Feel so Disappointed I’m back on Levo - Thyroid UK

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Feel so Disappointed I’m back on Levo


Well after 4 months of taking NDT Nature Throid

I’m not unfortunately left with no choice but to go back on Levo :(

I was on 2 grains and my most recent blood results came back so low and I needed to increase !

TSH 4.4 (0.27-4.20)

T4 9.8 (12-22)

T3 4.44 3.10-6.8

TG Antibodies increased

TPO Antibodies decreased

I felt so weak every time I tried to increase 1/4 grain I got sweaty and weak felt scared incase the levels were building up in my blood ! There was no improvement, infant I felt worse !

When I saw 2 grains NDT equivalent to 150-200mcg of Levo I panicked !!!

I was on 75mcg Levo albeit that I was undermedicated with TSH of 5.75

I got scared took 75mcg Levo today and had a blinding headache all day 😒 just don’t know where to turn now !

Any comments please and Thankyou for all the

Previous support x


27 Replies

It might be time to consider that your adrenals might be struggling... ie: adrenal fatigue or adrenal exhaustion. This can be the result of stress, either physical or mental strain/stress. Also a good idea to get your iron, b12 and d3 levels checked. For some, it can prove to be impossible to regulate dosage of NDT if any of those are out of whack.

Do read this link and maybe do the self-tests shown on the page? You might have to get your own cortisol (adrenals) saliva (not blood tests) 4 - 5 part cortisol test. Then the trick will be finding a endo who knows what they are doing when it comes to adrenals and other hormones.' Most endos are great until you present them with anything other than diabetes...lol..

By the way, many of us who take NDT end up with our 'sweet spot' (dosage) being between 3 and 5 grains. When one reacts badly when trying to increase NDT, you are absolutely correct in trying to find out why your body won't tolerate the increases.

Kazbe in reply to phoenix23002

Thankyou very much for your reply and invaluable advice I think I will see someone regarding my Adrenals . I have seen Dr P and he did say I’ve got terrible Adrenal fatigue and I was taking Adrenavive, but then I did Saliva Cortisol tests and my results were sky high suggesting I could have Cushings so I had all the tests my Endo rules that out despite my Cortisol being 598(301-596) so only marginally out of the reference range but still high ! I really can not persuade my Endo to look at my Adrenals or pituitary because of my continuous high TSH .

Il keep you posted and Thankyou


phoenix23002 in reply to Kazbe

Not to sound flippant but I think I would find another endo.... easier said than done, I know. One other thing to think about or research... adrenals run on salt. Many folks make themselves an adrenal 'cocktail' and consume it once/twice per day. It consists of 1/4 - 1/2 tsp of natural salt (like celtic/Himalayan/Real Salt) in a glass of water and drink it down. Some add lemon juice and stevia (a natural sweetener that does not effect blood sugar levels) and call it a lemonade..lol. easy to do. Do research or google 'adrenal cocktail' for various recipes. For mild cases of adrenal fatigue they can be helpful.

I wish I could be more helpful but I am not too familiar with adrenal fatigue/exhaustion, never having experienced it myself.

After all these years of having Hashi's I did not know about adrenals needing salt. To think that when I was newly diagnosed with hypothyroidism (in fact it was Hashis but it took 30+ years to self diagnose) I was cutting salt out of my diet and my baby son's diet. l continually get shocked by what I keep on learning on here. Thank you.

Kazbe in reply to marigold22

Wow me too I’ve always avoided salt thinking it was bad for your blood pressure so it does make you wonder I’m a great believer of your body telling you what it needs sometimes ! We live and learn 😀

Kazbe in reply to phoenix23002

When I had blood test in 2017 my sodium levels were at the top of the range dies this mean I have too much salt in my body ? Since then I have reduced eek have I done the wrong thing I’m learning more each day !

Thankyou 😀

phoenix23002 in reply to Kazbe

Kazbe.... do your research/homework on the adrenal cocktail. If your blood pressure is thru the roof and you have hyper tension/heart problems, maybe only do the adrenal cocktail once a day with the 1/4 tsp or not at all? I am not medically qualified to say what you should do without reservation but... most healthy folks do okay with it as long as they drink plenty of fluids/water to keep it all diluted. Some manage to correct adrenal issues with supplements and/or other medications and de-stressing their lives and never use the adrenal cocktail.

There is no substitute for your own good sense and your own 'body sense' to make informed, educated decisions for your health once you have done your own research. No one knows your particular situation better than you do.

Kazbe in reply to phoenix23002

Thankyou Pheonix 23002

I have taken on board everything and I will research everything and like you say you know your body what it tolerates !

I’ve got lots of reading to do but I’m optimistic I like to get things right .

I’ve learnt from all the lovely people on here read do your research and start slowly , everything in moderation ( which is new for me I’m a little bit like a bull in a china shop )

Many Thanks and keep well yourself 😀

Kazbe x

phoenix23002 in reply to Kazbe

Sounds good. Just remember, for most of us, it took awhile to get unwell and it will take awhile to start getting healthy. So.... like you said, easy does it. Keep us posted. :)

Ah, I was about to say, sounds like adrenals. Then I noted phoenix reply. So, that's 2 of us.

I read Dr Peatfield book, How to look after thyroid... I then booked an appointment with Dr P. He diagnosed thyroid crises and adrenal insufficiency. He gave me a physical examination, advised adrenal support supplements, telling me he was so sure, I did not need to pay for adrenal testing.

Although I totally believed the diagnosis (made sense to me due to symptoms), I paid for adrenal test so I could get baseline prior to supplement.

Not surprisingly, the test confirmed Dr P diagnosis.

I would suggest you read the book. See if the symptoms match his expert knowledge. Then, take it from there..

Dr P told me, unless I sorted adrenal issue, thyroid health would not improve sufficiently.

I know the supplements worked well for me.

I'm not a Dr. I am giving you my experience only. I hope it may help you as you search for improvement in your own health.

Kazbe in reply to Supul

Thankyou Supul

I am considering having another telephone consultation with Dr P regarding Adrenals and high Cortisol to see what he thinks .

He was such a nice genuine gentleman

I had total faith in what he said , but he then took ill and went into hospital so I had to go solo for a while .

I will get onto it straight away and get all my vitamins sorted and take things from there .

Thankyou once again

Kazbe 😀

Why don't you try levo + T3? NDT is often not the best choice for Hashi's people. But do look into your nutrients first. Get vit d, vit B12, folate and ferritin tested. :)

Kazbe in reply to greygoose

Thankyou Grey goose

I will get all my nutrients tested and some more bloods see what the state of things are in a few weeks I’m sure your right il have to treat my Adrenals first then focus on my thyroid.

Are there any herbal supplements that might be good for Adrenals rather then Adrenavive, that might be good get all my vitamins tip top and do whatever necessary to help Adrenals and then start again !

Thanks for your support

Kazbe 😀

greygoose in reply to Kazbe

If you have low cortisol, there aren't any herbs that I know of to help. Avoid adaptogens because they tend to lower cortisol, not raise it.

But, adrenals do need lots of vit C and plenty of salt, and protein first thing in the morning. And B vits, but get them tested first. :)

Jenny23 in reply to greygoose

I didn’t know about the salt thing until I read this thread! For about 8 years before I was diagnosed, I totally lost any interest in sweet fixes but craved salty things like crisps and used (and still do) Maldon Sea Salt liberally (way TOO liberally for those I sometimes cook for - ooops) on pretty much everything. Breakfast now is poached eggs on gluten free toast with a liberal helping of salt! Your body knows what it needs? I think it might!

Thank you Greygoose, as ever, for your wise words.

greygoose in reply to Jenny23

You're welcome. :)

Hidden in reply to greygoose

GG - you are so right about protein 😀. I found that the missing protein at breakfast was a BIG piece in the jigsaw. I also reduced the amount of fruit I was having. It's made such a difference to me.

greygoose in reply to Hidden

I'm so glad to hear that. :)

Ari3 in reply to greygoose

How much of each vitamins should be in optimum level for Hashimotos and hypothyroidism? Could you give me rough idea ? Vit b12 iron ferritin folate vit d please? Thank you

greygoose in reply to Ari3

Vit B12, depends if it's serum or active test. For the serum it should be over 500. For active, depends on the range. Iron, there is no ideal level. For ferritin it's best around 100, same for vit D. Folate should be over mid-range. :)

Ari3 in reply to greygoose

Thank you

greygoose in reply to Ari3

You're welcome. :)

I am so goofy sometimes... forgot to post the link, Kazbe. But here it is. :)


Kazbe in reply to phoenix23002

Thankyou for your support and the link 😀

I've read lately that Selenium and high dose vitamin C support adrenals also

Ari3 in reply to marigold22

How much is High dose of vitamin c

marigold22 in reply to Ari3

I only buy Slow Release 1,000mg tablets. I personally take one in morning and one afternoon. Can't overdose on it. Vit C is Wonderful stuff. Have read about 'alternative docs' using up to 10,000mg a day for some patients - can't recall which type of bad health now.

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