I am on T3 only and taking 20mcg daily. I coul... - Thyroid UK

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I am on T3 only and taking 20mcg daily. I couldnt take any amount of T4. My blood test has just came back at TSH 69.4.

mandy-white profile image
23 Replies

My GP increased my T3 to 30mcg daily. I have tried this but it makes me feel very unwell and sends my blood pressure up high. What would anyone suggest now as i cant take T4 either and obviously i need to increase my dose. Many Thanks.

[ Edited by admin to change units from milligrams to micrograms. This is appearing in a recent HU feature and could be dangerously misleading. Originally it looked like pedantry to correct. ]

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23 Replies
helvella profile image
helvellaAdministrator

Are you taking it in one dose? Or split?

DO you have any other blood test results - FT4? FT3?

in reply tohelvella

Rod - OP reply below... :-)

L

x

mandy-white profile image
mandy-white

I split it in 4 doses. I asked my GP if they tested for T4 or T3 and he said only the TSH. Sorry thats all i know.

in reply tomandy-white

Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.

Louise

xx

mandy-white profile image
mandy-white in reply to

thankyou. I didnt realise.

helvella profile image
helvellaAdministrator in reply tomandy-white

Lots of people don't realise when they start posting! No harm done. :-)

Glad you are splitting.

Have you had any other testing at all? Even Full Blood Count?

In your situation, I think I would at least be asking for a referral. Even though we see much disappointment at consultants, sometimes they come up trumps. And they can get FT4 and FT3 tests performed.

mandy-white profile image
mandy-white in reply tohelvella

Thankyou. I will make an appointment to see my GP again and ask if they will do all the thyroid blood counts and i will also ask them about Armour. I dont think i will get anywhere though. My GP wouldnt give me a trial of T3, it was only when he was on holiday that i talked a locum into doing it. I dont think my GP has forgiven me!!!!!!! I can just imagine him saying "told you so" if i tell him that i cant increase T3. Many thanks for your help.

hh46 profile image
hh46

Insist on more tests x

Jackie profile image
Jackie

Hi Have you tried armour etc.I cannot take T4 ( Levo) but am OK with armour etc, I do also have a little T3 as my FT3 very low.I know my endo`s choice goes like, T4 + T3, 2nd, choice armour ( with T3 if needed) third choice T3 alone.I know on T3 only it is difficult to evaluate.

I hope that is some help.

Jackie

mandy-white profile image
mandy-white in reply toJackie

Thankyou. Not sure if my GP would prescribe Armour though. I dont think you can buy it now without a prescription can you? Stupid question but can you tolerate the T4 thats in the Armour ok ?

Jackie profile image
Jackie in reply tomandy-white

Hi Mandy, I am fine with the t4 in the armour, been on it years and always OK.Try the GP, I know some do. it was licensed in UK until Levo arrived, so much cheaper, always costs! Your GP would need to prescribe it on a "named patient" bases, I know quite a few do.Some people do buy it without a script. Details are only by PM so you would have to put a post on the Forum along those lines. I personally would not do that as I think it is too dangerous and not normally made by the sole licensed company USA. if you did that be sure to have frequent blood tests, on line,powerful drugs..Alternative is to see an edndo, but it will probably then bw a private script because of GP. Also if you are seeing an endo, look them up first and phone their secretary and make sure they do prescribe it ,as some do not.

Best wishes,

Jackie

mandy-white profile image
mandy-white in reply toJackie

Thankyou Jackie. Sorry but what do you mean by "named patient" bases. I dont think i will have much luck with my Gp prescribing it but i am going to try. i have seen endos at 2 hospitals and they both more or less showed me the door and said the only reason i was ill was because i wont increase the T4........They wouldnt listen that i just couldnt take it so i dont give much hope for an endo near me either....but i will try my GP and then if not then i will insist they send me to another endo..........fingers crossed. Thankyou for your help x

Jackie profile image
Jackie in reply tomandy-white

Mandy, I cannot say I am surprised, I know my endo says that a lot of endo`s are not what we want, to be polite!

"named patient" means that GP`s can prescribe off the recognised list if there is a particular reason.I would phone your Local Health Authoritry first before seeing the GP. They are very helpful and know your local prescribing policies.Do you have a problem with absorption? it is common, pancreas. There is a test called Faecal Elastase a simple stool test, idiot proof. If positive you have Creon on a script ,it is simpley replacement Enzymes but must be taken 20 mins before food, 1 or 2 depending on size of meal. If GP difficult, it is very safe to take the same thing from Holland and Barratt as simply an enzyme. They take a few months to work. My endo says a common problem with drugs. you do not need to be underweight etc.When the thyroid is correctly treated often these sort of problems improve dramatically, chicken and egg!

Best wishes,

Jackie

mandy-white profile image
mandy-white in reply toJackie

Thankyou Jackie. Do you know if you can get the test done privately? Is the tablets called creon from Holland and Barratt, or is it called something else. Sorry, so many questions!! Thankyou, Mandy

Jackie profile image
Jackie in reply tomandy-white

Hi Mandy, yes called Creon, tablets identicacal , endo told me , actually she told me to tell my gastro! It must be taken 20 mins before food or no good, 2 to 6 depending how much you eat. I find 3 best( 3 meals), although told 6 as I do not eat much.of course, they take a while to work but a common problems especially if you are Caeliac.I am not but have most else.You can certainly have the test by TDL as I did at the Priory, try their main site. If you use a private Hospital it should not cost much but you would need any form, not necessary theirs signed by a doctor for their authority, then results to that doc, sticklers actually. Always having a row with them about the bloods my consultants do there.Try on line, name definitely correct, simple to read. result.

Good luck ! Jackie

LouiseRoberts profile image
LouiseRoberts in reply tomandy-white

thyroiduk.org.uk/tuk/treatm...

Louise

xx

LinDonaldson profile image
LinDonaldson in reply tomandy-white

Hi there,

Named patient basis means that the local Primary Care Trust will allow a GP to prescribe restricted meds if she/he writes requesting that the patient can have the particular med in question. Not all PCTs do this so it is a bit of a lottery.

Regards

Lin

Heloise profile image
Heloise

Hi Mandy, T4 is a synthetic substance made in a laboratory, the T4 in Armour is a natural substance. I will never believe they are identical. There is no natural T3 except the small amount in Armour, etc. so even that you are taking is made in a lab. Try hard to get Erfa or Armour and at least see if you improve.

mandy-white profile image
mandy-white in reply toHeloise

Thankyou. I am going to try . Is there any difference between Armour and Erfa?

Mandy

Heloise profile image
Heloise in reply tomandy-white

They are basically the same but different manufacturers. Armour changed the composition slightly and needs to be chewed a bit to break down. Erfa breaks down easier. Since your GP allowed you the T3, maybe he'll be equally fair about trying Erfa. He can't leave you without anything.

mandy-white profile image
mandy-white in reply toHeloise

Thankyou. My GP isnt that helpfull. I waited for him to go on holiday and then seen a locum at the practice and talked her into it. My GP wasnt happy, but i did tell him it was me that pressured her. So i dont think for one minute that he will now agree to me having Armour or Erfa.......but i am going to try. He will probably be smug though cus i didnt get on too well with the T3.

Heloise profile image
Heloise in reply tomandy-white

I see. What about your adrenal glands? If they are underperforming...too much or too little cortisol....your thyroid meds can't override them. I can't remember your history but they do have an impact on how you handle thyroid supplements. Other than that, I can't understand why you are not feeling better on T3.

Aurealis profile image
Aurealis

If you feel well enough to exercise this might help you feel better, you will know almost straight away

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