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Feel so ill

Feel so ill

Hi all..

I've added my blood test results from when I was having 50mcg of Levo.

I feel terrible, my biggest symptoms being extreme fatigue, brain fog and severe hair loss. I've also had this spitting headache (&head pressure) for the last year which seems to be unbearing now 😢.

I've upped my dose in the last two weeks to 75mcg, advised from you wonderful pple here, however I feel no difference.

I'm thinking of adding a t3 to my existing 75mcg dose.. or should I be taking just t3? I know I will have to order online, so anyone who knows a reliable source please can you kindly advise me where I can get it from and how much of what I should dose myself.

I should also mention, I'm trying for a baby so hopefully anything that will be safe.

Any advise and suggestions would be greatly appreciated.

D3 was tested recent - 125

Thank you

54 Replies
oldestnewest

I also take b12, b2, ferrous sulphate, sea kelp, magnesium oil spray. And vit d.

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Sea Kelp is a very bad idea and could be making you worse. It is anti-thyroid.

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It's day 3 of having it. I will discontinue.

Thank you

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Good. :)

You should never take any form of iodine without getting it tested first. If you're not deficient, don't take it. Did you get your vit D tested before supplementing?

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Yes.. vit d was tested about two weeks ago.

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Good. :) So, what was the result, and how much are you taking?

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Vit d 182nmol. I normally take 20000du every fortnight or once a week depending how poorly I feel.

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Well, you don't give a range for that vit D, so I don't know how high or low that is. So, you're just taking a maintenance dose, really.

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Your VitD level is fine so I would stop supplementing. Around 100-150 is OPTIMAL. Are you taking the co-factors - magnesium and VitK2-MK7 ?

If your VitD drops in the future I would be inclined to take VitD daily or every other day at around 5000 IU's. I have read it is more effective that way - rather than bolus dosing.

grassrootshealth.net

Your high level could be the cause of your headaches.

Low Iron can also cause headaches - as iron transports oxygen around the body in the red blood cells. Low Iron = Low Oxygen = headaches or breathlessness ....

Taking PPI's is not a good idea for many reasons. LOADS of posts here about them if you type into Search Thyroid UK Box ....

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I know PPIs are bad for you but I was diagnosed with Barrett’s esophagus in May. Acid from stomach getting to my esophagus where it doesn’t belong. I could get cancer if I don’t take them. Don’t know what to do.

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Sorry to hear that. How are your T3 levels ?

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They were in lower part of range. I had to educate my dr. About T3 being active hormone. At least he listened. I also convinced him to even add T3 made him read a post on here.

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Your FT4 store is high at 23.2.

This means you have plenty of T4 in your system, but are taking only a small amount of T4.

I take 125 T4 and my level is around 20.

So this indicates you are not absorbing the T4 very well.

It would be good to get a Ft3 blood test so you can see where your T3 levels sit.

TSH is 0.7 and this is a good place to be, but the Ft4 and Ft3 numbers are much more important.

Have you had any antibody tests done for the thyroid ? This would be recommended as well.

By all means see what more T4 feels like, but when someone is going up and up with the T4 and the Ft4 is just going higher and higher and the person still feels ill, the solution is not more T4. There is an absorption issue going on. This can be down to poor digestive absorption or very often an unbalanced adrenal system. This means there is not enough cortisol to take the T3 into the cells.

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Thank you for replying back.

My doc did order free t3 but that was never tested in the lab. I sometimes take opeorazole for reflux but not all the time.

How can I get enough cortisol?

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You don't have an absorption problem or your FT4 wouldn't be that high on 75 mcg levo. Your problem is more likely to be conversion, but you won't know that unless you have your FT4 and FT3 tested at the same time.

I wouldn't worry about cortisol and T3 getting into the cells yet, because you don't even know if you have any T3 to get into the cells, until you get those tests done. :)

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I know by gp will defo not order these tests..

The test results above were done on dose of 50mcg. It's been two weeks since being on 75mcg.

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Well, that's even worse, then. If your FT4 was that high on just 50 mcg, and you're still feeling unwell, then your problem is more than likely poor conversion.

I know doctors/labs refuse to test FT3, but you could get them done privately. It really is very, very important that you know how well you convert, because you cannot just go on increasing your levo dose ad infinitum.

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When hypothyroid, because everything in our body has slowed, we are apt to have 'low acid' in our stomach rather than high and can have gut issues. Symptoms of high or low are very similar.

I shall give you a link which may be helpful.

scdlifestyle.com/2014/08/th...

Most of us add a digestive enzyme with meals so that it helps dissolve food.

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Thank you..

Can I ask which digestive enzyme you use please . I rather get ones that are recommended and reliable 😊

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I buy mine through Amazon and use a link in which Thyroiduk gets a tiny increment which helps to defray office expenses. I have bought this one but others too and this is the link to use:

amazon.co.uk/Quest-Enzyme-D...

The following is on the same page and you might want to have a look:-

amazon.co.uk/s/ref=nb_sb_ss...

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Hi and not sure if you were told but you need to make sure you have at least 2 hours between taking the Omeprazole and your other meds or suppliments. Can be a problem with absorption otherwise. Found this out the hard way and still struggling to come right. Do hope you feel better soon.

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I too had problems with that and got good info from this site

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Not sure if you were told that you need to have at least 2 hours between taking Omeprezole and any other meds or suppliments as this can cause a problem with the bodys ability to convert the F4 to F3. Found this out the hard way and still struggling to come right. I do hope you are able to sort this and feel a lot better soon.

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Hi. Yes. I leave at least 4 hours between Levo and any other meds x

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The T3 test is important to get to really show what is happening behind the scenes. This goes for the antibody tests as well. You can get them done privately with medichecks or blue horizon and cost about £60-80.

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Your Potassium is at the bottom of the range, do you like bananas - eat one each morning?

If you haven't had Folate and Vitamin D tested then ask GP for these. Also, have you had a Full Blood Count?

Because of your symptoms you could ask for referal to an Endocrinologist. Hopefully they would test FT3?

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Maya

Those results appear to be from 03/08/2017. They're not applicable now.

A couple of weeks ago you said in your post

"My ranges are below, just had them done last week.

T4 (16.2 PMOL/L)

TSH ( 3.27UM/L)"

So we can only go by your latest results but you don't give any reference ranges (the numbers in brackets like you can see in the picture you posted above).

If the ranges are the same then you are undermedicated and need an increase in your Levo.

The aim of a treated hypo patient generally is for TSH to be 1 or lower or wherever it is needed for FT4 and FT3 to be in the upper part of their reference ranges if that is where you feel well.

You say you are now taking 75mcg Levo and have been for 2 weeks but feel no different. It takes 6 weeks from a dose change to be fully effective so you won't feel much difference yet. You need to give it a few more weeks.

You can't know whether or not you need T3 until your TSH is around 1, and have TSH, FT4 and FT3 tested at the same time. Then if FT4 is high in range and FT3 low in range that will show poor conversion and the need for T3. If GP won't or can't get T3 tested, you can do a home fingerprick blood test to do the full thyroid tests.

Have you had thyroid antibodies tested?

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Hi susie.. the reason why I posted my results from 03/08/17 is because I was on 50mcg for a long time and with all these issues going on for a long time about 8/9months, headache being the most dominant.

Then these results from about 3/4 weeks

T4 16.2 (10.5-24.5)

TSH 3.27 (0.27-4.2) I was off Levo for s week when this test was taken, would it make any difference?

Thyroid peroxides anti. 16. Kunits/l (this was also taken on 3/8/17)

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Yes, indeed it would make a difference to be off Levo for a week. Is there a reason you left it off for a week?

Levo should be left off for 24 hours when testing - and blood draw should be the first appointment of the day and we should fast overnight. Leaving off Levo for the length of time you did will give a much lower FT4 - Levo has a half life of 7 days so whatever was in your blood will be halved after 7 days when you leave off Levo. It might also give you a higher TSH. That could explain those results.

The best thing you can do is continue with your 75mcg now and retest 6 weeks after you started it, that will give you your current thyroid levels at that time and then you can see what you need to do.

There are two types of thyroid antibodies, Thyroid Peroxidase which you have had tested which are probably negative, although again you have not given the range. Then there is Thyroglobulin. You can be negative for TPO but positive for TG. You should really have TG antibodies tested to rule out (or in) autoimmune thyroid disease aka Hashimoto's. Your GP won't do that test, it's rarely done unless an endo does it. It can be done with a home fingerprick blood test with Medichecks or Blue Horizon as part of one of their thyroid bundles.

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Ok so I will continue with the 75mcg and retest bloods in 6 weeks, Il also do the bundle test on medichecks. Hopefully after that things will be much clearer.

I really appreciate everyone's help, thank you x

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If you want to test thyroid antibodies as well (highly recommended if you haven't already done so) then look at this test

medichecks.com/thyroid-func...

Quite often discounted on "Thyroid Thursdays" so do check on a Thursday and you might be able to save at least £10.

The test that doesn't include antibodies is this one medichecks.com/thyroid-func... but only do that one if you have had positive antibody results previously.

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Your long term headache may be a separate issue; some things are not due to the thyroid. I assume you've tried painkillers. Have you asked your doctor about it? There may be other medical reasons for it which should be investigated.

You may also find that a good osteopath can help, but ask round for recommendations if you don't know one already. Sometimes nerves can get trapped. My son had a headache for weeks (might have been caused by playing rugby) and nothing worked until we found someone to manipulate his neck.

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Hi..

Yes, docs have given me various painkillers, non of them even took the edge off. Also had MRI, Ct scan blood test but nothing showed up😢 so I'm wondering if there is a connect with thyroid..!

I will go chiropractor ago.. any recommendations? I'm from London..

😊

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Headaches are listed as a side effect of Levo, also other medications can cause them, worth checking the patient information leaflet of anything else you take, also Google for interactions of meds and supplements you use.

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I'm not on any other meds Susie, apart from opeorazole which I take once in a while when needed really.

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My Mum had headaches when on Omezprazole. When it was changed to Lansoprazole the headaches stopped. I believe that is a side effect of Omezprazole in some people. I've never had it. Am on a PPI though : Zoton Fastab Lansoprazole orodispersible. I need it to prevent further acid damage having sustained some.

Could ask GP to change to Lansoprazole? Or try Gaviscon Advance after main meal and at night?

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Sorry, I live in Suffolk - and London's a big place!

Osteopath or chiropractor? Over the years I have seen both, some excellent and others not so, so it's worth trying to get a recommendation from someone. Can any of your friends recommend someone they have seen?

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What is your red blood cell (not serum) level of magnesium? Low magnesium can cause headaches. Your potassium is also too low, which can cause muscle cramps and muscle tension. Both of these minerals are critical for proper muscle and nerve function. What sorts of food does your diet consist of? Do you eat a lot of processed foods?

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Hi.. I'm taking a magnesium supplement daily now use a spray oil. I do have processed food but not a lot.

I also eat 1 banana a day.

How else can I up magnesium and potassium?

Thank you

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Hi Maya! Do you have any gut or know absorption issues? What other sources of potassium are in your diet? The daily requirement of potassium (where I'm at) is 4,700 mg per day. That's a lot! Low or potassium deficiency is quite common, unless a person is supplementing. A banana only contains 9% of that, at 422 mg. That's not much. Slightly better sources of potassium are a cup of sweet potato (542), white potato (940), tomato (728), watermelon (640), spinach (540), beets (580), black beans (740), white beans (1130), 5 ounce canned salmon (490), butternut squash (585), swish chard (960), yogurt (570).

What type of magnesium are you taking? Some types are better than others. If you're only using a spray, you can't measure how much you're taking, or how much you're absorbing. Oral magnesium, different forms have different absorption levels, but you can calculate mg's and absorption percentages to get an idea how much you're absorbing.

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I suffered from acid reflux 5 years ago, I take gaviscon sometimes when I might have a flare up.

Do you have a good brand magnesium that I can take.? I was just having the ones from Holland and barret

Thank you

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Hi. The type of magnesium is what matters most. Which type are you taking?

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Cheleated magnesium

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How can I attach a second pic To this thread? 😊

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No, only one picture can be added.

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4 things help your thyroid to work better so get your Vit D, B12, folate and ferritin tested. Those need to be optimal, not just in range so post with ranges for further advice. They also help with conversion but it can take months depending how low things are but many of us have to supplement. They can also help with some of your symptoms. Labs don't realise the importance of a FT3 reading but are concerned about the cost but with a suspicion of low conversion refuse to drop your dose without FT3 being tested. If you are already low then dropping your level of T4 will deplete it further. If they say no then ask to see an endocrinologist.

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Your FT4 means nothing. I've had an FT4 of 25 and an FT3 of 3. You're not converting T4 to T3. I think you'll find that this is the reason for the migraine. You can with add T3 to your meds or take T3 only. Personally, A T3/T4 mix did not suit me and the headache persisted although the bloods looked ok. I just couldn't tolerate Levo.

I switched to NDT in September 2017 and never felt better. Bloods spot on and I'm fine.

It's taken 5 years to sort this out.

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When my potassium is as low as yours I feel crummy! Really important to get it up to about 4.0 to 4.2.

Bananas, avocado, melon are a high in potassium. Google high potassium foods and introduce to your daily diet. Some can be high in carbs so be aware of this.

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Potatoes are the potassium bomb.

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You want to hold off getting pregnant until your TSH is under 1, t4 & T3 are in the upper quarter. & your B12, Vit D, Iron, Folate are optimal. (Not just in range.) & they have been that way for 6mths.

If you add your results (with ranges) we can help you.

Do you know how to increase your T4 the moment you fall pregnant?

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Hi.. I've given my test results above.

I have no idea how I would increase it, pls advice.. Thank you

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I am just off to the docs, (about ongoing issues with my thyroid!) but I will post when I get back!

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I have just had my 3rd baby. I self medicated for pregnancy 1 and 2 on NDT (a mix of T4 and T3.) and extra T3. During pregnancy 3, I was persuaded by my consultant to change to T4 only. (Levo.)

Before you start trying to get pregnant:

Make sure your TSH is low. (see below)

Make sure your T3 is in the upper quarter of the range.

Make sure your T4 is in the upper quarter of the range.

(Are you on NDT? If you are on NDT rather than Levo, then you will be looking at something different-see below.)

Have your B12, Vit D, Iron and Folic (as you will be taking folic acid tablets for 3mths before you start to try, and for the 1st 12 wks of the pregnancy, this will obviously make a difference.) levels tested to make sure they are “optimal”, not just in range. (Let us know if you need help with this.)

It advised to Keep them like this for 6mths for before trying to conceive.

Check out the website, hyperthyroidmom.com. It has lots of great articles, (I have included some thyroid/pregnancy articles at the bottom) and advice you can take to your GP. (You GP will know very little about the thyroid in pregnancy, so it is very important for you to get as knowledgeable as you can.) Buy the book “Your Healthy Pregnancy with Thyroid Disease”, by Dana Trentini & Mary Shoman.

When you find out that you are pregnant, then increase your Levo/thyroxinne (T4) by 30%, straight away. The demand increases as soon as 4-6 wks into pregnancy and we are trying to avoid miss carriage/brain damage to the baby. Then go to your GP and make sure they know you need blood tests every 4weeks until 20weeks. The results of these tests, will likely show that you need further increases. (Don’t increase without the blood tests to tell you how much you need.) Your blood tests need to include T3 results. If your GP won’t do this, get private testing done through “Blue Horizon.” As always, get copies of all your blood tests, and post on here for advice. Do not accept your GP telling you that you are “normal” or “within range” as very few of them know what is healthy for pregnancy. (or otherwise!) At 20 wks, the demands usually plateau and you will need tests/increases less often. (The book tells you how often.)

If like me, you take NDT (T4 and T3) rather than Levo/thyroxine (T4) then the instructions for increasing are not as straight forward, but can and must be done. To get advice, I emailed Lyn Mynott who began Thyroiduk: enquiries@thyroiduk.org. I put “Pregnancy Guidelines” in the subject line and she asked a doctor for me. He advised that I follow the instructions for increasing levo, but that I shouldn’t increase T3 at the same rate as increasing T4. (This was easy for me, because I take NDT plus extra T3.) You will read some articles saying that you shouldn’t take T3 in pregnancy as it crosses the placenta and some saying its fine-you will need to do your own research.)

The book I mentioned above, gives this advice about the TSH levels you need to have to have a healthy pregnancy. This is really helpful to take to your doctor.

First trimester: less than 2.5 with a range of 0.1-2.5

Second trimester: 0.2-3.0

Third trimester: 0.3-3.0.

TSH should be monitored every 4 weeks during the first 20 weeks of gestation, then once again between 26 and 32 weeks

If you are on NDT (Ie. Taking T3, your TSH should will be almost 0 with a low T4 in pregnancy (and non pregnancy)

Keep an eye on your B12 levels, as pregnancy places a high demand on these and people with an underactive thyroid are usually deficient to begin with. (You can’t overdose on B12, anything you don’t need you will pee out. A bit of a waste of money, but not dangerous!)

Some articles, you may like to read:

thyroid.org/professionals/e...

cks.nice.org.uk/hypothyroid...

cks.nice.org.uk/hypothyroid...

hypothyroidmom.com/what-eve...

dl.dropboxusercontent.com/u...

thyroiduk.org.uk/tuk/about_...

thyroid-info.com/articles/p...

healthunlocked.com/thyroidu...

2017 Guidelines of the American Thyroid Association for the Diagnosis and Management of Thyroid Disease during Pregnancy and the Postpartum

online.liebertpub.com/doi/p...

Ps. I have 3 beautiful, healthy children!

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Oh gosh so much to take in😕I've only just read it a few times lol..

I'm only on Levo, just increased it to 75mcg few weeks back..

I didn't have any info about thyroid on my first pregnancy was only on 50mcg levo which I increased to myself (instincts).

My son had health issues, severe reflux, eczema and at the age of 4 yrs he still vomits 😢. Would you say this is all because I was under treated?!!

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