Test results advice... Impending doom and how ... - Thyroid UK

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Test results advice... Impending doom and how to avoid it?! ..

MrsClanger profile image
39 Replies

Advice appreciated on where my T3 is at now.. I think half way so it's good?..I actually feel great again now I upped my dose..

I'm prescribed 10 mcg, but am buying 25 mch tablets splitting them into roughly 5 and taking a approx 5 mcg top up in the afternoon.

My Gp spent half an hour on the phone trying to convince me to reduce my T3 to bring my tsh back.. As its been undetectable pretty consistanty.. I kept refusing and trying to explain my symptoms and he literally told me I'm going to die of a heart attack and get osteoporosis..

Osteo called and says he's worried about my bones as my dexa scan results last time were worse than the ones before. They still say oesteopenina.. Not perosis yet.. the dexa scan dept won't test again yet , I think it's about 9 months till I'm due for another dexa scan.

Neither gp or endo are bothered that I feel soo much better on this dose or that i am actually able to have my afternoons back now.. Or that I've started loosing the 20 pounds I gained when i reduced my dose to try reduce the tsh for them.. Which didn't work.. I just got fat again and couldn't breath properly.. Very fatigued, cold and depressed..

Neither would offer me any advice on what I can do to minimise the risks they are saying I now have.. They only wanted to inform me of my impending death and document my wishes to overdose myself...

Even on the reduced dose my tsh was undetected so it made no difference to the risks they keep talking about.... They don't even recognise I have an improvement in the quality of this supposed shortened life?!..

I'm convinced this is the correct dose for me.. So I'm sticking with it.

I have more energy.. I sleep well.. I can stuck to my healthy eating as I'm not craving sugar and carbs because of exhaustion..

Anyone I meet says I look better.. I've got chronic hip pain and I am now worried.. But I have that when I'm on the lower dose too...

So.. how long before my bones disintegrate or I have heart failure?!

I take the calcium, mk7.. Vit d zinc and magnesium for my bones..

And b vits & iron..

I'm vegan gluten free.. Minimal lectins.

Any advice on what else I can do to avoid my impending decline and early death?!

Recent test results..

I split my T3 into 3 doses the day before.. Stopped b vits ( actually all vitamins) a week before.. Last T3 dose of 5 mcg at 9 pm. Blood test was 10 am next day.

Taking daily

75 mcg levothyroxine & 10 mcg liothyronine at 8 am.

& 5mcg liothyronine At 3-4 pm

( Total daily = 75 levo & 15 lio)

Tsh 0.01

T4.. 18.4 ( ref 11.10-22)

T3.. 5.1 ( ref 3.1.- 6.8)

(( last tests when they remembered to test T3.. I was on 75 mcg levo and 10 mcg lio.. But I didn't split dose day before. I was feeling awful at that time..

TSH 0.01

T4 =18.3 ( ref 11.10-22)

T3 = 4.2 ( ref 3.1 - 6.8 )))

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MrsClanger
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39 Replies
greygoose profile image
greygoose

Not a good idea to take calcium supplements. They are very poorly absorbed and tend to build up in the arteries and the soft tissues. Did you get it tested before you started supplementing? And when was the last time it was tested?

How about vit D? You need optimal vit D for good bones. And, if you take vit d you increase the absorption of calcium from food, so I doubt you need the supplements.

Anyway, it's a myth that we need lots of calcium for good bones. We need some, of course, but too much can have the opposite effect and make bones brittle. But, doctors know nothing about nutrients. They know nothing about hormones, either, which is why they go on and on about TSH. It actually has nothing to do with bones and hearts. But low levels of T3 does. You need good levels of T3 for healthy hearts and bones. If only they would take their heads out of the sand and recognise that!

MrsClanger profile image
MrsClanger in reply to greygoose

Hi grey goose :).. Yep I take vit d daily too....I only eat dairy very rarely.. So I assumed it's best to add calcium. When I had the dexa scan they said I need to take calcium and vit d. I'm not sure what my most recent level of calcium was .. I'll check .... Whats the ideal level on the nhs range for calcium?

greygoose profile image
greygoose in reply to MrsClanger

Oh, doctors always say take calcium! But, they know nothing about nutrition. They have no idea. So, as a general rule, never take dietary advice from a doctor!

It's not just in dairy that one finds calcium. All sorts of veggies contain it, and nuts, and all sorts of thing. We've just been brain-washed by Big Food to believe that we need lots of dairy for strong bones, and it's just not true.

The range for calcium is very short, so if it's in-range then it's probably good. It's when it goes over-range that it's a problem.

MrsClanger profile image
MrsClanger in reply to greygoose

OK cool thank you.. Yep I know broccoli has calcium in it.. I'm eating very limited lately.... Will check it out and see if I can do away with the tablets :)

greygoose profile image
greygoose in reply to MrsClanger

Pretty sure you can. And, as the calcium from supplements won't get into your bones, there's not much point in taking it, anyway.

MrsClanger profile image
MrsClanger in reply to greygoose

I thought that's what the k2 vitamin does?.. I've been taking that with the calcium and vit d

greygoose profile image
greygoose in reply to MrsClanger

That works for calcium that comes from food. Pretty sure it doesn't work with the supplements, which are like swallowing rocks.

MrsClanger profile image
MrsClanger in reply to greygoose

Ahh.. OK.. I'll try figure out my calcium from the veg :)

greygoose profile image
greygoose in reply to MrsClanger

This is a good list:

healthline.com/nutrition/15...

But, I would not recommend the tofu!

MrsClanger profile image
MrsClanger in reply to greygoose

Thank you. Really useful :).. I'm going to get me some poppy, sesame, celery, and chia seeds!

greygoose profile image
greygoose in reply to MrsClanger

You're welcome. :)

Jaydee1507 profile image
Jaydee1507Administrator

Free T4 (fT4) 18.4 pmol/L (11.10 - 22) 67.0%

Free T3 (fT3) 5.1 pmol/L (3.1 - 6.8) 54.1%

If you feel OK then thats fine. See how it goes and if you stop feeling so well then retest and see if the numbers have changed and go from there.

I think doctors over state the risks of a suppressed TSH.

MrsClanger profile image
MrsClanger in reply to Jaydee1507

Thanks. Yep I feel like it's a massive issue to them.. But I also see a pain clinic and she said they should be considering the fact that if I'm completely inactive that's no good for bone health either

Jaydee1507 profile image
Jaydee1507Administrator in reply to MrsClanger

Exactly. You see doctors have scientific brains and don't usually think outside of the box. They probably haven't even considered what being inactive on too little thyroid hormone would do to your bones, they are just focused on the misinformation that has been fed to them in medical school about your thyroid treatment and suppressed TSH.

MrsClanger profile image
MrsClanger in reply to Jaydee1507

I'll try explain this to the next nagging session I get from one of them :) thanks :)

Brightness14 profile image
Brightness14 in reply to MrsClanger

Just don't take the calcium, simple. 20 years before any thyroid problems I had my gallbladder taken out. It was unusual it was full of only calcium stones, I also had calcification in my groin. This was explained to me by my chiropractor, not a GP.

I had my Vitamin D tested and it was so low it hardy showed up at all.

Years later and 8 years after my thyroid was removed my TSH is supressed and I have been taking Vitamins D with K2 for years. No Calcium I get enough of that from the food I eat. I am 77 years old and my Bones and Heart are just fine. Grey Goose has the right idea.

MrsClanger profile image
MrsClanger in reply to Brightness14

Thanks so much.. I'm looking into vegan calcium foods to eat more. And I'll continue with the vit d & k2 :)

Brightness14 profile image
Brightness14 in reply to MrsClanger

Good luck with your search I am sure that there are plenty of calcium rich food for you to eat.

Sneedle profile image
Sneedle in reply to MrsClanger

Mrs Clanger you're inspiring! I love how you're doing what you feel to be right and refusing to budge with the doctors. And relating it with humour😃Best wishes for you and your bones x

MrsClanger profile image
MrsClanger in reply to Sneedle

Aww cheers :).. That's lovely of you. :)

Alanna012 profile image
Alanna012 in reply to Jaydee1507

Exactly after years sitting inside barely moving when I started to add some gentle exercise back in I realised how unhealthy I had become. I found lifting 5lb weights difficult I had to go down to 3lb! It took months to get some decent muscle strength.

Pretty sure sitting indoors with constant dust mite exposure hasn't helped my health either but none of that would matter to my GP. I say nothing about my T3 they get jittery even when TSH is in the range but lower telling me about my heart, let alone with a bit of T3.

They don't weigh up quality of life much

Jaydee1507 profile image
Jaydee1507Administrator in reply to Alanna012

They don't consider quality of life at all. So long as the numbers on your blood results are in range then all is good with you. Not.

DippyDame profile image
DippyDame

So long as FT3 sits within ref range there is almost no chance that you will be over medicated

As for the doom mongering....this should help

pubmed.ncbi.nlm.nih.gov/269...

Liothyronine use in a 17 year observational population-based study - the tears study

Graham P Leese 1, Enrique Soto-Pedre 2, Louise A Donnelly 2

Conclusion: For patients taking long-term liothyronine we did not identify any additional risk of atrial fibrillation, cardiovascular disease or fractures. There was an increased incident use of antipsychotic medication during follow-up.

Your GP's lack of knowledge about T3 is a disgrace but sadly not uncommon. His knowledge of TSH is little better

thyroidpatients.ca/2021/07/...

I need high dose T3-only to function, my TSH has disappeared....and at 78 my heart is healthy( scan) as are my bones

Don't worry ....listen to your body it will tell you if something is wrong

MrsClanger profile image
MrsClanger in reply to DippyDame

Thanks so much.. Am going to email the info to my gp and endo secretaries

I feel the vegan diet is much much much more likely related to the osteopenia than anything to do with thyroid x

MrsClanger profile image
MrsClanger in reply to

Unfortunately I'm allergic to eggs and get digestion issues if I eat too much dairy.. I have dairy on occasion but if I eat it regularly it makes me feel sluggish and congested.

in reply to MrsClanger

what about meat, fish, shell fish and organ meats?

MrsClanger profile image
MrsClanger in reply to

I have not eaten meat for 40 years.I tried eating fish a few times since but it just tastes disgusting and triggered my ibs.

Sea fish is full of plastics and farmed fish full of chemicals.. Meat packed with hormones and stress, I really don't see the need to put dead things full of toxins and trauma into my body.

I eat plenty of plant based foods high in protein and packed full of nutrients. Hemp protein, Nutritional yeast.. Avocado's.. Tons of fresh fruit and veg..

I just need to research the more calcium rich foods if Im not taking calcium supplements.

Up to you if you like to thrive on death but it's not for me cheers.

in reply to MrsClanger

OK. I can see you are not open to discussing how your diet could be impacting your health and I have enough experience with vegans to know it’s not worth trying. As a nutritionist i will say that I don’t agree with your take that eating meat is “thriving on death” (are you aware of how many lives are killed to grow your avocados?) and I definitely believe your osteo issues are related to being a vegan for 40 years.

Good luck to you.

MrsClanger profile image
MrsClanger in reply to

Please accept my apologies really.. I read that back and it was a bit harsh.... I'd just composed a email to my gp and I was on a bit of a verbal roll.. I just couldnt ever eat meat and I struggle with food as it is.. If I eat things I'm not sure of or find ikky I can't keep it down, and I go bulemic. I find fresh veg and fruit makes me feel energised.. So I just try to eat what makes me feel good..

I'm not a raving vegan.. I just like fresh food and I'm a germophobe.

I get chronic ibs and it's been really difficult over several years years figuring what works and what doesn't.. And so my diet is really restricted and not at all normal..

I'm working on finding plant based foods that are high in calcium.. ( that arnt soya or tofu..) that's as best as I can do right now.

Sorry again if I offended you.. But eating what may be nutritionally right is just not very easy for my brain and digestion.

in reply to MrsClanger

That is OK, I understand diet is a very triggering topic for most people.

I would say you may be doing a disservice worrying so much about calcium. Calcium is definitely important but bones are actually made up by the 12 major minerals + 60+ trace minerals, so it may be more beneficial to investigate and invest vegan sources of minerals, and perhaps because your diet is not hugely varied you have some deficits in there. I’m afraid I am not a vegan nutritionist, so I can’t off the top of my head think of that many sources but I always think that food is much more readily accepted by the body than synthetic supplements so researching foods may be better. Off the top of my head it could be worth looking at -

Fat soluble vitamins that are often low in vegan diets by default, so an organic cold pressed wheat germ oil might cover you well on that front.

Although on the surface plants have high mineral content, accessing those minerals can be tricky due to protective plant compounds found inherent in plants, so a trace mineral supplement from sea water might be a good thing to try.

If you’re having issues with digesting dairy but do feel willing to try then raw milk / raw yogurt is a good option. Because it isn’t homogenized or pasteurized it has many more enzymes that help us to digest it that are lacking from supermarket dairy.

I will think on it a bit more and if I remember anything else I’ll write again.

For what it’s worth, I do not think your osteopenia is related to your TSH so I wouldn’t worry about it being the thyroid meds. And in fact your FT3 is still quite low, which might be contributing to the difficulties you describe in digesting foods. X

MrsClanger profile image
MrsClanger in reply to

Thank you.. This info is much appreciated. I do have kefir yogurt drinks occasionally.. But find it very heavy and prefer almond milk.. I wiill research more and is good to know the tsh isn't the issue.

LucyYoga profile image
LucyYoga in reply to MrsClanger

I must say I totally agree with Hidden that the vegan diet is the issue here. I was vegan / vegetarian for 30 years before hypothyroidism diagnosis and although I believed I was ‘well’ I’m sure my vitamin and mineral levels were on the floor. I had to open my mind a bit as to what the negative consequences of my diet were having upon my health. It’s also pretty rare to get and stay well on a vegan diet when you have an autoimmune disease that necessitated getting enough protein to be well. Amino acids are essential for thyroid hormone production and the fat soluble vitamin like A and D are impossible to get from plant forms.

I eat wild fish and grass fed/ finished / pastures for life meat from a supplier whose farm I know and who has high levels of nurture and welfare.

I think to suggest that Hidden thrives on death is both an extremely rude and Ill informed thing to say.

I too used to be a ‘militant vegan’ but when I got over myself I realised it was more important to have a healthy life than stick to an ideal lifestyle that was ultimately harming myself.

MrsClanger profile image
MrsClanger in reply to LucyYoga

I think there's lots of super vegan foods that people are unaware.of. Hemp contains all the amino acids and high in protein.. I eat 50 G a day..I did apologise to don't forget cortisol.. And I was not ntending it to be a personal attack.. Im not a raving vegan or activist at all.. I just don't like the idea of digesting flesh. I actually believe that some people do need to eat meat and others don't.. I don't dictate my preference to anyone.

MrsClanger profile image
MrsClanger

Just putting this here so I don't loose it.. Others may find it useful.. I love cinnamon and spices..

womenshealthnetwork.com/bon....

SlowDragon profile image
SlowDragonAdministrator

as a vegan you must test full iron panel test including ferritin, B12, folate and vitamin D at least annually

If your taking iron supplements, full iron panel 3-4 times a year

Medichecks iron panel test

Stop iron supplements 3-4 days before test

Test early morning and fasting

medichecks.com/products/iro...

ncbi.nlm.nih.gov/pmc/articl....

Low BMD has been reported to be associated with aging, low body weight, physical inactivity, smoking, excessive alcohol consumption, diabetes, dyslipidemia, and pernicious anemia [5,6,7]. In addition, chronic iron-deficiency anemia has been suggested to induce bone resorption and increase the risk of osteoporosis [8].

ncbi.nlm.nih.gov/pmc/articl...

Look at increasing iron rich foods in diet

Eating iron rich foods like pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Presumably you test regularly anyway

Low B12 also linked to osteoporosis

express.co.uk/life-style/he...

MrsClanger profile image
MrsClanger in reply to SlowDragon

Thank you :)

humanbean profile image
humanbean

Regarding osteopenia, this link might be of interest :

Title : How A Bone Disease Grew To Fit The Prescription

Link : npr.org/2009/12/21/12160981...

MrsClanger profile image
MrsClanger in reply to humanbean

Thank you :)

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