reduce carbohydrate intake due to the sugars produced. Chocolate was my downfall really but since the pre-diabetes scare, I've cut it out. They also push people towards more exercise as well which is why I joined the gym but I think you are right regarding pushing myself at times. I went a couple of times ove Christmas and went a little dizzy a couple of times. Although I'm not pushing huge weights, I was pushing myself to be fair

FancyPants54 profile image
FancyPants54 in reply toWOODY1989

Diabetes management in the UK is not great. You need complex carbs. Not sugar or fast carbs. So if you get most of the carbs from fruit and veg you will be OK. But you need them. And of course she told you to exercise more. Medics are obsessed with exercise. They have little to no idea about hypothyroidism and what it can do to us and how that can be negatively affected by exercise.

Dizzy is not good. I would say, for now, concentrate on stretches and supple movements such as yoga for your exercise, not weights or cardio. Give your body a chance to recover properly between sessions. One of the hardest things I had to do was tell friends I was unwell. I have been hiding it for years. Once I'd told them (and got zero sympathy) I didn't care what they thought if I said no to something like an exercise class etc. We must look after ourselves, no one else will. Right now your task is to get a dose increase and let it settle for 8 weeks to see how you feel then.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

Thanks for that. It was said last night that Teva brand levothyroxin can be problematic for a lot of people, I'm now round my mums who also has an underactive thyroid and she seems to be given a different brand nearly every time she's given new tablets. Surely this can cause issues?? The current one is Mercury Pharma brand and her next 56 days supply are now here and they're Wockhardt.Have you any views on the different brands please

FancyPants54 profile image
FancyPants54 in reply toWOODY1989

I can't take Teva. I raised a yellow card on it. It caused me to suffer major nose bleeds. I told my pharmacy this and they have marked my records that I only ever want the brands Almus or Mercury for the 100mcg tablets and Wockhart for the 25mcg tablets I need. These brands suit me as much as any Levo does (which isn't very well). And that was also put on my record and as a result I get the same brands every time. Your mum needs to learn about this a little and go and talk to the pharmacy and ask to have her brands put on her record. If they are dispensed at the surgery she needs to ask her GP to put the brand onto her prescription for her. Every time. Top tip, go to a little pharmacy. Not a Boots.

Yes different brands can mess people's levels up because they contain different fillers that can affect absorption.

WOODY1989 profile image
WOODY1989 in reply toFancyPants54

Thank you, I'll advise her to do that

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

How much levothyroxine is your Mum prescribed

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Wockhardt only make 25mcg tablets

Work out which brand suits her best and always get same brand levothyroxine at each prescription

For some patients Teva is by far the best brand

Everyone is different

If necessary give GP the Gov guidelines on this and request all future prescriptions are “brand X “

…..or have added to all future prescriptions …”No Teva”

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

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Hi SlowdragonI'm back again feeling crap!!! I've been on Teva brand levo for a long while now and all of a sudden this time I've been sent 50's in Teva brand and the 100's in Mercury Pharma. This maybe not helping my plight (ive taken them for about 25 days). I ache all over yet again, no energy or enthusiasm for anything.

I took the vitamin D for a while when I last spoke to you and my levo was upped 25 and I eventually felt OK. Had a blood test including vitamin D and it was within the range rather than well under. I expect the vitamin D level must have dropped again. How long to levels normally take to subside to a too low a reading??? Or should I be taking vitamin D all the while

Your thoughts would be much appreciated

Paul

SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

Contact GP surgery request new prescription for the 100mcg and get new prescription dispensed that’s Teva

Request note added to all future prescriptions to only supply Teva in future

You might need to try different pharmacies

Do not accept anything else

How GP needs to write prescription to specify brand of levothyroxine
SlowDragon profile image
SlowDragonAdministrator in reply toWOODY1989

If not been taking vitamin D daily it’s likely too low again

Most autoimmune thyroid patients need to supplement vitamin D everyday

Retest twice year

Aiming for vitamin D at least over 80nmol minimum and between 100-125nmol may be better

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. 

One spray = 1000iu

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

Trial and error what dose you might need…..everyone is different

Suggest you try 3 spays of vitamin D per day every day (3000iu) and retest in 2-3 Months

Very easy test

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

WOODY1989 profile image
WOODY1989 in reply toSlowDragon

Many thanks againI'll sort that asap

Best regards

Paul

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