Levothyroxine and Edema

Hello all,

My mother is 61 years old. She was diagnosed with underactive thyroid when she was 52 years old and started taking Levothyroxine.

She also had a high chlosterol level during her check-up so was given chlosterol medication.

She has been having assymmetrical joint pains on and off, which have been exacerbated in the last 2-3 years. For example, she would have pain in her right elbow, but her left one would be fine. Due to some doctors’ recommendation, she stopped taking cholestrol medication, which they thought was the culprit. The pains seemed to be improving, but has gotten worse recently.

Her GP cannot explain the reason that she still has assymmetrical pains. He says that the dosage of the thyroid medication is fine. As a last resort, he gave my mother rheumatoid arthritis medication which has not helped up to now.

Upon researching on the internet, I have found this forum and I think that the reason that she is having pains might be her thyroid medication.

If possible, I would be very happy if someone would give us some advice about what to do. I also would be willing to post her recent test results if needed.

Also, we will be vacationing in the UK soon, so I would appreciate if someone could recommend me an expert in this field who can help us.

Best Regards and thanks in advance.

16 Replies
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Welcome to our forum,

I don't like the idea of giving a patient any medication on a 'guess' like the doctor has given your Mum for supposed to be R.A. It should be very clearly diagnosed first.

Doctors in these modern times have forgotten the rules of how to detect Hypothyroidism (Hashimotos) by clinical symptoms alone. They are happy to say that the patient is 'normal' but referring to a blood test result alone and not listening about the disabling symptoms and are apt to try to quiet the patient by giving something for the symptom and not the overall cause of the symptoms.

First, I shall give you a list of clinical symptoms which I'm sure your Mum could tick off quite a few of them. High Cholesterol is one of the clinical symptoms of hypothyroidism and reduces naturally if replacement hormones are optimal without the need for additional medication.

First she needs a Full Thyroid Function Test. It should be the earliest possible, fasting and she should allow a gap of 24 hours between her last dose of levothyroxine and the test and take afterwards. Request the following:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Vitamin B12, Vit D, iron, ferritin and folate.

Get a print-out of the results with the ranges. Ranges are important as they enable responses from members.

Everything has to be optimal - not just in range.

If you are in the UK, the ones the GP doesn't do - or lab wont - we have two private labs which will do home pin-prick tests - just make sure she's well hydrated a couple of days before blood draw. Some people get the blood drawn instead of pin-prick.

Never accept the words from a medical professional who states :-

O.K. Fine or Normal. We need actual numbers/ranges.

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

The 'old fashioned word for hypothyroidism' before blood tests and levothyroxine were introduced was Myxedema due to a build-up of fluid:-

healthunlocked.com/thyroidu...

Always get a print-out of the results and put them on a new post for comments.

The aim of replacement hormones is a TSH of 1 or below, A Free T3 and Free T4 towards the upper part of the range.

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Dear shaws,

Thank you for your swift response. I could not find how to post her lab result, so I am attaching an Adobe Send & Track link. I hope that you can access the lab test result from there. The tests were done in Turkey and I translated the important results to English. Please find the link below:

files.acrobat.com/a/preview...

She did not stop her medication before the test. She is taking 50 mcg of Levothyroxine.

We are worried about stopping the medication for 24 hours. I have suggested her to stop it for a few days to see if her pains would improve, but we have decided against it as this is a vital medication for her.

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50mcg of levothyroxine is a very small dose indeed. It is a starting dose and usually 25mcg increments are given every six weeks until symptom-free.

I did not feel well on levothyroxie and in fact far worse than before I was diagnosed (my TSH 100) so I feel for your mother taking it for 9 years with no improvement, in fact worse.

The blood tests look o.k. but if she had levo before the test the results could be skewed. I think it would help your mother better if she had T3 (liothyronine) added to her T4. Research has shown that a combination helps many people feel better. Your mother could also have Thyroid Hormone Resistance which means people only recover on T3 only.

I think I'd be apt to try a combination first.

T4 (levo) is an inactive hormone and it has to convert to T3 so we need sufficient T3 as we have billions of T3 receptor cells and it allows our body to function normally.

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Dear shaws,

Thank you for the in depth response. We feel much more confident now that her T3 level needs to be tackled with and the fact that you and greygoose have the same conclusion gives us hope!

In this case, we will try to find a thyroid specialist who would have the same conclusion and increase her dose under his/her supervision.

Would you have any recommendation for us as to how to find the right thyroid specialist? We would need to find someone in either Turkey or the UK.

Thanks a lot!

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I don't know of any Specialist in Turkey but for the UK email louise.roberts@thyroiduk.org.uk.

Most of us on this forum now treat ourselves and source our own hormones.

This is a link and I think there are more people who suffer due to modern method of diagnosing/treating than we will ever know.

dailyrecord.co.uk/news/real...

I don't know if they prescribe T3 in Turkey but could you ask a couple of local pharmacists if they know of someone who does. Also there's NDT - Natural Dessicated Thyroid Hromones - (it contains all of the hormones a healthy gland would produce) which were first introduced in1892 and has been in use since then Before 1960's we were diagnosed on symptoms alone and given NDT. Now for some senseless reason the NHS will not provide it in UK their preference is Levo despite many complaints of remaining symptoms which must cost more with extra prescriptions for the symptoms.

Big pharma has been successful in their promotions and gave monetary rewards to use levo instead of NDT and gradually levo has superseded but thousands remain unwell. Those who have no access to online are lost, really.

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Sorry to jump in here folks....thank you to shaws

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Sorry to jump in here folks...have to say thank you to shaws

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That earlier post jumped away before I finished it....just wanted to say thank you to @shaws for the info about raised cholesterol being a clinical symptom of hypo. My GP has just prescribed statins which I'm unhappy with...have also managed to get an increase in levo so theoretically that should help reduce cholesterol levels without the statins. Yes/no?

Also the info 're Myexedema...have looked further into this and have been trying the pinch test and am now thinking my swollen limbs etc may also be due to low levo.

Fingers crossed!

Still digging away and thanks to you all I am beginning to see light at the end of what has been a long dark tunnel.

Thanks also to my current GP who has listened to my 'rants' about metabolism and levo dosage and is actually 'hearing' what I have been trying to communicate to previous GPs... with no success. One actually told me just to be the patient and to forget research! That is not the way I am wired/was educated!

Sorry this is a bit scrappy but hope you get the gist!

Best...

DD

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I think it's more likely to be the hypo than the levo itself. How much is she taking? The more detail you can give, the better the responses you will get - and that does include her blood test results, with ranges. Can you type them out?

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Dear greygoose,

Thank you for your response. She is taking 50 mcg/day. She takes the medication in the morning on an empty stomach.

You can find the lab test results on:

files.acrobat.com/a/preview...

The relevant results are as follows:

Cholestrol, total: 236 mg/dL, Normal <200, High 200-239, Extremely High >240

Vitamin B12: 569 pg/mL, 197-771

Folic Acid: 10.0 ng/mL, 4.6-18.7

TSH: 0.97 ulU/mL, 0.27-4.20

free T3: 2.49 pg/mL, 2-4.4

free T4: 1.38 ng/dL, 0.93-1.7

Vitamin D: 36ng/mL, Low <20, Not enough 21-29, Optimal >30

Erythrocyte Sedimentation Rate (ESR): 31 mm/hour, <20

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Dear greygoose,

Some more details: the mornings are usually the worst. She wakes up with swollen fingers, arms and feet. She feels pain when she tries to move her arms or feet. The pain is asymmetrical. For example, if she cannot move her left arm, but her right fine is totally fine.

The pain gets better throughout the day and she can move more easily. The swellings also are reduced. However, the pain and the swellings repeat the next day.

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50 mcg is only a starter dose. And, her FT3 is rather low. Well be low mid-range. Her FT4 is just a tad over mid-range, so she really does need an increase in dose.

Forget the cholesterol, it's irrelevant. It's high because her T3 is low. As she raises her T3, her cholesterol will decrease. But it's not a problem being elevated. She really does not want to take statins, evil things!

Her nutrients don't look too bad, but has she had her ferritin tested?

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Dear greygoose,

Thank you for your response. No, we do not have ferritin tested.

Shall we have it tested? How would that play a role with her condition?

Seeing that you and shaws have the same response gives us hope.

In this case, we will try to find a thyroid specialist who would have the same conclusion and increase her dose under his/her supervision.

Would you have any recommendation for us as to how to find the right thyroid specialist? We would need to find someone in either Turkey or the UK.

Thanks a lot!

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Yes, you should get ferritin tested. It needs to be at least mid-range for the body to be able to use thyroid hormone.

I'm afraid I can't help with specialists in the UK, I don't live there. :)

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Myself I have that under active thyroid been taking medication for 3yrs. I also take medication for high cholesterol. I started having these joint pains and I stopped taking medication for high cholesterol but there was no change. After that I decided to visit my GP. Had bloods taken results came back showing my vitamin D was very low that was the cause. I have dark skin from Africa he said it's a problem for people with dark skin. I'm now on vitamin D tablet which I take once a week feeling much better now

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We do have to ensure all vitamins/minerals are optimum too.

I'm glad Vit D worked wonders for you :)

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