Should I try to reduce TSH?: Hello everyone I've... - Thyroid UK

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Should I try to reduce TSH?

DonnyJam profile image
22 Replies

Hello everyone

I've just called the doctors for my most recent TFT result (TSH only) My TSH was 1.27 at levo dosing 225mcg and is now down to 1.02 at 250mcg.

For the most part my symptoms seem much better. The main symtoms I still had at 225mcg were blurred/double vision and hot flashes but the increase in levo to 250mcg seems to have reduced those to a lot less. I still get blurred vision but much less often and the hot flashes seem much better, I also went gluten free around the end of January so that could have helped with those symptoms.

The one thing that still bothers me above everything else is the un-controllable weight. I eat healthy and gluten free. Calorie restriction and cardio has little effect on my weight.

It's like before I was medicated my weight gain was massive and now medicated it seems to be stable-ish but at a level that classes me clinically obese.

I'm very uncomfortable with being the weight I am, I feel frustrated and depressed by it...

Can anyone tell me if it would be worth trying to get an increase upto 275mcg which would probably drop my TST to bellow 1.0 (maybe 0.75ish) Is there any chance doing this would help with weight loss?

I have some levo which I sourced myself that I'm very tempted to use to top up my prescription to 275mcg.

I have had a full thyroid test with FT3-FT4 which seemed to show I convert ok.

The results of this test are here but they're from a while ago now when I was on 225mcg

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DonnyJam
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22 Replies
Jazzw profile image
Jazzw

So your results on 225mcg were:

Free T4 14.53 12 - 22 pmol/L

Free T3 4.69 3.1 - 6.8 pmol/L

TSH 3.53 0.27 - 4.20 IU/L

You are converting - but not brilliantly. That FT3 was only just over halfway up the range, and many feel better with it in the top quarter of the range. So my instinct is you probably need another raise to 275mcg.

It's so frustrating that labs won't test FT3 without you going private. TSH tells us so little... :(

DonnyJam profile image
DonnyJam in reply toJazzw

Thnks Jazzw.

Like I mentioned before I do have some levo which I sourced before ready for if I got refused the raise to 250.

I'm thinking I may as well up the dose now because I'm not seeing the doctor till next tuesday and I'm expecting refusal as getting him to allow the raise to 250 was dificult, I had to argue with him for 15 minutes and produce info from thyroid UK, I got the feeling he only agreed in the end because I was causing delays for everyone else waiting to see him behind me.

I think it's disgusting that we have to resort to paying private, I wish something could be done to force a change in awareness and the way we're all treated with thyroid disorders.

gabkad profile image
gabkad in reply toDonnyJam

You could increase, sure. But weight loss has to be accompanied by dietary change. There's no other way around it. Also, someone posted the information about a study that is being done in Israel as regards individual response to various foods (blood glucose). To lose weight without feeling awful, we need to eat the foods that keep our blood glucose relatively level. I was reading one of the articles about this study and there was one woman who got massive blood glucose spikes from tomatoes!!! That was shocking because eating 'salads' is supposed to be healthy! Well, not when there's tomatoes in them for that woman. Another woman got massive glucose spikes from plain yoghurt but not bread.

There were two people followed for their response to banana and biscuits. Totally opposite responses to each of these.

The Israelis are investigating this over the course of a year with hundreds of people because any successful weight loss program needs to be personalized based on each person's response to various foods. (This was also on Trust Me I'm a Doctor...... Michael Mosley)

I know it's probably maybe overly scientific, but having a glucosemeter and testing on oneself, let's say, the usual foods we eat and seeing what happens is a good idea. I'm not diabetic but the other night I ate 3 dried Turkish figs and 15 minutes later my blood glucose spiked to 9.6. 40 minutes later it went down to 6.6. i won't be eating 3 figs at a time anytime in the future. I'll have to check what happens with 1 fig (but who eats 1 fig?) Other foods don't do this. Potatoes only raise it to 7.3.

Even though it can cost money, personalized testing may be the way to go. Possibly because you are obese, the NHS will cover glucose testing strips. Meters are free.

DonnyJam profile image
DonnyJam in reply togabkad

Thats interesting. I could monitor my glucose, I'd actually find it really interesting to see which foods did what.

My diet has changed quite a lot in the last couple of months mainly by going gluten free.

Where can you get a free glucosmeter?

gabkad profile image
gabkad in reply toDonnyJam

Glucosemeters are free. Strips cost money. But if you a slightly elevated HbA1c and are willing to study your own personal situation, your GP may write you a script for the strips.

faith63 profile image
faith63 in reply togabkad

it looks to me that those people have having insulin problems..insulin resistance, actually. I would not be focused on sugar, but how to make your body more insulin reactive.

gabkad profile image
gabkad in reply tofaith63

There's the stuff about losing pancreatic fat. The low calorie weight loss diet for that.

I think the problem with insulin resistance diagnoses and metabolic syndrome is that people are not adequately educated that they are heading in the wrong direction. And then they are diagnosed type 2.

faith63 profile image
faith63 in reply togabkad

drhyman.com/blog/2014/08/18...

i follow this guy.

faith63 profile image
faith63

if it were me, i would be dropping the t4 and add t3. Many on here and all over, drop weight without any diet changes, when they are properly medicated and can get the inflammation down, which could involve stopping dairy and gluten. So i guess that is a dietary change.

I have insulin resistance, it appears as well, so that will keep your weight up, especially in your midsection.

You probably have a high reverse t3 level. At a dose that huge, you are thyroid hormone resistant and /or have some stomach absorption issues.

DonnyJam profile image
DonnyJam in reply tofaith63

I've read a little about RT3 but don't really remember that much about it. Wouldn't I be symptomatic if I had high RT3?

Will RT3 levels reduce if I manage to get on lower T4 and added T3?

Could you tell me what you mean by stomach absorption issues? Most of the weight I can't seem to shift does appear to be around my stomach and chest but it has never really felt like normal fat, it kind of feels like their is a big bag of fluid on my stomach.

faith63 profile image
faith63 in reply toDonnyJam

that is probably myxedema..not fat. Or, you are insulin resistant too, like me. From being hypo. we accumulate mucin and other fluids. I have it too. Do you have hashimotos.. why are you hypo?

The thyroid labs, don't show what is happening in your cells. They show what is free, unbound, in your body, for your organs to absorb and use, not weather or not, we are absorbing them. When we are inflamed, from autoimmune and hypo, we don't utilize our hormones very well.

That is a large dose of t4. I mean the stomach not being able to absorb the levo. Were is all that t4 going? Your TSH does indictae some under medication.

DonnyJam profile image
DonnyJam in reply tofaith63

My thyroid antibodies were very high on that blood test I posted so I'd be pretty sure I have hashimoto's and that's why I decided to go gluten free. When I first started out on thyroid meds I thought I'd just have to get the right levo dose and everything would be back to normal but now I see it's all beyond complicated.

God knows where I need to go from here, it's unbelievably frustrating 😟

faith63 profile image
faith63 in reply toDonnyJam

i know!! We are in deep trouble and the doctors know nothing. It is not ok with one little pill. Then they say we have another, different condition, if the levo doesn't work.

greygoose profile image
greygoose

If your Frees were that low on 225 mcg Levo, then it seems to me that you have a bit of an absorption problem.

Are you on any suppléments? Because your B12 could do with being a bit higher - optimal is 1000. Are you taking vit C? A couple of thousand mg daily could increase your absorption.

Do you suffer from low stomach acid? Most hypos do. And that would affect your absorption, too.

greygoose profile image
greygoose in reply togreygoose

Forgot to say, reducing the TSH in and of itself will not help weight-loss. It's raising the FT3 level that will help. It's low T3 that causes symptoms. The TSH is just a messanger boy between the pituitary and the thyroid gland. :)

DonnyJam profile image
DonnyJam in reply togreygoose

Yeah sorry, I know that TSH is not that important but until now I thought my conversion to T3 was ok so I sort of thought it would be ok to use as a marker and thought another 25mcg of T4 would take me close to the top of all the ranges.

I'd love to think that I can go see the doc next week and get some agreement on dropping t4 and adding in some T3 but I just know he's just going to give me some crap about how my levels are normal and that he already increased my T4 from 225 to 250 when he didn't think it nessesary.

I'm currently taking 1000mg vit c and 1000mg vit b12, I could up to 2000mg vit c no problem though. Would if help if I took my vit c along with my T4?

I haven't got a clue about the stomach acid thing though, how can you tell if you have low stomach acid?

greygoose profile image
greygoose in reply toDonnyJam

You are converting OK according to that last test. It's just that you haven't got enough T4 to convert, so you obviously aren't absorbing all that T4 you're taking.

Once you are on thyroid hormone replacement, the feed-back link between the pituitary and the thyroid gland is broken, so you cannot rely on your TSH to accurately reflect your Thyroid status. Your TSH is still too high, but some people would have a very low TSH with those Frees, and some people would have even higher. It's just not reliable.

Your TSH at the moment is saying that you need an increase in dose - well, it's saying you need more hormone - but what is the point of keep adding more and more T4 if you're not absorbing it? Taking more vit C, and taking it with your Levo, could increase absorption. It's Worth a try, anyway.

If your doctor cannot see that there is a problem with your results, then he knows less than average about thyroid. So, could you not ask for a referral to an endo? Or change to another doctor, another practice? One thing is certain, this doctor is not going to make you well.

As to the low stomach acid, do you have any digestion problems? Acid reflux? There is a test you can do using bicarbonate of soda, but I Don't remember the exact détails. I think you put a teaspoon of bicarb in a glass of water and drink it. You should burb, but it dépends how long it takes you to burb that tells you the state of your stomach acid. Instant burping means it's OK. But to check on that, ask another question - because the others know! lol - or search in the search window at the top of the page for posts talking about low acid.

DonnyJam profile image
DonnyJam in reply togreygoose

Thanks grew goose. This at least gives me something positive to try. I will look into the stomach acid thing, I do seem to get bloated after eating and I've noticed if I take pain killers for any reason they sometimes take longer than an hour to work whereas when I was younger they would start to work in as little as 15 minutes. I do want to change doctors but how do I figure out which doctor would be better than the one I'm with?

greygoose profile image
greygoose in reply toDonnyJam

That's the big question! We all wish we had the answer to that!

Are you in the UK? If so, Louise Warville has a list of good doctors. You could PM her for it.

DonnyJam profile image
DonnyJam in reply togreygoose

Yeah im in the UK. I'll try that. See if any of them are in my area. Thanks for your help.

greygoose profile image
greygoose in reply toDonnyJam

You're welcome.

DonnyJam profile image
DonnyJam

Thanks to all that have tried to help me so far, it really is much appreciated when you lot take time to help with advice :)

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