Any thoughts on my thyroid results : I have been... - Thyroid UK

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Any thoughts on my thyroid results

Suffolklady profile image
25 Replies

I have been taking low dose of levothyroxine for a while now. Although my stats were in the perimeters of so called normal. However with a flare of PMR ( predisolone restarted at 15mg 4 days ago) and feeling very edgy I had bloods done a month ago to check inflammation and my thyroid. According to the doctor things are as they should be but I feel nervy my hands tremble, very hot, itchy and along with the extreme muscle and joint pain feeling pretty terrible. My thyroid was not as it normally is this time. TSH 0.86. (0.27 -4.2)

T4. 21.7. (12.0 -22.00) A few months ago it was TSH 3.1 and T4 21. Has anyone got any thoughts on these stats please?

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Suffolklady profile image
Suffolklady
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25 Replies
Lora7again profile image
Lora7again

What do you mean by a low dose?

Suffolklady profile image
Suffolklady in reply toLora7again

Was on 25mg one day 50mg the next. Doctor put it down to 25mg per day been on that for a week

Lora7again profile image
Lora7again in reply toSuffolklady

That is too low ... you need to start on 50mcg and then a blood test after 6 weeks and increase by 25mcg until you feel well.

Suffolklady profile image
Suffolklady in reply toLora7again

What indicates it is too low please. Got to see the doctor later this afternoon.

Lora7again profile image
Lora7again in reply toSuffolklady

50mcg of Levothyroxine is a starter dose. My elderly Dad is on 100mcg because he is classed as elderly at 78 ... how old are you? (if you don't mind me asking) He might have started you on that low dose because of your age. Also this is early days you need to give it a few weeks to get it into your system

I am just adding this .... do you have any vitamin levels for us? Usually people with thyroid disease have low vitamin levels and this can affect how the Levothyroxine works. We need B12, Iron and Ferritin, Vitamin D and Folate to be optimal.

Suffolklady profile image
Suffolklady in reply toLora7again

I am 60. My thyroid has been borderline for quite a few years. I had a small dose of 25 mg several years ago and it lasted for about two years. Then it swung the other way and I had to have medication but I can’t remember what it was called. Then after another blood test things seem to settle down. About a year ago test I was borderline hypothyroidism so the doctor put me on a low dose of 25 mg which seem to be okay I never felt ill before having it or whilst having the 25 mg. I then went to see the endocrinologist as I have PMR and was on predisolone. My energy levels were not good and I mentioned it to him and he said maybe it would be a good idea to up my levothyroxine to 50 mg which I did. However on this dose I did not feel very well at all and took it for several months before I mentioned it to my GP he then suggested taking alternate days 25mg and 50 mg which is what I did. When I went to see him the other day as I was in terrible pain with PMR flareup he said to lower the dose to 25mg. I don’t know whether this is right or not I just want some advice from the test results that I had the other week.

Lora7again profile image
Lora7again in reply toSuffolklady

You are the same age as me my Dad is a young Dad incase you are wondering. I think you probably need to take 50mcg a day and then increase it after you have tested your levels. Also you need to test your vitamin levels because they can cause symptoms if they are not optimal. I had a vitamin D level of 7 and felt dreadfully ill, you can read my story on my profile page. I am not medically trained but I have read a lot about Thyroid disease and have been both over and under active and I have taken both Levothyroxine and Thyroid S (NDT) in the past.

cjrsquared profile image
cjrsquared

I don’t think your dose is too low looking at your ft4. It would be very helpful to have an ft3, the active hormone to see how well you are converting. With the flare up of your polymyalgia, your body is undergoing an acute inflammatory process and it could be impacting on your ft3 levels, thereby giving you some symptoms. Ft3 is known to reduce in acute illness. Do you know if concomitant factors such as ferritin, folate, vit b12 and vit d are optimal to aid conversion? If not probably worth getting levels checked.

Lora7again profile image
Lora7again in reply tocjrsquared

I agree in part but some of us need our T4 to be at the top the range. Mine was tested on Monday and it is 22 and I feel well at the moment. I am not on any medication at the moment but this feels normal for me and I don't feel hyper.

cjrsquared profile image
cjrsquared in reply toLora7again

I don’t disagree with you, but suffolklady’s ft4 is at the top of range and with out an ft3 it is not possible to make a considered judgement. T3 is the active hormone and how well we convert is really important as to any symptoms we have. I absolutely agree that many people need ft4 high in range to feel well.

greygoose profile image
greygoose

You have Hashi's, by the sound of it. And Hashi's people are very often poor converters. As you haven't mentioned it, I imagine you've never had your antibodies tested.

And it could very well be that your PMR is actually low FT3, not a separate disease at all.

So, your first priority should be to get full thyroid testing - which the NHS will never do. You want:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Would it be possible for you to get those tested privately?

So, how were your inflammation levels?

Suffolklady profile image
Suffolklady in reply togreygoose

I haven’t had the F3 done lately. But I have had the following done recently

Folate 4.9 ug/L

Ferritin 65 ng/mL

Vitamin D 78.8 (75 optimal)

Vitamins B12 641 pg /mL (197-771)

greygoose profile image
greygoose in reply toSuffolklady

Results without ranges are meaningless, because the ranges vary from lab to lab.

It's the FT3 and antibodies that are most important at the moment, to know what's going on with you.

Suffolklady profile image
Suffolklady in reply togreygoose

What ranges do you mean?

Suffolklady profile image
Suffolklady in reply toSuffolklady

Ferritin range is 17- 60 years 13- 150 ng/mL

Folate <3ug/L suggestive of folate deficiency

greygoose profile image
greygoose in reply toSuffolklady

Vitamins B12 641 pg /mL (197-771)

There, you have given the range: 197-771. Ranges are normally in brackets after the result. We need to see where in the range your result falls - your B12 is good. Are you supplementing?

Folate 4.9 ug/L

There, you haven't given a range. Even so, your folate looks very low, at a guess.

Vitamin D 78.8 (75 optimal)

That is insufficient information. It's actually just an opinion. But, we can't know if it has any foundation on truth because you haven't given the unit of measure. With the folate, you have put 'ug/L', that is the unit of measure. We need that for the vit D, too.

Ferritin 65 ng/mL

Pretty certain that's too low, but how low we cannot say without the range.

We really do need all the numbers. :)

Suffolklady profile image
Suffolklady in reply togreygoose

I have put the ferritin number range above but this is it Ferritin range is 17- 60 years 13- 150 ng/mL.

4.9 ug/L ....The folate on the print out says quote ..normal no action. Please note changes in the reference range for folate effective from the eighth of the 8/10 2018 <3 ug/Lsuggestive of folate deficiency please note there has been a change to the folate reference interval in accordance with clinical guidance from British Society of haematology

greygoose profile image
greygoose in reply toSuffolklady

OK, so your ferritin is low.

Your folate may be over 3, but it's still rather low in the general scheme of things. It would be better over 10.

Do you supplement B12?

Suffolklady profile image
Suffolklady in reply togreygoose

I don’t know what TPO antibodies is or the antibodies

greygoose profile image
greygoose in reply toSuffolklady

Well, the question is: do you have anything that says 'TPO antibodies' or 'anti-thyroid Thyroid Peroxidase antibodies' or anything like that on your print-out?

Antibodies are proteins produced by the immune system in response to a foreign body that has been detected. For example, if you have a cold, the immune system will produce an antibody to attack the cold virus and get rid of it.

With the autoimmune thyroid disease Hashimoto's Thyroiditis, the immune system produces two antibodies: Thyroid Peroxidase antibody and Thyroglobuline antibodies. So, to find out if you have Hashi's, these antibodies are tested for in the blood.

If they were tested for, the results will be on your print-out of results.

It's very important to know if you have Hashi's, because it can cause your hormone levels to jump around - sometimes just slightly, sometimes violently. Doctors don't understand what's happening, so it's a very good idea if the patient does! :)

Lora7again profile image
Lora7again

greygoose is much more knowledgeable than me so I would take her advice ... I am just passing on my experience of thyroid disease and what I have learnt in the past 12 years.

Suffolklady profile image
Suffolklady

Suffolklady

Reply to greygoose

Thank you for explaining that I only have a printout with my TPO antibodies that was dated last May. As follows Normal at 11 U/ml

TPO reference interval. < 34U/mL = negative

34U/mL. =borderline

34U/mL = positive

TPO Antibody negative.

greygoose profile image
greygoose in reply toSuffolklady

Greygoose has only seen this reply by chance! You absolutely must reply by clicking on the blue 'Reply' button under the post you're replying to, or the person concerned will not be notified. :)

OK, so you've had one TPO antibody test, which was negative. However, I'm afraid this cannot rule out Hashi's for several reasons:

* antibodies fluctuate all the time, so they could be negative in one test and positive in the next. It's recommended to test at least three times.

* TPO antibodies are just one of the Hashi's antibodies. There are also Tg antibodies, which can be high even in the presence of low TPOab, which would suggest Hashi's. Something the NHS will not admit to.

* 20% of Hashi's people never have elevated antibodies, they are diagnosed by ultrasound.

However, this reply to Lora strongly suggests that you do have Hashi's:

My thyroid has been borderline for quite a few years. I had a small dose of 25 mg several years ago and it lasted for about two years. Then it swung the other way and I had to have medication but I can’t remember what it was called. Then after another blood test things seem to settle down. About a year ago test I was borderline hypothyroidism so the doctor put me on a low dose of 25 mg

That is how Hashi's proceeds, with 'hyper' swings from time to time. But, basically, the patient is hypo.

Your next step should be to find out how well you are converting the levo that you are taking into T3, the active hormone. For that you need TSH, FT4 AND FT3 tested at the same time. If your doctor refuses - or cannot - test T3, then it would be a very good idea to have a private test. :)

Suffolklady profile image
Suffolklady in reply togreygoose

Thank you for you advice

greygoose profile image
greygoose in reply toSuffolklady

You're welcome. :)

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