Is my dosage too high?!

[Nanajulie]

Hi. I've been Hypo for a few years. I was tested and the very first reading was 46. Was put on 200mg Levothyroxine Then gradually reduced etc. Now I'm on 100mg Levothyroxine, but my latest reading was 0.9. I've asked my GP if I should be reducing the Levothyroxine. Reasons being, my BP is so high at the moment--180 /94. Feeling so dizzy, falling into walls and had to just stay in bed the last few days. I'm on Amlopodine 5mg. My reasoning is, the Hypo is reduced, good, but I'm still. Taking the same dose of Levothyroxine and also taking Amlopodine 5mg. Surely it's time for my Levothyroxine to be lowered?? I've not taken any this morning, Levothyroxine or amlopodine and so far no dizzy turns, feeling good-ish. Any thoughts??

[SlowDragon Administrator]

Definitely continue your levothyroxine at current dose, so taking your missed dose from this morning

More likely under medicated or low vitamin levels, especially low B12

You need to get FULL thyroid and vitamin testing

Just testing TSH is completely inadequate

How long since dose levothyroxine was reduced

Which brand of levothyroxine do you take

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 

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 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

£32 (via NHS private service ) and 10% off 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. 

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...

come back with new post once you get results

[Nanajulie in reply to SlowDragon]

Wow. So much info but great you responded so fast. My brand of Levothyroxine is dependent on what the Pharmacy has in. Crazy. The Levothyroxine I've been taking since 2018. I have Crohns, Fibro, Hypothyroidism, high BP,. They only have ever tested tsh as they say no need to do any others, crazy again. I've been on 100mg for at least 3 yrs, which is why I don't understand them not reducing my dose since 6 months ago I was 2.6 tsh, so asked if they could check again in 3 months. Then it was 3.7, they checked again, (only as I insisted) and the result came back last week as 0.9. I was confused as same time of day bloodtest, no change in ANY meds. Feeling so awful. She is sending me off today for tests. Not thyroid but crp, full blood etc etc.. She says all is fine, that was with me saying about raised BP, only last 4 mornings feeling dreadful, dizzy etc. Really unbalanced dizzy. Safer to stay in bed. Didn't take amlopodine last night or Levothyroxine early hrs today. I feel delicate but not dizzy at all. I do feel I ought to get private bloods done, but on my surgery, Carmarthenshire Health Board, they ignore any private readings and will redo them, but that's not a bad thing. Thanks so much for your huge knowledge of advice and help. I will stay in contact. Thanks

[SlowDragon Administrator in reply to Nanajulie]

TSH changing up and down

So you almost certainly have autoimmune thyroid disease

Crohns will result in low vitamin levels

Fibromyalgia is often just inadequately treated thyroid disease, in particular low Ft3

On levothyroxine we MUST have GOOD vitamin levels

Request GP include testing vitamin D, folate, B12 and full iron panel for anaemia including ferritin

Optimal vitamin levels are

Vitamin D at least over 80nmol

Serum B12 at least over 500

Active B12 at least over 70 (private test only)

Folate and ferritin at least half way through range

If not had thyroid antibodies tested for autoimmune thyroid disease these need testing

Assuming test confirms autoimmune you need coeliac blood test as well

[Nanajulie in reply to SlowDragon]

Thanks so much for replying. So much to think about!

[SlowDragon Administrator in reply to Nanajulie]

You do know presumably, that it’s essential to take levothyroxine on its own, on empty stomach and no other medications or supplements within 2 hours minimum

[SlowDragon Administrator in reply to Nanajulie]

Which brand of levothyroxine are you currently taking

Work out which brand suits you best and request GP specify that brand on your prescription

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

 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 

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. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

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).

 6 months ago I was 2.6 tsh, so asked if they could check again in 3 months. Then it was 3.7, they checked again, (only as I insisted) and the result came back last week as 0.9

Being on too low a dose levothyroxine will have resulted in low vitamin levels and low Ft3

TSH over 2 suggests that you were not on high enough dose

Most people when adequately treated will have TSH around 1 or less and most important results ALWAYS Ft3 followed by Ft4

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH and lowest Ft4

[Nanajulie in reply to SlowDragon]

I've ordered a full thyroid test. Incl Antibodies, b12 etc etc. Seeing my GP tomorrow, after really bad weekend. The bloods the GP asked for results came back satisfactory, which means nowt. That was for Kidney, inflammation, fbc, - - - to be honest wasn't expecting much back from them. Will be interesting to see what the results from the Kit when they come back. Thanks again x

[SlowDragon Administrator in reply to Nanajulie]

only test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test

If taking any vitamin supplements that contain biotin, stop these 5-7 days before test

Day before test drink plenty of water so not dehydrated

Just drink water between waking up and doing the test

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[WavingnotDrowing2023 in reply to Nanajulie]

Hello Nanajulie - I am so glad that you said "the blood result came back satisfactory, which means nowt" - because that's how I feel too. I've been mis-medicated too and what you describe is what I've been facing too. Thanks for posting. I have little faith in the doctors.

[Lalatoot]

Nanajulie high blood pressure and staggering were symptoms I had when my levo dose was too low so I would be wary of reducing or stopping your levo.

Hypo isn't something that gets better. Levo is the hormone that your thyroid would make if it could and it can't. Your body needs enough thyroid hormones to function so you need to keep taking it.

There are 3 elements for a full thyroid test TSH, ft4 and ft3. To really know what is going on you need to have results for all of those. When I was on 100mcg of levo my TSH was 0.19 but I was still undermedicated and needed a higher dose. I only discovered this when I found out my ft4 and ft3 results and discovered that one was lowish and the other was really low.

It is also worth looking at your levels for B12, vit D, folate and ferritin as low levels of these can also cause symptoms.

[Nanajulie in reply to Lalatoot]

Thanks so much for replying. So much to think about!

[WavingnotDrowing2023 in reply to Nanajulie]

Ask if you can be tested for a Vit D defficiancy. The discovery that I needed Vit D, did help. Wishing you all the best for the future.

[pennyannie]

Hello Nanajulie and welcome to th forum :

In order to answer your question we do need to see some blood test results for your thyroid function which are the minimum of a TSH, Free T3 and Free T4 reading and range .

Plus if you can get your doctor to run your inflammation, thyroid antibodies and ferritin, folate, B12 and vitamin D we then have as complete a picture as possible to advise on for thyroid function and if you could also mention any other health conditions and medications you are taking, that helps us understand the bigger picture.

Once diagnosed hypothyroid it is a long term chronic health condition so you will be on some form of thyroid hormone replacement for the rest of your life - the question of course is - as asked - is this the right dose as you experiencing new disturbing symptoms.

Have you spoken to your doctor as to what s/he thinks is going on and do you have any current blood test results to share with forum members ?

You can read around all things ' thyroid ' on the Thyroid UK website - thyroiduk.org -

We are a patient to patient forum and we can help you with considered advice once we have some blood test readings.

It's where we all start off - you are not alone - and if your doctor isn't able to help arrange these blood tests there is a page on the Thyroid UK website detailing private companies who can run these tests for you.

Should you choose the full thyroid blood test of some 10/11 results - a venous blood draw is necessary and this is also offered, at an extra charge, and believe between them, Blue Horizon and Medichecks cover the country and can arrange a nurse home visit, at an extra charge, to draw your blood for you.

There are also simple finger prick bloods test for just the TSH/T3/T4 - which you can do for yourself and when you have the results simply start a new post with the results and ranges and you will be talked through what it all means and your next steps back to better health.

I see SDragon has already detailed exactly how to take and do the blood tests - so just follow her steps as detailed and we will explain everything to you in due course.

[Nanajulie in reply to pennyannie]

Thanks so much for replying. So much to think about!

[greygoose]

I echo what the others have said: levo is not a medication that you take to 'cure' something so that you can get better and come off it. It is Thyroid Hormone Replacement. It is the thyroid hormone T4, which your thyroid cannot now make enough of naturally to keep you well. So, as you cannot live without thyroid hormones, you will have to take them for the rest of your life. Thyroids do not recover or get better.

Every single cell in your body needs thyroid hormone to function correctly. When levels are low, it can cause symptoms anywhere and everywhere in your body. High blood pressure is just one of the hundreds of possible symptoms you can have.

Another symptom is low stomach acid, which means that you cannot digest and absorb nutrients correctly. This will lead to low B12. Low B12 very often causes dizziness - I had this myself when my B12 was low. When you get your dizzy spells, does your vision spin virtically or horizontally?

Low nutrients are something you can treat yourself, you don't need your doctor to 'approve' your blood test results or give you permission. You can buy supplements OTC and treat any deficiencies you may have yourself, according to blood test results - we can help you with that - so it really is a very good idea to get them done privately, even if your doctor won't accept the results.

I'm afraid having thyroid problems means that you have to learn as much about your disease as possible and be your own advocate because doctors know very little about it and care even less. But, you're not alone in this because there will always be here to answer any questions you might have.

Welcome to the forum.

[Nanajulie in reply to greygoose]

Thanks so much for replying. So much to think about!

[greygoose in reply to Nanajulie]

You're welcome.

[EchoWS]

I agree with all the feedback on Levothyroxine. Just wanted to check regarding the Amlopodine. Are you on the same dose and brand as always or did you recently start taking it? BP medication has side effects too. Have you been on it for awhile and has it worked in the past for your blood pressure? Might need to talk to Dr about your BP medicine.

[Nanajulie in reply to EchoWS]

Yes, the GP mentioned Beta blockers to help with palpations etc as I do feel that the Amlopodine is making me feel yuck. I went on ramipril, then coughing so started on Amlopodine to see if that was the reason. Been on amlopodine for approx 18 months. Thanks for your reply x