Should I increase Levo?

[FancyPants54]

I made a longer post earlier but only SeasideSusie saw it.

My question is, based on the new Blue Horizon results, should I increase my Levo?

I am assuming yes, because my TSH is too high. But I am puzzled as to why the last 25mcg dose increase made so little difference and why my Free T's are higher than my TSH would normally Indicate. I have discussed all the vitamin and mineral levels in my other post and they are on my profile. This post is specifically about the thyroid results.

June 2018

TSH - 7.13 mIU/L (0.27 - 4.2)

Free Thyroxine - 17.1 pmol/L (12.0 - 22.0)

Free T3 - 4.5 pmol/L (3.1 - 6.8)

Thyroglobulin Antibody - 24.8 IU/mL (0 - 115) Roche Modular method

Thyroid Peroxidase Antibodies - 32.8 IU/mL (0 - 34) Roche Modular method

September 2018

TSH - High - 6.11 (0.27 - 4.20 mIU/L)

T4 Total - 115.0 (66 - 181 mol/L)

Free T4 - 17.70 (12.0 - 22.0 pmol/L)

Free T3 - 4.48 (3.1 - 6.8 pmol/L)

Thyroglobulin Antibody - 19 kU/L (<115)

Thyroid Peroxidase Antibodies - 28.6 kIU/L (<34)

[sunsetalley]

Your TSH is still high and Free T4 and Free T3 should be a little higher. I think your need an increase in dose of levothyroxine. Don't you have any symptoms of hypothyroidism now?

[FancyPants54 in reply to sunsetalley]

Loads! Nothing much has changed.

[sunsetalley in reply to FancyPants54]

With these results and symptoms you're having, you have to be on a higher dose...

[Hidden]

If these were my test results, and I was symptomatic I'd be looking to increase for sure. FT3 not even half way through range, so quite a bit of room there. X

[Jazzw]

If you got a reply from SeasideSusie then quite honestly you got some of the very best advice to be found here.

Heed it well - she really knows her stuff.

[FancyPants54 in reply to Jazzw]

We were only talking about vitamins and minerals, not about the Levo dose or why my last dose increase made so little difference. That's why I opened it up again for more input. SeasideSusie is the reason I now have decent ferritin, it's the Levo that's worrying me now.

[Jazzw in reply to FancyPants54]

Well, actually, she did “talk about” that. She suggested that the reason an increased dose hasn’t led to a corresponding drop in TSH is because you may have Hashi’s. She suggested trying a gluten free diet because the problem seems to be one of absorption. For some reason, your body isn’t absorbing the Levo you’re taking. That might be because of gluten sensitivity irritating your gut lining. You might not experience any symptoms if that’s the case, other than getting confusing thyroid blood test results - like yours.

You could try cutting out gluten to see if it makes a difference to your absorption. Or you could try raising your levothyroxine dose again to see if another raise does the trick.

[jgelliss]

SeasideSusie

Has a Great Grip on our Thyroid Issues and Nutrients .

[FancyPants54 in reply to jgelliss]

I know she does, but this second post of mine was specifically about what to do about the Levo dose, which SeasideSusie and I hadn't talked about properly.

[Neverending63]

I’m having the same problem atm. My blood test came back high so GP increased levo. Just had it retested to check increase was enough to find out my result is even higher than the last one. Have an appointment Monday and know he will increase it again. This will put it up to 150mcgs daily. I have had loads of symptoms as well. You need an increase of 25mcgs then recheck in 6 weeks.

[FancyPants54 in reply to Neverending63]

Thank you. You are the only person I've seen here that said you had an increasing TSH on a dose increase. That was exactly what happened to me when I started on it. From 25, to 50, to 75 each dose increase sent my TSH higher! Frees barely moved from where they are now, they were never rock bottom. It's very odd. From 75 to 100 stopped the onward progression and brought my TSH down from 10.3 to 7.13 and now at the end of the 7 weeks on 100 it's come down a tiny bit to 6.11 with almost no Free T movement. My TSH was 4.7 when I started Levo well over a year ago. So I feel, so far, like it's made me worse. People say it gets worse before it gets better. But that shouldn't be the case for over a damn year!

Good luck with your increase.

[sunsetalley in reply to FancyPants54]

As long as immune system attacks thyroid gland, TSH rises and free T3 and free t4 levels drop so dose of medication you're on should be increased.

Do you have hashimoto's?

[FancyPants54 in reply to sunsetalley]

Not sure. I've never had antibodies out of the reference range. They have remained about the same for years, although there has been a gap in the testing of them, I've had 2 sets of results for them this year.

My T4 and T3 haven't really dropped, even when TSH rose. This time there was a small decrease in TSH from 7.13 to 6.11, a 0.6 increase in T4 and a 0.02 decrease in T3. It's so small it could just be the difference of a different day I would have thought. It's as if the Levo isn't doing anything. Yet when I tried to wean off it at Christmas I felt terrible.

[Hidden in reply to FancyPants54]

I've had an increase from 25 to 50 mcg so far. Symptoms got better at first then worse towards the end of the 6-8 weeks (they always tell me 8 weeks, but that's too long). I know I need an increase now. TSH decreased a bit after 25 mcg, but still over range, so we will see.

I'm still fairly new to all this, the first thyroid test was in March, but my guess is that, if TSH doesn't change much or even (in your case) gets higher, one of the following could be happening:

1. Levo causes the thyroid to decrease its own output (which it is struggling to produce anyway) so the total hormone in your body actually decreases.

2. The thyroid is deteriorating faster than the increase in Levo can replace the natural hormone

3. You are in the middle of a sudden change of output, for example because of increased antibodies

4. You are exercising a lot, under mental stress, have an infection, or something else that puts a strain on your body and affects hormone levels

[Dragonara1]

.... how do you get such detailed results. My Dr surgery doesn't say much at all!

[FancyPants54 in reply to Dragonara1]

They are nothing to do with the doctor. Their test is TSH only and perhaps T4 if you are very lucky once in a while. This is a Blue Horizon test which I paid for privately in the UK. It's the only way to get a complete picture.

[sarosent]

It doesn't seem that you are converting the T4 to T3 ? Look into enhancing your liver function, or if you can get on some T3 - but I know that's not easy.

[FancyPants54 in reply to sarosent]

What makes you say that?

I'm really not keen to get into buying T3 from abroad at the moment. I think that's going to get very hard next March.

[sarosent in reply to FancyPants54]

I said that because your free T3 actually went down even with an increase in T4.

I know it's difficult to obtain & manage T3, so perhaps look into helping liver - where a lot of the T4 is converted to T3 - supplements, cleanses, clean eating.

[ShinyB in reply to sarosent]

I looked at your T4 to T3 conversion rate, Fancypants, wondering if that was the issue, but on both tests it's actually quite reasonable - June's is 3.8 and September's is 3.95. My understanding is that between 3 and 4 is good conversion. It's gone up towards 4 in September so isn't as good, but it's still pretty reasonable. Fancypants I've been thinking and I'm afraid I can't think of anything useful to say about your results, but I thought jnetti's reply might hold some clues. It's certainly not something I've come across, not that I'm any expert. Hope you get to the bottom of it... x

[Jodiedebs55 in reply to FancyPants54]

May I ask why you think it will be hard to source T3 from abroad ? I'm having no problem sourcing it?

[FancyPants54 in reply to Jodiedebs55]

We are still in the EU at the moment. It could get a whole lot harder if we do get taken out at the end of the month. Still, it's all up in the air. Nothing is certain. But once outside the EU there will be additional fees to pay and possible delays to shipping and increased shipping costs. We also don't know if we will be able to receive medicines into the country.

[Jodiedebs55 in reply to FancyPants54]

Really ? That's the first time iv heard that it would be difficult to get meds into the country ? Well I'm sure they will find a way , the strangest method iv seen is the one used to buy thyroid gold and T3 you actually buy it on Ebay disguised as clothing , if theres a market for something a seller will always find a way 😁

[FancyPants54 in reply to Jodiedebs55]

I'm less confident as things are currently going. My business is importing American goods and selling in the UK and into Europe. I have little hope that things won't change for the worse. Ebay will also be subject to taxes and import regulations. If it goes ahead, people who do not know much about import/export are going to have a bit of a surprise.

Eventually I'm sure a lot of things will be available again. But at a price. For example if I ship a small parcel to France at the moment I can drop it into the Royal Mail and it costs a few pounds. If I send the same parcel to Switzerland (not in the EU) then it will take 2 days longer and cost £25 per packet, plus the shipping, which is more expensive and requires customs paperwork.

Our medicine regulations will be different to now. So we just don't know what will be allowed. I use T3 now. I have 2 years supply on hand to ride out the storm if it comes. The trouble is we still have no idea. For a business it's dreadful. Cash flow is tied up in holding extra stock. Stress is high. No one knows if they will still be able to trade afterwards because the transportation issues are huge and not being addressed by the government. I could go on. I won't. I have found over the past 3 years that few actually want to listen to anyone who has experience, however small.

[Jodiedebs55 in reply to FancyPants54]

Gosh I'm so sorry to hear that I don't mean to appear ignorant but it's simply down to the fact I dont watch TV or read newspapers I stay away from anything political or stressful I'm not even on social media I found it elevated my depression and anxiety levels but I appreciate and empathize it must be terribly worrying for someone like yourself that runs a business, oh dear , now I'm thinking I should stock up like yourself, thankyou for the invaluable information its much appreciated

[FancyPants54 in reply to Jodiedebs55]

I don't blame you for protecting yourself from what's currently going on.

The biggest stress is the uncertainty. I have stockpiled T3 and my HRT at my own expense. I've managed to get ahead by careful prescription ordering with my Levo too, but to a lesser extent. It could all be for nothing and I hope to goodness that it is. If so, I have some meds on hand. It doesn't matter.

Every day I log into the DPD web site to book courier deliveries for customers and the web page opens with the latest warnings for shipping. The latest news and impacts of what's going on in Calais etc. I am thankful for the warnings, but they are scary. Royal Mail hasn't said a word!

If you rely on any thyroid meds that you import from abroad, I would get some in hand just in case. But you have little time left to do it. You don't want it in transit on 29th March. So depending on how long it usually takes to place and receive an order for yourself, make the call as to whether it's too late or not. I won't be shipping anything out to Europe after 22nd March. I might even make that call from 20th.

My order volume and value has been subdued now since the referendum due to the crash of the pound against the dollar increasing all stock prices. I've noticed a little flurry since Christmas of EU customers stocking up. But I don't expect it's going to be very good if this does go ahead. 11 years of building a business to be thrown away by a totally incompetent government!

[Jodiedebs55 in reply to FancyPants54]

Oh wow this is dreadful I had no idea , I tend to hide myself away from the world to be honest and for that reason , I wish you well I hope you don't lose your business

[Hashi-hacker]

Here's a different resource to perhaps explain why things aren't working for you so well - he's all about gut health.

drruscio.com/why-your-thyro...

I've pulled out this quote - T4 to T3 conversion is not all in the liver, it happens in many places....

'Low conversion of t4 to t3 (activation) caused by:

Liver toxicity

Digestive problems

Inflammation

Stress hormone imbalances

High estrogen/low testosterone'

[Hidden in reply to Hashi-hacker]

That seems to give some very useful information. Easy to read as well