Adjusting T4/T3 dose: Hi I am newly registered... - Thyroid UK

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Adjusting T4/T3 dose

MartiJ
MartiJ

Hi I am newly registered, could my T4/T3 dose do with an adjustment. I take 100mcg Levo and 10mcg T3, symptoms mainly dry eyes, hard stool, tiredness, feeling cold. Diagnosed hypothyroid 2011, given T3 by endo in August 2017. Thanks :)

JAN 2018 (100mcg Levo and 10mcg T3)

TSH 0.08 (0.2 - 4.2)

FT4 21.5 (12 - 22)

FT3 4.6 (3.1 - 6.8)

30 Replies
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SeasideSusie
SeasideSusieAdministrator

Those results show that you need an increase in T3 dose. NHS endos seem to be rather reluctant to give decent doses (possibly due to cost, possibly so they can say T3 doesn't help), I hope you're successful in getting an increase.

MartiJ
MartiJ in reply to SeasideSusie

Thanks I doubt I'll be successful

MartiJ
MartiJ in reply to SeasideSusie

On that basis I give up

SeasideSusie
SeasideSusieAdministrator in reply to MartiJ

Why give up? That's shooting yourself in the foot. Do you want to stay unwell?

If you believe that T3 has helped since you started taking it, and that your FT3 level is shown to have increased, point this out to the endo and say that you believe an increase in T3 will help even more. If you are refused ask why. Get a valid reason for it being refused. If all else fails tell the endo that you will consider obtaining T3 yourself and will increase the dose.

Have you had vitamins and minerals tested? Are they all at optimal levels ie

Vit D: 100-150nmol/L

B12: top of range

Folate: at least half way through range

Ferritin: at least 70

MartiJ
MartiJ in reply to SeasideSusie

Thanks no I do not want to stay unwell but I feel too overwhelmed to do anything, not getting any answers from GPs or endos to my symptoms. GP surgery will not allow me to have copies of my results. All I have are the ones I posted from my endo's letter.

crimple
crimple in reply to MartiJ

you are legally entitled to your blood test results and if they won't give them to you tell them you will report them. Just say to the receptionist you would like your blood results for the last year as you are entitled and you will collect them in 2 days. I can't remember who you report them to. Hopefully someone on here will give the answer or else post a new question

MartiJ
MartiJ in reply to crimple

Thanks, I take iron and vit D, folic acid and B12

SeasideSusie
SeasideSusieAdministrator in reply to MartiJ

MartiJ

In the UK the Data Protection Act gives us the legal right to have our test results. Ask at your surgery's reception for a print out. If they are difficult tell them that you are legally entitled under the Data Protection Act 1998 and you will be back in 2 days to pick them up. If they say they will have to speak to the GP then say that's fine but it doesn't change your legal entitlement to receive them and you will be back in 2 days.

They may make a charge (my surgery doesn't) but they're not allowed to make a profit, so it should only cover the cost of paper and ink.

Accessing your medical records:

thyroiduk.org/tuk/NHS_Infor...

nhs.uk/NHSEngland/thenhs/re...

If you still have problems you can make a Subject Access Request.

Once you have your results, start a new thread and include them (link back to this one or give full background information). Include the reference ranges for all your results.

If they offer to write your results down, say no, you want a print out. Mistakes can be made with hand written notes. If necessary ask to see the computer screen and take a photo. Make sure the reference ranges are included eg TSH: 3.5 (0 2-4.2)

Whatever supplements you are taking, say what they are, what dose, and the test result when you were started taking them. Very often inadequate doses are given or further investigations should have been done before starting them.

Office of the Information Commissioner under Data Protection Act

Thanks Angel

Hi

I totally agree. Please don’t give up.

Yes it is a hassle but I’d you have to source and take your own t3 it is an added expense but liberating to be in control.

Yes your vitamins need to be optimal too.

Good luck- where I am no one has t3 prescribed.

LAHs
LAHs in reply to MartiJ

Absolutely do not give up. Sometimes it takes a long time to get to the optimal dose of thyroid meds. This is because it takes a few weeks to stabilize, then you get a blood test, private if necessary. For some people it takes years but there is no need to be one of those. Find a source of T3, increase your dose a little bit until you feel better, get a blood test, have a look at your levels, post them here and keep going. You will get there, honestly. Keep fighting for your health and feeling of well being, you cannot give up. Actually, you can just increase the dose you already have, take a little bit more than you have been prescribed - then refill your prescription. That is what I do, my Endo thinks I take 1.25 grains of NDT but I take 1.5. It's a sort of don't ask don't tell! Either that or he doesn't count the days between when he writes the prescription and when all the refills run out.

Furface
Furface in reply to LAHs

Why is there such a postcode lottery in attitude to T3 and NDT? My Endo yesterday told me he'd never heard of NDT! He looked it up and then turned to me and said with a disgusted tone, that's dried up pig thyroid your swallowing. It's bad for you and will give you heart problems.

Which saved many, many lives for many many years before levothyroxine was invented

Until the 1970's when synthetic t4 was introduced as a one size fits all.

helvella
helvellaAdministrator in reply to Furface

Furface,

I think you'll find it was the 1950s that levothyroxine came to market - in both the UK and the USA.

JOLLYDOLLY
JOLLYDOLLY in reply to Furface

Never heard of NDT? What medical school did he graduate from especially as a Endo - goodness gracious me! NDT has been around forever (not quite) but since before I was born and I was born in the early 60's! My cousin was initially on it but then thyroxine. I feel like banging my head against a brick wall sometimes when I hear the things these medical people say! I would ask for a new Endo if that was said to me my lovely. :(

Furface
Furface in reply to JOLLYDOLLY

The whole appointment was surreal. He didn't believe that gut issues, vitamin deficiency have anything to do with the thyroid. Also I gave him copies of the tests I paid for privately. This included sex hormone tests that were out of balance and the 4 part saliva test that revealed I was flatlining was dismissed because his Synacthen test said normal. Asked him if T3 is prescribed with T4 as combo thyroid treatment. "We never prescribe T3 to anyone." He said. Please someone tell me where the thyroid experts are. This NHS Endo was as knowledgeable and helpful as a chocolate teapot.

JOLLYDOLLY
JOLLYDOLLY in reply to Furface

He should be struck off and you are right, he is as knowledgeable as a chocolate tea pot alright! T3 saved me, I have been on it for over 12 years or more because I was messed around by a GP. My current dose is 20 mcg of Lithyronine T3 and 200 mcg thyroxine T4. The thyroxine dose is my original "natural" dose which I am back on, but when I was messed around 23 years ago, they lowered it to 75 mcg and my life/health changed for ever :(

I was born with a partial gland and been on thyroxine all my life, I also have pernicious anaemia, B12 deficiency, sleep apnoea, odema also had fertility problems since I was messed around and heavy periods.

When I was on my original dose, I never had any problems, but now I have. T3 does work but we are not deemed worthy as basically it is the expense.

I would get a second opinion definitely. All of the above conditions walk hand in hand with thyroid issues, not all the time but a lot of the time and depending on the severity of your condition. Everybody is different too and we should be treated as individuals but we won't and are not.

I find it totally unbelievable how dismissive he was. Completely needs retraining.

Take care Furface :) x

helvella
helvellaAdministrator in reply to JOLLYDOLLY

JOLLYDOLLY,

I am not surprised.

The usual term for the desiccated thyroid in the UK was Thyroid BP. And in the USA, Thyroid USP is the official name of the desiccated thyroid powder before manufacturing tablets or filling capsules. Other terms exist like desiccated thyroid extract (DTE).

When I say anything, I always suggest avoiding the term Natural Desiccated Thyroid. I believe some medics confuse this with many of the other animal thyroid products which do not declare their thyroid hormone content - and possibly have none. It also seems to veer away from the fact that, for example, Armour Thyroid is an officially accepted product.

When being wordy, I prefer "prescription desiccated thyroid".

bobsmydog
bobsmydog in reply to Furface

Is he a vegetarian, haha?!

Furface
Furface in reply to bobsmydog

Something like that!

humanbean
humanbean in reply to Furface

Furface

My Endo yesterday told me he'd never heard of NDT! He looked it up and then turned to me and said with a disgusted tone, that's dried up pig thyroid your swallowing.

I wonder if your endo is or was disgusted by people taking insulin derived from animal pancreases?

helvella
helvellaAdministrator in reply to humanbean

humanbean,

And several others! :-)

Preparations: Derived from animal products

Pig-derived products

Dessicated Thyroid

Heparin (pig Intestine)

Pancreatic enzymes

Horse

Premarin (pregnant mares urine)

Animal cartilage

Gelatin capsules or gummy Vitamins

Chondroitin

Animal bones

Calcium

Animal blood

Heme iron (Proferrin)

Shellfish

Glucosamine

Omega-3 Fatty Acids (fish oil)

Calcium (oyster shells)

Sheep (Sebaceous Gland extract)

Lanolin

Vitamin D3

fpnotebook.com/pharm/Advers...

Furface
Furface in reply to helvella

I think he was trying to either embarrass me or shock me assuming that i 'did'nt' know what NDT was! By the time most of us even get as far as an Endo appointment , we are already so sick of being sick that out of desperation, we have researched, learnt and had to self treat.

If I post my vitamin and mineral levels once I am allowed them will I get advice about them? I am iron anaemic, have vit D deficiency, folate deficiency and take B12 injections

Leothelion
Leothelion in reply to MartiJ

Hi, with those deficiencies I would say they need to be optimal to help the thyroid, so if you’re deficient in folate any B12 is not being utilised, vitamin D is also required to help B12 too, low ferritin will also make you feel tired, my thyroid results look similar to yours, but I’m not taking the T3 only T4, any symptoms I did have went when I corrected my vitamin deficiencies, certainly the B12 helped tremendously but I did get my folate up to about 15. I was prescribed the T3 last year too but I chose to get my vitamins optimal first, my thyroid medication also lowered too, hope this is of some help to you..

Im on a t3 trial my bloods similar to yours when on 100levo 20t3. Endos objection is that my t4 should be lower when on t3 so my levo reduced to 75 last week. Ill see what happens on rare chance it improves my symptoms!!

Hi, you're already half way there, your endo is at least prescribing T3. There's no reason why he/she can't increase it a bit.You could do with reducing your Levo a bit and increasing your T3 to 15 - 20mcg.No point in taking more Levo than you need if it's not being converted properly,it's just sitting in you body doing nothing otherwise. Request another appointment with your Endo and stick to your guns.

I'm using a t4/t3 combo (novothyral) that comes in two forms, 100t4/20T3 and 75t4/15t3

Being without thyroid (TT after Graves and TED) I use a larger amount, basically between 137.5 T4/ 27.5 T3 and 150 T4/ 30 T3, depending on symptoms and test results. I supplement vit. d3 on a permanent basis and check/supplement B12 and B6, but also keep an eye on Fe, Ca, Mg,Se

Yes, my TSH went lower and lower since adding T3 but symptoms relieve is what I seek as a priority and I don't plan to quit tweaking on the dosage sometimes soon.

As to feel good factors I've confirmed that, to me at least, they're impacted by:

Consistency in meds administration and absorption conditions as well as dosing in more than one dose/day & timing

Fierce or stupid dieting is to be avoided

Intense, frequent workouts take a toe

Vits and meds are critical to be monitored and blood tests should be performed regularly

Seasonality has an influence on dosing/hormone need

Lifestyle and psychological wellbeing is interlinked directly and bidirectional with the causality and effectiveness of HRT

Feel free to ask if you have questions but please consider that, whatever you do, you can't let go or give up, that's not an option.

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