Desperate

[Stevie]

Hello everyone,

First time posting, could someone help.

Been hypothyroid 15 yrs am now 61yrs, feel like I am in a living hell.

Taking levothyroxine 100 mcg, test results with blue horizon. 1yr ago

TSH 2.8 ref 0.27- 4.2

FT4 20 ref 12 -21

FT3 4.4 ref 3.1 - 6.8

Test results last week just upping my dose tiny bit 12.5mcg to 125mcg

TSH 0.31 ref 0.27 - 4.2

FT4 29.9 ref 12- 21

FT3 4.4 ref 3.1-6.8

I feel awful on !00mcg & trying an extra 12.5 or 25mcg.

Over the years I have had mastectomy,hesterectomy,gallbladder removed.

I have been diagnosed with advanced divaticula & horse shoe kidney, now have permanent urine infections, on antibiotics daily from Addenbrookes hospital. although scans show problems, nothing to need surgey.

I am now getting chesty needing inhalers

My quality of life is crap, sorry just true.

I have watched you all for some time, aware of all vits etc.

I wondered if you think I would benefit from adding some T3 as I feel awfull on 100mcg, if I try to up the dose a tiny bit I feel hyper, would you think from T4 results on the last test is high, am i just not converting as the FT3 results are the same as the first test

Thankyou for looking, appreciate any advice, just want to get out of my chair.

[jimh111]

Kidney problems could reduce the amout of T3 you produce by type 1 deiodinase. Suggest you ask for an endocrinologist referral to Addenbrokes. If you've already been there ask for a referral to a more senior endocrinologist as they are not sorting the problem. Did you ever suffer from hyperthyridism? This can result in a lower 'set point' where your TSH is lower than it should be. They have a lot of thyroid expertise at Addenbrokes so they should put the effort in to sort you out.

Jim.

[Stevie]

Thank you so much for your reply.

No never hyperthyroidism that I know of.

My TSH was 100 when I was diagnosed.

Desperate life is passing me by, been on antibiotics for 2 yrs, just praying that a little T3 could offer some protection.

Just feel hypo symptons all the time.

Thank you for taking the time to answer, shall be asking for endocrine app with my GP, do you know if Addenbrookes are T3 friendly, would you think that's what I might need.

Best wishes

[Holly10 in reply to Stevie]

I see Professor Chattergee at Addenbrookes and he is certainly amenable to trying T3.

Holly

[Stevie in reply to Holly10]

Thank you Holly,

I am so pleased, that has given me hope, we all need that.

I am exhausted with every day being the same, I used to have window moments of what felt like going from black & white to colour, now the windows are smeared. Its always the simple things isn't it, I can be challenged just doing the dishes.

May I ask, do you take T3, if so is it working well for you.

Thank you for taking the time to answer, everyone has been so kind.

Best wishes

Stevie

[rosetrees]

Have you had your iron, folate, ferritin, Vit D and Vit B12 levels measured? One or more of these are often low in hypo people and they need to be well within range for you to feel well on thyroid meds. Ask for them all to be tested and make sure you get a print out of the results.

Also, have you considered that you might have adrenal problems too? There's a good questionnaire here adrenalfatigue.org/take-the...

[Stevie in reply to rosetrees]

Hi Rosetrees

Yes I do have all iron, folate ect checked, have been low and addressed the situation.

I have been a watcher on the forum for a while, its helped a lot to learn these things.

Must say I find it difficult to take vit D, it can make me feel hyper.

I will definitely do the adrenal questionnaire, is their anything you would recommend for weak adrenals

Thank you for taking the time to reply

[mumcat2]

I can only endorse your query on T3 by saying that I came off T3 just over a year ago because my new endo for some strange reason just doesn't want me on it. I've gone through the whole shebang of hypo again,at first putting them down to recovering from a brain haemorrhage in March 13. Having made no positive improvement I've put myself back onto T3 and after only a few days' worth I feel much better.

T3 has to be worth a try for you- what's the worst it could do?

[Stevie in reply to mumcat2]

Hello mumcat2

Nothing more I like than to hear positive result, it must have been awfull, so glad for you.

Just seem to be collecting specialists, Urology, bowel. now chest & of course the mind is not okay, very slowly over the years I am losing ground. Just made me think they are hypo symptons getting out of hand, but of course medical people do like to treat them separate.

When I saw the last test with high T4 just made me think its goin no where.

How much T4 would you drop, not sure to drop to 75 or 50, how much T3 would you start on.

Think I should be gentle

Thank you so much for taking time to reply

Best wishes

[Clarebear]

Your suggestion seems to bd s very sensible one. My endo agreed with similar test results that it looked like I wasn't converting properly. I now feel so much better on T3/T4 combo I feel much better with midrange fT4 and top third/quarter of the range fT3 and suppressed TSH. Good luck xx

[Stevie in reply to Clarebear]

Hello Clarebear

[Stevie in reply to Clarebear]

Hello Clarebear,

Thank you for taking time to reply.

This is so good to hear, just what i need.

Its a case of biting the bullet now, don't know if to just get on with it and self treat or go down the endeocrime haha ( mis spelt but I like it , route.

I am just so tired & the length of time to get their seems daunting.

would you drop to 50mcg or 75mcg & a tiny dose of T3 to start with or would you wait it out & try to get gp

to send me to hospital.

Just seem to be living their at the moment.

Best wishes

Stevie

[Clarebear]

Hi - I was very lucky to persuade a reluctant endo into a trial of Armour, as I was a bit reluctant to go down the self-medication route, although I would have done this if necessary.

Have you considered trying one of the private doctors/endos on the TUK list?

Clare xx

[Stevie in reply to Clarebear]

Thank you Clare,

Could someone send me a list of T3 friendly endo for east Anglia, preff NHS.

I have been reading some of your posts, you worked hard to get well, long may it continue.

Thank you again & I hope one day I will be putting a post in to say I am out of the arm chair.

Best wishes

Stevie

[jimh111]

I don't know if Addenbrokes are 'T3 friendly' but they do have a lot of experience and resources. I wouldn't self treat for two reasons. 1. It's a very last resort and if there is a secondary condition contributing to your problems you will not discover it. 2. We should give the endocrinologists a chance, be friendly and assertive. If we bypass them they lose sight of our problems and nothing changes.

If you had an adrenal problem you wouldn't be able to take 100 mcg thyroxine so this can be ruled out. Some T3 might help, you have the kidney problems and the numbers from a reputable lab so see if Addenbrokes can help. It may help to take a brief list of your symptoms just in case you forget to mention them.

[Stevie in reply to jimh111]

Thank you,

I have taken your advice & made an app for GP in the hope of getting referd to Addenbrookes.

I have a simple cyst on the liver, they tell me its fine & I have high cholesterol which I choose not to have statins,(no I don't drink, but could start at this rate ha ha) a lot of conversion takes place there.

Actually writing it down seems I have a lot kidneys bowel liver now chest, not forgetting the mind, I just feel all of it is not controlled.

It does make sense to see if I have any underlying problems.

Thank you for your time, I live in hope of simply enjoying a walk, all that we take for granted becomes very precious.

Best wishes

Stevie