Picking your brains/ next step for improved health.

[Skiski]

Hi, I'm on 125 levothyroxine. I've got three children and went into the menopause after the third was born - almost three years ago. I'm on evorel conti patches. For the past two years I've had daily migraines on waking, have found it hard to be focused and to do what I need to do, have had a very sore foot and dry hands to the point of bleeding and a shake. Then I got covid followed by shingles and all the symptoms got worse. I completely cut out gluten and the headaches halved. I am now taking the levothyroxine at night on an empty tummy with vitamin c and the headaches have gone, my foot is OK now and my hands although still dry are no longer bleeding. However I'm now very short on energy, irritable and scramble brained from 4pm on which is exactly when I need energy to be the best parent I can be! Bloods were taken at 10am. My gp practice can only do morning bloods and blood test came back normal. Any suggestions for next steps to improve things would be very welcome.

[SlowDragon Administrator]

Welcome to the forum

What has GP actually tested ……usually only TSH or TSH and Ft4

Do you always get same brand levothyroxine

Was test done early morning and last dose levothyroxine 24 hours before test?

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

do you have the actual results and ranges?

Frequently dose levothyroxine needs increasing when HRT is added

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

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 tested 

Also both TPO and TG thyroid antibodies tested at least once for autoimmune thyroid disease (hashimoto’s)

Presumably you have Hashimoto’s

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

Especially as you’re gluten intolerant

We need OPTIMAL vitamin levels for good conversion of Ft4 to Ft3

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 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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

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

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

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

[Skiski in reply to SlowDragon]

They have changed the brand of levothyroxine and I don't think the current brand suits me so well.

[Skiski in reply to Skiski]

Thank you very much for taking the time to help me with all this information and advice. I'm going to get gp tests and then look at the other testing .

[humanbean]

However I'm now very short on energy, irritable and scramble brained from 4pm on which is exactly when I need energy to be the best parent I can be!

Irritability, lack of energy, and brain fog are some of the main symptoms I get with iron deficiency and low levels of B12/folate.

Low levels of nutrients are extremely common in people with thyroid disease. It would be worth getting the following tested :

An iron panel

Vitamin B12

Folate

Vitamin D

I buy this iron panel when Medichecks have sales on. You need to be registered via email with Medichecks to get sent info on their sales - registration is free :

medichecks.com/products/iro...

When sales aren't on I use the 10% discount code from this link :

thyroiduk.org/help-and-supp...

...

Your sore feet could have been caused by plantar fasciitis - this is also a fairly common symptom of hypothyroidism :

en.wikipedia.org/wiki/Plant...

This problem normally goes away without special treatment as soon as people start taking thyroid hormones and get improved levels of T3.

[Skiski in reply to humanbean]

That is interesting. I'll get that tested.

[Jaydee1507 Administrator]

Do you have the NHS app? Get it if not and ask GP receptionist for access to blood results. Also ask GP receptionist for printed copy of the results, come back here and post them. When GP says results are 'normal' there is a lot that can sometimes be done within 'normal'.

Getting key vitamins tested is also important, as hypo people we have low stomach acid and so cannot absorb vitamins properly. With low vit levels we cannot use our thyroid hormone well.

Ask GP to do bloods for ferritin, folate, B12 & D3.

[RedApple Administrator in reply to Jaydee1507]

Jaydee1507 'Do you have the NHS app? Get it if not and ask GP receptionist for access to blood results. '

Good to be aware that not all four nations of the UK have this app!

England, yes. Scotland and Wales I don't think so yet. N.Ireland probably not either.

[Skiski in reply to Jaydee1507]

I know I've got low stomach acid because a nutritionist I used to go to found that out.

[Skiski]

Don't think we have this app yet but I'll check

[Jaydee1507 Administrator in reply to Skiski]

I forgot to put the rider on about not available everywhere. If not then getting printed copies from receptionist is best you can do.

[SlowDragon Administrator]

Find out what’s been tested

See if you can get vitamins tested via GP

What brand levothyroxine are you now taking

Many people find Levothyroxine brands are not interchangeable.

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

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, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

Northstar levothyroxine being phased out this month 

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

Teva 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 

Teva is the only brand that makes 75mcg tablet. 

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

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

Aristo (currently 100mcg only) is lactose free and mannitol free. 

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 

 

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.

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).