Feeling awful: I wonder if anybody can help with... - Thyroid UK

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Feeling awful

HUTTMUTT profile image
19 Replies

I wonder if anybody can help with why I keep feeling this way. I have had underactive thyroid for 7 years now and I have never been right. My last TSH levels were 0.64 which I think is very low but my doctor said no it was fine. (Tablet dose 100 one day and 125 alternative days) A couple of years I ago felt this way hungry and when its hot I get a tingle feeling and feel awful and then I get this hot sensation come over me and if I do too much after a while I feel really tired and fatigued and also my legs hurt sometimes to the point I have to go to bed. I dropped my tablets to 100 and I was fine for a time then my TSH levels went to 2.08 and I started feeling tired all my muscles hurt and couldn’t do much. I went back to the doctors and they agreed to put them up again which worked for a while and after 8 months I am back to where I was. Any help on what to do would be appreciated.

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19 Replies
greygoose profile image
greygoose

You probably feel ill because you're doctor is dosing by the TSH and you are under-medicated. He needs to do a full panel :

TSH

FT4

FT3

antibodies

Vit D

vit B12

folate

ferritin

Otherwise, he's just keeping you sick.

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

have been thinking of doing that but I did have a test done last year by medichecks when I was on 100 levo aday and it was the TSH levels and antibody test. Results below

Thyroid stimulating hormone 1.38 miu/L 0.27-4.20

Free Thyrooxine 17.5 pm01/L 12.00-22.00

Free T3 4.76 pm01/L 3.10-6.80

My Doctor has also done some test which I not sure what that involved and did come back and say my Ferritin was high but no action has been taken as he said it was probably one of those thing.

Thank you for getting back and some very good points made as I thought perhaps I was over medicating. I am going to pay to get my bloods checked and will post the results.

greygoose profile image
greygoose in reply to HUTTMUTT

Where are the antibody results? Free Thyroxine and Free T3 are thyroid hormones. And they are both too low. Your FT3 isn't even mid-range, and most people need it top of the range to feel well.

You should get the results of the other tests. If you live in the UK, it is your legal right to have a copy. :)

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

Ok thank you for that as every time I have test my doctor always says it is fine- I did ask for the results and they got all muddled at the doctors and gave me just the TSH levels as they won’t do an Anti body test. It was two years I had them done so I am going to pay as I am not getting anywhere with my GP. Sorry I must have got confused as to what test I had with medi checks as that was all the results they gave me.

Thanks again for you help and I will get tested and see what they come back with.

greygoose profile image
greygoose in reply to HUTTMUTT

You're welcome. :)

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

Hello Greygoose

I have just got my results back from my test that you said about having and I would be grateful if you could give your opinion on them

SH 0.28 range 0.27-4.20

FT4 free Thyroxine 19.900 12.00-22.00

FT3 4.89 3.10-6.80

Antibodies Thyrogulin 41.40 0.00 -115.00

Thyroid peroxidise antibodies 19.5 0.00-34.00

Vit D 68 50.00-200.00

vit B12 63.100 25.10-165.00

folate 4.88 2.91-50.00

ferritin 268 13.00-150.00

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

Sorry greygoose sent them slightly better

SH 0.28 range 0.27-4.20

FT4 free Thyroxine 19.900 1 2.00-22.00

FT3 4.89 3.10-6.80

Antibodies Thyrogulin 41.40 0.00 -115.00

Thyroid peroxidise antibodies 19.5 0.00-34.00

Vit D 68 50.00-200.00

vit B12 63.100 25.10-165.00

folate 4.88 2.91-50.00

ferritin 268 13.00-150.00

greygoose profile image
greygoose in reply to HUTTMUTT

You're not converting very well, but it might be worth trying another increase in levo, see what happens.

Your antibodies do not indicate Hashi's, but that doesn't mean you don't have it. You can't rule it out on the basis of one negative test.

Your Vit D could be higher - 100 would be better.

Your vit B12 and folate are also rather low and should be higher.

Your ferritin is over-range and your doctor should be investigating that.

Did you have your CRP tested, because if that's high, it might be why your ferritin is high. :)

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

Thank you Grey Goose for getting back. I am abit worried about stepping up you tablets as at the moment I get tingling feeling when hot I don’t know if that is a side effect of taking too much Lego.

My doctor is aware of my iron levels and last time it went down to 175 and he was like oh because it has gone down I am not so worried I will write to the specialist and see what he says and if they say that is alright then I won’t get back to you and he hasn’t got back.

My CRP test was 2.19 range 0.00-5.00

Defiantly going to take your advice on Vitimins and se if I feel an better.

greygoose profile image
greygoose in reply to HUTTMUTT

Yes, you could be right about increasing the levo, although I don't think tingling is an over-medication symptom. Could be due to your low B12, though.

I think, if it were me, I would remind your doctor about the iron, next time you see him, because they aren't always very good at getting back to you.

So, the only thing you can do to raise your FT3 is to get hold of some T3 and try it. Doubt you'll get it on prescription. Did you have a TSH result, by the way?

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

I have just read about B12 so you could be right. I am going to take B12 supplements and see where that takes me if that doesn’t help then I might step them up and see as its trail and error with it all and drives me mad that I feel awful sometimes.

Yes you are right about ferritin levels as last time I had to remind them.

I have thought of that but like you say I doubt my doctor will do it as getting them to do testing is a night mare.

greygoose profile image
greygoose in reply to HUTTMUTT

Yes, all they think about is money, not patient welfare.

What sort of B12 supplement are you taking, and how much? Do you also take a B complex?

HUTTMUTT profile image
HUTTMUTT in reply to greygoose

I am not taking any at the moment but seasideSusie said about taking Igennus Super B and very true about the Doctors which I have found out since I have got diagnosed.

SlowDragon profile image
SlowDragonAdministrator

Essential to know if cause of being hypothyroid is due to autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies

Have you ever had TPO and TG antibodies tested?

If not ask GP to test or test privately, plus vitamin D, folate, ferritin and B12

So for full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you do your tests?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get both TPO and TG antibodies tested at least once

HUTTMUTT profile image
HUTTMUTT in reply to SlowDragon

Thanks for the information and I have decided to get them done privately. As I said to Grey Goose I have had my bloods done privately just for TSH and anti bodies result below:

Thyroid stimulating hormone 1.38 miu/L 0.27-4.20

Free Thyrooxine 17.5 pm01/L 12.00-22.00

Free T3 4.76 pm01/L 3.10-6.80

That's when I was on 100 levo a day and at first I always took a tablet before my blood test but due to joining this site I always leave the tablets off.

HUTTMUTT profile image
HUTTMUTT

I have been thinking of doing that but I did have a test done last year by medichecks when I was on 100 levo aday and it was the TSH levels and antibody test. Results below

Thyroid stimulating hormone 1.38 miu/L 0.27-4.20

Free Thyrooxine 17.5 pm01/L 12.00-22.00

Free T3 4.76 pm01/L 3.10-6.80

My Doctor has also done some test which I not sure what that involved and did come back and say my Ferritin was high but no action has been taken as he said it was probably one of those thing.

Thank you for getting back and some very good points made as I thought perhaps I was over medicating. I am going to pay to get my bloods checked and will post the results.

SlowDragon profile image
SlowDragonAdministrator in reply to HUTTMUTT

Make sure to include vitamin D, folate, ferritin and B12

Medichecks sometimes run offer on the Thyroid plus ultra vitamin test on Thursdays, but as it was on offer only last week, it's unlikely to be in offer again for a while

Standard cost £99 plus £25 if want private blood draw

Offer price can be £79 plus £25

HUTTMUTT profile image
HUTTMUTT in reply to SlowDragon

Ok thanks I will and typical it was on offer last week. Will check both sites before I order .

HUTTMUTT profile image
HUTTMUTT in reply to SlowDragon

Hello SlowDragon

I have just had my results back from Medichecks and would be grateful for your opinion on them.

SH 0.28 range 0.27-4.20

FT4 free Thyroxine 19.900 12.00-22.00

FT3 4.89 3.10-6.80

Antibodies Thyrogulin 41.40 0.00 -115.00

Thyroid peroxidise antibodies 19.5 0.00-34.00

Vit D 68 50.00-200.00

vit B12 63.100 25.10-165.00

folate 4.88 2.91-50.00

ferritin 268 13.00-150.00

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