You can be still be alive with a TSH of 26.8 and T4 and T3 of 0

[Nat1972]

My poor body has been through the mill of things. My endo shut his clinic due to his own thyroid illness and left me stranded after having RAI. It was 8 weeks after my treatment and I decided I needed to see someone urgently so went back to my lovely GP. As you can see my bloods they were very underactive and I am still alive. Now I start my Levo journey! Has anyone been this underactive before?

[magsyh]

My sister had a TSH of 140!

[Nat1972 in reply to magsyh]

Wow! How long did she take to get “normal” again

[magsyh in reply to Nat1972]

That was 15 years ago. She's on 150mcg levothyroxine. They started her on 50 and raised it by 50 every 4 weeks. She was doing great untill a few months ago they gave her Teva and she has put on 35lb. The doc isn't interested. She is really upset as a lot of her symptoms are back. The doc says she's in range. Her T4 was 22 it has gone down to 18 but they think that's ok☹️

[Greybeard]

A hypo endo! Oh the irony.

[Nat1972 in reply to Greybeard]

Yes, after me having Graves for a year my endo ended up in hospital himself with infected thyroid gland/toxicosis thingy...couldn’t believe it. As least he will be empathetic to his patients now...

[Nat1972]

I know nothing about NDT, I will ask my endo when I see...if I see him soon...

[Hidden]

Further to remark of Paula to start taking NDT - Little if any chance at all of any help from any GP or endo, who are likely to say it is "unlicensed", "poisonous" or similar.

After RAI it is similarly highly unlikely you will ever feel well on levo whatever dose you may take.

I know perfectly well what it is like to have a high TSH when my ½-thyroid took 3 months to start working again after a partial thyroidectomy.

Some research in 2011(ie EIGHT years ago) confirms this. Frankly I have no idea why this research has been kept quiet and totally ignored as it is the missing link to prove that those without a thyroid gland (including you and me) MUST be treated with NDT as there is not and never will be anything else to treat them with successfully..

ncbi.nlm.nih.gov/pmc/articl...

[Hidden]

Start off with a full blood test for thyroid and vitamins I use Medichecks Thyroidultravit.

Then post the results on this site with the ranges for answers. Take the test first thing, fasting and leave off your Levo 24 hours prior to the test.

I had my TT in Oct 2015 and and was put on Levo before the TT my thyroid was working well. I didn't know a thing about thyroid problems and became very ill on Levo in only 8 months. I then joined this site and started to self medicate with NDT (thyroid s) from Thailand. I now feel well, it did take nearly two years, mainly because I was still learning.

[Nat1972]

Thanks for your advice, I will monitor it closely. I think after the RAI that I still have a bit of my Thyroid left as I can still see it...but I will need an ultrasound to confirm

[Nat1972]

I do take Vit B12 supplements, selemnium and vit D in any case.

[clubby29]

Hi would be good to contact your endo and ask him to tell all his colleagues how bad he feels, would love to know how he treats himself. I bet it’s not how he was taught.

[Nat1972]

😁

[SilverAvocado]

Nat1972, Yes, I have been this hypo a number of times over my cancer treatment and later self treating with NDT! It is definitely a case of being half dead, and I was lying completely flat on the bed, turning a grey-ish colour and hardly breathing at my very worst.

Am I right in thinking you've completely fallen through the cracks and not been treated at all following your RAI? What a disgrace! If you've got no thyroid you should be started on a substantial dose of thyroid hormone straight away! I was started on 150mcg of Levo after my thyroidectomy. Although if you've only had RAI and no surgery you should hopefully have quite a bit of thyroid left?

Your TSH response looks quite sluggish to me, I've usually had a TSH over the measurable size when my hormone has been below range, it's reported something like TSH >150. Some go up to 250!! I'll look up the specifics for you in a minute. It's possible this is expected after Grave's.

I agree with others that you may find you need some T3. But I always think it's worth jumping through the NHS hoops, first. Get your freeT4 looking good (at the top of the range), and see how you feel. After RAI you may be lucky enough to get T3 prescribed if you need it.

[SilverAvocado in reply to SilverAvocado]

Here's one result of mine:

TSH: >100mIU/L(.27-4.2)

FreeT4: 5.6 pmol/L(12 - 22)

FreeT3: 2.4 pmol/L (3.1-6.8)

This time my frees are a bit higher than yours, but still the huge TSH. The most extreme result I could find in my record was a freeT4 of 0.3, and TSH of 208. You can be sure I wasn't running any marathons (or even having a shower by myself) with those numbers!!

[Nat1972 in reply to SilverAvocado]

Hi silveravocado,

Yes my tsh is a bit sluggish as I was hyper ie had graves for 12months and no TSH reading at all. So my poor petruitary gland had a huge wake up call when my thyroid stopped working...all of a sudden it has to make TSH...after 12months of being asleep...

[Louiseb17]

My Tsh was 96.1 on diagnosis and my T4 was 0.02 so yep to your question

[Nat1972 in reply to Louiseb17]

Looks like it can get worse...can be quiet scary being that under active.