just wanted to see if everything is normal…. - Thyroid UK

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just wanted to see if everything is normal….

Tiff567 profile image
13 Replies

good morning, or afternoon….

I’ve only been dealing with hypothyroidism a short time, most just feeling exhausted, at the beginning had many other symptoms and of course weight is an issue. I am attaching two screenshots. One is my last TSH results, as those are the only tests my GP would do. Yesterday I had tests done on my own and those are the screenshot on this post. Does everything appear normal? Thanks in advance.

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Tiff567
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Tiff567 profile image
Tiff567

oops sorry only one screenshot posted, here is the second.

Results
Charlie-Farley profile image
Charlie-Farley

Hi Tiff 🤗♥️

I’ve just read your previous post. If you get chance write your bio and just check every now and again to make sure it is up to date. Forum members do look at bio to get background to inform an opinion. We are lived experience, not ‘qualified’, however I didn’t get well as a result of doctor’s wisdom.

So I would be completely unable to comment on your results- without knowing if you have any symptoms, what medication you are on and how much, do you have any other conditions, are you on anything other than thyroid medication? Also vitamins and minerals need to be good in range they are an essential part of the picture.

There is an absolutely brilliant video on here today I’ll pop off and pop the link below. It’s functional Doctors- every ‘conventional’ doctor should be made to watch…..

Charlie-Farley profile image
Charlie-Farley in reply toCharlie-Farley

youtu.be/TzKPHrUKhlE?si=Dd8...

Just Brilliant!

Tiff567 profile image
Tiff567

I began about 2 years ago with being real tired and struggling with weight. Hair loss also. Eventually the doctor put me on 25 mg of levo. At that point my THS went down. 2 months ago, I stopped the levo on my own, mainly because I wanted to try a thyroid supplement instead. So on the current retest, THs is still about the same. I have more energy, my hair is growing in thicker. So I feel that the supplement is doing better for me then the levo. The most recent test was the first I’ve ever had everything done because the doctor, you know, don’t want to do that. (I’m in the US). I was able to at one point to get some vitamins checked and only thing that was low was vitamin D.

I’m just curious if my current numbers indicate all is well or if I need to look more deeply. Or if taking the supplement instead could be a problem long term. Any suggestions or insight is appreciated.

Charlie-Farley profile image
Charlie-Farley

Well Tiff unless you are a 2 1/2 stone person 25ug was never going to be enough- had the doctor left you on that all that time 😱?

You know that once the feedback loop is interrupted by thyroid medication they need to titrate you onto a FULL therapeutic dose. They are not topping you up. There is a guide (and it is a guide not an edict) for Levothyroxine dosing of 1.6ug per kg. My therapeutic dose is 150ug. My TSH is well below range but both FT3 and FT4 are in range (the actual thyroid hormones). TSH often doesn’t agree with symptoms. If the doctors had gotten their way I would have stayed on a dose 50% of what I needed.

If you read my bio I go into more depth on some of the common misconceptions doctors have. I have written it as a case study.

But they have ALL been trained to do the same (wrong) thing so by virtue of this they presume that they are right.

You will need to be vigilant about vitamins and minerals and a good balanced diet. This is discussed at length on the video. Honestly it is so on point for you.

You may be able to cope off medication if your hypothyroidism was really thyroiditis that you have since recovered from. The other possibility is over the next few weeks and months you will drop back into a hypothyroid state. Please be careful.

But if you are feeling better AND hair is growing back are we to ignore this and just look still lab work???? Lived experience teaches us we are all different.

How long have you been off thyroid hormone and what supplements are you taking. Was 25ug as much as you were ever given 😳?

There is something called thyroiditis and this can leave a person hypo for a period of time or permanently.

If you look on the Thyroid UK site there is a load of info on different thyroid conditions.

Sometimes people with thyroiditis are mistakenly diagnosed with Hashimoto’s.

Sometimes people with Hashimoto’s, when it goes into a hyper swing, are wrongly diagnosed with Graves.

Apparently central hypothyroidism is rare. But I wonder if it is just rarely diagnosed. If they aren’t looking for it they aren’t going to see it are they?

Also nothing is mutually exclusive- a person could have a sluggish pituitary and Hashimoto’s for instance. My TSH has never been particularly high- I do wonder sometimes 🤔

There is an awful lot to consider here and if you can come back to the few questions I posed this will help tremendously. Sorry I’ve got to go to bed. I turned into a bloooming pumpkin about an hour ago would you believe it! 🎃 👍

I’ll check back in morning 🤗

Tiff567 profile image
Tiff567 in reply toCharlie-Farley

There sure is a lot to consider when it comes to thyroid health and I have read a good bit on here. But let me not forget to thank you for your well thought out reply. And I do hope you slept well….. as you will be reading this much later then I’m writing.

My blood test results seem to me to take Hashimoto’s off the table. I wish I had gotten those tests a year ago but just never got to it. When I had my first TCH test and it was in the 5 range, I began to look more into thyroid info because a part of me wondered if maybe my symptoms were NOT thyroid related. Why? Because I had also had some trauma (death of child) so yes, I was depressed, tired, gaining weight, stressed (stress causes hair loss) and of course we had the pandemic.

Yes indeed, I’ve always just been on 25 mg of the levo.

For most of the past decade my diet has been very minimal gluten, I often go months without it. Very small amounts of sugar. But I will say the past couple months I’ve been eating a little more sugar. Oh wait, that’s a little white lie. Haha I’ve also been eating a little more gluten. All while taking the supplement and not the medicine. The supplement is the beef thyroid from ancestral. Please note I am not advocating the company or the supplement. Everyone has to take what they feel comfortable with.

Based on how I feel, and my blood results, does it seem positive? I read your sentence about this possibly being temporary and sadly I know that is something to watch for. But it’s nice to not need a nap everyday. It’s nice when I realized my hair was fuller and the area by the temples are filling in. I do not feel so down, though this time of year is hard, not to mention my 16 year old mutt just passed. But in general I am dealing with it all pretty good. I am going to buckle down with the diet and eliminate all dairy and sugar and gluten as in the past, that combo has helped me drop some weight. Of course exercise too. 🙄 No, that doesn’t excite me. lol

Thanks again. I know it is the holiday so will patiently wait for your reply.

Charlie-Farley profile image
Charlie-Farley in reply toTiff567

Hi Tiff

I’m so sorry for your loss. 😔 Losing a child must be just about the worst loss one can experience. We are sad, but accept the passing of older relatives, it is the natural order if things. But not a child…. This shock would have had a profound effect and could have triggered the thyroid issues. I certainly wouldn’t take the thyroid issue off the table if you are supplementing with beef thyroid. And if it is working for you and your hair has grown back then stick with it. Hope you get to watch the video as I think it will resonate with you.

You might yet have Hashimoto’s. So apparently 20% of folk never have detectable antibodies in their blood. So the diagnosis relies on symptoms and a scan of the thyroid picking up the physical changes and actual thyroid hormones FT3 and FT4 being low or below range Oh and TSH (least reliable measure).

Your doctor was utterly clueless and dangerous and was grossly under medicating you, to the extent that you would have been better being left with what your struggling thyroid could produce, than being on a child’s stater dose (or someone over 60 with a heart condition).

If you read my bio I go into the full explanation- I wrote it so others could read as a case study. I was made incredibly ill by a doctor doing this to me and yet my blood results did not reflect the gravity of symptoms. Could my pituitary be ‘off’ too? Who knows, but it speaks to the need to work with symptoms, to only use blood work as an aid to understanding and not put to much faith in what they are telling us. I call the TSH the false profit. I’ve made other posts on self advocacy, how doctors frequently don’t know how to read the results etc and explain why. My bio relates to getting a therapeutic dose of levo , but there are other treatment options out there and we should go with what works for us 😉👍 especially if the hair grows back!

Edit don’t be too hung ho on the exercise- it can have a counter effect.

Confused01 profile image
Confused01

No cortisol blood, test?

Tiff567 profile image
Tiff567 in reply toConfused01

I had that checked a year ago and it was good.

Confused01 profile image
Confused01 in reply toTiff567

Always worth a yearly recheck.

FallingInReverse profile image
FallingInReverse

Hi there Tiff567 ! Just came across this and wondered how it’s going.

The minute I saw T3 Uptake and Total T4 on your results I knew you were a fellow American : ) Those tests are actually useless and outdated, but seem to be what they do off the bay.

If you have insurance, it’s generally very easy to ask for a blood test prescription for what you need, you just have to ask and tell them EXACTLY which ones.

A compete picture of your thyroid health comes from these tests, all done together ideally around 9 am fasting:

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7)Vit D3

And these two antibodies at least once:

3) TPOab

4) TGab

I’m not clear on what hormones/supplements you’ve taken or are taking, but I’m curious on sequence and timing especially in relation to the blood test results.

Are you feeling 100%?

Tiff567 profile image
Tiff567 in reply toFallingInReverse

I feel pretty darn good. Rarely take naps, hair still growing in good, more energy, good moods, ect. But my true test will be to see results when I get my next blood test. That’s not till May. For now, I’ll go based on how I feel. And right now, I’m not changing anything. Thanks for the follow up.

FallingInReverse profile image
FallingInReverse in reply toTiff567

Awesome !!!!

Please do ask for all the ones above, tell them they can skip the total T4 and T3 uptake.

I love reading your turnaround, and also love seeing when that’s combined with no antibodies.

But if in the future it rears its head again you will be grateful if you have a full thyroid panel reflecting your levels when you feel good. And if you have regular US-style employer subsidized health insurance , it shouldn’t cost you much of anything.

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