Reading - is this normal?

[Henson1980]

Hi

I have just paid for a private thyroid test - results attached. The readings are showing within normal range yet I still feel extremely tired and achy. My vitamin levels were all checked a month ago and were fine. I currently take 100mg of Levothyroxine, wondering if I should try upping to 125mg every other day? When I have tried this in the past I have had side effects of palpitations etc which made me reduce back to 100mg. Shoud I just stick with it?

[jimh111]

I see this quite a lot, patients who have low normal fT3 AND low normal fT4 with a normal TSH. Usually when either fT3 or fT4 approaches its lower limit TSH goes high. So, you pituitary is not secreting as much TSH as it should. This isn't quite central hypothyroidism as TSH would be very low.There is some evidence that TSH stimulates T4 to T3 conversion. With a TSH lower than it should be you will have lower T3 levels in tissues that rely on local conversion. I think you need some T3 to resolve your symptoms. Too much thyroid hormone can cause cardiac problems but they can also be caused by too little T3.

[Henson1980 in reply to jimh111]

Thank you for such an informative response...how would i obtain T3? My doctor has never suggested this, im pretty sure they don't prescribe T3? From looking at my results do you think this is why i am feeling so tired and achy?

[Sparklingsunshine in reply to Henson1980]

You would need to get a referral to an NHS Endo who would need to approve T3 prescribing or go private. GP's can't initiate T3 prescribing, as its expensive and can be complex. .Have you considered trying 112.5mcg of Levo daily, so either alternating 100/ 125mcg every day or cutting your tablet to get the required amount. With low frees and a high TSH you are undermedicated. A small increase might be more tolerable than a jump of 25mcg. Some people are very sensitive to Levo and need to make small changes.

And apologies if I'm stating the obvious but you are taking your Levo on an empty stomach well away from food, drink and other meds and vitamins as these will all interfere with absorbtion.

[Henson1980 in reply to Sparklingsunshine]

Thank you. Yes I take first thing in the morning an hour before food and drink I think im just going to try alternating and see how that goes, hopefully i will feel less tired

[jimh111 in reply to Henson1980]

It's very difficult to get liothyronine prescribed. You need to be referred to an endocrinologist who will give you a trial. ThyroidUK have a list of endocrinologists so I suggest you get hold of it. I also recommend everyone joins Thyroid UK!

[Henson1980 in reply to jimh111]

Thank you much appreciated.

[pennyannie]

Hello Henson :

In short - No !!

Well looking back - you have Hashimoto's - a thyroid Auto Immune Disease which can cause erratic own thyroid hormone production and which will systematically continue to attack and destroy your thyroid with you ultimately, requiring both T3 and T4 thyroid hormone replacement.

Once on thyroid hormone replacement it is essential to be dosed on both the Free T3 and Free T4 - though fully understand in primary care you will likely only be dosed and monitored on a TSH - which does not help you - but saves the NHS around £2.00 :

Once on thyroid hormone replacement the TSH should be kept below 2 - and since you have a thyroid AI disease you will likely feel best with your TSH down towards the bottom of the TSH range.

We generally feel best with a T4 up in the top quadrant of the range at around 80% -

with a T3 tracking slightly behind around 60/70% through its range - and where your levels were a couple of years ago !!

A year ago your results were similar to these - though going back further your conversion looked much better - so guessing your thyroid is now further damaged and all but disabled.

Your T4 is now at just 5% with your T3 at just 5% - and you need to be referred to an endocrinologist who can bring both your T3 and T4 back into the ranges and restore your thyroid hormonal balance :

Please share your ferritin, folate, B12 and vitamin D readings/ranges as ' fine ' is an opinion not a fact - and these 4 corner stones of well being - need to be maintained at optimal levels for any thyroid hormone replacement to work and be utilised well.

Have you been checked for celiac disease in the past and for leaky gut -

a common issue with people with Hashimoto's AI disease - thyroidpharmacist.com

Thyroid UK - the charity who supports this forum - hold a list of patient to patient recommended thyroid specialists and endo's - maybe email admin @thyroiduk.org for this in preparation of your next best step back to better health.

[Henson1980 in reply to pennyannie]

Oh gosh, what a very informative reply thank you. I started on HRT around 18 months, I wonder if the oestrogen replacement has affected my thyroid levels? Honestly its mind blowing at times, i think i have got it right then it goes down hill again! I think im going to look into a referral to the endo and get this sorted once and for all, I will email the team for the list. Thank you so much for your reply

[pennyannie in reply to Henson1980]

OK - I read about your high oestrogen levels but do not know anything about that -

Except that some people find they need to increase their thyroid hormone replacement dose after starting HRT - but either way - with Hashimoto's ultimately you 'll probably end up needing both T3 and T4 hormone replacement.

If you go into openprescribing.net and then analyse you can see by surgery and ICB / CCG area how supportive your area is in this post code lottery we face -

enter Liothyronine as the drug - or if looking for the fullest of all thyroid hormone replacements Natural Desiccated Thyroid - enter Armour as the drug - though this treatment option on the NHS - is virtually impossible to acquire now :

The patient recommended list from Thyroid uk - is both NHS and Private and whilst we can't openly discuss any medical professional you can ask for Private Messages ( and your paper plane Chat icon alongside your Alert icon ) lights up if anybody knows anything about a particular individual.

Obviously if you can afford to go privately all treatment options are available - though you will still need optimal vitamins and minerals for any thyroid hormone replacement to work well for you and we can advise as you go through this process and to whom is best placed to get you back on track.

[Henson1980 in reply to pennyannie]

Thank you. So does this mean that even if I increase my levo I would still need treating with T3 and T4?

[pennyannie in reply to Henson1980]

I believe so as it also looks like you are not absorbing well the T4 as one would expect a higher reading than 5% through the range when taking 100 mcg T4 every day.

Do you take the T4 on an empty stomach and wait around an hour before eating or drinking anything ?

T4 - is a pro-hormone and needs to be converted in the body into T3 which is the active hormone that runs all your bodily functions from your physical, through to your mental, emotion. psychological and spiritual well being, your inner central heating system and your metabolism.

For optimal conversion of T4 into T3 we also need to maintain optimal levels of feritin, folate, B12 and vitamin D :

A full 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 known to be around 4 times more powerful than T4 and as I see it - ( I'm post RAI thyroid ablation for Graves Disease 2005 )

a little T3 is needed in order to kick start one's metabolism and simply to replace that little bit of T3 lost when the thyroid is either lost or totally disabled due to an AI disease.

[Henson1980 in reply to pennyannie]

I take Vitamin B Complex, Selenium, Omega 3, Vit D and Magnesium daily and have done for a while now. You know so much about all of this, I wish I was as clued up but it just really confuses me. Im going to go to a private Endo and see if I can get T3

[pennyannie in reply to Henson1980]

If you think you know who to go to - you can start a new post with the person's name asking for feedback by Private Messages - and then at least hopefully get some feedback as to if you are wasting your money or not :

We need optimal ferritin, folate, B12 and vitamin D before any thyroid hormone replacement will work well - so you may need to do some work of your own first before you see much benefit .

Just keep reading on this forum - though I bought a couple of books as my brain fog needed me to underline everything and then write it all out as if it were lines and like being in detention at school as I thought I was dealing with the onset of dementia.