Newbie confusion- looking for some of you exper... - Thyroid UK

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Newbie confusion- looking for some of you experienced posters response please :)

Peacefull profile image
8 Replies

Hello,

Firstly I want to say that you guys are amazing in your knowledge and really giving in your time and support.

My story - I’ve been trying to tell my GP for the last 4 years or so that I’m just not myself. Tired all the time, cold, hair falling out, really slow transit digestion severe restless leg syndrome tablets for depression too at one point and don’t get me started about not being able to lose a pound (3 to 4 hours at the gym every week for over a year, calorie tracking and NOTHING !!)

Any way Feb18 they sent me for a thyroid blood test at my request. The results were:-

Serum thyroid peroxidaise antibody concentration 23 iu/ml (0.0 - 33.0)

Serum free T4 15.0 pmol/L (11.0 - 22.0)

Serum TSH 4.4 (0.27 - 4.2) above range

6weeks later the results were:-

Serum free T4 15.0 pmol/L (11.0 - 22.0)

Serum TSH 6.63. (0.27 - 4.2) above range

And finally this week my T4 is down to 14 but TSH is up to 8.9 .

This new doctor has said that he wanted to get a T3 test done which came back at 4.6 (3.5 - 7.8)

I’d really appreciate your feedback and interpretation of thes results before I see my GP as I really don’t want them to fob me off with an explanation I don’t understand.

Thank you so much

Ally

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SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially when TSH is high or if Thyroid antibodies are raised

Unfortunately NHS refuses to test TG antibodies if TPO are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did your tests?

Ask GP to test vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Restless legs can be low magnesium

Low magnesium is common when vitamin D is low

Peacefull profile image
Peacefull in reply to SlowDragon

Hi SlowDragon, thanks for your reply, my tests were done at 10.30am and they were fasted, i'll get the vitamin tests done privately i think as its too much of a fight to get them done at the GP's. He Gp didn't want to prescribe until my TSH is over 10, but i really pushed and said it was unacceptable. I'm now on 25mg and have been for 7 days. I've tried all of the Iron and Magnesium for RLS over the last few years and no improvement unfortunately.

I'm booked in to go and have antibodies and TSH, FT4 and FT3 checked again in 8 weeks.

Hopefully things will improve.

SlowDragon profile image
SlowDragonAdministrator in reply to Peacefull

You need to test vitamin D, folate, B12 plus ferritin

Peacefull profile image
Peacefull in reply to SlowDragon

Hi Slowdragon, just wanted to let you know that I had my vitamin levels checked and folate, B12 ferritin were all really good but the D was really low. I've been supplementing for the last 2 weeks and feel an improvement.

I'm now at the end of week 5 of the levothyroxine and although I was feeling much better, less tired etc.. for the last few days I feel as poor as I did before starting? Is this common do you know?

Next lot of bloods this week, so will see what the results bring.

SlowDragon profile image
SlowDragonAdministrator in reply to Peacefull

So how low was vitamin D?

If under 25nmol your GP should be prescribing a loading dose

Local CCG guidelines

clinox.info/clinical-suppor...

What were the actual folate, B12 and ferritin results and ranges?

Informative link about low vitamin D, low B vitamins and poor sleep

drgominak.com/sleep/vitamin...

Yes extremely common to start feeling worse as approach 6 weeks on Levothyroxine.

Come back with new post once you get new test results and ranges

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

You are clearly hypothyroid and it sounds as if compared to many other doctors the one you are seeing is not too bad. It is good that your TSh above 7 is considered out of range as in some parts of the country it needs to be at 10. You do need you ferritin, folate , vitamin D and B12 tested as these need to be at a good level for you to make use of any thyroid hormones. Lets us know how you get on with appointment. You should be prescribed some levothyroid.

Peacefull profile image
Peacefull in reply to

Hi mandyjane,

Thanks for responding! Strange, when the GP called me about my results he was all for prescribing 100mg Levo straight off, but once i got to see him face to face he backtracked slightly saying that he was advised that until the TSH levels reached 10 they wouldn't do anything. I was really upset with him and asked who has the right to deny me treatment until i'm even more sick before they'll do something? What is the point of having a range of 0 - 4 and calling that normal if they wont do anything until you're 10??

I turned up to the appointment with 57 pages of research and copies of the NICE guidelines for prescribing and wouldn't let them fob me off :)

in reply to Peacefull

I am sorry to hear you were turned down for treatment like this. I imagine you GP is unhappy about it as well but has his hands tied. It all all too common a story. Why dont you ask him if he can support you to treat yourself, take the bloods and offer some advice. We can direct you too the right places to buy some thyroid hormones.

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