Is this normal, really feel like throwing in th... - Thyroid UK

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Is this normal, really feel like throwing in the towel, again.

Jamima profile image
12 Replies

My last test results (around 8 weeks ago) showed I was almost optimally medicated. I was using Levo at 50 snd t3 at 6 and getting chest pains on exertion but kept on as I felt slightly better than when I started., but only slightly. I raised my Levo by 12.5 and the usual happened - brain fog, exceptionally tired, very cold. So I switched to 4 x metavive I (7 weeks) and was doing slightly better, less tired/brain fog and chest pains stopped. Over the last week I’ve been absolutely freezing, my body temp is around 36.5 but I’m currently sitting in a room with a central heating radiator, extra heater 2 thermal vests, a jumper, cardigan and gilet on and I’m freezing. I added 50 Levo last night at bedtime as the freezing thing is intolerable and now I feel like utter crap. Is this just me and Levo? Is this what happens with any increase? Do I even need thyroid hormone? Is Levo pushing my cortisol down because I’ve been asleep from 5pm to 8pm and I’m knackered after doing nothing all day.

I’ve never been ‘typical’ hypo, all my results are low inc cortisol but I’m sick and tired of being tired and cold, regardless of how much hormone I use. Mornings are still very difficult with fog and fatigue until lunchtime.

If anyone has any experience of this I’d be really grateful if you could share.

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Jamima
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12 Replies
FallingInReverse profile image
FallingInReverse

Did you say you have new blood results? Last I see are 8 weeks ago?

Was just looking at your history/posts and it looks like you have made a few different changes since the last post/blood test only 8 weeks ago?

Is it correct that you went from being on

1)Levo 50 and t3 6, to

2)Levo 62.5 and t3 6 for one week, to

3)zero Levo and zero t3 and 4x Metavive for 7 weeks?

I’m not sure if I’m reading that right but - referencing a previous reply in one of your posts - this here reflects my latest favorite:

healthunlocked.com/thyroidu...

Firstly, it is important to give your body the 6-8 weeks it takes for our blood chemistry to stabilize, which with the 7 weeks on metavive you did, but if you did change too many things at one time - its impossible to tell what was the key driver to feeling better or worse.

For example, I just titrated from 50 to 62.5 Levo, I am several weeks in and I need to be talked of the ledge of trying to change things up almost daily. I have a long list of other things that are not optimal - but they have to get in line as I’m changing 1 thing every 6 weeks. Sounds miserable until I get my head above water, but … patience.

That being said - sick & tired of being sick & tired describes lots of us, and I’m in the same phase searching for optimal meds. In the meantime I have 1-2 good days every month, during which I’m convinced I’m all better lol! Then I go back to fatigued, heavy-limbs, brain fog, and wearing at least 3 fleece layers with blankets when I’m sitting.

Let’s see what other responses come in, but it would be helpful to see your latest bloods in the meantime.

Jamima profile image
Jamima in reply to FallingInReverse

Many thanks FallingInReverse, you’re right with regards to changing doses too quickly, I was doing well on 3 x met I and shouldn’t have tinkered with the Levo. I’m not good with Levo, I know this from previous trials. I can ‘tolerate’ it as long as I add a small amount of T3 but it’s still not a good fit, it makes me feel horrendous almost immediately and I’ve worked out over the past couple of days it’s because it messes with my cortisol. I took some hydrocortisone yesterday and woke this morning feeling the most ‘normal’ I’ve felt in years - no ‘hangover’ feeling, no tongue stuck to the roof of my mouth and desperate feeling of dehydration, eyes open, not half shut. I know I have sluggish adrenals and shouldn’t have ignored them but the metavive seemed to help, until it didn’t. I’m going to continue with metavive and I’ve added in adrenavive. My adrenals are better than they were a year ago, but still need help. Thanks again.

posthinking01 profile image
posthinking01

Hi there, I am so sorry you are suffering so - been there - done that and bought the T shirt etc. etc. As an adrenal insufficiency diagnosed person - I do tend to know a little about this subject. First of all you are quite right in asking does thyroid hormone reduce your adrenal hormone (cortisol) - yes it does. As you raise the metabolic rate (i.e. speed up your energy levels) the adrenal glands need to help supply the cortisol needed for your new energy state. Cortisol in someone who has a good adrenal response will more than likely not notice there is a problem. But those of us who have had a thyroid problem more than likely undiagnosed for many years - will have been running on an adrenal gland response for our energy etc. - (adrenaline) which depletes them finally when we need them the most. Having fought for years to get on thyroid hormone going from Private Consultants in London etc. and the NHS - an appointment with one consultant stated that I should be taking a trace amount of steroid if I was to be put on thyroid hormone to help the uptake from the adrenal glands - I refused - steroids - hated word and drug ! However, struggling for many years I then went back to an NHS Endo who previously had disputed the steroid line and then was advocating that steroids should be used to help the adrenals initially - I was flabbergasted as she had ignored my conversation on that topic previously.

Having experienced adrenal insufficiency first hand - I can tell you that cold and heat will affect the thyroid gland and the adrenals - it is obvious really that the thyroid gland is our thermostat so if it is cold then the thermostat needs to be at optimum level. In the heat the thermostat needs to be at the correct level to keep us cool. I actually take slightly more thyroid hormone during the cold weather and less in the Summer. I am on liquid thyroid hormone due to lactose intolerance so a lot easier for me to up and down dose at will.

If you are on HRT or similar this can affect your thyroid and adrenals as well.

It also needs to be mentioned here that I am only speaking from an auto immune thyroid deficiency i.e. Hashimoto's - all I can suggest is that you get your bloods taken again and mention how cold you are as that is something that needs checking out. To help your adrenals naturally - as someone who has used nutrition to help with my various medical issues along the way (Lupus as well) - there are various vitamin and mineral deficiencies that can be causing you to feel so cold as well as the thyroid problem etc. - the thyroid needs B12 and the adrenal glands have more need for Vitamin C than any other organ within the human body. As you have sped up your body it will have used up B12 and Vitamin C in larger amounts too - so if you can get yourself checked out for B12 -Vitamin D to start with and other items the forum here suggest to support the thyroid.

everlywell.com/blog/vitamin...

Hope all this helps !

Jamima profile image
Jamima in reply to posthinking01

Thanks so much postthinking01, you’re absolutely spot on with the adrenal assessment. I know from previous trials of Levo that it pushes my cortisol down. I’m happier and more balanced on metavive as I expect the t3 element helps with low adrenal output but I’d stopped supporting my adrenals when I started met. I now know I shouldn’t have and have re-started adrenabive. My B12 had dropped a bit at last test but not into a danger zone and I’ve re-started ingennud b complex which gave me good readings. I take vit d +k2 daily and 2mg vit c daily. It was the adrenals.

posthinking01 profile image
posthinking01

Sorry forgot to add the amazing B Vitamins for the adrenal glands - a good B complex should suffice. You should only take individual B vitamins under supervision.

Jamima profile image
Jamima in reply to posthinking01

Thank you.

debra_bill profile image
debra_bill

If your B12 is low take a look at the PAS area on Healthunlocked. I self inject due to lack of GP interest and symptoms that I put down to my thyroid are slowly disappearing. You can take a liquid form too.

Jamima profile image
Jamima in reply to debra_bill

Thank you, my b12 had dropped a little at my last test but I’ve restarted igennus and separate sublingual b12 so hoping that’ll show improvement at my next test.

debra_bill profile image
debra_bill in reply to Jamima

Once you're topping up your B12 there is no point in blood tests. You have to go by symptoms, which can be difficult if you didn't realise that you had them! I saw changes to symptoms that I thought were thyroid, so I just need to keep going until I get no more changes, then I can concentrate on my T4 & T3 meds to try and get rid of the rest.

Good luck.

Jamima profile image
Jamima in reply to debra_bill

hello again debra_bill. I’ve recently started Igennus b vits again and have noticed that about 40 mins / 1 hour after I take them, I feel more clear headed and energised. How do I start to check if I have a B12 absorption problem? I also have a swollen cracked tongue with scalloped edges but I know this can be a hypo issue too. Any help would be appreciated.

debra_bill profile image
debra_bill in reply to Jamima

I really don't know much other than what I do I'm afraid. I suggest that you go onto the PAS area where you'll get lots of help.

Try asking on here....healthunlocked.com/pasoc

Jamima profile image
Jamima in reply to debra_bill

I have done, thank you.

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