Me again, I'm getting very down and frustrated - Thyroid UK

Thyroid UK

137,732 members161,517 posts

Me again, I'm getting very down and frustrated

saltylu profile image
9 Replies

I had some more blood tests done to test my pituitary function and they all came back normal however, it showed my Free T4 has dropped to 9.9pmol/L. The lab they use has the range 9-19 so they won't do anything about it and are instead referring me to the chronic fatigue syndrome clinic as they are adamant there isn't an issue with my thyroid/pituitary.

Is there anything else I can do? Or should I just resign myself to the fact that I might actually just have CFS/M.E? This is affecting my daily life and my job and I just feel like no one is listening to me (apart from the people on here, you guys are great!). Feel free to private message me if there any names of any doctors in Devon who might be able to help or if there is anything you would rather not comment.

Written by
saltylu profile image
saltylu
To view profiles and participate in discussions please or .
Read more about...
9 Replies

Do you have any other results for your pituitary function? What tests did they do? Sadly many doctors don't understand pituitary/adrenal issues so aren't always good at interpreting the results.

saltylu profile image
saltylu in reply to

Hi yes I do,

Serum cortisol level: 316 nmol/L

Growth Hormone: 0.04 ug/L

FSH: 4.0 iu/L (mid cycle)

Serum LH level: 6.0 iu/L

Serum prolactin level: 290 miu/L [109.0 - 557.0]

Serum total 25-hydroxy vitamin D level: 46 nmol/L

I'm starting Vitamin D supplements tomorrow to help get the Vitamin D levels back to normal.

in reply to saltylu

Depending on the time of day that the blood was taken your cortisol is on the lower side of normal but probably okay.

saltylu profile image
saltylu in reply to

It was done at 9.30am after fasting.

SeasideSusie profile image
SeasideSusieRemembering in reply to saltylu

Doctors are so blinkered and ignorant. How on earth can they believe that your current FT4 level is acceptable, especially when you've had below range FT4 in the past. It just beggars belief.

Do you have the list of thyroid friendly endos from Dionne at ThyroidUK? If not then I'd suggest you send for it and see who you can travel to then ask for feedback by private message for any likely ones

tukadmin@thyroiduk.org

If absolutely necessary it might be worth going private but only if you have a recommendation of a really good endo with good knowledge of thyroid.

I'm starting Vitamin D supplements tomorrow to help get the Vitamin D levels back to normal.

Are you starting with 5,000iu D3, then introducing magnesium and K2?

Will you be following this with a B Complex to improve your Active B12 which isn't optimal at 71.6?

And also aiming to improve ferritin level which is low at 58.5?

saltylu profile image
saltylu in reply to SeasideSusie

They aren't treating anything except the vitamin D and I've been prescribed 800 units of colecalciferol to take each day. Everything else is within their ranges so they won't treat them. I can have a look if I can get some B12 supplements from Holland and Barrett but I can't afford to see a private doctor or anything.

There's an endo at the hospital I work for but we can't self refer or anything so there's nothing I could do with that either.

SeasideSusie profile image
SeasideSusieRemembering in reply to saltylu

They aren't treating anything except the vitamin D

They wont because they're within range and the NHS only considers treating levels out of range, they think anything within range is fine, they're not taught about nutrition so have no concept of recommended or optimal levels. Your levels aren't optimal or at the recommended level as explained in my reply to your previous post. This is something you need to sort out yourself and I gave you suggestions of a good B Complex to raise your B12.

I can have a look if I can get some B12 supplements from Holland and Barrett

Stay well away from H&B own brands, they are cheap for a reason. Go with brands recommended here on the forum, the better brands are usually sourced on the internet, I gave you two suggestions of good brands of B Complex.

I suggested eating liver and other iron rich foods to address your low ferritin.

I've been prescribed 800 units of colecalciferol to take each day.

That is nowhere near enough to raise an Insufficient level of Vit D into the Sufficient category. I linked you to the Vit D Council's article on how much D3 to take to raise your level up to the recommended range and the important cofactors needed and why they are needed.

There's an endo at the hospital I work for but we can't self refer or anything so there's nothing I could do with that either.

In your situation I'd be pushing your GP for a referral to an endo due to the possibility of Central Hypothyroidism, using the information I linked to in reply to your previous post and showing your previous below range FT4 results as fitting the criteria for Central Hypothyroidism.

Do you have the list of thyroid friendly endos from Dionne at ThyroidUK? If not then I'd suggest you send for it and see who you can travel to then ask for feedback by private message for any likely ones

tukadmin@thyroiduk.org

saltylu profile image
saltylu in reply to SeasideSusie

I saw my GP today and they're completely adamant that it isn't a Thyroid condition, I've seen 3 different ones and none of them will do a referral.

I'll have a look into the links for B12 etc that you recommended in my previous posts, I know the vitamin D isn't enough so is this something that I should be buying myself as well to top up what the doctor has given me?

SeasideSusie profile image
SeasideSusieRemembering in reply to saltylu

I know the vitamin D isn't enough so is this something that I should be buying myself as well to top up what the doctor has given me?

Yes, follow the suggestions I made in reply to your previous post, I mentioned some brands also. Best and cheapest will be Doctor's Best. I raised my severely deficient Vit D level of 15 to 202 in 2.5 months by using that brand and I'm still using it now at a maintenance dose.

You may also like...

Very Very Depressed re NDT refusal! Please can someone lift me up again!!

(purpose of visit was to obtain a referral to private Endo on 27th July). After he studied the...

Frustrated and getting fatter

myself out. She is of the opinion that my thyroid function is normal and that my aches and pains,...

Feeling very run down :(

Anyone feel as though their energy is just dwindling but they still have to carry on? I feel like a

I'm getting angry now.

Anyone on Facebook, if you'd like to comment on my latest post, feel free. At the moment I can't do...

Me again! I need help before GP calls

out of bottom of range & FT4 has increased, but JUST into range. I feel like shit. My thyroid has...