Im hypothyroid but is this normal?: Hi! Been... - Thyroid UK

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Im hypothyroid but is this normal?

dgleds profile image
55 Replies

Hi!

Been hypothyroid for long time since about 42 and now im 60...I was over medicated for a while on 112 synthroid....then down to one 112 and 100 alternating...now 100 only, but there for a while...SO, my test was done last week and was 0.80 TSH and gp was happy....Ive been having gut issues so she retested me 1 week later and my TSH is 1.18 so fast climb i thought in 1 week only....???? What would make that happen so quick....In the summer she did a t4 test and it was like 3.5 uber low, but still in the gp 's normal range....I try to get her to retest, but she wont...cutbacks your lucky if get a yearly physical here in BC Canada....Someone said low t4 can be a conversion thing..or not eating correct..i was eating less cals, but not going crazy...SO why the jump on the TSH in a week, so fast...i think anyways???

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dgleds
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dgleds profile image
dgleds

this what was in the summer:TSH

L

0.26

0.34-4.82

mU/L

T4 Free

16.6

10.0-20.0

pmol/L

T3 Free

3.7

3.5-6.5

dgleds profile image
dgleds in reply todgleds

sorry my t3 was the 3.7..not t4

A thought: When i had last week tsh test 0.80 i wasnt fasting, just walked in to be tested...This week I was having a whole blood labs thing done, so i was fasting and got that 1.18 tsh....Maybe the fasting made it loopy?

Marz profile image
Marz in reply todgleds

Maybe you have anti-bodies. Have they been tested ? Anti-TPO and Anti-Tg.

Conversion of T4 into T3 seems poor too as FT3 needs to be higher in the range.

You need good levels of FERRITIN - FOLATE - B12 - VITD for the conversion of T4 into the Active thyroid hormone T3.

Swopping doses can also have a negative effect.

I am not a medic - just a Hashi's gal with a B12 issue.

dgleds profile image
dgleds in reply toMarz

Hi! Marz,

Yeah they never check that stuff, but they should....They thought i had mild lupus at one point, so they do have me on high Vitamin D...They have never sent me to a thyroid specialist...ever...My Mom was B12 low, but My Mom i think was a picky eater...but you never know stuff can be hereditary for sure...I wouldnt let the doc move my meds around too fast this time...couple years back a gp i had was playing around with my synthroid levels often, and i think menopause back then was shaking stuff up...I may just take B complex on my own, and some iron (smaller amounts) I cant have a different GP as you have to stick with who you get now...shortages here...drat!

Thanks Marz :)

Marz profile image
Marz in reply todgleds

How high is high - for the VitD dose ? If you are taking large doses of D3 then it is suggested you also take VitK2 MK7 as this ensures the improved levels of calcium in the blood, heads for the bones and teeth and does not remain circulating - which is not so good. Magnesium ? - another valuable supplement.

Taking a B Complex will not give you an adequate amount of B12 - you really need a B Complex to support the B12 taken in lozenge form which can dissolve under the tongue. This prevents poor absorption in the stomach/gut. You could buy on-line the Jarrow methylcobalamin B12 lozenge - either the 1000mcg or 5000mcg. You really need to know your level of B12 as anything under 500 could become a neurological issue - something far more serious than a Vitamin deficiency - check out the link below and scroll down ....

b12deficiency.info/signs-an...

Please look at the films and read as much as you can in the above site. You may find some of your symptoms of Low B12 can overlap the Hypo ones. Also you need to know if you have thyroid anti-bodies - Hashimotos - so you can take the appropriate steps to support your immune system.

dgleds profile image
dgleds in reply toMarz

Im pretty smart about my vitamins and minerals, cause i always had an interest in that stuff, but just money wise i couldnt do it as of late...The rhumetologist wanted me on 2000 IU a day of vitamin D3...i sometimes take a bit less, cause no one is rechecking me...I do take my cal/mag too, when i can afford it...At one point i was getting the combo Cal/mag with D...If you get the B complex thats higher in dose, it does have B12 and more balanced B vitamins you dont normally see in lower b complex...BUT i do know the b12 strips your talking about, casue when my Mom didnt get the b12 needle jab anymore, i gave her those strips under her tongue...PS/i have been having gut issues lately..just when she started lowering the thyroid med...gp is a little surprised it didnt happen on higher thryoid med...

I was never tested for hashimotos long ago, and when i mentioned it to one gp, they said ive been hypo too many years to have hashis now...They dont seem to wanna do much about anything...

PS/iuse to have some slight aches in my hands etc...and a funny ANA so they jumped on mild lupus 3 years ago...they wanted me on horible pills..i did them for a while and then said NOPE...so he(Rumetologist) put me on High vit D...and pains went bye byes...no more rhumey visits..he said my lupus is not very active...I dont even think i have it to be honest...no one rechecks that either..my blood i mean..

Marz profile image
Marz in reply todgleds

As others have said - you need your thyroid anti-bodies tested ? If you have them then it could explain the lupus type symptoms too.

Cal/Mag - if you are on good levels of D3 you will also improve the uptake of calcium from foods so no need to add more. K2 ?? Not enough B12 in a B complex. Also they were not B12 strips - but lozenges - that I mentioned. Depending on your D3 levels - I think you could take more than 2000 IU's.

OK so you are smart about your vitamins and minerals so I will now * shut up * :-) :-)

Your low FT3 could account for your gut issues - as there are the second highest amount of T3 receptors in the gut after the brain. Try being gluten free - it could well make a difference .....

dgleds profile image
dgleds in reply toMarz

I take more cal/mag cause i dont think i get it enough from my foods...I dont do alot of dairy etc...Natural B's you might not get enough of some things, so you likely have to use synthetic B's to get the higher doses of stuff...(Im probably ok, I pee most of it out dark yellow)...

I just take the amount of D3 or less the Rhumey told me to take...Years ago they told us the total amount you could only ever take was 400, they keep changing stuff....Sorry lozenges/not strips...

;)

greygoose profile image
greygoose in reply todgleds

Yes, eating lowers TSH. So, a non-fasting test would give you a lower TSH than a fasting test.

Also, TSH is highest early in the morning, and lowers throughout the day. So, did you have both tests done at the same time of day?

So, if you want your TSH as high as possible - because that's all doctors really look at - then have a fasting test as early in the morning as possible.

You do seem to have a conversion problem - your FT3 is lower than your FT4 in their respective ranges. It should be the other way around.

Conversion problems can be caused by all sorts of things : low calorie intake, nutritional deficiencies, infections, low cortisol, high cortisol, low HGH or just having Hashi's. Which is why we always recommend that people get their nutrients tested, and avoid low-calorie diets - they won't make you lose weight, anyway, and will probably make you put more on!

dgleds profile image
dgleds in reply togreygoose

Probably low calorie back in the summer...I was dieting a bit, but not super low..i lost 12 pounds...

greygoose profile image
greygoose in reply todgleds

OK

Say6 profile image
Say6 in reply togreygoose

Hi greygoose just try to find out aboutthis blood test that i have done my tsh is3.44 an ft4 is 0.77 anFt3is2.24 the endo said one of the blood work was low an maybe is because i am over medicated i was on carb for the past 4month nine carb a day i am hyper what you think really would like your imput thank you

Say6 profile image
Say6 in reply toSay6

Me again she cut my med down to 3pill once a day

greygoose profile image
greygoose in reply toSay6

Say6, I'm sorry, I know nothing about hyper. And, in any case, it's impossible to comment on your results without the ranges.

So, why don't you post them in a new question, and someone who does know, can answer. :)

Say6 profile image
Say6 in reply togreygoose

Dont have the rest of the result

Redditch profile image
Redditch

Hello. My TSH was 0.03 and went to 5.67 in a week when I was sick and cut my meds down a little bit. Sensitive, that's what you are. It shows that on 100 Synthroid your TSH is going up. GP wanted it 0.8? Go back on 112 100 alternating, don't tell the GP, and don't take your meds for two days before the next blood test.

I don't know what your weather is doing but as it gets colder I need a bit more. I up the vitamin D in the winter too, it's just harder work for the thyroid with less natural D and colder temperatures. Your GP is fixated on a range, you are not 10000 people, you are one and your TSH can't hold still on 100. So you need either 100 112 alternating or 112. You know how you feel. Good luck.

dgleds profile image
dgleds in reply toRedditch

Redditch,

I think the alternating sounds better too...

I just read something about winter and spring and thyroid needs....The way GP are here now, I might just have to do my own thing.....I cant discuss much with her....she also said yearly physicals are a thing of the past now...go figure...(I live in BC canada...

Thanks for trying to help me :)

Katepots profile image
Katepots

Hi,

They absolutely need to check your antibodies for Hashimotos as it's an auto immune disease (common) so different steps needed than just being hypo.

You can insist, don't be fobbed off.

I didn't even know about Hashimotos so wasn't tested for years and years so I was really unwell and now having a struggle to get better.

K

dgleds profile image
dgleds in reply toKatepots

Here in BC doctors wont listen..i even got told off for asking for a yearly physical today...such a joke...GP actually said," i can tell your healthy by looking at you"...Ahhh nope, you cant see inside me GP person...Ive met some real odd gp lately...they are coming from far away places, as we have a shortage here in BC canada...Due to cutbacks from gov., they may be told not to perform tests so much or something..or so it seems...

Thanks Katepots :)

The struggle here lately is the bad medical system...doesnt make u feel very confident about stuff at all...

Katepots profile image
Katepots in reply todgleds

Sadly it's the same here. They intimidate us but should really be there to help.

I've found the phrase

I really don't want to insist but I will be holding you personally responsible and making a complaint to your medical board if I'm found to have...

Hashimotos in this case. Stress it's hugely common in thyroid patients and auto immune.

Grrrr

X

dgleds profile image
dgleds in reply toKatepots

Ya i mentioned hashis to the gp i had last year (she went back to africa)...she laughed and said, "You been hypo for too long to have hashi's, then did nothing)...

Then i was given over as a patient to another GP that came from somewhere else to BC...He was a real jerk...said no such thing as mild lupus, and was super rude!!!! I heard him speaking with others same way, and he was reported often....He is still at the same office, but i was very lucky to get out of having him for my GP...So now i have this lady from Russia...

Katepots profile image
Katepots in reply todgleds

That's awful I was probably hyper as a child looking back then diagnosed hypo in my late twenties early thirties then this year at 49 I asked for antibodies to be checked as I read about Hashimotos on here and hey presto! Now gluten and dairy free and on NDT, feel much better and cholesterol down from 6.9 to 5.4 in a few months on NDT!

GP wanted me to have statins, idiots!!

dgleds profile image
dgleds in reply toKatepots

yes..its hard to feel confident in many of the GP...even some specialists i question...I notice they give pills out fast....15 minutes in the office, then shoved out the door...

dgleds profile image
dgleds in reply toKatepots

one girl told me she has hashis, but the gp would not check her, so she went to a naturopath out of town, that sent her to lab...BUT it cost her mega, and i dont have the $$$...

Katepots profile image
Katepots in reply todgleds

Yes I got private labs in the end.

Just say you will hold them personally responsible if they don't test you and you turn out to have an auto immune disease. That's likely to get the ball rolling. Or have a chat with the practice manager and make out you're really worried.

Good luck.

dgleds profile image
dgleds in reply toKatepots

I think the office manger will hear from me if things go weird...I had good results with her before...BUT what a lot of crap to go thru just casue you want to take care of yourself...

maggiesloper profile image
maggiesloper

Dont forget there is also a daily rhythm to your thyroid levels so if you take your thyroxine at the same time every day but your blood samples are taken at opposite ends iof the day e.g. 9am and 5 pm, then this may explain the apparent fast change or variation in levels

dgleds profile image
dgleds in reply tomaggiesloper

no..i did test same time of day, but one time i was doing a 10 hour fast casue it was all my blood work also being done...Maybe the fasting might have made a diff to just a normal walk in tsh test..no fast...

Thanks maggiesloper :)

Clutter profile image
Clutter in reply todgleds

dgleds,

Fasting makes a difference. TSH drops after eating and drinking.

dgleds profile image
dgleds in reply toClutter

I thought it might...

Thanks Clutter;)

Maldives2016 profile image
Maldives2016

thyroidconnectionsummit.com...

Check this out, good luck!

dgleds profile image
dgleds in reply toMaldives2016

thank you

whispers60 profile image
whispers60

Firstly, you shouldn't be taking extra calcium with d3. just vit kmk7 and magnesium.

Was the time soan between changing your neds and having a re test just a week? if so I personalky wouldn't be increasing my meds again yet. I leave between 6/8 weeks before a re test, not sure why the doc would retest due to tummy issues though.

If you have a thyroid gland still then this can often still have flares where the t4 is secreted by the pituary gland to encourage the thyroid to work, this too could be a possiblity with the decrease in t4 meds

dgleds profile image
dgleds in reply towhispers60

Im not sure why either...I bet she wanted to see if it was getting slower, or if it may have switched to fast way..&.giving me the running to the loo issues...

dgleds profile image
dgleds in reply towhispers60

Isnt it bad to take magnesium with out calcium? You take one half as much in strength though...I dont know vit kmk7...is that a thing they give new borns ?

whispers60 profile image
whispers60 in reply todgleds

vitamin k takes the calcium ( which is increased by your intake of vit d) and moves it to the bones and teeth etc, without it, and on a high dose it will just sit in the places it shouldn't . Thats why you shouldn't take extra calcium whilst on vit d

Eddie83 profile image
Eddie83

TSH moves around quite a bit. That sounds normal. But how do you FEEL? If your doc is diagnosing/treating only by TSH and you don't feel well, then you need to do the full thyroid panel TSH/FT3/FT4/rT3/TPOAb/TGAb and check key nutritionals like Bs, D3, iron, selenium. I think it's safe to say that, at the age of 60, you probably are not converting T4->T3 well enough, to feel well. If you have never had your antibodies (TPOAb, TGAb) tested to see if you are nursing Hashimoto's (the most common cause of hypothyroid), then your doc is borderline incompetent.

dgleds profile image
dgleds in reply toEddie83

She wouldnt even retest my t3 over, which was sitting right near the edge of the test line last time...3.7...(3.4 i would have been out of bounds..lol) WE seem to be getting some real idiot doctors lately....or she has been told to cut back on testing for everyone, as our government has cutback for schools, health care, ferry business etc...

Eddie83 profile image
Eddie83 in reply todgleds

Sounds like you will have to go to private testing.

dgleds profile image
dgleds in reply toEddie83

well...one day if i can afford it ;)

MrsBeasley profile image
MrsBeasley

I live in BC so please don't paint all doctors here the same. I have an excellent GP who is extremely proactive and sent me to an endocrinologist immediately when they found the pituitary problems and then got me a second opinion with a second endo last month because the first one was ignoring my thyroid.

I am not sure why you're on meds for thyroid without ever having seen an endo because my GP won't prescribe anything relating to my endo system (pituitary or thyroid) until an endo sets up the initial dosing. Did you see one for awhile and then get released to GP care? If you don't see the endo for over a year, you need a referral back. If your GP is resistant, you need to push for the referral. The squeaky wheel gets the grease they say.

dgleds profile image
dgleds in reply toMrsBeasley

You are very lucky you have a good GP in BC, casue you dont hear many people say that anymore...Nope never been to an endo ever!!! I have been hypothyroid since about 1998 too...That GP made me wait a whole year before he gave me the thyroid meds too, so 35 pounds later and feeling like crap (and trying to look after a young daughter back then as well)...I at that time was able to see another different GP for help, but you cant do that now!! Now you have to stay with the GP you get! My GP would not even retest my t3, and its sitting on the edge...or was, casue who knows, she wont retest it!!!! I got paperwork to have my tsh retested in 6 weeks, but meanwhile she wrote a prescription out for synthroid 100mg for a whole year!!! PS/ all the good old doctors have retired or are about to in BC...I have met some good student gp passing thru...I bet they dont stay here...

MrsBeasley profile image
MrsBeasley in reply todgleds

I switched GPs in October last year. It takes some work to find one but you can switch. Mine is in his 40s and just came here from Ontario to work. Despite his age, he is a new doctor who didn't go to medical school until his 30s after he saved the money to do it. I originally saw him in a walk-in clinic and kept pestering him to take me on because my old GP was useless. I also had a lead while in the ER to another doctor that was an ER doc heading to private practice and they called me in December but I already had set up with my new dr. So you can switch but you have to find a doctor yourself. There's a list available of all doctors taking patients as well. I believe it's through the college of physicians and surgeons. Google it and you should find information.

I started with thyroid problems in 1989 when I was in high school. Saw an endo for years and then was released to my old GP who took me off meds around 1998. In 2004 I had half my thyroid removed after a year of trying to convince my GP something was wrong. There was, a massive tumor growing inwards instead of out. So because he couldn't see it like my original goiter he said nothing was wrong. And he was one of the good old boy doctors. Then he wouldn't send me back to my endo for follow up annually so I didn't see an endo again until this year when the new GP sent me.

dgleds profile image
dgleds in reply toMrsBeasley

not too many offices in my town(not in the city)....I had to wait 2 years after my GP went back to Africa to get another Doc...Meanwhile i was seeing whoever would see me in the medical clinic...They even had student GP helping out (some of them were very good)...So when a new GP would come finally, you would get put with them...(Like them or not)...I didnt like my guy at all....The head of the clinic took my complaint, and said she would put me with next available GP that came... This Gp is a tad better, and a lady...I win some and i lose some, i guess...

dgleds profile image
dgleds in reply todgleds

ps/i once was told i had a lump on my thyroid so they did ultra sound, and use to feel it etc...Then they said we were wrong, just lots of little ones,,that was it...I use to remind them, but they just seem to blow it off...

MrsBeasley profile image
MrsBeasley in reply todgleds

I am not in Vancouver either but we do have endos here. Maybe you don't and would have to travel so they don't feel it's worth sending you.

The cystic nodules can change. I had an ultrasound in December and was sent for biopsy at the hospital. Had that in April with the pathologist right in the room looking at them under the microscope as the doctor was removing the samples under guided ultrasound. One of the larger ones seen on the December ultrasound had shrunk by April and they biopsied what was left and it was fluid. The solid ones were still the same size but the fluid ones can change.

They can only biopsy them if they're a certain size so your ultrasound may have indicated they were too small.

dgleds profile image
dgleds in reply toMrsBeasley

Well no, no endos here, but where i lived before they could have sent me easily...40 minute ferry ride, and 45 minute car ride or even less...but they never did..

Ya, the nodules must change pretty fast for sure...

mistydog profile image
mistydog

I haven't read all the replies but several things occurred to me. Firstly, on those results you weren't over medicated. Your TSH was below range, but that isn't the same thing. By your other results, you were actually under medicated, as your Free T3 was still very low and your free T4 was not optimal either.

Lots of research, and perhaps a change from synthroid and the right supplements.

dgleds profile image
dgleds in reply tomistydog

I asked gp to retest my t3 and t4, but she wont...They are not helpful at all...I can retest my tsh in early December, and if i feel crappy...I will be paying her a visit...

mistydog profile image
mistydog in reply todgleds

Most of us just get private testing done, since the GPs don't really understand the results anyway.

dgleds profile image
dgleds in reply tomistydog

I know...wish i could do that, but i just dont have the cash...

mistydog profile image
mistydog in reply todgleds

See what you can give up for a bit. It's a question of not being able to afford not to.

dgleds profile image
dgleds in reply tomistydog

Well im on disability and its pretty low income...Id have to take a ferry either way, there and back...and maybe even stay in a hotel...no can do...not now anyways...

mistydog profile image
mistydog in reply todgleds

I don't know if the disability is related to the hypo and not my business, but it might be helped by being on the right meds. I am referring to the fingerprick tests that you can post to the labs.

dgleds profile image
dgleds in reply tomistydog

Im in BC canada, so have to find one of those labs...A good reliable one...

No the disability isnt from the hypothyroidism...

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