THYROID RESULTS IN AND NOT GOING THE WAY I WANT THEM TO!! Advice please?

[Jazziestar]

HI ALL,

I am not sure what is going on. I have other illnesses as well, especially some problems in my immune system that Addenbrookes are looking into 5th Aug. I am not sure if other illnesses would impact thyroid medication.

Earlier in the year i was on 75mcg Levo, I felt no better so i added 25mcg T3.

I have just received my test results from Medichecks and T4 and T3 have both dropped, antibodies are up and TSH has dropped from 6.

Why are my hormones dropping although I am now on both T3 and T4? Why has my TSH not gone up with the drop in T4?

Do I need to increase both T3 and T4? I thought the dosage I am on was quite high?

TSH 4.81 (.27-4.2)

FREE T3 3.55 (3.1-6.8)

FREE T4 7.15 (12-22)

TGA 666 (<115)

TPA 274 (<34)

Minerals and vitamins are good. I do need to recheck D3, Selenium and Folate as previously low but were up at optimal 3 months ago.

Thanks.

J

[greygoose]

You added in 25 mcg T3 all in one go? You didn't start low and work up slowly? I don't know if that has any bearing on your present results but you were lucky to get away with it.

How long had you been taking 25 mcg T3 when these labs were done?

It would help people to comment on these results if you also published the previous ones. But, I can tell you why your FT4 has dropped: Because you're now taking 25 mcg T3. That's what happens.

75 mcg levo and 25 mcg T3 isn't a high dose, by any means, but difficult to advise what to increase without more details. One thing is certain, though, you only increase one at a time, not both.

How do you take your T3? Do you take it like levo, on an empty stomach, etc.? Do you take it at least 2 hours away from all your other medication?

Do you know that you have Hashi's and that that can cause levels to jump around?

[Jazziestar in reply to greygoose]

Hiya

Yes i know I've Hashis. Just wished the Gp would understand the rollercoaster! He seemed to think i was hyper, till he gave in and did antibody testing. I get both symptoms like many.

Thanks for explaining the T3 dropping the T4. Does that mean I actually need more T4 or does it just look that way as of the added T3? I initially started on 12.5 T3 as could not break the tablet smaller than in half. Brought it up after i think 3 or 4 weeks. Had no obvious hyper symptoms so it was fine, except I feel no better at all. Was at full dose I think around 6 to 8 weeks , maybe a bit longer prior to testing. As I am on a fair amount of different medications, I tend to take my T3 and T4 together at 6am then back to sleep.

J

[greygoose in reply to Jazziestar]

Very rare to find a GP that knows the first thing about Hashi's.

Do you need more T4? That is a very individual question. Some people need their FT4 quite high; then others - like me - are very happy with no T4 at all. And then there are those to whom it doesn't matter at all. You will only find out by experimenting, where you need your FT4. But, first of all, if I were you, I would concentrate on getting the FT3 a lot higher.

[Jazziestar in reply to greygoose]

Thankyou, I will take T3 up by 12.5mcg for now then. You said not to do T4 as well, so I will wait 6 weeks and test. Many Thanks. The Gp's know very little. I may still yet go to see JW in Oxford if it doesn't settle down.

J x

[greygoose in reply to Jazziestar]

I think that would be best, yes. But, I'm sure that if you got a good pill cutter, you would be able to cut the pill into quarters. I do mine.

[McPammy in reply to greygoose]

I wondered why my T4 results had dropped after adding T3. No Dr has explained that to me. Thank you Greygoose! I was even thinking of increasing T4. I’m not going to now. Do you know why this happens please? 👍

[greygoose in reply to McPammy]

No, I don't know. There was an entire thread about this subject, a while back, and people were suggesting all sorts of reasons, but no-one actually knew why. We are still none the wiser.

[McPammy in reply to greygoose]

Thanks Greygoose. I’ve past out this morning. In a right state with myself.

[greygoose in reply to McPammy]

What happened?

[McPammy in reply to greygoose]

Wasn’t well yesterday. Felt dizzy and weak. Swaying a lot. Blood pressure low. Got bloods done yesterday everything was in range. I woke feeling ok. 2 hours later I fainted which I never do. I came round and got dressed now I feel awful swaying and weak again. I’ve laid flat for a while. Called 111 as I live alone. Useless. Waiting for someone to call me back. Had nerve pain burning and rash on my trunk after changing T3 medication. I thought it might be that or upsetting my adrenals. I’m not sure.

[greygoose in reply to McPammy]

Well, you are still very under-medicated. Can you not increase your T3? Just by 1/4 tablet. When did you last increase it?

I think maybe you do need your nutrients rechecking.

[McPammy in reply to greygoose]

I’ve not had any increase in T3 since I started it end of March taking 5mcg twice a day and 75 mcg Levothyroxine.

Yesterday results.

T3 4.9 (3.7-6.0)

T4 8.9 (7.86-14.4)

TSH 0.62 (0.35-5.56)

Cortisol 9am 255

Ferritin 44

Folate 12

B12 1150

Vit D 105

I was swaying about yesterday and my legs very weak.

My cortisol has dropped from 485 a couple of weeks ago now to 255. Both tests taken at 9am

[greygoose in reply to McPammy]

That's a big drop in cortisol. Might have something to do with it. But, not easy to treat adrenals. You could try taking a glandular, like Adrenavive. But, I've never taken one, so don't know much about them. Other than that, lots of B vits - your B12 is good, folate appears good but difficult to say without a range; lots and lots of vit C; make sure you get enough salt. This is no time for low-salt diets. Plenty of rest, and a high protein breakfast as soon as you get up.

Your ferritin looks very low - no range for that? - and that won't help. But, your FT3 is only just about mid-range. Most hypos need it higher than that.

[McPammy in reply to greygoose]

Thank you Greygoose. You are very kind and informative.

My cortisol has got so much better on T3. When I switched to NHS T3 Sigma it really shot then nose dived again on ThyBon but still ok. I had pains in my back near my adrenals after starting T3. It went away after a few weeks. When I started NHS Sigma T3 the pains came back in my back again. I think Sigma has done something to my adrenals now going back to ThyBon things are not the same. I felt great previously on ThyBon.

Sorry about the ranges I’m in hospital I can’t remember them all. My ferritin still needs work and I take ferris fum each night going to bed. Folate seems to raise when I take the iron tablets.

This Sigma medication has knocked me off balance. Also my skin was burning and stabbing nerve pain with it. I thought it was shingles but every Dr looking at rash says it’s not a shingles rash. Maybe the Sigma has done it.

I do really appreciate your input and help.

[greygoose in reply to McPammy]

Doubtful it's the actual T3 that is causing the problems, but possibly the fillers in the Sigma tablet.

Do you take vit C with your iron, to help with absorption, etc.? How much?

[McPammy in reply to greygoose]

Well they said they have no idea why I passed out or why I’m feeling so weak. I asked what if it happens again. Dr said if you hurt yourself when you fall then come in but we can’t help with any Endocrine issues.

Yes I take vit c one 1000mg with one 210mg ferrous fumerate tablet. I also take them both with a glass of fresh orange.

I feel like I try and try to keep well but I fail sometimes. I just wish I knew what was going on now. Could it just be swapping from one brand to another then back again. I was on a level with my original T3. Only taking the new one upset things. If not it is a big coincidence. Oh well another day wasted at hospital. I swore I’d never go there again after last year and the poor treatment I got.

Thank you so much Greygoose. You’ve been a real support for me today. Maybe I need more T3!?

[greygoose in reply to McPammy]

I was going to say that. It may not be the changing of brand the problem, but that you now need more T3. It does happen.

[McPammy in reply to greygoose]

I think I’ll increase slightly and see what happens. Instead of 5mcg I think I’ll try 7.5mcg twice a day. Be a little awkward in the pill cutter 🙄

[greygoose in reply to McPammy]

Why not take 10 mcg for the first dose and 5 for the second? That would be easier.

[McPammy in reply to greygoose]

OK. Yes, I’ll try that then starting in the morning.

Can’t thank you enough for your support today. You’ve been loads more help than the Dr at hospital today! I’m still very tired and swaying. Let’s hope an increase will help. I should feel some benefit quite soon on.

Have a good evening. I do hope you are ok today. 👍 x

[greygoose in reply to McPammy]

I'm fine, thank you. Get some rest.

[McPammy in reply to greygoose]

Hi

I just had a thought. Could my ThyBon T3 be out of life. The use by date is Jan 2020.

I normally get my bloods done without taking any medication etc and the last T3 result on ThyBon before switching to Sigma was 4.9 (3.7-6.0) without meds. This week I took the ThyBon T3 on purpose prior to blood test to see if I was spiking too much. It certainly didn’t feel like it, and this week with ThyBon T3 med my result is 4.9 also. I left 2.5hrs after taking T3 as wanted it to show in test. When I was on T4 alone my symptoms are very similar to now. I’ve even said this week that it’s like the tablets are duds. I use to feel an uplift after taking T3, now I feel nothing at all. I store the T3 under my kitchen sink. And now I’m thinking that it could be too warm under there. With running hot water into the sink a few times a day and I pour boiling water dregs from my kettle after making tea down there a few times a day too. Could this effect the tablets?

I took 5mcg T3 ThyBon last night, which is a first, again I felt no improvement. T3 has raised my cortisol considerably when I first stared it. Now it’s falling again. This is another indication that the ThyBon T3 either isn’t working or I’m not taking enough. I’ll take 10mcg ThyBon this morning as suggested and see how that goes. If still no improvement I think the life may have expired a little prematurely. Not sure what life span they are given by the manufacturer. They could be 4/5 years old?!

Also my heart rate has come down from 60bpm to 52 and sometimes down to 48. I wear a fit bit. My heart rate was low when on T4 alone. Even got as low as 43 when I was really bad.

[greygoose in reply to McPammy]

If the use-by date is 2020, I very much doubt they are 'out of life'. I've used T3 up to two years past the use-by date with not problems. It's often discussed on here and generally agreed that the use-by date is not to be taken too seriously. And, I rather doubt if it gets so hot in the cupboard under your sink gets hot enough to make any difference. However, you could have a dud batch, I suppose - although no-one else has been complaining on here. How much of it have you got left? Maybe you should change the place you keep your tablets, just in case.

[McPammy in reply to greygoose]

I’ve taken 10mcg ThyBon at 8am. I’ve switched meds to a cooler cupboard and I’ve emailed my private Endocrinologist’s secretary requesting a repeat prescription. I’ve got about 150 20mcg tablets left. Which will last me 300 days on current dose. Well past the best before date. I’ll see how I go today on the increase.

Thanks again for your thoughts on this. I’m just trying to find out how to fix myself. So annoying as I was doing so well until I switched to Sigma then back again. Really disappointing.

I’ll let you know how the increase went 🙄

[greygoose in reply to McPammy]

I find it strange that switching back to Sigma didn't fix the problem - which tends to suggest that it wasn't the Thybon that was at fault. Time will tell.

[McPammy in reply to greygoose]

I was on ThyBon for 3 months and felt brilliant. NHS then decided finally to give me T3 which is Sigma. I started on it straight away about 3 weeks ago. 2 days into it I got burning skin on my trunk with nerve stabbing pains the GP said it definitely wasn’t shingles as the rash that appeared was not that of shingles. I carried on with NHS Sigma and the skin got worse. GP said go back to ThyBon. I did then I started to get low blood pressure, lower heart rate after a few days and yesterday passed out. It felt as though the ThyBon wasn’t working anymore weirdly. I felt nothing from the normal 5mcg Maybe, like you say, I need an increase. I’ll see how I go over the weekend. I think I can feel the T3 already picking me up from when I took it an hour ago!! It works really fast on me normally. Let’s hope this is the answer 👍😀

[greygoose in reply to McPammy]

I'm so sorry, I got that the wrong way round.

So, when you went back onto Thybon, did you go back to the same box you were on before, or did you open a new box?

How long ago was the change over?

[McPammy in reply to greygoose]

It was the same box. The change back to ThyBon was last Sunday just gone. But taking 10mcg this morning as you suggested has improved me so much. No swaying or heavy legs. Can’t believe the instant change.

Thank you so very much Greygoose 👍😀.

[greygoose in reply to McPammy]

You're welcome.

[Jazziestar in reply to McPammy]

I hope me adjusting dosage will have the same effect.

Thanks Grey Goose.

[McPammy in reply to greygoose]

Oh my goodness. I feel so much better already! I’m not swaying about and I’m normal with taking 10 mcg instead of 5 👍

Who needs Drs when we have Greygoose 👍😀

[greygoose in reply to McPammy]

lol! I don't think the doctors would agree with that!

Glad to hear you're feeling better, anyway.

[bahai-dot-org]

Reverse t3?

[mistydog in reply to bahai-dot-org]

Unlikely at these levels unless the patient has a mutation

[greygoose in reply to bahai-dot-org]

Red herring, anyway.

[Jazziestar in reply to greygoose]

Is it worth doing reverse T3 or the DIO2? Or just keep plodding along getting my numbers up?

J

[greygoose in reply to Jazziestar]

It's definitely not worth doing the rT3. All the test would tell you is if it's high or not. It wouldn't tell you why. And, there are many, many reasons for high rT3, most of them non-thyroidal.

I can't comment on the DIO2 test. I've never done it and I've read so many conflicting opinions. If you really want an answer to that question, I suggest your start a new thread asking just that.