hypothyroid about 16 years...stable on meds...n... - Thyroid UK

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hypothyroid about 16 years...stable on meds...now its yo yo ing...why?

dgleds profile image
23 Replies

Hello,

was hypothyroid at 41...ok with the meds till about 52...then it started to yo yo. Of course menopause was in the mix...Im 57 now and the yo yoing seems to be quicker like 1.41 Nov, then month later Dec 2.59, FEB 0.77, then I asked for retest thinking a mistake 2 weeks later 1.03...Its within there normal range, but whats making it jump around....? Anyone else have this? Im on synthroid..(levothyroxine) Ive never been to an Endo...

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dgleds
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23 Replies
LouiseRoberts profile image
LouiseRoberts

Hi

Can I ask a really stupid question..... How are you feeling?

Also have you got an FT4 result, FT3 result & thyroid antibodies?

Also, before people start to try and give advice, please can you confirm if you are in the UK?

Thanks

For future reference, people tend to get a better response in the Questions section... :)

L

x

dgleds profile image
dgleds in reply toLouiseRoberts

I feel like im running against the wind....Im in Canada now, and they don't seem to test T4 T3 very often...it was ok last time though. There was a time my meds all of a sudden made me over medicated, yet my t3 or t4 was telling my body to produce more I guess hormone... That finally settled...but still tsh yo yoing...I was wondering where to post questions or posts, cause Ive been on the site a little while now.... Thought I might have been doing it wrong before...

If you have Hashimoto's it is normal to yo-yo. You go up and down all the time. The antibodies cause slow destruction of your thyroid. From time to time it tries to splutter back to life. That's why you go up and down

dgleds profile image
dgleds in reply to

how do they treat Hashimotos?

dgleds profile image
dgleds

Well I asked the Doctor I had before about Hashimoto's, and she said Ive had a thyroid problem to long for it to be Hashi's..

HarryE profile image
HarryE in reply todgleds

God, where do they learn these stupid statements?? Autoimmune issues can go on for decades. Why can't she just test your antibodies?

dgleds profile image
dgleds in reply toHarryE

the only thing in all this time they ever tested was my TSH...very ocassionally my t4 t3...I don't have a regular gp now..she went back to S.Africa. I see who ever sees me...

HarryE profile image
HarryE in reply todgleds

Which is not too bad if your symptoms are controlled, but they aren't so she needs to look for an explanation. Hashi treatment is the same, but i think it just helps you to manage the ups & downs if you know what"s going on & why.

dgleds profile image
dgleds in reply toHarryE

so they just give you levothyroxine(Synthroid) for Hashimotos? For a while back, she just changed my meds often chasing it around...then one day said lets leave it for a bit. It stabilized for a short while then off again...

HarryE profile image
HarryE in reply todgleds

Yes, but as the attack can come & go, your response can change

dgleds profile image
dgleds in reply toHarryE

so far I have them monorting my thyroid by tsh testing every 3 months...but now she is gone the doc, im hoping next doc I have continues to do that too. I will ask them to check my thyroid antibodies...So how do they stay on top of Hashimoto's?

HarryE profile image
HarryE in reply todgleds

Not really sure as I haven't managed to get treatment yet! Maybe more by your symptoms? Someone will know :-)

dgleds profile image
dgleds in reply toHarryE

Im in Canada now..In BC there is such a shortage of Doctors and cutbacks to health care, that they seem reluctant to really do much.

PS/Thanks Harry E for trying to help me:)

helvella profile image
helvellaAdministrator

The time of day at which the blood was drawn - and how long that is after taking your levothyroxine can be very important. Someone who had their blood drawn at 08:00 might be diagnosed hypothyroid but, had the blood been drawn at, say 16:00, they would not. It can be that significant.

healthunlocked.com/thyroidu...

You might also consider whether other factors (vitamin B12, folates, iron/ferritin, vitamin D, etc.) could be factors.

Rod

dgleds profile image
dgleds in reply tohelvella

I usually go same time for test, cause such a line up...Ive had all the vitamin stuff checked above. BUT not the b12 lately...my mom had B12 defiecency...they quit giving her shots when she was elderly...seemed odd they stopped. Im afraid to ask for things, they are so reluctant to do things these days (your in the Docs office like 5 minutes it seems).

helvella profile image
helvellaAdministrator in reply todgleds

Someone who needs shots of B12 should absolutely carry on getting them!

Mostly people get lower and lower in B12 as they get older even if they never had any sort of problem when younger.

In the UK we now have the Active B12 test (also just starting to become available in the USA). It claims to be very much better at assessing real B12 levels than the standard B12 serum test.

B12 costs less than one UK pound per ampoule - almost certainly costs more in labour than in materials!

Mind, in the UK we get hydroxocobalamin - I seem to remember that Canada uses a different form?

Rod

dgleds profile image
dgleds in reply tohelvella

I can tell you it seems were going backward now in coming forward in Canada...

dgleds profile image
dgleds in reply tohelvella

they also said my mom didnt need her cholesterol lowering meds anymore as well...that was a GP...I had just taken her to a cardiologist who said leave things the same. It seems the mail didn't get through...Its ok its a while now and Mom passed on. I sure had to advocate for her...Mom had no thyroid probs though....

in reply todgleds

Do not deny or decry your need for treatment. If you need a double appointment (10 whole minutes!) instead of a five minute one - ask for it. If they ask you why, tell them "I want to feel well again.". Over here thyroid patients are ooooh soooo used to being fobbed off: 'it's your age', 'just go on a diet', ' don't eat so much', 'take some exercise', 'you're depressed'. If you do not insist, you will not get help. Take someone with you - especially if they really make you feel you're being a nuisance. And take also a note of how you feel and questions you want to ask. And don't leave the doctor's office until you've got what you NEED.

dgleds profile image
dgleds in reply todgleds

never had D done till now though...see below

dgleds profile image
dgleds in reply tohelvella

Rod,

just got my vit D checked now finally...and its low....They say I have mild lupus, but only thing positive tested is the ANA it 1:320 homogenous..finely speckled....and was some inflammation CRP test...but that's it. The meds they give you for lupus can make you vit D lacking...and the sunscreen you wear too;(

dgleds profile image
dgleds

I will..

.Last time they had a doctor in training on by himself....I felt I was talking to a dead telephone:(

They also said on TV last night, that in Canada (BC), they are going to cut back on all medical testing...

I think they wanna bump some of us off, due to cutbacks;) Scary stuff.

weg1 profile image
weg1

I also have hypothyroid and have been to see endo. There recommendation was to take my pills at night when i am not digesting anything else and also don't mix brands, I was given 25mg one brand 50mg another brand. also highly recommend mercury farm brand, if you can get it.

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