Please help - Can't seem to tolerate thyroid me... - Thyroid UK

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Please help - Can't seem to tolerate thyroid meds anymore!

Rachel357 profile image
19 Replies

Since the end of August I’ve hardly been able to take anything for my thyroid. Please see my previous post:

healthunlocked.com/thyroidu...

Lately, I haven’t been able to take more than one Metavive II capsule without getting symptoms of being over-medicated (fast heart rate, jittery, anxiousness, irritable), although my temperature in the mornings is always 36.1 C. If I try to increase my dose I end up not being able to take anything for about a week after. It’s strange as I also feel quite under-medicated at times too. I had a blood test when I felt very over-medicated at the beginning of September and my TSH had gone up to 0.85 (0.27-4.2). Previously it was 0.15. Nothing else was tested as it was done at my GP’s.

I’m very upset as I can’t go for walks anymore as my heart rate gets so fast that I feel ill after. I also find that I have mouth open a lot to help me breathe.

I started feeling under-medicated at the end of last week as my thyroid was aching and my reflexes seemed slower as I kept dropping things. I started taking T3 yesterday, without the Metavive, as I don’t want to take it anymore. I took 6.25mcg split into two doses which was taken in the morning and afternoon. Last night I started to feel a bit over-medicated and my heart rate when I woke up this morning was around 72 but temperature was still 36.1 C. My normal heart rate in the morning when I'm feeling well is about 60. I skipped this morning's dose and took 3.12mcg this afternoon. I'm now feeling over-medicated again this evening.

Does anyone have any idea of what’s going on and has this happened to anyone else before?

Thank you.

19 Replies
jezebel69 profile image
jezebel69

Hi

I have a very similar problem and have just posted my lab results. I had become very hyper too. I just hope we can get some help understanding what’s happening. I had been on 100 mcg and felt fine. I eventually came off completely before I felt any better.

Rachel357 profile image
Rachel357 in reply to jezebel69

I hope you get some answers soon.

SlowDragon profile image
SlowDragonAdministrator

Suggest you settle on a constant unchanging dose for 6-8 weeks and then get FULL Thyroid and vitamin testing done

Chopping and changing dose upsets adrenals

Do you have Hashimoto’s?

What vitamin supplements are you currently taking

Are you strictly gluten free diet

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS (eg vitamin B complex)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, or Metavive make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Come back with new post once you get results

Might consider adrenal testing too

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Rachel357 profile image
Rachel357 in reply to SlowDragon

Hi, thank you for your advice. Yes I'm starting to think it might be an adrenal problem. If I get very over-medicated would it still be okay for me to continue with the same dose everyday?

No I don't have Hashimotos and I'm gluten free. These are my recent results for vitamins:

Vit D 129.00 nmol/L (50-175)

Vit B12 >2000 ng/L (>180)

Folate 17 ng/ml (3.9-20)

Ferritin 65.90 ug/L (13-150)

posthinking01 profile image
posthinking01

Sorry not sure what Metavive is but if it contains T3 then this is probably your problem - I took Armour Thyroid for several years and did not realise that the breathlessness - the profuse sweating was due to the T3 component - it was only when an Endo said to me I think you are over medicated (and of course I had fought and fought to get on T3 meds so didn't want to hear what she was saying) and was forced t come off the Armour for ordinary T4 because of a test I was having that I realised she was right - she then went on to say that I may have damaged my heart - I could not walk more than a couple of yards without feeling my chest was about to burst. I have not had any of those symptoms since. I got my life back - T3 is not the be all and end all for everyone I feel.

Rachel357 profile image
Rachel357 in reply to posthinking01

Hi, unfortunately I can't tolerate T4 either. I took it for 18 months and could only raise it up to 31.25mcg. My blood results were always good but I never had any energy and it made my abdomen swollen like I was pregnant. I took an NDT for six months before I started the Metavive. I have been taking the Metavive for about 18 months and was fine up until recently.

PavlovaDog profile image
PavlovaDog in reply to Rachel357

I don't know what Metavive is, but a number of thyroid medications are on recall due to incorrect levels of T3. Perhaps your medicine has also been affected by this. I just got switched from NP Thyroid to Euthroyx T4 only because of all the recalls. I have to say I feel better than I have in years since going to T4 only.

posthinking01 profile image
posthinking01

Hmm I had that swelling of the abdomen I looked 9 months pregnant but that was before I went on thyroid hormones at all. It sounds to me like your hormone is not getting through to the cells which can happen - it is floating around getting toxic .

1. Your thyroid hormone dose is too low.

Often this is the case, and the doctor or consultant wont increase it, since the blood levels appear perfectly okay. Sometimes, though, the dose of thyroxine is quite high 200 mcg 300 mcg but you still dont feel well.

2. Partial response to the single synthetic thyroxine replacement.

Your thyroid produces four other hormones apart from thyroxine, and most of us need them all. Without them our response is limited and synthetic thyroxine may not suit the system as well as the natural thyroid hormones.

3. Adrenal fatigue or exhaustion.

This is very commonly met with indeed. The production of thyroxine (T4), its conversion to triiodothyronine(T3), and the receptor uptake (called binding) requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however).

4. Failure of the 5 de-iodinase enzyme.

This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn't. If the illness has been going on too long, the enzyme seems to fail. This conversion failure (inexplicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn't work, and T4 toxicosis results. This makes you feel quite unwell, toxic, often with palpitations and chest pain. (I refer to this further on.) If provision of adrenal support doesn't remedy the situation, the final solution is the use of the thyroid hormone, already converted, T3.

5. Receptor resistance.

Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors is downgraded; the T3 just wont go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do actually come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually.

6. Food allergies.

The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid.

There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.

7. Presence of systemic candidiasis.

This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer frightful sweet cravings. (I wouldnt be surprised if it can synthesize a neurotransmitter, which causes such craving that you have to have chocolate, on pain of death.) Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels which we usually test for can be very high indeed, and make successful treatment difficult to achieve until adequately treated. (More of this further on.)

8. Hormone imbalances.

The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function.

9. Mercury Poisoning:

There are numerous heavy metals which can be toxic to one’s health. Some of the more common ones include aluminium, lead, cadmium, arsenic and then there’s mercury. A lot of people with thyroid and autoimmune thyroid conditions have high levels of mercury in their tissues. And this heavy metal can potentially lead to the development of these conditions. In other cases mercury isn’t a direct cause of a thyroid or autoimmune thyroid disorder, but still is something that eventually needs to be addressed.

10. Low Levels of Specific Nutrients

Thyroid hormone cannot be fully utilised if levels of specific nutrients are too low in the reference range. These are iron, transferrin saturation%, ferritin, vitamin B12, vitasmin D3, magnesium, folate, copper and zinc. Ask your doctor to test these for you and get the results, together with the reference range for each of these tests and post them here on the forum so we can help with their interpretation. In fact, always post the reference range of whatever tests you have had done. Doctors are not really taught very well how to interpret blood test results, and quite often, if they appear ANYWHERE within the range, they will tell you that your results are normal. It matters whether they are at the bottom, the middle or the top of the range.

LOW MINERALS AND VITAMINS AND THE THYROID CONNECTION

Low iron/ferritin:

Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4))

Rachel357 profile image
Rachel357 in reply to posthinking01

Thank you for the information. It was strange with the swelling of the abdomen because as soon as I stopped taking the T4 it went away.

I think I currently have an adrenal problem brought on by adding the T3 a couple of months ago and not realising I was over-medicated at the time. I only took it once as the lactose in it affected me but I only skipped one Metavive dose after and didn't realise I was still over-medicated until a week later. I think taking T3 just the once messed with me too, as I felt quite well on it, so my body was probably missing the extra T3.

posthinking01 profile image
posthinking01

Hi again - I actually went on to be diagnosed with an adrenal issue and have to take steroids for life. In fact I am convinced my problems were thyroiditis - inflammation of the thyroid and a course of steroids could have sorted me out - early on when I got ill - my test results always showed a normal range albeit right at the bottom - but I had over 100 symptoms practically everyone bar the mental health ones on the Thyroid UK symptoms list - some were life threatening - I was yellow at times - fading in and out as the gall bladder and liver were struggling.

I am now on lactose free medication which is a liquid - I didn't realise I was lactose intolerant but felt so ill when I look at pictures of me now it is obvious not enough if any hormone was getting into my body but was going down the loo because of the lactose.

When you speed up your metabolism your adrenals have to perk up too to support it - hence why you will bad if you have an issue with weak adrenals - you could try taking a good quality B complex and Vitamin C as the adrenals need C big time otherwise they will take it away from other parts of your body - I once got scurvy because I was on Armour with no help for the adrenals which were always weak. A scar on my abdomen seemed to be getting wider and wider as the collagen was being weakened by the adrenals pinching Cfrom the skin.

Hope this helps

Rachel357 profile image
Rachel357 in reply to posthinking01

Thank you. It sounds like you were in a very bad way. My cortisol has always been a bit high. I think I need to do another adrenal saliva test.

I also have two peptic ulcers from taking ibuprofen a year last April. I can hardly move because of them and can't eat properly. I have been getting so stressed because of them, especially the past few months as they've been getting worse. So I suppose this might have also been causing my adrenal problems.

posthinking01 profile image
posthinking01

Hi again I am very sorry to hear about your ulcers - have you asked your GP to test you for H Pylori - even though it may be that the Ibuprofen caused your problem - H Pylori must never be ignored - it is a bacteria that eats the stomach wall. You would then take two different antibiotics together which will heal the ulcer - it will never heal with that bug present. Worth a request.

It could also be that your stomach lining has been eaten into by your high cortisol levels that could have occurred because your adrenals are low - believe it or not. Cortisol will be pumped out from the pituitary route rather than the adrenals themselves because of the stress on the body due to low adrenal function - cortisol being supplied to keep you alive. This can damage the stomach - which is why they always said that stress causes ulcers.

If you don't have enough Vitamin C to supply the adrenals then the C will be taken away from the body as I have said previously and this too could have caused the ulcers or made you prone - as C is needed to make stomach acid so this might have been so depleted it allowed your stomach lining to be vulnerable to damage or the bug.

There again another scenario is that the high cortisol is being caused by the ulcers themselves causing the body to show distress by producing cortisol to try to help the situation - it is a bit chicken and egg situation with all of your issues.

Please ask your GP to test you for H Pylori and one would hope they are helping you with your digestive issues - it must be awful for you - the pain on eating.

I hope this helps you for the moment and makes sense - please ask if I can help any further or you don't understand what I have just posted - by the way - why did you take Ibuprofen?

Rachel357 profile image
Rachel357 in reply to posthinking01

Thank you. I was tested for H Pylori last year and it came back negative.

I took ibuprofen for only two days as my neck seized up. I've always been against taking ibuprofen and it was strange that I took it, but I was feeling quite desperate as I had a busy week. Since I've been ill with my thyroid I often find I'm very impulsive and do stupid things because of it. When I took my last dose of ibuprofen I only had a little snack as it was about 9pm. I then woke up at midnight with a burning pain in my abdomen. I saw a gastroenterologist last year and he thought it seemed strange that I have ulcers so low in my abdomen as they are near my belly button. I had an ultrasound but that didn't show anything. I want to have a capsule endoscopy and I have been referred again to the hospital but there is a delay because of covid.

posthinking01 profile image
posthinking01 in reply to Rachel357

Hi there - are you sure this isn't an appendix issue as that pain starts near the belly button. See this for info:

facty.com/conditions/append...

Rachel357 profile image
Rachel357 in reply to posthinking01

Hi, no I don't think it's my appendix, especially as it says loss of appetite is one of the main symptoms. I have to eat constantly otherwise the ulcers start hurting. I have a very limited diet though as a lot of food I can't eat due to the ulcers and I also think I have SIBO.

reliablerebel profile image
reliablerebel

Hi Rachel, sounds like you are super sensitive to T3 - as am I - I cannot take T3 meds, but I can take metavive - although I did overmedicate on it at first. Now taking two metavive11/day - was on 3 thai thiroyd/day but they ran out! What were you taking before you tried metavive.

Rachel357 profile image
Rachel357 in reply to reliablerebel

Hi, last week I realised that it’s been Glycine (which I’ve been taking for my gut) that’s been causing my adrenal issues and thereby intolerance to thyroid meds. It’s supposed to be good for the nervous system and aids sleep but it did the complete opposite for me. I had been trying to come off it since September as it was causing sleep paralysis but whenever I stopped taking it or lowered my dose it gave me insomnia. So I’ve been taking a small amount every evening up until last week. Then I thought I would try taking it during the day and within 20 minutes of taking it I became wired and jittery and my heart rate increased. I’ve managed to come off it now and I’m hoping I will be able to take T3 more normally now, as all I’ve been taking the past few weeks is about 3mcg.

Before taking Metavive, I took Thiroyd but that was too strong for me and the lactose was a problem for me, before that was Naturethroid which was too weak and Levo. I’m hoping I’m going to tolerate T3 eventually as I don’t tolerate T4 very well. I did fine on Metavive until they reformulated it.

reliablerebel profile image
reliablerebel

Well I do hope it all works out for you x

Rachel357 profile image
Rachel357 in reply to reliablerebel

Thanks! I hope you continue to do well on the Metavive x

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