Thyroid UK

Further Advice please

Hi all

Happy new year to everyone

Im wanting someone to advise further as I'm not sure what to do next and who to see sorry if some of this is repeated

Diagnosed in August this year after probably 1.5 years of symptoms including dizzy spells not getting words out flushing night sweats loss of periods or heavy painful periods insomnia back ache foot ache arm ache racing heart tinitus sweaty feet combined with cold hands feet swollen hands and feet and puffy face constipation and loose bowels loss of appetite sore mouth scalloped tongue mouth ulcers weight gain and weight loss and gain again ....my list goes on..

At first test my tsh was 45.9 and t4 5.4

Was put on 50 levo

Tested 6 weeks later my tsh was 7.9 and t4 14

Was put on 75 levo

Tested 10 weeks later tsh was 1.84 and because of this the lab didn't even bother doing my t4 even though it was requested by GP...

I've had all my Vits done back in Oct other than Vit D

These were

ferritin 147 (10-150)

B12 615 (191-663)

Folate 6.8 (3.9-26.8)

The lab also fogot to check my antibodies..

I am now on 100 as I asked GP if he would increase which he said he would even though I was in range I also asked why they didnt test t4 and he said they now don't if tsh is in range? Is this standard practice?

I still have lots of symptoms some are worse than before I went onto levo such as tiredness feeling cold not much appetite and constipation racing heart and bloating and lack of periods or very late periods

I've had consistant high strees over the past 3 years notably 4 family bereavements one my father and also my father plus dealing with my mum (I'm the only one) i also have a very stressful job travelling all over the UK in a sales role which I've tried to carry on keeping it all together as we do..

Could this also be a factor that I am just stressed out to the max...as I certainly feel like I can't cope with anymore problems!

I am reluctant to go back to my GP as he was quite dismissive as the results were OK in his eyes ... he said come back in 3 months. .

I've ordered medichecks tests so will get these done this week

In the meantime is it worth going to see a private endo? I'm happy to pay but just wanted some opinions please? Or another GP I live in least happy to travel

Thank you

4 Replies
oldestnewest

Fox78,

I would wait 6-8 weeks after increasing to 100mcg Levothyroxine and order a private thyroid test to check TSH, FT4, FT3 and thyroid antibodies. Blue Horizon Thyroid Plus 11 and Medichecks UltraVits include the thyroid tests and vitamin and mineral tests including vitD. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

It's very unlikely that you are undermedicated on 100mcg but symptoms can lag for several months after biochemistry is good.

Ferritin was high in range which can indicate inflammation so it would be good to recheck to see whether it has dropped now you are adequately dosed.

B12 was good and it's very unlikely that B12 >500 will be deficient.

Folate was low in range. You could supplement 400mcg folic acid or methylfolate for a couple of months to raise folate.

Reply

This seems to be a new thing that the labs only test tsh and if in range wont do the thyroid hormone tests! Completely mad and back to front! No doubt more nhs cost cutting measures! You may have to order a private thyroid hormone panel profile. Look on Thyroid UK website for sources. You really do need to know your thyroid hormone levels (ft4 & ft3) as well as the TSH. You need your thyroid hormomes to be in the top third of the ranges. Some people need them need the top of the range. The TSH should be under 1. Glad your GP increased to a 100. You might be better to wait until the 6 weeks are up since the increase and then do the private panel test. This could then feed into whether you need a further increase. So it were me Id wait for that. Most increases are done on a 6-8week basis as it takes time for the thyroid meds to have full effect on the body.

A lot of endos are experienced in diabetes and not thyroid so am afriad a lot are quite ignorant to be honest. However contact Louise Warvill privately on here. She &Lyn run Thyroid Uk. They have lists of private doctors and Endocrinologists more experienced with thyroid treatment.

Am so so sorry to hear of your loss. What a terrible time you have had. 😞😞

Too much stress is not good for us thats true. Whether you could say its the cause of your thyroid decline is another matter but it might have hastened it. All you can do is to look after yourself too, give yourself time if you can to relax and chill. Easy said than done I know....lol. Exercise is good for reducing adrenaline from stress.....however you need to be careful as you are still finding your optimum dose for your hypothyroidism. So gentle exercise is proabably best. Such as walking, swimming.

Really hope that 2018 bring your more happiness and improved health. Xx

1 like
Reply

Essential to find out if cause is autoimmune thyroid disease also called Hashimoto's. Diagnosed by high antibodies.

It's most likely as over 90% of primary hypothyroidism is Hashimoto's

Also must test vitamin D, as well as folate, ferritin and B12

Your ferritin and B12 look good.

Definitely wait 6 weeks after dose change before doing Medichecks test

If not included vitamin D you can get this separately

Vitamindtest.org.uk - £28 postal kit

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Reply

Thank you all

I will wait 6 weeks for the 100 to kick in and do the tests privately so I have an overall picture

Thank you

1 like
Reply

You may also like...