Crazy body, crazy thyroid..too odd to figure ou... - Thyroid UK

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Crazy body, crazy thyroid..too odd to figure out...?? Blood pressure, hypo etc

dgleds profile image
47 Replies

Ok ,this one is real strange...Im 61, a girl...been hypothyroid since about age 42....things been up and down but mostly when menopause knocked things around at 53 , but lately fairly stable thyroid tests...I was over medicated for a while, but lately just below 1.0 tsh, and i felt pretty good for a year...My Gp only tests TSH, and is reluctant to do much else...Even when my thyroid was 2.8 and where it is now, my Blood pressure was getting high, so i switched to DECAF coffee and low low salt in my diet, and my BP went down to pre hypertension 139/79 i think it is... All of a sudden in 3 weeks I have gained 7 pounds of weight, and my thyroid is like 0.33 and just out of range...my left ear is ringing as probably tinitus...I bet my BP is back up, so what is my body doing!!!! and why??? I thought i would be the opposite way as my clothing was getting a bit tighter...Whats the point of stopping coffee and salt then :( Body sabotage!!!! The range in canada is 0.34 to 5.5 for TSH....This test was 0.33 on feb16...in dec.7 it was 0.96

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47 Replies
Karen1963 profile image
Karen1963

Without Ft3 and FT4 results it’s hard to know... my TSH aftermeno went all over the place (10 yrs plus on thyroid treatment), up to 5 then down to far below range.. for me I feel best when Ft3 is in the top 1/3 of range and FT4 is about midrange...

Get your FT3 and FT4 tested...

There’s a lot of other markers B12, D etc that need to be tested too.

I use an ND for testing..private pay but it’s had to find a MD who is on your side..most won’t prescribe NDT or T3-

Hope you find answers there’s lots of wise women here ❤️

dgleds profile image
dgleds in reply to Karen1963

Thank you Karen1963...Ive been on high dose vitamin D since 2015, cause they thought at one time i had mild lupus, but i dont take meds for that anymore and i seem ok...Gp seem so reluctant to look at things, its crazy..No one has rechecked my Vitamin D levels to see if Im over dosed on that either....I can retest my thyroid in 6 weeks to see where its at, as GP was good enough to give me a standing order for 1 year...I was wondering if salt reduction and caffiene reduction might put my body in shock some how...

greygoose profile image
greygoose in reply to dgleds

There are those that say coffee is good for you. :) But, salt certainly is. The body needs salt, and cutting it out completely will kill you. By reducing your salt you have probably increased your water retention, which would be the reason why your clothes are feeling tighter.

When the water goes, it takes the salt with it, so if there's not enough salt in the diet, the body will hang on to as much water as possible, to retain the salt.

However, it's highly unlikely that reducing salt and caffeine had anything to do with the drop in your TSH. But it's very wrong of your doctor to only test TSH, because the TSH is irrelevant once on thyroid hormone replacement, unless it goes high. It doesn't matter how low it goes. And a low TSH doesn't automatically mean that you are on the right dose, nor that you are over-medicated. It means pretty much nothing at all. So, by just testing your TSH, your doctor has absolutely no idea of your thyroid status. TSH isn't even a thyroid hormone, it's a pituitary hormone. Is it possible to find another doctor, who knows something about thyroid?

You don't say how much levo you're taking. It could be that your FT3 is too low, that you're not converting very well - after all, high blood pressure is often a hypo symptom - but you won't know unless you get your FT4 and FT3 tested. The extra low TSH could just be due to the time of day you had it tested. TSH is highest first thing in the morning, and drops throughout the day, and after eating. Do you always have your tests early morning, and fasting?

HLAB35 profile image
HLAB35 in reply to greygoose

My mother's salt levels became critically low due to some silly newbie GP saying that it'd be good for her. She passed out on a busy street by the kerbside and someone kindly hauled her out of harm's way and called an ambulance; it was fortunate that she got help when she did and was spotted.

dgleds profile image
dgleds in reply to HLAB35

Hi! HLAB35,

There sure are some goofy Gp now...Over here they only stay like 2 years and go back where they came from, it seems...I had a pretty good GP when i first moved here, but she went back to S.Africa...then i just was allowed to see whoever for 2 years till a permanent GP came along for me, and he was a super ASSHAT...I complained to the clinic management and they finally gave me this lady doctor from Russia...If you know anyone training to be a doctor, send them to BC Canada as we have a shortage..

I use to have a really good male gp, elderly guy, and he retired :(

Mary-intussuception profile image
Mary-intussuception in reply to HLAB35

Yes. I'm not happy with all the media coverage that salt is 'bad' for us. Adequate salt is essential. I also have a relative who collapsed due to low sodium level. The blood test result was only slightly under range. So GP did nothing - just a wait and see / retest in so many weeks approach. So , of course, they treated themselves by eating more and using fine Sea Salt.

dgleds profile image
dgleds in reply to Mary-intussuception

This GP blew off a black line i had down my toenail and said oh just a fungus, and the fungus test came back negative and she didnt say anything (i can see results online)...So i was still worried about it and went in and said look it could be cancer...So finally and kinda reluctant, she sent me to see someone (and it wasnt cancer, but now Im sure and its ok)... She grumbled at the time, "oh you wont get in to see the specialist for ages"...I got in within weeks :)

Yes good salt, and im going to the health store as a lady told me about something I wanna try...

Thanks Mary-intussuception :)

dgleds profile image
dgleds in reply to greygoose

Hi! Greygoose, long time no see:)

Well before my tsh started walking again, my blood pressure was high and i was even sometimes having skippy beats, so GP said cut back on coffee (and i think it helped), as my readings went from like 144/79 to more like 139/79...Gp had wanted to put me on water pills for blood pressure, and nope I'm good just taking 1 pill my synthroid (i dont want to take all these pills if i can avoid it)...So cut back on cafiene, and then i mentioned to her salt too, and she said good luck as salt is in everything...So obviously Im still getting some salt, just cut back...And i been drinking hibiscus tea as it good for BP too...BUT, Im doing all that and my tsh decides its going to speed things up, so why bother trying to lower BP...

Im amazed the body will hang on to salt when you cut it out, cause i sure know it hangs on to salt when you use it, but interesting point to consider.

Oh, Im on 100 mcg of synthroid & I went to be tested at 2pm....They wont let you see another GP, and this one just make excuses...When before i was having skippy heart beats, i just went to emergency and I think she was mad at that (it was on the weekend though)...At least they looked me over really well, and later i saw an internist that sent GP a letter I think saying, i didnt feel she listened to me or something, cause she seemed annoyed by this letter.

I can retest in 6 weeks TSH, and watch what the weight is doing too, and if it goes goofy Im going to bug her for Ft3 Ft4 tests...PS/ they dont even give yearly physicals anymore and IM going to be 62 later this year (no more preventitive medicine, i guess)

Thanks Greygoose :)

greygoose profile image
greygoose in reply to dgleds

You're welcome. :)

But I think you need the Frees tested sooner, rather than later. 100 mcg isn't much of a dose, at all. Sounds like your GP is totally out of her depth, and she knows it!

dgleds profile image
dgleds in reply to greygoose

I think so too

dgleds profile image
dgleds in reply to greygoose

Hey greygoose :) My Doctor is away, and a student GP is there, this might be my lucky break for testing...I will ask for FT4 and FT3...I have so much to tell her, think i will write it down and let her read it instead...

greygoose profile image
greygoose in reply to dgleds

If you want her to read it, you should send it to her before the appointment. She won't have time to read it properly during the appointment, I fear.

dgleds profile image
dgleds in reply to greygoose

Oh she will, cause Im going to hand it to her and say nothing...It will certainly give her more time than me trying to explain it all...

dgleds profile image
dgleds in reply to greygoose

Hey greygoose...they used my blood still there from 6 days earlier TSH test, & sent to a lab in vancouver...Can you understand my results and shed light what might be up...My TSH went further lower (faster TSH 0.08) and here is ft4 and ft3..i have no faster TSH symptoms at all...

T4 Free

19.0

10.0-20.0

pmol/L

T3 Free

4.7

3.5-6.5

pmol/L

greygoose profile image
greygoose in reply to dgleds

The TSH is irrelevant on its own if the FT3 is in-range. And your FT3 isn't even mid-range. However, your FT4 is right up the top, so you're not converting well. And the reason you don't feel well, and are putting on weight is because your FT3 is too low. What needs to happen is that you lower your T4 a bit and add in some T3.

dgleds profile image
dgleds in reply to greygoose

I think what they will do is wait it out and check again later..OR, and, lower my synthroid to 88 mcg from 100mcg....Student GP is leaving now, so knucklehead GP will be back....Student GP called me at 6:11 pm on a Friday and relayed the message(on my answering machine)..Now I'm about to go away for a week and a half, so no seeing knucklehead GP for a while...

*T3 , do you get that from a naturopath, or would a GP write it up on a prescription.?

I don't feel too bad, and weight is coming off now, but painfully slow...

The student GP couldnt figure it out why i dont have classic over medicated symptoms...pulse is normal, even blood pressure is normal,bowel stuff normal,etc...couple restless nights, but i have that at times...

Thank you for your help greygoose :)

greygoose profile image
greygoose in reply to dgleds

You do know that high blood pressure is also a symptom of under-medication, don't you? I'm not sure reducing your dose is a good idea.

Are you in the UK? I can't remember. GPs can't - or won't - prescribe T3 in the UK, but endos can if they see fit. I wouldn't go anywhere near a naturopath, if it were me. You can also buy your own T3 on-line.

I'm not sure I understand why the student GP would expect you to have over-medicated symptoms. Your a long way off over-medication with an FT3 under mid-range, more like under-medicated. If he's thinking that a low TSH in and of itself indicates over-medication, then he still has an awful lot to learn about thyroid. :)

dgleds profile image
dgleds in reply to greygoose

I'm in western Canada...I use to live in the UK long ago ;) (parents are British too)...I have never seen an Endo yet...Back in 2013 I was sent to a Rhumetologist when they thought i had mild lupus, but I'm pretty sure that was my thyroid too...(They wouldn't listen to me, they had their own agenda)...Back then they slapped me on steroids and plaquinil so fast ,and seem to ask questions after. ( I knew it wasn't right)...I weaned myself off that stuff, and i've been fine...

I think my GP and student GP both will think over medicated...and my GP jumps to conclusions, and is reluctant to send people for tests...(a Russian lady)..new to Canada..

greygoose profile image
greygoose in reply to dgleds

Well, for what it's worth, I think your problem is under-medication, not over. :(

dgleds profile image
dgleds in reply to greygoose

Probably :) I could avoid her, then go for TSh test in a month or so, see if that comes back up...Then if it does come back to normal range, then ask for her to retest the ft3 and ft4...(which i bet she wont)...

greygoose profile image
greygoose in reply to dgleds

Well, you're not doing yourself any favours by pandering to your doctor's obsession with the TSH. If all she ever tests is the TSH then you're never going to get well. Can you not find another doctor?

dgleds profile image
dgleds in reply to greygoose

No, they wont let you switch Gp anymore, and there is a shortage of Doctors...I was lucky to get her, cause i had a very ignorant man GP before her(he wouldn't even let you speak)..My original GP went back to south Africa in 2013... I was kinda lucky my GP was away this week, and I got to see someone else...

greygoose profile image
greygoose in reply to dgleds

Oh dear, that's terrible. The situation is getting worse everywhere, it would seem. There's certainly a shortage of GPs where I live. :(

dgleds profile image
dgleds in reply to greygoose

I over heard the receptionist at my clinic say to someone on the phone..."Sorry you might have to go to a Gp 3 hours from here, that town might have someone...OR, take the ferry 1.5 hours to the Island, they might have a GP over there for you...WOW!

greygoose profile image
greygoose in reply to dgleds

Wow indeed! How awful! What is happening to all the GPs?

dgleds profile image
dgleds in reply to greygoose

I had heard the new ones are not allowed to train and make money elsewhere at the same time...Many older Gp are retiring..

greygoose profile image
greygoose in reply to dgleds

Yes, the old ones are retiring, and in our town, two just disappeared without a trace! Big mystery. Nobody knew they were going, not even their collègues in the same practice! Used to be you couldn't throw a stone without hitting a GP surgery, in this town, but they're now getting thinner and thinner on the ground.

dgleds profile image
dgleds in reply to greygoose

When our GP go on holiday, we often wonder if they will come back LOL

crimple profile image
crimple

I would get tested for thyroid antibodies and if they are positive start a gluten free diet, but important to have Vit D, Vit B12, iron ferritin and folate levels tested too.

dgleds profile image
dgleds in reply to crimple

Thank you, Crimple :)

Can you get private blood tests in Canada? I thought Canada was suppose to be one of the best health systems in the world, not for thyroid problems it seems. If you can get them done that would help and post the results on here including the ranges for people to comment and help you sort it out.

It might be expensive but well worth it, I did fork out for all mine last year and now I feel well again.

dgleds profile image
dgleds in reply to

In BC part of Canada we have a shortage of doctors, and the last provincial government cut and axed so much stuff in education and health care it seemed...Im not sure about getting private testing done here, but maybe there would be a naturopath doc somewhere that tests blood...Im on disability so i have to keep costs down...

Thank you, Bunnyjean :)

SlowDragon profile image
SlowDragonAdministrator in reply to dgleds

For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

dgleds profile image
dgleds in reply to SlowDragon

They would never, but if i was seeing a specialist they might..Ive never been to an endocrinologist ever...

Thanks Slowdragon :)

SlowDragon profile image
SlowDragonAdministrator in reply to dgleds

Here in UK we have to pay to test privately

dgleds profile image
dgleds in reply to SlowDragon

I use to live in the UK...long ago now

If you went to a NHS Gp and you needed tests done, do they make you pay for your tests? Or do you mean if you can seek out somewhere, to have them done privately then it costs you?

LAHs profile image
LAHs in reply to dgleds

If you are in North America try True Health Labs for private testing. They have a really good complete thyroid panel test. I get that roughly once a year or if I change anything, just to get before and after status. You can Google them, they are in Georgia but operate all over the world. I pay about $280 for the thyroid panel, that's not a great expenditure as an annual cost for blood tests.

dgleds profile image
dgleds in reply to LAHs

Thank you for the info LAHs

Karen1963 profile image
Karen1963 in reply to

In BC they will only test for FT3and FT4 if you have Hashimoto or graves. If you were diagnosed with autoimmune thyroid the doctor can write on the form autoimmune thyroid and the lab will test- otherwise they won’t test if your TSH is in range. They also don’t test folate (as a CBC will show whether your off- )

They have very strict protocols around thyroid testing - and most doctors will not prescribe T3 or NDT but naturalpaths will.

Our healthcare is overall good however with thyroid disease it’s not very good due to strict protocols similar to UK - I think -

I’m really grateful for our system as in many ways it works-

dgleds profile image
dgleds in reply to Karen1963

ya its not too bad, and with new local government maybe it will get even better...They have tested my FT3 and FT4 before , but not since about 2010, and in another town i lived...Yes another lady said she had to go to a naturopath to be diagnosed with hashimoto, and to get the proper meds...Her hashis seems to make her almost have mental health issues as well...it must be awful up and down...I had that up and down with thyroid thru menopause, and they just chased it around with different levels of synthroid...Naturopath visits use to be covered long ago in BC, but dont think so now..

I don't believe in paying for private Doctors or anybody else but a comprehensive blood test is well worth it. I sold old things that were precious to me to pay for my blood tests.

It depends whether or not you think that you are worth it or not.

I thought that I was worth fighting for so I did it and I am now well.

dgleds profile image
dgleds in reply to

I don't have anything to sell...Id love to have a complete blood work up to see whats going on..

in reply to dgleds

I am sorry it's so hard for us I know.

eeng profile image
eeng

Presumably you know that TSH varies throughout the day and is highest first thing in the morning. Also eating makes TSH drop, so a 9am blood test (or earlier), fasting, will make your TSH higher than an afternoon blood test having had a late lunch. Also you need to leave 24 hours between your last dose of Thyroxine and your blood test to make sure you son't get a false result.

dgleds profile image
dgleds in reply to eeng

Hi! eeng,

I"m sure the GP will be trying to lower my synthroid as she isnt happy I"m below 1.0..even though till this time, I was in the range...

Thanks eeng :)

LAHs profile image
LAHs

If a lower dose makes you feel ill you can always just take the same, previous, dose. It just means that your pills run out a few days earlier and I don't think docs count the days, I think it annoys them to fill out prescriptions anyway, they don't want to think about it too much. Like GG said, a low TSH level when you are on thyroid meds doesn't mean a whole lot, mine has been .001 for about 10 years and I have had no bone loss nor heart attacks yet.

dgleds profile image
dgleds in reply to LAHs

Ya the GP is freaked about the heart...First Gp ever worried about being slightly over medicated...the rest would leave it...My test has been normal for a while till this time, and she hated before it wasnt 1.0...

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