What do you make of this?: Hi, been to see the... - Thyroid UK

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What do you make of this?

joannec123 profile image
22 Replies

Hi, been to see the Endo and just got my letter back, basically he tested for various things and said all within normal range - apart from my free T4 which is still low end at 11.7.

Cut a long story short... I had all the symptoms of HYPO back in November, GP reluctantly put me on Levo 25mcg as my T4 was 12.1 (low) but within range still. and so was my T3. back then my TSH was mid range about 2.6. and now its 1.7.

Anyway, I felt loads better within a week.

But, then my gp decided it wasn't prob my thyroid more hormonal and increased HRT.. I feel a bit better, but still got tiredness, not as bad. I came off the Thyroxine in Feb.. and lots of symptoms returned....(within a week!!). I also get dreadful hot flushes all the time?

So, he has dismissed me as HYPO and just told me im tired and need to do some exercise probably!! mmmmm.

But, has suggested I get my Thyroid checked again in 4 months...

What do you think of my T4 result??

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22 Replies
fixit profile image
fixit

I have just had a disappointing Endo appointment after months of waiting. My TSH is 3.5 and FT4 11 but both my GP and Endo insist that im not hypo as TSH would be over 10. Im now looking into taking NDT as I feel it is the only way I will improve my health.

joannec123 profile image
joannec123 in reply to fixit

oh no, nightmare. In some ranges your TSH is def high!! cant believe they say 10!! that is crazy. I don't know much about the NDT. so im gonna google it, lol. sounds like a good plan though. your FT4 is the same as mine, indicating hypo - out of interest what symptoms do you have? x

shaws profile image
shawsAdministrator in reply to joannec123

Waiting till 10 is barbaric. Even although the USA has dropped theirs till 3 before starting treatment the BTA guidelines state 10.

These are helpful links from Thyroiduk.org

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

fixit profile image
fixit in reply to joannec123

My symptoms are weight gain, migraine, dizziness, swollen eyes, face, neck, fingers and feet, chronic fatigue, lack of energy, loss of body hair, eyelashes and eyebrows, need 12+ hrs a sleep, can't tolerate hot or cold, aches and pains. I won't go on!

joannec123 profile image
joannec123 in reply to fixit

All classic hypo symptoms then!! Similar to mine.

Marz profile image
Marz

Sorry to be cynical - perhaps Doc is better paid for prescribing HRT than T4. I think women have been shortchanged for a generation with HRT - without further investigations into the underlying causes of a myriad of symptoms. A quick fix. Some people of course have felt marvellous on it :-) We are all individuals.

You are still having flushes - so as the thyroid acts as our thermostat it could suggest you are in need of T4. So sad the Doc did not listen when you said you felt better - even on a very small dose.

Your Low T4 does suggest your thyroid is not producing enough storage hormone with the result that your FT3 will also be low.

Have you had your Iron - B12 - Ferritin - Folate - VitD tested ? They all need to be HIGH in their respective ranges for you to feel well.

So sad that so many GP's are unable to admit they do not understand the thyroid and its workings. Surely if the Endo said your FT4 is low then your GP should be doing something to help you before you develop even more unpleasant symptoms.

joannec123 profile image
joannec123 in reply to Marz

The hrt has def helped me and I had a full hysterectomy at 39 so need it for bones etc... I never had any hot flushes until all these other hypo symptoms came on in nov... and yes, I felt better within a week on levo... im not so bad now, but still lots of symptoms. Got gp to check b12 etc.. posted it on here and although all in range, people said all low, so I bought some b12. I cant take iron.

even though endo said my t4 was on low side he told gp didnt think I should be on levo!!? My ft3 was low end too in nov but endo said t3 only relates to hyper not hypo???

Heloise profile image
Heloise

How can he dismiss the hypo when your symptoms improved in only three months on thyroid replacement. I wonder if threats work with these doctors. If you say you will make appointments with GP's until someone will continue your treatment which was obviously correct in the first place. Why can't these people be reasonable.

joannec123 profile image
joannec123 in reply to Heloise

Exactly!

Clutter profile image
Clutter

Didn't your endo recommend thyroid hormone replacement? Low FT4 means you will struggle to convert FT3 and will feel crap. My GP described my FT4 of 14 (12-22) as dangerously low and felt it increased the risk of osteoporosis and heart problems.

Can you contact the endo via his/her secretary for clarification as to whether your GP should be prescribing T4 and what dose?

joannec123 profile image
joannec123 in reply to Clutter

No, he said i dont need it!? Just to retest levels in 4 to 6 months.....

Clutter profile image
Clutter in reply to joannec123

Don't wait that long. Life's too short to spend 4/6 months ailing when treatment is available. Pester the GP until you get retested in 4/6 weeks and stress how much better you felt on Levo and list the symptoms which resolved.

joannec123 profile image
joannec123 in reply to Clutter

My gp knows I felt better, but she wasnt convinced it way hypo hence me requesting to see an endo, then he says the ssme basically. So no way will she listen now.... ivthink my estrogen was low and my hrtvicrease has hrlped some symptoms ie itching, hair loss etc.. but stilll got fatigue, hot flushes and gritty eyes etc.....

ivecexplained itvtobher and him!!

Blake profile image
Blake

You have the classic case of a doctor that doesn't understand hypothyroidism. You need FREE T3, FREE T4 tests and adrenal test (24 hour saliva cortisol).

If you are not totally familiar with the use of NDT and all the proper steps you will need to be taking, please browse through the link. It will open up more and more links. Its a bit complicated, but its not rocket science. Although getting your doctor to be open minded enough to cooperate, and then after you fire him, trying to find a good doctor may all be about as hard as getting a rocket into space. All the best, good luck

stopthethyroidmadness.com/n...

joannec123 profile image
joannec123 in reply to Blake

Had all that done, said all in range.... even though ft3 and ft4 low end. Endo said t3 not helpful for hypo only hyper?? Thanks

HarryE profile image
HarryE in reply to joannec123

You can't give hyper people T3!!! It would just make them more hyper! I would get away from this loon!! :-(

Blake profile image
Blake in reply to HarryE

Ya, Harry is correct..Haha..hopefully Joannec mistook what the doc said or mistyped. But if she did not, then ya, the doctor is worse than a loon. Endos are typically even worse than GP's for treating thyroid patients. Because they are "specialized" meaning they are even less concerned with minor issues like hypothyroidism. So if you are "in range", their job is done...Oh, you still have depression? Take this drug... Worse yet, they are even more indoctrinated in a medical system that is so influenced by the pharmaceutical industry. So instead of 8 years of indoctrination in failed treatment, they have 12 years and are even more arrogant

Blake profile image
Blake in reply to Blake

T3 only (liothyronine) is used when one is hypo but has a reverse t3 problem. Meaning when they raise up their thyroid medication, instead of feeling better, they become hyper. That's because the t3 is "pooling". That is usually due to adrenal problems or iron problems. So t3 can be used along with NDT until the other problems are corrected. You can see the FB page and join if you need help.

facebook.com/groups/Recover...

Blake profile image
Blake in reply to joannec123

Hes wrong again Joanne. Your FT3 should be in the high end of the range if not a little above. Your ft4 is ok at the low to mid range, but what you need to do is raise up your FT3 to the top using NDT. Now if you become hyper before that happens, that indicated ft3 "pooling" So that causes of that need to be corrected. If you are having trouble correcting the cause, that's when t3 can become useful (liothyronine)/ Thats what I am using, with a combo of NDT. Your Reverse t3 is important to know if you are pooling. The ratio should be greater than 20:1. There is a calculation that is used because RT3 and FT3 are usually measured in different units. I can help you with the calculation if you wish

joannec123 profile image
joannec123 in reply to Blake

Thanks Blake, you seem to know a lot about all this :-) I have done quite a bit of googling, but not in so much depth. Thank the lord for the internet eh?! he just mentioned in my letter to my GP (and I had a copy) after I saw him, that my TSH is mid range and yes my T4 is low end.. 11.7 (was 11.1) so to keep an eye on that. He didn't test my T3 as obviously doesn't think it is relevant for HYPO!? I did persuade my GP to do my free T3 back in nov when I first went to see her with all my symptoms and it was only 4.1 (4-8.3) so therefore also low.....

Blake profile image
Blake in reply to joannec123

Thanks. Well, if you have any symptoms of hypo, there's no doubt why. The NDT should be raised slowly, about half a grain every 2 week, until symptoms are gone. I'm able to text myself every month. That is the best I think..I don't know why they think every 2 months is enough. Then they hold you on the same dose for all that time. That's just wrong.

stopthethyroidmadness.com/n...

joannec123 profile image
joannec123

I know... was shocked when he said dontcworry about your t3 result thats only relevant for hyper not hypo....

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