GP's reply

[Jefner]

I sent my GP all my thyroid results for the last 18months as my original GP has now retired. This is her response "I am struggling to find an easy correlation between your thyroxine and liothyronine doses and your results, as you say they vary greatly. I think when we spoke you generally felt better when your TSH was at the lower end of normal range. I think therefore it may be worth leaving your thyroxine at 125mcg but adding a lower dose of the liothyronine again - maybe 10mcg alternate days.

As far as NDT I do not know enough about it to be confident in recommending this to you. If this is something you decide to explore I will of course be happy to monitor your thyroid levels but would find it difficult to advise on dosage etc"

Not a lot of help really is it. I don't know whether to try adding T3 again; can't say I felt any better on the dose I got up to.

Don't know what to do so seeking advice again from my fellow warriors.

***26th September 2017**** - 125 Levo, no T3 since 9th July

TSH 1.62 (0.27 - 4.20)

Free T4 21.10 (12.0 - 22.0)

Free T3 L 2.50 (3.1 - 6.8)

Vitamin B12 H 917

Serum Folate 39.10 8.83 - 60.8

Ferritin 89.5 20 - 150

Anti-Thyroidperoxidase abs H 188.0

Anti-Thyroglobulin Abs H 183

***11th July 2017**** - 100 Levo, no T3 since 9th July

CRP 0.10 <5.0

Ferritin 76.6 (20-150)

FT4 17.00 (12-22)

FT3 3.21 (3.1 - 6.8)

TSH 3.56 (0.27 - 4.20)

T4 Total 100.7 (64.5 - 142.0)

Anti Thyroidperoxidase abs 198.5 <34

Anti Thyroidglobulin abs 196 <115

B12 624 Deficient <140

Serum Folate 28.46 (8.83-60.8)

***2nd June 2017*** - via GP with other tests

Serum TSH level 0.43 mu/L 0.27 - 4.20mu/L

***22nd May 2017**** - 100 Levo, 15 T3

TSH L0.11 (0.27 - 4.20)

T4 15.22 (12-22)

T3 3.16 (3.1-6.8)

[greygoose]

She doesn't know much about T3, either. You can't do 10 mcg on alternate days. T3 should be steady, constant dosing, or it will completely upset your system. What is wrong with 5 mcg every day?

[Jefner in reply to greygoose]

Hi Greygoose

She obviously doesn't have much of a clue. I am sick of this, I don't understand why I can't get my levels back on an even keel. When I tried T3 I got up to 15mcg and went over range, then I went back down and worked my way up again to 15mcg, tested and T3 was still lowish in the range. I can't help but think this SIBO and Candida is interferring with absorption.

I had 5 good days of little to no anxiety last week with energy which I shouldn't have much of because my T3 is in the ground again. I just don't get it, I really don't. My TSH is still a little high and I don't want to up my T4 again because it's obviously just not converting. I had an rt3 test done a year year and I was over range Reverse T3 H 0.77 (0.14-0.54 nmol/L) and from what I have read the only way to get it down is to go T3 only. I am testing again on Thursday but won't get the results for a couple of weeks.

I am stuffed in knowing what to do, my GP can't help me so who the feck can. My FD suggested I come off T3 because she seemed to think it was fuelling my anxiety which is why I thought I would stop for a while to see if it made any difference. Can't say whether it did or it didn't because I know a lot of my anxiety is due to the symptoms from my SIBO and Candida.

Most others seem to be able to get their levels OK but not me, I don't understand it and stuffed in knowing the right thing to do

[greygoose in reply to Jefner]

It is complicated. But her way of dosing T3 won't help.

But, you obviously need to take T3, because - as you say - you're not converting it. How about trying T3 only?

[Jefner in reply to greygoose]

Greygoose

I may have to consider that if I have a high rt3. You are on T3 only arn't you. I still can't get my head round why I still wouldn't need the T4 though. I have been feeling better since we last spoke, I had 5 good days last week but the last couple the anxiety and nausea is back which I know is histamine problems related to the SIBO/Candida. I keep a good diary now but can't work out what has caused the anxiety to come back. My FD keeps harping on about NDT but it doesn't suit everyone does it and I can't change too much at the moment or I won't know what is working and what isn't as I am on a gut protocol

There only seems to be you and Clutter that replies to my posts. No-one else seems to care anymore which is why I rarely post now, it's such a lonely road with not much in the way of advice and help

[greygoose in reply to Jefner]

The anxiety has come back because your FT3 is so low, now.

You don't need T4 because it's not converting to FT3, just to rT3. Which is why you're taking T3. Some people find they need a little T4 to make them stable, others - like me - find that T4 just makes them worse. It's a storage hormone, and if you can't convert it to T3, it doesn't serve much purpose.

I don't think it's the case that nobody cares, now. It's just that you're a really complicated case! It's possible that most people feel out of their depth - I feel out of my depth, but it I can find something useful to suggest, I don't mind trying. x

[Jefner in reply to greygoose]

Greygoose

Thanks hon, you are always there for me. As I said I had 5 good days in a row WITH energy last week, actually felt normal it was wonderful so the low T3 couldn't be the cause of the anxiety or I wouldn't have enjoyed those 5 days and that was the time I tested. Unfortunately SIBO and Candida can cause it, along with histamine issues that go hand in hand with SIBO apparently.

I think I may start taking the T3 again but after I have had my bloods taken on Thursday. Do I drop my Levo again by 25mcg when I add the 5mcg to start with?

[greygoose in reply to Jefner]

I'm afraid I just don't know anything about SIBO or candida, so I can't help with that, at all.

But, yes, drop your levo when you start the T3. That's too much unconverted T4 to have swimming around in your system.

[Jefner in reply to greygoose]

greygoose

Don't think my FD will be happy with me trying T3 again but I don't appear to have a choice. Stupid thing is that when I was on T3 my levels still wern't great, barely mid range

[greygoose in reply to Jefner]

Then you just weren't taking enough.

[Jefner in reply to greygoose]

greygoose

But I went over range at one point on 15mcg and when I backed down and went up slowly again to 15mcg my levels kinda stayed just below mid range. Can't work that out can you?

[greygoose in reply to Jefner]

Well, the Hashi's probably has something to do with it.

[Jefner in reply to greygoose]

Greygoose

Probably, but it is good news that my antibodies are slowly coming down since I started with this FD. They are the lowest they have been in 2yrs

[greygoose in reply to Jefner]

Yes, that's good.

[Jefner in reply to greygoose]

greygoose

Started back on 5mcg T3 yesterday and have dropped my Levo from 125 to 100. Is that about the right ratio?

As mornings and the early part of the day are awful for me with anxiety, T3 can give some people palps etc. Wondering whether to have my T4 in the morning and then take the T3 later in the day when I sometimes feel a little better?

[greygoose in reply to Jefner]

Palps can be a symptom of under-medication, as well as over-medication. But, you have to experiment to find the best way to take it, for you.

Yes, reducing T4 by 25 and adding in 5 mcg T3 would be roughly right. It's all trial and error. But don't get hung up on ratios. Ratios are for healthy people. We have to find the levels that make us well, no matter what they might be.

[Jefner in reply to greygoose]

greygoose

Thanks hon. Did my rt3 test the other day and results will be around 2 weeks so will be interesting to see what they are because I haven't tested for a year. Unfortunately the gut issues I have affect my thyroid meds. Just had 3 awful nasty days of die-off symptoms, thought I was dying at one point but hopefully it has settled down a bit. I am supposed to be happy about them because it means the bad bacteria is being killed but I also get histamine problems as well so have to be careful if what I eat so gonna have to stick to the strict diet sheet my FD gave me.

How long should I leave it before I nip the T3 up to 10mcg and should I leave the Levo still at a 100 when I do?

[greygoose in reply to Jefner]

I would leave it for two weeks, if I were you. Whether or not your reduce your levo again, depends on your ultimate goal. Are you aiming for T3 only?

[Jefner in reply to greygoose]

greygoose

Just aiming to get my T3 up

[greygoose in reply to Jefner]

OK, but have you never considered that it might be the levo itself that is causing a lot of your problems?

[Jefner in reply to greygoose]

greygoose

I don't know anymore, I have too many problems and feeling very low tonight. Didn't feel too bad this morning but feel awful tonight

[greygoose in reply to Jefner]

Well, seems to me you've tried just about everything else. Maybe it's time to start cutting out the levo? Think about it.

[Jefner in reply to greygoose]

Greygoose

I wonder now that I am meno whether I have become intolerant to it like my ad's. I can't change too much at the moment or I won't know what is and isn't working. I will see what my reverse t3 results come back with and then take it from there. I have to concentrate on ridding this damn bacteria because if the gut isn't right, nothing else will be.

[greygoose in reply to Jefner]

Well, you're right there, you should only change one thing at a time. But, I don't think rT3 has anything to do with anything. It's just a huge red herring.

[Jefner in reply to greygoose]

greygoose

Have been talking to some of the members in the SIBO group on FB and what I am experiencing is normal apparently. SIBO and Candida messes with everything in the body, a lot of people have the severe weight loss that I have, anxiety, nausea, depression, brain fog, fatigue.....all symptoms of hypo and meno as well so I don't my root cause. How can I with all this going on. My FD wants me to do a mycotoxin test which checks for mold and stuff as I have been exposed but not for a while. There is also a neurotransmitter one I think I will have done as well because I have had anxiety for most of my life anyway. Oh why did my mum have me ffs.

[greygoose in reply to Jefner]

Well, she wasn't to know, was she!

It sounds as if your FD is doing as much as she can, she just doesn't know much about thyroid. Because thyroid hormones are crucial to everything.

[Jefner in reply to greygoose]

greygoose

My FD has thyroid problems herself and is currently self medicating with NDT and she keeps trying to get me on it. Gut health is as crucial as thyroid hon, it's all connected

[greygoose in reply to Jefner]

Yes, I realise that, but that doesn't help when your T3 is low. You can't hang around with low T3 just hoping that it will improve if you manage to sort your gut out. So many other things could go pear-shaped in the mean-time.

[Jefner in reply to greygoose]

greygoose

Absolutely agree with you which is why I have decided to restart the T3. Why the heck am I not converting. If you remember I had the urine test done some time ago to see how much was getting into my cells. It was but low. What could be the reason or is it that I was just born with shitty genes

[greygoose in reply to Jefner]

I can't answer that one, I'm afraid. Something to do with your cortisol, perhaps?

[Charliebrowne in reply to Jefner]

Hello, I am a relative newbie only diagnosed hypothyroid in October 2016. Confirmed Hashimotos in May this year. I think I have the sibo /candida issue and that's why levothyroxine sucks for me. The endocrinologist said to try other brands. So far I've only had Teva so will try and get my prescription and hunt for a chemist that does mercury. I've been told to stay on a type for 6 weeks at least. I'm on NDT sourced privately in the meantime.levothyroxine has only been tolerable when I'm completely dairy free as well as always gluten free and after two months of that I'm finding it hard to be so disciplined with dairy again.

I also have low ferritin levels and take 1 ferrous sulphate tablet daily. On T3 or too much NDT palpitations come and I adjust accordingly.

[NatChap in reply to Jefner]

Jefner I really don't think people don't reply because they don't care. Most are probably just as stumped as you so don't how to help or what to advise you to do x

[Jefner in reply to NatChap]

NatChap

Sorry, yes I think that's true, just reaching out because I feel hopeless and my GP is rubbish

[Tizzyw in reply to Jefner]

From the letter I don't think your GP is rubbish. It sounds like yours is a complex case. She did the one thing I always hope a professional will do and admit they don't know. From what I gather from the limitations of how they are trained regarding the thyroid and and the guidelines they are given you wouldn't get that much more help from a specialist. That is a real problem and it needs addressing but does not make a particular GP rubbish just the whole profession in need of better guidelines for managing more complex endocrine problems. Her reply was polite and didn't shut you down and if you explore NDT she will monitor your levels even if she can't advise on dose. Believe me I know the frustration of having problems that are hard to. manage and diagnose but I sometimes think people are given unrealistic expectations of doctors. They can't all be Dr House. GP's are generalist they have to know just enough about everything and when they should refer to a specialist. I worry about the doctors with god complexes who believe they know everything they are truly dangerous. On the on the other hand I am just going from the letter so if she made you feel dismissed and like she wasn't listening to your symptoms I can understan why you feel she is rubbish.

[Jefner in reply to Tizzyw]

tizzyw

I didn't say she was rubbish hon

[Tizzyw in reply to Tizzyw]

Sorry thought I was replying to this comment still getting used to posting

"Sorry, yes I think that's true, just reaching out because I feel hopeless and my GP is rubbish"

[Jefner in reply to Tizzyw]

Tizzyw

no need to apologise hon, it's hard when you can't find a GP who know anything at all. I taught my former GP about stuff instead of the other way around

[Jefner in reply to NatChap]

NatChap

Just feeling like I have worn out my welcome with my continual moans on here

[Camomile1 in reply to Jefner]

So sorry can’t reply as Im so new to all this too! I hadn’t realised just how big an issue Hypothyroidism is. We are listening but don’t want to inundate you when we have nothing to contribute. You’re doing a marvellous job of researching & trying to get yourself better. GPS don’t have a clue & it is really worrying!

[Jefner in reply to Camomile1]

thank you

[Lovey123 in reply to Jefner]

I don't want u to feel nobody cares. We get that enough from Meds. I've been struggling for 5 months. I have been hypothyroid for 9 yrs & my Dr didn't know what the hell he was doing & took me from levo 100mcg with tsh 1 & put me on 1 Gr naturethroid & put me in hyperthyroid. Then went off all thyroid & OMG!! Just horrid. Now on 1/2g naturethroid again cuz went back on levothothyrine & the pain was terrible. I ended up with me is on both knees,pain in side & back etc.

[Jefner in reply to Lovey123]

Lovey123

sorry to hear that honey, I am so sick of trying to get better. It has been 2yrs now

[wellness1]

I think there are many who are concerned, but don't know how to advise. That describes me. Glad you are getting some good advice from greygoose. I hope you feel concern and support here. It's not been very long since you suffered a terrible loss. Could adrenals be at play?

[Jefner in reply to wellness1]

Hi wellness1

Thank you for remembering I lost my Dad :(, I do still miss him very much. I suppose with my last two posts and such little in the way of responses I just felt a bit ignored and alone on my journey, but you are right as NatChap said, I am a complicated case and maybe not easy to help. My adrenals seemed to have calmed down a lot but when I get "die-off" symptoms with the SIBO and Candida I can feel my levels rise as my back aches, but they are much better than they used to be.

[wellness1 in reply to Jefner]

Sending good wishes and hoping you begin to feel better soon. Take care and be good to yourself.

[Jefner in reply to wellness1]

wellness1

thank you honey xxxxxxxxxxxxx

[marigold22]

Your CRP levels are low which is good, both your antibodies have gone down so you're doing something right to help those. Your Free T3 is much too low. i don't know as much as some on here, but have had hypo for 35 years & got myself better since joining this wonderful forum. Everyone's journey is different. I personally took a big leap forward when I confirmed that I have a conversion problem via a Regenerus private DIO2 test. Not everyone here will agree it's necessary, but for me it made it black & white instead of being 'grey'. It told me that I definitely cannot convert T4 into T3. Sorry I can't be of more help

[Jefner in reply to marigold22]

Marigold22

Thanks hon, I was wondering whether to have that test but I did a urine test a few months ago to see how much T3 was getting into my cells and there was some. Can't find the results at the moment but I think I am gonna have to try the T3 again, although I was on it for several months but stopped it back in July. Did you go T3 only then after your results and are you now T3 only?

[marigold22 in reply to Jefner]

The amount of T3 (15mcg alternate days?) was a very low dose. As I said everyone's story and journey is different. I was already on T3 only but too low a dose. That DIO2 test confirmed absolutely with no doubt that I have a genetic fault from one parent which I had guessed was my problem. Now I know for absolute certain. The DIO2 test costs around £160, is easy as it's only saliva. When we are feeling ill, have confusion and brain fog it's very easy to go around in circles. I did for decades. You mentioned candida? I had to get rid of that too - I did it by quitting grains, yeast, dairy + taking grapefruit seed extract, over a one year period; it worked.

[Jefner in reply to marigold22]

marigold22

I am on various supps for the Candida and SIBO ie. Neem and Allimed and a good probiotic. My FD is taking things slowly with me because I seem sensitive to a lot of things that makes my anxiety worse. I have been GF, dairy free etc for a long time now

What does that test actually test if you know what I mean?

[marigold22 in reply to Jefner]

Do you mean the DIO2 test - what does it actually test? thyroiduk.org/tuk/testing/D...

Thyroid UK website states:- "Firstly, you need to know that everyone inherits two copies of each gene, one from their mother and one from their father.

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

In order to find out if you have the faulty gene, you need to have the DIO2 genetic test which Thyroid UK has now sourced in the UK."

Which all means basically that one or both parents could have a faulty thyroid gene, in which case their children can inherit it. I do think, if you can afford it, it would tell you categorically whether your body is able to convert T4 into T3.

[Jefner in reply to marigold22]

marigold22

Thanks, have just been reading up a little on it. I did a test many months ago via TPAUK. It was a urine test to see how much T3 was actually getting into my cells. Can't find the report at the mo but it did say it was getting through.

"Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal"......my results never seem to look normal, they are up and down like a yo-yo.

What action do you take then if you find you have the faulty gene. I am the only one in my immediate family that has thyroid problems

[marigold22]

PS. In my own case, it takes time for T3 to both kick in and kick out. I went from 40mcg of only T3 down to 30mcg of only T3 for 6 weeks mainly to prove something to a grizzling endo. I was shocked that my TSH only went up by about 0.3 over those 6 weeks and I felt like death. So maybe you haven't given your T3 dose long enough to kick in properly. However I do still think you are on too low a dose of T3. Apologies but I wouldn't know what to advise with your T4 dose.

[cwill]

Regarding SIBO do you have a good nutritionist or good info? I followed Dr Myhills advice for years re fermenting gut but it was only after a real nasty showed up on a stool test that allergies, asthma and other symptoms resolved with 2 weeks antibiotics. No one in the NHS did this test despite telling me that my results suggested parasites when I was first severely ill 10 years ago. And the NHS is totoally uninterested that asthma that started as a teenager has simply resolved with a course of antibiotics...

Are you aware of the SIBO summits? This is the best site and info I have found.

siboinfo.com

I am now following more gut healing that honestly should have been recommended years ago but we all have to work this out for ourselves it seems. I found that once my gut was better settled everything else followed. I know that oregano oil is very powerful, killing the good and the bad, so are you using high quality probiotics like kefir, Symprove and restoration measures like Restore?

We read your posts and send silent good wishes but leave it to the better experienced members to reply re thyroid health. Some of my posts have had just one response, a through one with sound info and advice, from Clutter but as nothing else could really be said that was what I needed. Keep plugging away as you will find your own path through all this.

[Jefner in reply to cwill]

cwill

Yes I am working with my third Functional Medicine Practitioner who is much better than the other two. I am on a strict diet of lots of protein and veg etc and Bifido probiotic. Funny you should mention Restore because I have that as well but don't take it as I should because I wasn't sure whether it suited me or not because I am on so much

[cwill in reply to Jefner]

I used symprove and at least two bottles of restore. My supplements fill their own large box but I wouldn't have got here without them so will reduce them when I am much better. Try the SIBO summit as mentioned on the website above as I learnt a lot from the first one this year. We need as much help as we can get.

[Jefner in reply to cwill]

cwill

What supplements do you have, mine fill my shelf. Are you still fighting SIBO?

[Jefner in reply to cwill]

cwill

What supplements do you take, mine fill the shelf too. Are you still fighting SIBO?