So my internal shaking/buzzing/vibrating is due... - Thyroid UK

Thyroid UK

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So my internal shaking/buzzing/vibrating is due to...

sip1
sip1

Chronic fatigue syndrome! Don't you just love doctors! As soon as he clocked on to the fact I'd been told this is/was my problem a few years ago, then he automatically assumed it's also the cause of this shaking that I've had the past 8 weeks. My TSH is 'normal' - obviously. Nothing else said about the thyroid. Wasn't going to do any other tests, said some rubbish about brain fog and trying to focus on something on the horizon (?). Because that's going to stop my internal shaking isn't it!! It was only when I asked for a blood test, that he agreed to one, and is also going to check for diabetes. In all honesty, I didn't expect miracles, but I did want the blood test so I can look at my ferritin, folate, B12 and so on and then check my own thyroid results (free T3 and free T4). I got what I wanted, but feel totally let down by the medical profession. I mean, how bloody ill does a person need to be before somebody listens??????

8 Replies
shaws
shawsAdministrator

Because we can sit in front of them at the surgery - probably put on some make up so don't look too ill, therefore the patient cannot really be feeling that bad as she can talk and respond to comments.

They don't seem to know the difference between a sick patient or someone who's hormone deficient therefore the body cannot function or work optimally. Neither do they know any clinical symptoms.

Did he/she offer to give you a Full Thyroid Function Test - if not ask for one - this is the very earliest blood draw possible, fasting and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. Request:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

Those he or lab wont do, you can get privately through one of our private labs who do home pin-prick tests and be sure you are well-hydrated a few days before blood draw so it is easier.

Get a print-out from the surgery with the ranges (always) for your own records and you can post if you have a query. Membes will respond.

sip1
sip1 in reply to shaws

Thank you. No, they literally have no idea. To him, I'm sure I looked perfectly ok, but I would love for him to spend a few days in my shoes. He'd soon change his mind. I just feel angry at the lack of help available. It's almost predictable now what they are going to say and do.

No he didn't offer any other tests, and I didn't expect it. My surgery don't do anything other than TSH. I've asked, and they say the lab won't do them. The only time they did was when my TSH was 0. I've got a finger prick test lined up to do next week, which will look at TSH, free T3 and free T4. I did one a while ago that looked at antibodies etc and it was all ok. At least my GP is checking my iron/ferritin, b12, folate although I don't think they check vit D. Again I did my own a while ago which was ok, but I may need to do another one now.

shaws
shawsAdministrator in reply to sip1

Well, that's good that you have another test due. Make sure you follow the above advice. The reason being that the TSH is highest early a.m. (that seems to be all they look at) and it drops throughout the day and could mean the difference between being diagnosed or not. The worst part is that in the UK doctors have been told not to diagnose until the TSH is 10. By then we could be very symptomatic and in other countries when TSH is 3+ with symptoms we're prescribed levothyroxine.

sip1
sip1 in reply to shaws

I can't imagine what somebody would feel like with a TSH of 10. I'm taking 100mg of Levo and my TSH is 1.58, but obviously something isn't working/converting. To be honest, I didn't have the energy to try and persuade him to do the proper tests, as soon as he said 'TSH', 'normal' and 'chronic fatigue' I knew it was fruitless! I'm just glad I got what I went in for, which was the full blood count booked.

Actually, my last blood test to check my TSH was 11 am - they couldn't get me in any earlier than that. Says it all really doesn't it that they are happy to test late morning instead of early as poss!

Rmichelle
Rmichelle in reply to sip1

It does not surprise me that the medical profession has let you down, I too would love to see any gp cope with thyroid disease....they would soon be shoving the meds in their mouths, what does ill look like to anyone!! Just because we make a effort with how we look, we can't possibly be ill. Lol.😀 best of luck

SlowDragon
SlowDragonAdministrator

TSH over one on Levothyroxine is too high for many people. Obviously you need FT4 and FT3 tested

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also 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. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose 12 hours prior to test

Presumably you have Hashimoto's as you have endometriosis

Are you on strictly gluten free diet?

Have you considered doing DIO2 gene test?

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

sip1
sip1 in reply to SlowDragon

I checked my antibodies 4 years ago, presumably this doesn't need testing again? I've had endometriosis for 22 years so it's not a recent thing.

THYROID ANTIBODIES

Thyroglobulin Antibody 10.0 IU/mL 0-115(Negative)

Thyroid Peroxidase Antibodies 13.0 IU/mL 0 - 34

Did you ask because of endo being an auto immune disease? (or have I go that wrong!)

I'm not on a gluten free diet no. Is it a good idea to be? I haven't done a DI02 gene test either, never heard of it before actually.

I have a finger prick test ready to do next week, which will be checking my TSH, FT3 and FT4. I also have a full blood count lined up on the 19th at the surgery.

SlowDragon
SlowDragonAdministrator in reply to sip1

Yes research suggests endometriosis and Hashimoto's may be linked

preventmiscarriage.com/endo...

Apparently about 20% with Hashimoto's never have raised antibodies

thyroidpharmacist.com/artic...

heyhashi.org/hashimotos-low...

Many of us, but especially with Hashimoto's, find strictly gluten free diet helps or is essential

Perhaps try for 3-6 months, if it helps stick on it

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

drknews.com/changing-your-d...

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