Trying again

[loisamelia]

I posted earlier today but didn’t post correctly, I apologise for that.

I’ve been hypo for 10 years and also diagnosed with iron deficiency anaemia in 2017. I was prescribed iron tablets from my gp but they caused incontinence issues so I had to stop taking them. Instead I take Gentle Iron which seems to be much kinder. I was also advised to take vitamin d3 but never told I should take anything else with it.

My current TSH is 2.25 and FT4 is 15.1.

I feel very tired and very low in mood, I’m crying writing this and I dint know why.

I also struggle with temperature. In the heatwave I was barely functioning and can not cope with the hot weather. I’m also now feeling the cold.

I have irregular periods too, just had my second in 18 days.

I’m 48. Am a vegetarian and try to eat a balanced diet.

I have a phone call with my gp in two weeks because I feel so bad.

[shaws Administrator]

Tell GP you need a Full Thyroid Function Test. This is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Remember to make an appointment at the earliest possible: fasting (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take it afterwards. This helps keep the TSH at its highest as that's all the medical profession seem to look at.

The Frees are important but I doubt they are aware of this.

[loisamelia in reply to shaws]

Thank you, I will request this.

[humanbean]

Your TSH of 2.25 is too high for most of us to have a hope of feeling well, suggesting that you need a higher dose of Levo or whatever else you take for your thyroid.

For more info on TSH levels in healthy people, see this thread :

healthunlocked.com/thyroidu...

[loisamelia in reply to humanbean]

Thank you, that link is really helpful. I’ll have a good read of it ahead of my gp call

[tattybogle]

Hi there , I agree with humanbean, The TSH result is probably higher than it should be for you to feel really well. Many people need it to be under 1 to feel ok. and an increase in Levo dose would lower TSH. Is it Levothyroxine you take ? what dose, and has it been changed recently .

Without knowing the range that comes with that FT4 result we can't say if its near the top of the range or not , some ranges go up to 20 ish, i which case you could definitely ask GP for an increase in Levothyroxine, but some ranges go up to 14, in which case GP probably would not want to give an increase.

Do you have the range that came with that FT4 test ? it will be after the 15.1 [.....?...]

Sorry you're feeling so lousy and emotional. 2 periods in 18 days is not funny for a start.

Sorry this probably isn't much help . but just wanted to let you know you're not alone and send u a hug

[loisamelia in reply to tattybogle]

Hi, thanks for your rep,y. The range for the FT4 test was 12-22.

I take levothyroxine and am on 75mcg daily

[tattybogle in reply to loisamelia]

Hi again , just looked at your previous post from 3 yrs ago, snap , same problem here, got up to decent dose of levo (150),but about 5 yrs after diagnosis started to conk out for days after excercise /physical work that i should have been able to do .

Did you get your historic results ? and why was your dose reduced to 75 from 100 ?

On your current results there is definitely room for an increase in Levo dose, of either 12.5 or 25 mcg, perhaps that would help , but maybe not . What your your results like on 100 ? Have you ever had TSH below 1 and FT4 near top of range, and if you have, do you know what your FT3 level was on those results?

I have never managed to get rid of the post exertional malaise problem even though i am now on a higher dose of Levo than GP is happy with. But i've never been given any T3 to add to Levo and see if that helps, so i'm curently working on trying to get some out of NHS.

[loisamelia in reply to tattybogle]

Hi, sorry for the delay replying. I did get access to my records online and I can see that in July 2017 I had a TSH of 0.34 with T4 at 20 (in the range 12-22) and at that time I was on 100mcg levothyroxine. Then in August 2017 my dose was reduced to 75 by this doctor I previously mentioned who wasn’t the most sympathetic. My next results for TSH went up to 1.75 in Feb 2018, 3.15 in Aug 2018, 4.15 in Aug 2019 while still on the same 75mcg dose. All marked as normal/satisfactory no further action on my record and no follow up offered by gp surgery. I’ve never had FT3 tested.

I am going to talk all this through with the gp when they call and request the full thyroid screen as suggested in another reply above.

Regarding the physical exercise, I am doing less for sure. Still running but less distance and not doing as much. Sometimes it does wipe me out, but then that might also be other factors too-monthly cycle for example, it’s so hard to tell what is affecting the tiredness.

I hope you succeed with your aim to get the T3 on the NHS. it’s so unfair that this is all such a struggle and depends on where you live and who your doctor is. Have you got an endocrinologist? It’s never even been offered to me. I don’t know what the criteria is for that 🤷‍♀️

Thanks for your reply and advice.

[tattybogle in reply to loisamelia]

So,

since Thyroid Stimulating Hormone (TSH) is a signal from pituitary to thyroid saying " please make more Ft4/Ft3," (and also a signal to the deiodinase 's to increase ratio of conversion of T4 to T3 in cells)

the rise over time in 2018/19 up to 4.15 shows that Pituitary read your blood levels of T4/T3 and decided that your body needed an increase in Thyroid Hormone, and it kept asking louder, hence the numbers going up.

Presumably your Ft4 was still within range at the time of the 4.15 TSH, and so at that time GP could reasonably have increased dose again to somewhere between 75 and 100 ie. by taking half a 25mcg tablet daily or alternating daily dose between 100and 75. In my opinion if you were not feeling ok at that time and told them so , they should have done this since TSH 4.15 is getting near the top end of 'normal'

Since then TSH has come down a bit to 2.25 so it's not shouting so loudly for more , but still, most folk on here feel better with TSH under 1, and most 'healthy' folk have TSH around 1

As long as FT4 doesn't go over range GP should not refuse a small increase in Levo, and if they do ask for the reason.

suggest you ask for 12.5 mcg increase and see how you feel on that. (I'd be surprised if that would take FT4 over range, so shouldn't cause problem with GP )

P.s Look out for brand changes of Levo, 25 mcg tablets are often TEVA brand and some people don't feel well on them, but some people prefer them.

[tattybogle in reply to tattybogle]

Missed a bit...... The reason dose was reduced to 75 is because TSH was lowish at 0.34 probably near /below bottom of range, but thats really not so low as far as 'risks' are concerned . Risks of heart and bone problems associated with low TSH don't really start until you get below 0.04. I have some links about low TSH'risks ' if you want.

[loisamelia in reply to tattybogle]

Yes please, that’s very helpful

[loisamelia in reply to tattybogle]

Thank you. I haven’t had a annual appointment with my gp for ages. They never follow up on my annual results, it’s just not offered and sometimes (ok, most of the time) there’s other stuff going on in my life that means it’s forgotten. I never get a call about results ever and when I went to book my annual bloods this year the receptionist said it wasn’t on my records that I needed one 🙄😠

My FT4 has always been in range even though TSH has been rising.

I’ll definitely try for an increase in levo

[tattybogle in reply to loisamelia]

Thats pretty 'shoddy' care, at the very least they are supposed to hassle you to get a blood test once a yr.

In my reply to this post ;

healthunlocked.com/thyroidu...

, i have put links to some conversations and research about the relative 'risks' of low TSH vs quality of life.

You may as well take the time now to try and understand it, since GP will usually try and refuse a dose increase on the grounds of these 'risks'.

As you've discovered they are perfectly happy to leave us sub-optimally medicated for yrs, and they won't have done much research on the real issues involved, so they just go with the 'headlines' about risk , but the real picture is more subtle than just 'low TSH is dangerous'.

And anyway we should get a say in these 'risks' like we do in any other area of medicine

[loisamelia]

The range for TSH on my record is [0.27 - 4.2]