Am I going mad?

[lorilou107]

Hi,

I have been on Levo since August last year after a partial thyroidectomy left me severely hypothyroid. I had been going backwards and forwards to my gp saying that i didn't feel well and I had loads of symptoms which they said were nothing to do with thyroid conditions. Finally a large goitre came up and in August it was removed and after telling me that I wouldn't need any medication after the op as it wasn't my thyroid causing my symptoms I became very hypothyroid and was hesitantly started on 25mcg of Levo. I was feeling so ill by this time that I saw another consultant who immediately started me on 50mcg and then I was moved up to 75 and then to 100 which I have been on since January. I was feeling so good I couldn't believe how ill I had been feeling until I felt better. This lasted for a couple of months but over the past 2 or 3 I have started feeling the same old symptoms again. I was due for a thyroid review at the end of July but I asked my gp if he would test it earlier as I wasn't feeling good.

Main symptoms again, awful awful memory, severe brain fog, serious anxiety, want to burst into tears at the slightest problem, weight control, constipation, real tiredness, irritability etc. I had my blood test at the end of May and phoned up for the results. I was told they were 'normal no further action'! NORMAL!! What is normal for a person on Levo, there surely is no normal.

I asked for my actual blood results and was given only the tsh and T4 apparently I'm not allowed to have a copy of them!!!

In January 18 after having my blood tested my levels came back as :

TSH 0.5 RANGE (0.27-4.2) T4 19.1 RANGE ( 12-22)

My consultant was happy with this result and left me at 100mcg Levo and passed me back into the hands of my GP.

In May 18 I got my blood test results as follows:

TSH 1.24 RANGE (0.3-5)

T4 13 RANGE (8-16)

i know the ranges are different each place I had my blood test but I am sure I am not feeling well because either my TSH is too high or my T4 is too low. My consultant wanted to keep my T4 around 20 so if it is 13 now is that why I don't good again?

I asked my gP for a copy of my full blood test results as I had a full blood test last month for sugar levels and vitamins etc but all I have been given are the 2 results above so I can't give you any information regarding this.

What I am asking is do you think I would feel better on a higher dose of Levo now my bloods have changed again so is it worth my paying to see my consultant privately (again) so that she increases my dose. My GP refuse to adjust my dose as they say it is 'in range' so there is nothing they can do without me seeing an endo but I have to wait 2 months for a referral.

This is my total list of blood tests thyroid levels since August 17:

June 2017 TSH 4.9 RANGE (0.3-5)

T4 9.1 RANGE (7.9-16)

VIT B12 - 226 RANGE (150-900

FERRATIN 45 RANGE (15-300)

JULY 2017 TSH 3.44 (0.3-5)

T4 9.6 (7.9-16)

OCT 17 TSH 5.7 (0.3-5)

T4 12 (7.9-16)

JAN 18 TSH 0.5 RANGE (0,2-4.2)

T4 19 RANGE (12-22)

TSH 1.24 RANGE (0.3-5)

MAY 2018

TSH 1.24 RANGE (0.3-5)

T4 13 RANGE (8-16)

I would be so grateful if anyone can tell me if I am either a hypochondriac or I just feel rubbish because my thyroid is not doing it's job and the levo isn't enough.

I'm seriously thinking of ordering some private blood tests with one of the places you mention..

Thanks for taking the time to read,

Lori

x

[SlowDragon Administrator]

You are going to need to get full Thyroid and vitamin tests done. GP sounds unhelpful

Your vitamin B12 and ferritin levels were both too low previously, you also need folate and vitamin D tested

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.

Medichecks often run offers on Thursdays

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)

Come back with new post once you have results (and ranges)

[Treepie]

You are legally entitled to all your test results. Do not take no for an answer.

The GP may charge for photocopies .Demand to stand over the computer and copy them to see if that gets action.

[helvella Administrator Thyroid UK in reply to Treepie]

Charges for supplying information are usually now forbidden. Data Protection Act 2018 and GDPR.

Any attempt to charge should be reported - for example, to the Information Commissioner's Office.

[Treepie in reply to helvella]

Good to know.