Recent visit to endocrinologist at Barnsley Hos... - Thyroid UK

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Recent visit to endocrinologist at Barnsley Hospital.

Cheekycharlie1981 profile image

So I’ve recently seen a endo and she was pleasant enough but very poor knowledge about Liothyronine. She simply said the full affects on the body are not known and that Levothyroxine is adequate treatment for underactive thyroid conditions.

She said my results have improved and she felt my results are fine. I explained I’m still suffering symptoms due to my thyroid.

So I was on 175 mcg levo and my results were as follows;

Tsh 2,75 (0.38-5.50)

T4 16.8 (10-18.7)

T3 4.8 (3.5-6.5)

The endo increased my levo dose from 175mcg to 200mcg despite me asking for a small dose of t3.

My results after 7 weeks of 200mcg are as follows; ranges same

Tsh 0.95

T4 16

T3 4.4.

So I’m now at a cross roads the endo who new little has offered me t3 on a 3 month trail. She’s told me to down my levo to 175mcg and take 10mcg liothyronine.

Advise please. She’s told me I might become more ill.

I’m already tired, can’t sleep, heart palps, dry skin ete will taking t3 help or stay where I am on levo.

Thank you.

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Cheekycharlie1981
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18 Replies
NWA6 profile image
NWA6

Oh Lordy if you’re being offered T3 take it take it take it!! Lol The only thing you’ll be feeling is giddy with relief!

Your story looks like mine. Every other test result of mine for the last 10yrs was in range and yet I was still symptomatic but every Year I had to up my dose when it fell out of range. I’d feel better for a couple of months and then symptomatic again but still in range so had I wait for further deterioration before offered more Levo. My Dr called me non compliant because SHE could never get me stable 😩

I started T3 about 3/4wks ago and I feel fabulous! First time in my life that i feel ‘normal’ The lethargy was hard going at times, daily activity can feel like wading through mud but it’s only with hindsight that I realise how mentally ill I was. But I guess we all get used to a certain way of life and if we know no different then what have we got to compare it to?

Cheekycharlie1981 profile image
Cheekycharlie1981 in reply toNWA6

How much levo and t3, when are you taking t3?

NWA6 profile image
NWA6 in reply toCheekycharlie1981

I was on 175 x 7 (Dec 2017) after 6mths I had Hyper symtoms but when I reduce I’m a zombie. After 8mths of slowly reducing this is how it was for me

March 2019

175 x 2

150 x 5

Total - 1100mcg Levo

April 2019

150 x 2

125 x 5

Total - 925mcg Levo

And

15mcg T3 daily

I quarter my T3

Early morning - Levo + 5mcg t3 + selenium

Spray Vit D+ K2 - 3000iu

Spray B12 - 1200ug

Spray Turmeric - 1300mg

Middayish - B1 - 100mg

Magnesium Taurate 1500mg

3pmish - 5mcg T3

11pmish - 5mcg T3

I didn’t get a real whoosh when I first started, I noticed my heart in the first few days but I think I was thinking about it. So after 2wks of all ok I scrapped the 3pm dose in favour of taking 10mcg T3 in the morning as it fits better with my eating habits. 3pm dose is a pain in the wotsit when you have to take meds on an empty stomach and also try and leave 4hrs between supplement tablets (oral sprays are fine)

I have a 6yr history of full thyroid tests which show that no matter how much Levo I take I do not convert to the correct ratio of T3 for that dose. Taking T3 has been the best thing in my life, instead of living a half life I’m on my way to a full one. I’ve yet to re introduce exercise (too busy catching up on chores!! Lol) So I’ll be interested to see how this will affect my dose.

As side note I wear an Apple Watch most days. Whilst very ill Dec 2018 - March 2019 (housebound with Hypo symptoms) my heart rate was recorded as low as 36bmp and my HRV was around 19ms. Now I’m recording 66bmp and HRV 66ms.

Both are resting heart rates. As you can see from this my resting heart rate and HRV were just far too low. I’m really pleased to see my HRV come up so high because that’s a great indicator of heart health.

I hope that helps you feel less scared of adding T3. Don’t panic, 10mcg is not a big dose. I really hope to hear from you again, I hope I hear your life has been changed as dramatically as mine 🤗

SlowDragon profile image
SlowDragonAdministrator

Your conversion has got worse with increase in dose, which is common problem

Do you have high thyroid antibodies? Presumably you have had these tested at some point over the years

High thyroid antibodies would confirm cause of hypothyroidism is due to autoimmune thyroid disease

When were vitamin D, folate, ferritin and B12 last tested?

Ideally these should be at good levels BEFORE starting on T3

What supplements do you currently take?

Adding T3 ....starting slowly at 2 x 5mcg as split dose. Retesting bloods in 6-8 weeks

RockyPath profile image
RockyPath

Typically, published studies comparing T3 effectiveness against T4 by substitution are conducted by reducing levothyroxine dose by 50 mcg and adding 12 mcg T3. What your endo is suggesting is quite mild and conservative. If you're good with the pill cutter, you could quarter the 200 tablet and only take 150, and see if you feel any better with those 10 mcg of T3.Typically it takes a month to six weeks for the levothyroxine that you have been taking to be gone completely. Even just reducing it, the full effect will only slowly become clearly evident.

10 mcg is not a lot, but as my brother is wont to say, "It's better than a poke in the eye with a sharp stick."

Good luck, but don't be discouraged if you have excursions of success followed by setbacks.

My full bloods were done months ago and all ok. I take iron, b12, b complex, zinc, magnesium and vit d.

The endo did try and scare me about heart palps getting worse and my sleep also not improving.

She suggested lots of doses, 5,10,20 it was clear she had little experience with t3.

She also tried to warn me that I’d have to get t3 from hospital. Basically all to put me off trying it as she felt my levels are improved.

I feel awful, I feel like half a person in a sleep common that can’t turn off to sleep. I feel like death, not great with a 11 month baby to care for.

My thyroid gland has not been right since pregnancy, to swelled and got a nodule but now has reduced in size.

I’m just nervous to start and get it right my tablets are 20mcg so need to cut them. The endo did not even know they only did 20mcg as told me not to cut.

Thank you for feed back, just scared and not wanting to upset my body more.

Also when’s best to take the t3? I take my levo in morning before anything else.

shaws profile image
shawsAdministrator in reply toCheekycharlie1981

There's no reason why you cannot take both at the same time.

Cheekycharlie1981 profile image
Cheekycharlie1981 in reply toshaws

Thank you the endo I saw said 2 hrs apart.

Cheekycharlie1981 profile image
Cheekycharlie1981 in reply toCheekycharlie1981

So take at the same time. Is the dosage right 10mcg t3 and 175mcg levo as a lot on here say 150 levo and 20mcg 3

shaws profile image
shawsAdministrator in reply toCheekycharlie1981

I've taken both at the same time when on T4/T3. If we took NDTs (natural dessicated thyroid hormones) they contain T4,T3,T2, T1 and calcitonin in one tablet.

It makes life a little bit easier because if you split doses then you have to ensure stomach is completely empty and our whole life from now on is all about taking thyroid hormones and making sure stomach is empty so that there's no interference in the uptake.

Researchers have found that a combination of 4:1 or 3:1 of T4/T3 works well.

Minimouse1 profile image
Minimouse1

Hi cheekycharlie1981 I'm following your thread. I'm also from Barnsley & am being referred to endos. Would like to know how they deal with you!

Cheekycharlie1981 profile image
Cheekycharlie1981 in reply toMinimouse1

Not that helpful really, you’d have to trail what they recommend first and then try for other requests after that. Getting second appointment awful I had to go in despite been told i needed to be seen 8 weeks later. Best of luck.

AUniqueID profile image
AUniqueID

Hi, it’s interesting to get your experience of Barnsley. I was a patient at the endo clinic for several years, first with graves, then given RAI which killed off my thyroid completely and then suffered with hypo.

About 2 years ago I was due a visit and was going to ask for a change in dose as my results and symptoms were similar to your first set of results, I didn’t know when exactly my appointment was (brain fog) but went for the blood test anyway and waited for my appointment letter. The next letter I got was to tell me I was being discharged for missing an appointment. I did contact them to explain but nobody ever got back to me and as such I was left to fend for myself.

I’m amazed they even considered anything other than levothyroxine, maybe their advice has moved on since 2 years ago, or maybe I was just too polite when complaining about symptoms.

So my experience of Barnsley was one that was tinged with disappointment due to the way in which I was discharged . I know missed appointments are a big deal, but I wasn’t even aware I had one (the result of a mix of Asperger’s and brain fog from being hypo really doesn’t make me the best organised at times).

On the plus side, it pushed me to using NDT as I didn’t want to be like some of the stories I read on here of people suffering for 20+ years before finally getting the treatment they need, which has worked and helped get rid of most of the symptoms I was experiencing. I am waiting on a referral to an endocrinologist closer to home so that’s going to be an interesting conversation when I finally get my appointment after 2 years of self medicating, especially as I know using NDT and Levo are like night and day for me personally.

shaws profile image
shawsAdministrator

T3/T4 combination is preferable for many who are hypo and not recovering on levo alone.

Two research papers you can give to your Endocrinologists as I doubt few - if any - read research papers relating to their 'supposed to be' expertise.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Lucky14 profile image
Lucky14

I was reduced from 200 levo to 150 levo and 20mcg T3 added, to be split in two. Personally after a few weeks i stopped splitting and currently take the levo in the morning and the full 20 in the afternoon, and this works great for me.

Cheekycharlie1981 profile image
Cheekycharlie1981 in reply toLucky14

Was this the first dose you was put on? What were your symptoms? The endo I saw felt less t3 was better to start. But she had no idea on dose

Lucky14 profile image
Lucky14

Yes this was the first T3 i was given and i was advised to take 10 in the morning and 10 in the afternoon. Symptoms constipation (which has practically gone) and severe fatigue, which has greatly improved with the introduction of T3. After a few weeks i started just taking the full 20 in the afternoon. And feeling great so far.

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