TSH, Doctors & Advice!

[Loucoli]

Hi!

I'm new here I have been following this community on HealthUnlocked for a little while now and have finally decided to write my first post. I was diagnosed hypo in May 2017 at age 23 (I am now 24). The reason for getting tested was extreme exhaustion and finding it impossible to wake up in the morning, a symptom that has not improved.

I was diagnosed with a TSH of 5.57 and started on 25mcg of levo. My doctors use a reference range of 0.3-3.5. Then going for another test, my TSH was 3.97 and my dosage increased to 50mcg. I then went for another test and was told that was the dose I was to stay on, despite still having all symptoms. I then saw another doctor due to feeling very unwell, who increased my dose to 75mcg because of the symptoms I was having. He also looked at my test history and in 2009 (age 15) I had a TSH reading of 3.97 and 8.87 (!) in 2011 (age 17) in which no one contacted me or told me about.

My most recent blood test results I have had the most unhelpful and argumentative doctors. My TSH in February was 2.54 and then 2.24 in May 2018. I am feeling slightly better, but I am still having symptoms (exhaustion, hair loss/brittle hair and nails, no outer third of eyebrows, feeling cold, dry skin/eczema, brain fog, poor memory, cannot lose weight). I have also been refused copies of my blood test results and that I would have to have a meeting with the practice manager to explain why I need copies of them. The receptionist and doctor didn't know the procedure and both told me different things.

I asked at my most recent appointment about trialling 100mcg as I am still not feeling well. She advised it is impossible for my thyroid to be causing this and must be other causes (TSH of 2.24). She checked all my tests (from December 2017) such as liver, kidneys, diabetes, iron which were all normal. Her response was a shrug of the shoulders and said 'maybe you should try yoga' I then asked if that doesn't work, to which she didn't reply. She also said increasing my levo would be 'an inappropriate use of medicine' and would put a massive strain on my heart and would most likely cause a heart attack!

I have never been tested for antibodies, FT4, FT3 or vitamins and have only had my TSH tested.

I am feeling a bit helpless and lost. I am still feeling unwell and all my doctors won't help or listen! I am changing surgeries as mine are the worst rated where I live, and have been rated inadequate by the CQC.

I've seen a lot of people have this problem with their doctor's surgeries but does anyone have any advice or experience of where to go from here? I have been looking at medichecks for testing - does anyone know if they are good and if so, what test to get?

Thank you for taking the time to read my post. I really appreciate any replies and help, thank you!!

[fibrolinda]

Glad your finding new GP, these ones are keeping you ill grrrr. The aim of a treated hypo patient is for TSH To be below 1 and ft3 and ft4 in top third of ranges or wherever needed for person to feel well. I'm foggy and pushed fir time but hopefully someone will point you to the relevant info.

Many of us use medichecks or Blue horizon going via Thyroid UK website as they make small donation to Thyroid UK if we do. Medichecks have special offers on Thursdays which can save money.

This is the best test to get to see exactly what is going on

medichecks.com/thyroid-func...

Early morning blood draw fasting water only before. If you do one of these tests ask fir advice on best way to prepare etc

Sorry must go but you have one to the right place

🙂 linda x

[Loucoli in reply to fibrolinda]

Hi Linda,

Thank you for your reply especially when feeling foggy! I really appreciate it. Thank you for the link to Medichecks, I am hoping to show the results to my new GP and that they will be able to increase my dosage!

Thank you for the blood draw tip too - I will definitely do this when I go!

Thank you!

Louise

[SlowDragon Administrator]

You probably need to find a new GP

Yes hundreds, if not thousands on here use Medichecks or Blue Horizon

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus essential 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)

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 tested.

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[Loucoli in reply to SlowDragon]

Hi SlowDragon,

Thank you for replying! I will definitely have a look at those blood test options. I want to show the results to my new GP and hope that they will increase my dose.

I think I will be one of those people who will need to be nearer to 0.2! I agree with the importance of being tested for Hashimoto's, so I know to start a gluten-free diet as soon as possible!

Thank you for the link as well - very helpful and good to read.

Thank you!

Louise

[trelemorele]

To be completely honest, when I decided to increase my Levo dose I did that without informing my doctor.

I just simply took more ever day and put new repeat prescription earlier i.e.. two weeks earlier.

Then when I had next review I told doctor I've been taking so and so for that long and I need her to increase my script to reflect what I take. Didn't have problem. That was few years back though and since then I changed surgery twice but got to my final Levo dose myself and without asking for permission.

It all depends what sort of doctors you deal with if you do it this way. If they're ditzy (most of them are), they'll sign it off and you get away with it. If they put restrictions on the system (they can easily overwrite anyway) then you may have problems ordering Levo earlier.

It's best to drop off hard copy script this way as online ordering may be restricted.

If you're changing surgery you should get away with another trick. I.e tell new surgery you take 150 instead of 100 and to put that on your repeat script.

A lot of surgeries now also use receptionists instead of doctors to handle scripts - adding meds, dosage... on the system. And they are completely clueless in what they're doing with.

Just had and experience with one of my receptionists who completely cock up my new medication qty, then when I told her to fix it, she tripled the qty LOL.

You should be able to bamboozle receptionists pretty easy as well.

Sometimes you have to be crafty when you deal with dimwits.

[Loucoli in reply to trelemorele]

Hi Trelemorele,

This is good advice and very interesting! I have been seeing a chiropractor for about 18 months and it was actually him who said my thyroid seemed swollen and that I had all the symptoms after discussing it with him.

He said the same thing about increasing the dose anyway and telling them after. I did try but my doctors are so unorganised that I can only order a month at a time and I ran out too fast :(. Maybe with my new doctors, I can try this tip as I'm sure they won't know any different - especially the receptionists!

This is a good tip - thank you!

Louise

[trelemorele in reply to Loucoli]

Ask your new surgery to always issue two months supply on one script.

They're allowed to do it and you have wider time scope and meds consistency security.

All my meds are on two months supply script.

[SlowDragon Administrator]

Always make sure to get same brand of Levo too if possible

So it’s best to pick up prescription from surgery if you can this gives flexibility to go to different pharmacies to get the brand you need

Taking Levo at bedtime can give slightly better uptake

If you have not tried it, might be worth a go. Always take on empty stomach and then nothing for at least an hour after apart from water. If eating or drinking late, just take in middle of night