Second TSH result, but unsure of meds dose

[Kate_Chester]

I posted on here after my first TSH level was 5.52 which people said was high. I took advise and made sure my second test was done first thing in the morning and the result came back as 11.23. By most people, this would now be considered quite high, but they are only giving me 25mcg of Levothyroxine for 8 weeks (review at 6 weeks to be fair). I get the feeling that they are only interested in getting my TSH levels below 10, and not back into an optimal range. My aunt also wants me to find an endocrinologist and go private. My head is spinning, I don't know where to begin!

[Aurealis]

They may be seeing if you can get through the next 8 weeks! Sometimes there’s a time for complaining about how poorly you feel (assuming that you do!)

[Kate_Chester in reply to Aurealis]

I think I've had this for so long now I've forgotten what normal feels like. My little boy just goes and fetches his teddy for me when I fall asleep on the sofa now.

[Jazzw]

If you don’t mind me asking, how old are you Kate?

The starting dose for hypothyroidism should be 50mcg daily if under 50 and you don’t suffer from any severe cardiac problems.

But many doctors completely misunderstand hypothyroidism (they get very little training on it). Levothyroxine isn’t a supplement, it’s a synthetic hormone replacement. So you can’t “top up” your own thyroxine production with it - it just doesn’t work like that (but I reckon some doctors think it does, which is why so many seem to start clearly hypothyroid folk on ridiculously tiny doses that often make things worse rather than better).

A private endo may not be any better (yes, really) but some GPs are more clued up than others - you might do better in the first instance to find another GP...

[Kate_Chester in reply to Jazzw]

I'm 38. When my first TSH was 5.52 they said they wouldn't bother treating it as I was only 0.02 over the threshold. But this time she said again that I was only just over, or 'slightly higher'. She asked me if I was symptomatic but I was caught off gaurd and simply said 'well I nap a lot'. It was over the phone so I forgot to tell her about my missing eyebrows, the fact that you can see my scalp, my dry skin that I have to try and moisturise with ultra hand cream because face cream just isn't thick enough. My resting heart rate is 52 and they already have it on record from my 24hr ECG that it can go down to the 30's. My body temperature is always low. I do everything I can to keep my energy levels up such as drink plenty of water, get enough sleep, exercise lots. I'm really overweight, although I think that's partly down to me snacking for energy to keep me going. I'm going to write all this down and any check the symptom list for when I next see her.

[Marz]

Are you able to have the Private Testing done as suggested by SlowDragon in your last post/thread - she also gave you a link 😊 Having vits and minerals tested too would be good as it is possible some of your symptoms could be linked to low iron - Ferritin - Folate - B12.

[Kate_Chester]

I decided to hold on for the second test to see what they said, so I have both and the second is at a point where even the NHS should treat. My vitamin and mineral levels were all normal, although I wasn't given a copy of what the numbers were. My iron levels have always been problematic, so I take supplements now, although I understand anaemia can be a sign of hypothyroidism too. I take Vitamin D supplements and Berroca for B12 as well, so I expected these to be ok to be honest. I'm happy with the testing, it's just making sure I'm on the right treatment - it sounds like that's everybody's battle.

[Marz in reply to Kate_Chester]

I would try to obtain copies of the results that are legally yours. Helps with posting here and enables you to monitor things and check what has been missed 😊 Never accept Normal/Fine/OK from a GP about results - they are just opinions !

Your Levo/T4 will struggle to convert into the Active hormone T3 if your levels of B12 - Folate - Ferritin - VitD are low in range. Hoe much iron are you taking ? Taking VitC with each dose helps absorption.

What is your VitD dose ? Should be based on the result of your test.

[Aurealis]

Good idea- write all your symptoms down on a list. At the top put the things GP can measure / see, they like that. If You have low mood put that near the bottom.

Tell GP the story of your little boy - being so used to you falling asleep on sofa he goes to get you his teddy. And say family members are telling you to get a second opinion!

In my opinion you should concentrate on getting your dose increased. Of course as you’ve been tested you could just increase it yourself and report what difference that made but you’ll probably need more than one increase

Also, you need to think about your little boy, is he safe when you fall asleep? You have to manage this GP for your little boys sake too

Lots of luck.

[Kate_Chester in reply to Aurealis]

Hello, thanks Aurealis. My boy isn't so little - he is a very independent 8 year old, so me having a nap isn't a safety concern and my hubby tends to be at home anyway. But he does still fetch me his teddy which I can see would make him appear a much younger child.

[lnjdevereux]

Hi Kate,

Just to let you know I had my TSH tested in Feb and it came out at 11.47, so my dr prescribed 25mcg (far too low). It did very little to help and my last test was in the 9s after 8 weeks on the 25, so my dr has agreed to increase my levo to 50 and retest in June. I think I will end up on 75-100 according to feedback from other users here, so it may be that even though you go below 10 they still will increase - I hope so!