New thyroid suffers don’t stand a chance with a... - Thyroid UK

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New thyroid suffers don’t stand a chance with advice like this.

Peanut31 profile image
17 Replies

Hello

I’ve not posted on here for ages, as up to now, I’ve been feeling fine on my current dosage of NDT and Levo.

However, I’ve recently noticed I’ve started to develop some symptoms of feeling cold, fatigue, brain fog, memory loss, tearful, anger etc.

whilst I know some people say blood tests are irrelevant on NDT, I have also managed to be guided by them.

I’ve been suffering other symptoms not related to thyroid, but, what I think is peri menopause. However, thought it would help to see where my thyroid levels were at. I had covid in December 2019 and I still can’t taste much, but, smell is coming back slowly, my period have changed since covid too, so my body is taking a hit at the moment with everything going on internally.

I always take my bloods the same method, as in time I take then, timings of my NDT and levo to make it consistent to compare on past results.

I also asked for NO comment from a doctor, as I know what I’m doing and I know I can always ask for help and support here.

Well, I got my results and can see the issue, but, I’m livid at the advice the GP has given based on my results. It’s the opposite of what i need to do.

I’m livid for all those thyroid patients that don’t have the knowledge that I have gained from this forum, and or don’t know about this forum. If I took there advice I would be in a worse state than what I’m in now.

I feel like contacting the company pointing out the out of date guidelines they are giving. Haven’t we learnt anything at all.

if I do contact them, what’s would be the best information to send them.

I have attached the GP’s comments from my results and my results are:

TSH 0.02 (0.27-4.2)

T3 4.79 (3.1-6.8)

T4 13 (12-22)

I need to increase my thyroid levels being my T4 and T3, results, so I’ll add a bit more T4 to my NDT, as I can’t add too much NDT as it sends my T3 too high, I’ve tried all that before when experimenting to hit my sweet spot. It appears my body is going through some hormonal changes and I need to tweet my thyroid medication.

The next hurdle I’ve got is having my yearly thyroid check with my GP soon and also speaking to my GP about my peri menapause symptoms, which I know will fall on deaf ears.

Apologies for the rant.

Best wishes

Peanut31

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17 Replies
SlowDragon profile image
SlowDragonAdministrator

Please do contact them and complain

We have had several members been given totally inappropriate comments by Medichecks “doctor “

Peanut31 profile image
Peanut31 in reply toSlowDragon

Hi SlowDragon

I definitely will complain, but is there anything I can quote to them from a medical perspective?

Best wishes

Peanut31

Alanna012 profile image
Alanna012

It's really bad. I think medichecks in particular are dreadful for their advice.

I think writing to them is wise, but on the other hand I think the doctor just does quick evaluations and goes through a stack of results and hasn't the time for better.

Framboise profile image
Framboise

Yes do complain to them - I've had similar comments from that doctor and ignored him, but in retrospect I should have complained. I was actually rather annoyed with my last experience of Medichecks for other reasons too, and will probably use a different company next time.

dtate2016 profile image
dtate2016

You can complain but it really won’t do any good if they’re anything like the doctors here in the US. Nothing will change. And you’re right we have to do the research ourselves that’s how come we know what to do and they don’t. My experience is that menopause does affect Hashimoto’s. In my case it was for the better. I needed less and less hormone replacement - and I was taking both NDT and levothyroxine.

It was also about this time that I removed excess iodine from my diet. Primarily by the removal of iodize salt which is a staple here in the US. (It is not possible nor desirable to remove all iodine from your diet.) It is possible to lower iodine, by eating foods that are less rich in iodine. (an overabundance of iodine is cumulative and for some of us who have poor elimination of toxins the iodine itself builds up and becomes a toxin)

Since menopause and lowering iodine I have been able to cease taking all forms of thyroid hormone replacement for over 18 months now.

And yes, like you I learned much from this forum but what I learned more than anything was to keep searching until I found what worked for me.

I was never a believer that diet could cure Hashimoto’s but I am now. If not cure it can greatly reduce the autoimmune attack on the thyroid. I do believe menopause is a part of it as well. (and then there’s a hormonal reason why women are more prone to Hashimoto’s then men - it has to be estrogen) One school of thought out there is that a third of all people with Hashimoto’s “resolve” on their own over a period of time. That’s a wide-open field of possibilities but I believe it’s true as well. I believe a source of over abundance of iodine comes from our modern diet, and it’s hidden.

Trust your instincts on the menopause idea you’re on the right track.

DippyDame profile image
DippyDame

The usual mistake....focus on TSH alone!

No mention of the Frees

Not surprised you are livid.

You could try quoting this excellent paper

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

Background

In the treatment for hypothyroidism, a historically symptom-orientated approach has given way to reliance on a single biochemical parameter, thyroid stimulating hormone (TSH).

The first author is TUK's diogenes ....and all are renowned in their field.

Good luck with your GP...you may need to educate him/her too!

Glad someone else rants!

eeng profile image
eeng

I wouldn't be surprised if the doctor's comments were produced by a computer, which had been programmed to give that comment for low TSH regardless of FT3 and FT4 levels.

RButus profile image
RButus in reply toeeng

I agree, eeng, it was my first thought, and is only alleged to be from an actual doctor. It's the program.

jamesal0 profile image
jamesal0

when I feel cold in the middle of the night occasionally - I take 25-50mcg Levo and come good within 30-60 min. Normally just means I haven't taken enough NDT that day. Like I was sailing in the cold wind and burnt all NDT T3 and 4. I find my temp swings a bit on NDT too and is rock solid on Levo. But Levo drives me nuts in 20 other longer term ways.

buddy99 profile image
buddy99

I just posted a research link on a different subject and one sentence that stuck out to me was "Despite low TSH and free and total T4 levels, and high free T3 levels, there was no evidence of thyrotoxicosis." It looks like, unless you go totally overboard, you could actually try whether increasing both T3 and T4 is helpful. You are only at about 46% of T3 within the reference interval. There should be some upward space.

Poniesrfun profile image
Poniesrfun in reply tobuddy99

Could you please include the link? Thank you. Patti in AZ

buddy99 profile image
buddy99 in reply toPoniesrfun

Oh my, my brain is also fogged :D I don't have the link right now (I'm at work). But I will try to remember to put it out tonight. Sorry about that.

buddy99 profile image
buddy99 in reply tobuddy99

Actually found it here. So here it is: tandfonline.com/doi/abs/10....

Poniesrfun profile image
Poniesrfun in reply tobuddy99

Awesome! I think all of us who wake up cold in the middle of the night and find that taking some T3 lets us get back to sleep, or that when we get achey or sore and T3 sets us right kind of already know this. It's a shame the article is a bit dated (lots of tine for the anti-T3 folks to try to debunk) and hopefully there's been more that followed on. Thank you for this!

Patti in AZ

buddy99 profile image
buddy99 in reply toPoniesrfun

Hahaha! Yeah, it is dated but so is the TSH. We can pick and choose just like docs do. ;)

dizzy864 profile image
dizzy864

Hi, I always ask for a printout for any blood tests I have done through my gp. I am also angry that the comment next to my TSH result is that I may be over medicated as this is suppressed.I did some investigation on the name next to this comment as it was unfamiliar to me and I did not believe that it was anyone at my gp surgery. It turned out to be a lab technician!!

I am lucky in that my gp ignores this advice. I am on levo and lio. My tsh has been suppressed for over fifteen years - since I was optimal on lio!! What right does a lab tech have to advise any gp on the appropriate treatment?

buddy99 profile image
buddy99 in reply todizzy864

Yeah! Really!

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