Should I try and get referred to add t3? - Thyroid UK

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Should I try and get referred to add t3?

sarah_p profile image
19 Replies

Hi. I have underactive thyroid resulting from RAI 15 years ago. I have never really felt myself since but I’ve always just put it down to getting older and being a tired Mum. Recently my depression, brain fog and fatigue have gotten worse and I’ve also started to get terrible bloating constantly (with no other GI symptoms like pain/gas), so much that I look 20 weeks pregnant all the time. I am on 200mg of Levo a day and 50 sertraline but I could literally cry at any moment over nothing and I’m generally just miserable. I’ve started to wonder if my thyroid could be responsible. My results have often shown quite a low t3 level and I’m wondering if adding t3 would make me feel any better. These are my last results

This week (on 200mg levo)

TSH 0.19 (0.3-4.2)

T4 23.1 (12-22)

T3 4.9 (4.0-6.8

My gp has told me to reduce to 100mg levo two days per week which means about 170 on average a week. She also suggested I increase sertraline

Last results in July 2020 (think I was on 175mg)

T4 16.4 (12-22)

T3 4.2 (4-6.8

I’m not under an endo but wondering about asking my gp to refer me to an endo ive been told locally is willing to consider t3 treatment. Do you think I could make a case for it?

My b12 was high (I take supplements as I’m vegetarian)

Folate >20 (3.89-26.😎

Ferritin 53 (13-200)

FSH 7.3

Thanks for reading xxx

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sarah_p profile image
sarah_p
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19 Replies
Anthea55 profile image
Anthea55

started to get terrible bloating constantly (with no other GI symptoms like pain/gas), so much that I look 20 weeks pregnant all the timeThat reminded me of something I read recently about ovarian cancer. Hopefully I'm wrong but it mustn't be ignored. It would be worth talking to your doctor to rule out this option or have further tests.

NHS page 'Beat the bloat'.

nhs.uk/live-well/eat-well/r...

then at the end of that page it says

'If your bloating symptoms persist, consult your GP to rule out a more serious condition. Bloating and a persistent feeling of fullness are key symptoms of ovarian cancer.'

Link to NHS page

nhs.uk/conditions/ovarian-c...

sarah_p profile image
sarah_p in reply to Anthea55

Thanks for the reply, I have had a scan and blood test so ovarian cancer ruled out. All it found was a simple cyst but my go said it’s quite common and nothing to worry about. The bloating is really getting me down, I just don’t know where to start to try and identify what causes it xx

Anthea55 profile image
Anthea55 in reply to sarah_p

That's a relief for you. It's so important to catch ovarian cancer early.

Weight can go on very easily if you are undermedicated for underactive thyroid, and then it's very difficult to take off again.

I know nothing about sertraline, but I see that it's an antidepressant. It is known that depression is one of the symptoms of hypothyroidism. There are many symptoms, here is the list from the ThyroidUK website.

thyroiduk.org/if-you-are-un...

shaws profile image
shawsAdministrator

As you have had RAI - so no thyroid gland at all - I can understand how unwell you feel. You should ask to be referred to an Endocrinologist who has been recommended to you.

The very least that doctors should prescribe is either NDTs (natural dessicated thyroid hormones) which is the original thyroid hormone replacement from 1892 and saved lives from then on. It is made from animals' thyroid glands. Or a T3/T4 combination or T3 alone.

Unfortunately NDT has been withdrawn in the UK due to stupid reasons. It is well seen that those who are 'supposed to be experts' aren't experts at all if they cannot resolve the patients symptoms and have withdrawn T3 and NDTs

NDTs, and T3s. These people 'supposed to be' experts but seem not to have any knowledge that our older and trained doctors who didn't have blood tests to consider and took notice of patients' symptoms and patients recovered their health with NDTs. Their aim was to relieve all symptoms.

I have my thyroid gland and diagnosed myself after being told by a doctor I had nothing wrong with me. By that time TSH was 100.

You can click on my name if you want to read a bit of my journey.

Millions seem to do fine on levothyroxine but the medical professionals cannot insist that every single person who's hypothyroid can do so without the proper medication that suits their bodies, i.e. they feel well with no symptoms.

I was very unwell on levothyroxine.

Many hypothyroid patients complain of 'unexplained' weight gain after being diagnosed but are talked to as if they were children and accused of eating the wrong foods, when it is actually their metabolism that has reduced due to ineffective thyroid hormone prescribed to them.

sarah_p profile image
sarah_p in reply to shaws

Thanks for your reply, it’s so rubbish that medics don’t look at patients symptoms anymore! My drs response was to increase my anti depressants (they seem happy to prescribe them) xx

shaws profile image
shawsAdministrator in reply to sarah_p

I am not medically qualified but I think the least your doctor should have checked is both FT4 and FT3.

Doctors usually prescribe Anti-d's due to patients symptoms instead of checking patients' Free T4 and Free T3. They might also prescribe pain relief. I think it is very important they check both Frees.

endocrineweb.com/thyroid-wh...

shaws profile image
shawsAdministrator in reply to sarah_p

This link might be helpful:-

verywellhealth.com/interpre...

We've to read and learn unfortunately, as if we are qualifying to be Endos

🤣

Hookie01 profile image
Hookie01

Ho Sarah, I also had RAI nearly 3 years ago. For some reason I'm really struggling at the moment. Depressed, tired, crying, seem to hurt all the time. I just don't know what is going on. What brand are you taking? Levo makes me bloat, I'm currently on a mission to get the new lactose free one which is not easy where I live.

sarah_p profile image
sarah_p in reply to Hookie01

Sorry to hear you are also struggling. I think I take Teva. What’s the lactose free one called?

Hookie01 profile image
Hookie01 in reply to sarah_p

Well Teva is lactose free but I can't take that one because it makes me really depressed and was causing me pain. The new one is called Aristo and it hasn't got mannitol in it like teva has which is what we think people are having bad side effects to. I have seen on here that people have issues with teva causing bloating. Accord was the worst one for me for bloating, im currently on mercury pharma, I still get the bloating but no way as bad.

sarah_p profile image
sarah_p in reply to Hookie01

Thank you. The people on here are so knowledgeable. I’ll see if I can try mercury pharma first to see if that helps. It’s so hard to pin point what it is but I honestly look 20/30 weeks pregnant pretty much all the time, it’s so hard 😞 as I’m generally quite slim and used to have quite a flat belly.

Hookie01 profile image
Hookie01 in reply to sarah_p

It is a minefield! I put up with painful bloating for a year and a half before I tried mercury pharma. I had scans etc as it was so bad. Always follow your instinct. Dairy made it worse so stopped eating anything with lactose which was only really cheese as I don't like milk etc. I started morningside T3 and the bloat again was awful, couldn't stay on it so want to try lactose free to see if it makes a difference. It started almost like overnight which was when I came off teva. Shame I can't tolerate it as its so much easier to get. Good luck, hope you find your relief soon.

R2d2c3po profile image
R2d2c3po

Hi Sarah, I also had RAI and I was just on levothyroxine initially. A new gp then reduced my dose as my TSH low. I became very bloated and put on weight very quickly which I put down to fluid retention as I read this can be a problem when under medicated. I then got full bloods done privately upped the thyroxine but my T3 was still too low, my GP agreed to write private prescription for T3 and now I feel much better bloating gone. I would definitely get referred to Endo particularly if you know they are sympathetic to trying T3. Good luck.

sarah_p profile image
sarah_p in reply to R2d2c3po

That’s really interesting thank you!

Stongwave profile image
Stongwave

Take your T3, you won't regret it.

sarah_p profile image
sarah_p in reply to Stongwave

Thank you

pennyannie profile image
pennyannie

Hello Sarah :

I too have had RAI thyroid ablation for Graves and deeply regret this treatment, though I wasn't given any option back in 2005, though well on the AT medication, and knew nothing and simply trusted it was in done in my best interests.

The accepted conversion ratio when on T4 - Levothyroxine only is 1 - 3.50 - 4.50 T3 / T4 with most people preferring to come in at around 4 or under :

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting 4.7 so moving out from centre showing reduced conversion of the T4 :

In July last year your conversion was better at around 3.9 so what's been happening ?

T4 is a storage hormone and needs to be converted into T3 and active hormone that the body runs on and is said to be round 4 x more powerful tan T4 with the average person needing to " find /utilise ' around 50 T3 daily just to function.

Conversion can be compromised by low vitammins and minerals, espcially ferritin, folate, B12 and vitamin D and although these core strength vitamins and minerals maybe in the NHS " range ' and you not qualify for a prescription you may well need to supplement these yourself to optimal rather than somewhere in a range too wide to be of any real value.

Also bear in mind any physiological stress - emotional or physical, inflammation, depression, dieting and ageing can also play a part in your body's abilty to effectively utilise the thyroid hormone replacement optimally.

We can't stop the clock but we can do something about some of these issues that are likely reducing your optimal health and well being.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg - and since you have lost your own T3 production it's seems logical to think T3 should be on your prescription for if, and probably when, needed to restore your health.

I've looked and seen you have tried all thyroid hormone replacement options.

What went wrong, which did you prefer, and what would you prefer going forward.

Thyroid uk hold a list of supportive endo's and specialist, NHS and private, maybe email and get the list as there might be someone you are able to travel to relatively easily.

I was refused both T3 and NDT by the NHS in 2018 and went on to self source.

Both worked and my cognitive functions immediately improved and I'm now 3 years into Natural Desiccated Thyroid.

It is imperative that you are dosed and monitored on your T3 and T4 blood test when on T4 - Levothyroxine and not a TSH blood test result which I found had happened to me for over 10 years keeping me undermedicated and more unwell than I needed to be : though understand this is common practise in primary care at the yearly thyroid function blood test.

The TSH is the least reliable gauge of anything especially since you have Graves Disease as we can have Graves antibodies attached to our TSH receptors driving down this measure long after RAI which is known to make treating primary hypothyroidism " challenging " ??

I now maintain and supplement adrenal glandular, and aim for a ferritin of around 100, folate at around 20, B12 active at around 70 + ( serum at around 500+ ) and vitamin D at around 100.

You might like to read up a bit on Graves which is an autoimmune disease and read driven by stress and anxiety : I found the Elaine Moore Graves Disease Foundation website the most well rounded platform of all :

I actually started out trying to read her very first book on Graves - as Elaine also has Graves and went through RAI and finding no help with her continued symptoms decided to research this poorly undestood and badly treated AI disease herself.

I also found another book, also detailed on the Thyroid UK website, who are the charity who support this forum, Your Thyroid and How To Keep It Healthy very useful- it is written by a doctor who has hypthyroidism, Barry Durrant-Peatfield, who writes in an easy to understand manor - and we do need to know what the thyroid does so we can try and compensate accordingly.

sarah_p profile image
sarah_p in reply to pennyannie

Thank you so much for your reply, it is very helpful.

I tried t3 7 years ago but I think I was over medicated as I felt quite unwell, but I didn’t have an endo who was monitoring my bloods well. I tried NDT for a very short while but then I fell pregnant and my gp was adamant I needed to go back onto Levo. I then had my daughter and then my son and here I am again wondering what to do. Back then I also had a saliva adrenal test which showed low DHEA but that was 7 years ago. Thanks for the info on graves, I will look into it xx

pennyannie profile image
pennyannie in reply to sarah_p

I self medicated a T3/T4 combo but felt a bit turbo charged and couldn't get past 6.25 mcg T3 with a slightly reduced T4 dose : I couldn't maintain the supply chain and the replacement T3 I purchased in bulk gave me terrible headaches so I gave them away.

It's interesting because on NDT I seem to only need 1 + 1/2 grains to be ok - and that equates to just 57 T4 + 13.50 T3 :

I find NDT softer on my body than adding T3 - the difference being a bit like wearing stilettos 2 sizes too small all day or slippers - so this could just be " me " but I've chosen the slippers.

If anything I 'm still with a few hypo symptoms but I am vastly improved in my overall health, well being and outlook.

I very much doubt I'd have found this dose when "playing " with the synthetic T3/T4 as I thought I needed to maintain a much higher level of T4.

However I don't know if one can directly compare synthetic hormones to those found in NDT - but at least I think I now have " ball park " T3 andT4 numbers to work from should i find myself back on synthetics.

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