Advice on Block & Replace please

[Allie20]

Hi all,

Finally had my Endo appointment yesterday.

A reasonably positive appointment.

She gave me time to speak and ask all the questions I wanted to. This was the best but there nearly an hour.

She looked at all my results and suggested I’ve Been unstable for a long time. No way!

When she got to discussing treatment Initially she asked if I have contact with small children I said yes in work and out of work. I asked why and she said about iodine ablation I think but said it would not be an option. I told her I would not consider it the same as removing it. So B&R it is .

I had more blood done on 14th results as follows

T3 5.0 - [3.1-6.8]

T4 <5 [12-22]

TSH 4.5 [0.27–4]

She has changed me back to carbimazole 20mg daily. I asked why I was put on PTU and she said it was a misunderstanding as they thought I had a reaction to the carbimazole. Started me on Teva levothyroxine 50mgs daily. I forgot to ask if I can take both first thing in the morning as so much info and questions asked 🤷‍♀️. Could anyone share their thoughts on best way? Also info on what to do before blood tests now I’m on B&R

I asked if I have Graves and Hashimotos and she said she just likes to say I have autoimmune conditions. I asked about underlying causes and she said it could be many things but they only treat the symptoms. Bit disappointing really.

Spoke to her about my B12 and she said she will monitor and when I’m below range again I will have loading doses then maintenance injections but have to go through this in order to get the maintenance. Why?

I asked when I would see her again and she said she would email me after my next bloods in 4 weeks time telling me my levels and how much she wants me to increase or decrease my meds. I asked again when will I see you and she said a review in 3 months but that means it may take a year. 🤷‍♀️

she is also referring me to eye specialist for TED

I asked for referral to nutritionist also.

I’m not taking any additional supplements yet. Not suggested by GP or Endo.

Any knowledge and understanding gratefully received 🙏

[RedApple Administrator]

Allie20, For the benefit of all members reading here, please change your post title to expand 'B&R'. Not everyone will know what this means 😊

[Allie20 in reply to RedApple]

Hi RedApple

Sorry I don’t know how to do that 🤔

[RedApple Administrator in reply to Allie20]

You can edit your post by clicking the More dropdown at the bottom of your post, then choose Edit (at the top of the list)

Click on More to edit your post

[SlowDragon Administrator]

Levothyroxine must be taken on empty stomach and and on its own. No other medications or supplements within 2 hours

No iron, magnesium, calcium or vitamin D within 4 hours of levothyroxine

Avoid Teva brand levothyroxine initially, unless lactose intolerant. Teva brand levothyroxine upsets many people

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

On levothyroxine we must have GOOD vitamin levels

Results from previous post

B12 568 [180-1000.0]

Ferritin 23 [10.0-300.0]

Folate 3.3 [>4.0]

Ferritin is deficient

Did Endocrinologist order full iron panel test for anaemia

Are you vegetarian or vegan?

Folate is deficient too

Have you been prescribed folic acid supplement

No vitamin D test

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

What vitamin supplements are you currently taking

Have you had coeliac blood test done

Or are you already on strictly gluten free diet

[Allie20 in reply to SlowDragon]

Hi SlowDragon

Thanks for your response

Endo prescribed Teva and have collected the prescription. Maybe I should try them and see how I get on.

Endo wants my bloods checked again in 4 weeks to keep eye on things. She is asking for FBC, all thyroid, B12, folate & it looks like GTS! But not sure on that one as writing difficult to read.

Tested for coeliac and negative when all vitamins were done D levels were all good. Maybe as I try to go to warm/hot country’s every 3-4 months.

GP sent me a link with veggies & liver to eat no suggestion of taking any vitamins or prescription for folic acid. I do eat lots of green veggies. I’m not vegetarian or vegan.

Maybe I will take the Levi first thing in the morning and the carbimazole at night.

Thankyou for sharing your knowledge and knowledge 🙏

[SlowDragon Administrator in reply to Allie20]

what was vitamin D result

Poor nutrient absorption and low vitamin levels are direct result of thyroid disease. Nothing to do with how good or bad or bad your diet is

So you are going to need to self supplement to improve 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 maintain B12 levels 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 Administrator in reply to Allie20]

low ferritin

Are you pre or post menopause

Has GP done iron panel test?

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 

Medichecks iron panel test 

medichecks.com/products/iro...

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

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

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.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

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

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

[pennyannie]

Het there :

Sorry I missed your last post - sending a hug - you can rant here - you're among fellow ranters who have been there - so no worries and it's best out than in.

What is being done about this very low ferritin level - has your doctor or the endo seen this result as I would have thought a full iron panel and possibly an iron infusion suggested ?

OK then - good you have been heard and being treated with Block and Replace.

Hopefully a measured dose of T4 - Levothyroxine each day will bring up your T4 level and also raise your T3 to a level that you find suits you best.

Do you have any idea how long you need to wait for the referral to the TED clinic?

You could look up the specialist clinics near you - on the TED charity website - and maybe jump in - endocrinologists are often on site as well as you medication may well need titrating once your eyes are also assessed .

Ted charity - tedct.org.uk

[Allie20 in reply to pennyannie]

Hi PennyAnnie

Thanks for your response

Endo wants my bloods checked again in 4 weeks to keep eye on things. She is asking for FBC, all thyroid, B12, folate & it looks like GTS! But not sure on that one as writing difficult to read. Tested for coeliac and negative when all vitamins were done D levels were all good. Maybe as I try to go to warm/hot country’s every 3-4 months. GP sent me a link with veggies & liver to eat no suggestion of taking any vitamins or prescription for folic acid. I do eat lots of green veggies. I’m not vegetarian or vegan.

I idea how long will need to wait to see TED specialist but Endo said she was referring after looking at my eyes and asking if they are always so puffy. Got me all paranoid as can only see with glasses on close up so always look normal to me 😂

Thanks for sharing your knowledge and understanding always appreciated 🙏🤗

[pennyannie in reply to Allie20]

I don't think it a question of what you are eating - when metabolism isn't working exactly right for you - either too fast or too slow - when either hyper or hypo - core strength vitamins and minerals tend to nosedive through the ranges and simply compound your health issues.

I'm not sure you'll get an NHS sick note that covers jetting off for a month in the sun and in all honesty, you may need to consider supplementing a few good quality vitamins and minerals for some considerable time if not the rest of your life.

One's person's puffy eyes are another one's normal - but it's best to be monitored and suggest you look into the Thyroid Eye Disease charity at least to see how far away the nearest clinic is and if there's any chance of a cancellation as you have been referred and now in the system and just waiting on the referral letter.

It could be a Gamma GT / GPT blood test if you are showing raised - ALP - Alkaline Phosphate levels - and believe with some people the AT drugs can have an impact on liver function and it's likely just being run as a precaution and to start a base line for monitoring as you go through this first phase of Graves AI disease.

[Buddy195 Administrator]

Hi Allie20,

Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition)

I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are  important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.

Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area. 

tedct.org.uk

Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.

[Allie20 in reply to Buddy195]

Hi Buddy195

Thankyou for your response

I had my selenium tested and results were:

Serum selenium level Assayed at King's College Hospital.Serum selenium level 1.00 umol/L [0.9 - 1.67] do you think I need to supplement?

I am under hospital for my glucoma and when I told them my eyes are very gritty they gave me Hyloforte to help with this which it has

Good advice about using ibuprofen this will be useful when I’ve been on computer at work all day as it seems to cause a pressure. I can try 2 pillows as well.

I will look at TEDct Too as this maybe very useful for me

I won’t be Googlein as have done that when diagnosed with the graves diagnosis to try and understand what was going on for me.

Thanks for sharing your knowledge and understanding it is very much appreciated 🙏

[Buddy195 Administrator]

As long as you don’t exceed 200ug daily this is fine as a supplement. Excess of 400ug daily can be toxic. Brazil nuts contain 50ug to 90ug depending on soil content, so some people look to do this instead. I chose to supplement 200ug for 6 months so I knew exactly how much I was taking, then reduced to 100ug daily. If my eye symptoms flare, I return to 200ug for a couple of months. I also take lutein and zeazanthin for overall eye health.

[Allie20 in reply to Buddy195]

Hi Buddy195

I do eat 3 Brazil nuts daily. I will look into the other supplements you suggested. Thanks again for sharing your knowledge with me it is all very useful. 🙏

[Buddy195 Administrator in reply to Allie20]

I definitely wouldn’t supplement AND take 3 brazils, as this would probably exceed the recommended daily amount. Just check your brazils are from selenium rich soil. SeasideSusie has a very useful link on brazils, so will copy her in. Alternatively, avoid brazils and take a selenium supplement.

[SeasideSusie Remembering in reply to Allie20]

Allie20

Brazil nuts only contain selenium if grown in selenium rich soil, and even this varies according to area. Eastern Amazon and Central Brazil have the highest amounts:

Selenium content in Brazil Nuts:

honey-guide.com/2012/11/19/...

The packaging needs to say "Grown in selenium rich soil" and preferably the area and possibly the amount of selenium.

Members have kindly given me the following information about Brazil nuts containing a declared amount of selenium available from well known shops/supermarkets here in the UK so if yours doesn't give this information you might want to check out the following (this is an old list so I can't guarantee that all are still available and that the amounts are still the same so do check):

Sainsburys SO organic brazil nuts contain 50mcg selenium per 30g serving of nuts

sainsburys.co.uk/gol-ui/pro...

and their Fairtrade ones have 75mcg selenium per 30g serving

sainsburys.co.uk/gol-ui/pro...

One member has said that M&S Natural Brazil Nuts say "harvested by hand in the Amazon forest and naturally high in selenium". You would have to check the nutritional information on the pack to see if it says exactly how much selenium per xxg of Brazil nuts.

Also, check out Aldi's "The Foodie Market" Brazil nuts, the packaging is said to show selenium content as 79mcg per 30g serving.

Another one is 'My Garden of Eden' Brazil nuts from Home Bargains.. They say "High in Selenium and high in vitamin E" on the front of the packet and the Nutritional Information says "one serving (25g) gives 63ug of Selenium".

More recently I've been made aware of Morrisons Market St brand which states 254mcg per 100g or 101.6mg per recommended 40g portion.

Also Waitrose Duchy Organic Brazil Nuts which they claim contain a rather startling 479mcg selenium in a 25mcg serving although that does seem to be out of proportion when looking at the others and I wonder if it's a mistake and should be 47.9mcg selenium in a 25mcg serving:

waitrose.com/ecom/products/...

If wanting to use a selenium supplement:

Best form of selenium

wearefeel.com/blogs/learn/b...

How much we need daily:

ods.od.nih.gov/factsheets/S...

Too much selenium over time can cause the following:

Garlic breath

Nausea

Diarrhea

Skin rashes

Irritability

Metallic taste in the mouth

Brittle hair or nails

Loss of hair or nails

Discoloured teeth

Nervous system problems