My experience with NHS GPs regarding hypothyroidism

[Jelley93]

Now until 22/04/2021 I just took my dose of Levothyroxine 100mcg everyday without fail and went work. No issues were present really. On 22/04/2021 I started to feel off, not tired but dizzy and unbalanced. I worked up until 28/04/2021 when I just couldn't face working as I had gotten worse. Anyway I had rang my Dr on the 23/04/2021 to ask for an appointment. I was told I could have one the following Friday 30/04/2021. Which I had kept, however on 28/04/2021 I asked for a triage appointment. I explained to the DR I needed my Levothyroxine raising by 25mcg as when I last felt like this was back in 2018 when I had to increase my dose from 50 to 75mcg. I was told Okay we will book you in for a blood test to check it out. I was then transferred to the receptionist who wasn't empathetic at all. I was told the earliest would be actually today 11/05/2021. Later on I rang again and got another person and basically begged for an earlier blood test. To which I got 04/05/2021. On the day of the blood test I felt really bad. Like I say no tiredness just a sense of being dizzy. My sick Note was to expire the following day and I asked for another certificate. I was told I would need another triage call to arrange it. This Dr started asking me the same questions. Even saying my last blood Tsh result as 5.2 wouldn't really concern them that was taken in September 2020. I got my second sick certificate. Then on Thursday 6/05/2021 I rang the surgery as I was told my result would be there in two days. I was told basically why are you ringing us results take one week or more. I got angry and said look I have been told by the DR to ring up today for the results. Later on that day the surgery rang me saying the results were in but I had to have another phone appointment for the following day. Soon as the Dr phoned me back the next day the first thing she said was you were right your thyroid TSH level is now 8.4. I got prescribed another 25mcg to make my full dosage 125mcg in total. I have now took four days worth of 125mcg. I can feel minor changes and hopefully get better soon. This thyroid forum as given me so much more info than DRS I have to thank you all for assisting me.

[SeasideSusie Remembering]

Sorry you've had to go through this Jelley93 but can't say I'm surprised. It shouldn't be like this and I can't understand why it is

Well done on knowing your body so well and spotting the signs, I hope your GP acknowledges this, unfortunately most of the time it doesn't matter any more what the patient says or what their symptoms are, doctors will only look at blood test results and ignore anything else.

[Jelley93 in reply to SeasideSusie]

Very much so Susie. In 2017 when I had glandular fever I went untreated for hypothyroidism for 6 months. Looking back on my NHS records my TSH level back then was 17 and it still wasn't picked up until December when I was started on 50mcg. Slow dragon was saying it looks like Ive been under-medicated for three years.

[humanbean]

Even saying my last blood Tsh result as 5.2 wouldn't really concern them that was taken in September 2020.

A TSH of 5.2 doesn't concern them, but it really ought to. Healthy people with healthy thyroids don't have a TSH anywhere near that high.

For information on TSH in healthy people, see this link :

healthunlocked.com/thyroidu...

The graph in that thread came from here :

web.archive.org/web/2004060...

The table of average TSH values at different ages came from this research paper :

eje.org/content/143/5/639.f...

The paper doesn't automatically open with that link - you have to choose to open it or save it.

[fuchsia-pink]

I'm quite shocked that the GP was perfectly happy that someone on thyroid meds could have a TSH of 5.2! You should keep having 6 -8 weekly blood tests and dose increases until

(a) you feel well

(b) TSH is less than 2 and prob less than 1

(c) free T4 and free T3 are in the top third of the lab range.

Your GP sounds really dozy so probably hasn't tested anything other than TSH. Please ensure you get your actual blood results and lab ranges every time - and ask if s/he will do the full range of tests you need - ie TSH, free T4, free T3 and key nutrients - ferritin, folate viit D and B12. I had some success with my GP by saying that these are the tests recommended by Thyroid UK. Good luck x

[Jelley93 in reply to fuchsia-pink]

Yep funny thing was at 5.2 I still felt okay. I just kept going on not knowing I was in a trouble until I finally had it catch up with me. Im hoping I can reverse this quickly from a level of 8.3. Just to feel somewhat normal again.

[SlowDragon Administrator]

In future, always get copies of your blood test results

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Keep spread sheet of results.....this makes it easier to see trends over time

Test vitamin D twice year

Test folate, ferritin and B12 at least annually

Likely to need to supplement to maintain OPTIMAL vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

Ferritin at least over 100

Serum B12 at least over 500

Being under medicated for thyroid tends to lower vitamin levels

Low vitamin levels tend to lower TSH

Aiming for Ft3 at least 50-60% through range

TSH likely to be under one when adequately treated

Median TSH graph of healthy population

healthunlocked.com/thyroidu...