Bloods and Doses

[ecosushirsb]

Hi, Two years on from TT for FTC and I am still trying to find levels and doses that work for me.

Currently I am on 50mcg Levothyroxine and 15mcg Liothyronine but feeling weird, heightened anxiety, flutters, a feeling of internal restlessness and stress.

Endo just rang and he is happy with my ‘normal’ blood results and heart monitoring results. He doesn’t seem very concerned with how I am feeling only to say I could try going back to 75mcg Levo and 10mcg Lio.

As an aside, my cholesterol levels are less favourable but I’m not exercising because I mostly still feel dreadful. I’d be grateful for any thoughts as I have no idea where to go from here 😞 How do I determine whether to persist with 50 Levo and 15 Lio or to switch back to 75 Levo and 10 Lio?

Latest bloods…

T4: 12.3 (10.5-22.7)

T3: 4.4 (4.5-6.5)

TSH: 0.07 (0.35-5.5)

Aside from cholesterol, all other bloods are fine.

Thank you.

[GlowCoach Administrator]

It would appear that your Endo is dosing you by TSH, which when you are taking T3 isn't going to work. Almos tany amount of T3 will lower TSH significantly and to be optimally replaced likely your TSH will be almost 0.

Most people on a combination dose need around 100-125mcgs Levo and between 5-20mcgs T3.

It might be that you could think about looking for a new Endo who wil llisten to your symptoms and not treat you by TSH alone. You can email [e-mail] for a list of T3 friendly Endo's.

Have you also got your key vitamin levels to optimal?

What are your latest results for ferritin, folate, B12 & D3?

What supplements do you take?

Raised cholesterol is often due to inadequate thyroid hormone.

[ecosushirsb in reply to GlowCoach]

Thank you. I thought I’d struck gold getting referral to an NHS endo who prescribed T3 but it is becoming apparent that his support is limited and I’m feeling out on a limb again. His goal seemed to have been to gradually decrease Levo and introduce Liothyronine whilst keeping an eye on bloods but you are right, his concern is focussed on TSH. The hospital take my thyroid bloods and it’s tricky to request bloods from GP as they view me as being dealt with under Endo. So I have various results from various points in time but do need to get them all repeated now.

27th November 2024

Ferritin 73.1 (10-291.0)

B12 358.0 (211-911.0)

February 2024

Vitamin D 73.9 (30-50)

Folate >24.0 (>4.12)

I supplement for Vitamin D and Iron (as Ferritin was at 17 at one point).

I have started back on 75 Levo and 10 Lio.

Any advice on timing doses as I am feeling so overwhelmed with it all. I can barely see the wood for the trees.

[GlowCoach Administrator in reply to ecosushirsb]

What are you taking for B12? Your level is far too low, needs to be 500++ for a serum B12.

Are you vegan or vegetarian? If not:

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

healthunlocked.com/redirect...

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

[ecosushirsb in reply to GlowCoach]

Thank you so much again. This is super helpful. I use the Better You range and the vitamin D with K2 so all good there. I was using their B12 complex and stopped for some reason which I cannot remember. Will start again.

[GlowCoach Administrator in reply to ecosushirsb]

Your folate is actually pretty good. You might just need a separate B12 spray or sublingual but that Better You B complex isnt a high dose. Suggest you try something different. You need 1,000iu minimum B12.

[ecosushirsb in reply to GlowCoach]

I will check out the end list certainly. How easy is it to get transferred though?

[GlowCoach Administrator in reply to ecosushirsb]

You may find that most NHS Endos go by TSH, its unusual to find one that doesn't. You could try educating your current Endo and using NIVCE guidelines for back up.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

Otherwise perhaps start a new post asking for anysuggestions and giving a general area that you live in.

[ecosushirsb in reply to GlowCoach]

My first appointment with him was face to face and every one since has been a super quick (often rushed) phone call to tell me about dose change following blood results. Not much opportunity to talk around that. But I will have a read of the info you have linked to thank you very much and hope there is an opportunity at some point to discuss with him. They are very tricky to reach!

[pennyannie]

Hello Ecosushirsb :

If we look back to 9 months ago you were taking 100 mcg T4 monotherapy and your results ' looked better ' than these - ( think T3 range above should probably read 3.50 - 6.50 ? )

and read you were on 125 mcg T4 but your TSH became suppressed so this dose was reduced back down to 100 mcg.

Without a thyroid the TSH is the least important bio marker - and you should be dosed and monitored on your Free T3 and Free T4 readings - and also when taking any form of T3 this will lower the TSH making the TSH a very unreliable marker of anything.

You have no thyroid in situ so your Hypothalamus - Pituitary - Thyroid internal feedback loop is now open ended as there is no thyroid in situ to complete this circuit loop on which the TSH relies upon as working and your HPT axis now down regulated.

Just for reference a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

with T3 being the active hormone the body runs on and said to be around 4 x more powerful than T4 - which is a pro-hormone which your body needs to convert into T3.

Conversion of T4 into T3 can be compromised by several different factors - one main reason that we do have some control over is maintaining our core strength vitamins and minerals at optimal levels -

Do you have any current readings for your ferritin, folate, B12 and vitamin D please ?

When hypothyroid and with high cholesterol ( if that is what you mean ) - it is a common issue -

and it is recommended that first - treat the thyroid first to optimal T3/T4 levels - and then reassess as cholesterol can ' right itself ' once adequately treated for hypothyroidism with there being no need to take another medication.

[ecosushirsb in reply to pennyannie]

Thank you. Yes, typo on the T3 range sorry.

You’re right my results looked better 9 months ago. I didn’t feel better though. I don’t feel better now either. Just different symptoms. These jitters and anxiety are worse than the fatigue and muscle ache. But the muscle ache has gone so I am happy about that.

I am trying to manage everything to obtain some sort of optimal but it is exhausting and I’m feeling overwhelmed with it all. I know I need to get some more bloods done but it isn’t easy persuading the GP to do them and I can’t afford private test. So these are the latest results I have…

27th November 2024

Ferritin 73.1 (10-291.0)

B12 358.0 (211-911.0)

February 2024

Vitamin D 73.9 (30-50)

Folate >24.0 (>4.12)

I supplement for Vitamin D and Iron (as Ferritin was at 17 at one point). Do you think I should supplement for B12 too?

[pennyannie in reply to ecosushirsb]

I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++) and vitamin D at around 125.

The NHS rarely run a T3 blood test and without this it's very hard to know what's actually going on and how well you can convert the T4 into T3.

Is your T3 on the NHS - as if so, you would think that they should automatically run T3 and T4 together:

It's worth trying your T4 back at 75.mcg to see if that helps at all -

[ecosushirsb in reply to pennyannie]

I really appreciate the support on here and your responding thank you. I realise I need to revisit my supplements. I took my foot off the pedal for a bit. My only issue now is optimal times for taking the Levo and Liothyronine. I have been taking first dose of both together first thing in the morning but am wondering about just taking Levo first and then taking first dose of Liothyronine later.

[pennyannie in reply to ecosushirsb]

I'm sorry but I have no experience of taking synthetic T3/T4 - and I self medicate with Natural Desiccated Thyroid

[ecosushirsb]

Do you have any advice on dosing through the day please? Currently I am taking 75 Levo with 5 Lio first thing then the second dose of 5 Lio in the afternoon. Am wondering about just taking Levo first thing and shifting the two Lio doses to spread it all out a bit in the hope of avoiding these jitters. But then again, am realising that those symptoms may be from other deficiencies like B12 now so may not have any impact and I should just focus on getting back on track with supplements.

[pennyannie in reply to ecosushirsb]

This question is similar to what you just asked me - but without detailing and replying in the other person's reply to - there is no clue who you were talking to - so I'll hit up GlowCoach as this is the only other forum member who has replied to you - though could be wrong.

If you are asking the above as a general question - you need to start new post asking for advice on how to dose T3/T4 : and just explain what you were doing - and what do members suggest.

[GlowCoach Administrator in reply to ecosushirsb]

Simply not having enough of the right thyroid hormones is enough to give you the jitters. Low vitamin levels need working on, especially that low B12 and will really help.

Dose timing is a personal thing so experiment and see what works for you. I have ended up taking my 10mcg T3 first thing and that works well, rather than splitting it, strangely.