I had a blood test in August and it showed my thyroid levels were fine.
I had another one in October and my T4 is off the chart.. nothings changed,I thought it was menopause because of the symptoms.
GP has suggested a scan to see if there is a toxic goiter or nodule and I'm just waiting for a referral to an Endo. as anyone else experienced this?
in August it was 14.3.. now its 36.3
hi and welcome,
You must be feeling dreadful with your levels swinging about like this.
Did they check your antibodies by any chance on that blood test?
There are a few possibilities, other respondents with more experience that me will pile in to help you I am sure.
Have you read about Hashimoto’s? It could be that. I have it, have had episodes of hyperthyroidism all my teen/adult life followed by deep exhaustion and life being like ‘walking through treacle’.
Something similar happened to me about 18 years ago after the birth of child 2. I was told it was thyroiditis at the time and it would settle down. I now know there was more to it.
I’ve heard about nodules doing this too. But not my area of experience.
Good for you for reaching out, there is a wealth of experience here.
Are you on any thyroid hormone replacement or HRT?
Any other conditions or auto immune conditions in the family?
Just asking lots of questions that might help others. Wishing you well with your scans and treatment 🦋💚🦋
Thank you for replying . No not on any other HRT or such and yes, I feel absolutely dreadful at the moment, No temp control, what can only be described as an overwhelming feel of sadness and weird itchy skin. My FiL is a GP and was shocked that they didn't book an appointment to even feel my neck.
I've booked another doctor call for today and am going to push for another blood test with antibodies before I have to go down the private route.
I just hate not feeling like myself, its not great for me or anyone around me.
If you're on thyroid hormone replacement (levo) and you didn't change your dose after the test in August, then I think that is more than likely Hashi's. And, the first thing your doctor ought to do is test antibodies to find out. Pity they didn't test the FT3 because that would have given more of a clue. 
Thank you for the reply, I've booked another call in with the doctor today to see if they will do a further blood test with anti bodies this time. The first thing he did say that I needed a scan and when I said I have private medical he said that's good and that was it. Suggested another blood test in 6 weeks.. which feels like a lifetime away.
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies and/or ultrasound scan of thyroid
Extremely common in early stage Hashimoto’s to have transient hyperthyroid results and symptoms as cells in thyroid breakdown releasing excess thyroid hormones
It’s not true hyperthyroid and swinging levels make you feel rubbish
Request GP test thyroid antibodies for autoimmune thyroid disease also vitamin D needs testing
Low vitamin D extremely common with all autoimmune diseases
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Thank you, I am just waiting a call back from the doctors, going to see if I can get the above blood tests done before seeing an endo or having a scan so I maybe know what i'm potentially dealing with. My B12 was in range when I had it tested in October.
Did you mean vitamin D?
no, B12. I asked for it to to be included as I didnt know what was wrong with me. I'm going back tomorrow am for a full thyroid blood test covering everything including the antibodies ( Ive actually printed out what you suggested to take with me to make sure they get everything )
You've had a lot of good advice so far, but one little extra point.
If you're not taking any thyroid hormone then a freeT4 of 14.3 is still a high result, just not high enough to be over range.
The ranges for both FreeT4 and FreeT3 represent a normal curve of the whole population. Most people will have a result very close to the centre of the range, and the further out a result is in either direction the smaller the number of people who would have that number, and thus the more unlikely it is that it would naturally occur in a person with a healthy thyroid.
If you're already taking any thyroid hormone completely ignore that, as all those rules are broken once we start supplementing our hormone. The needs of a person with any thyroid illness are very different from the needs of a person with a healthy thyroid.
Thank you, yes I currently take 150 thyroxine x
did the GP not suggest a reduction in your dose of levo ( eg. to 125mcg) when they saw the fT4 was now 36 ? .. that would be the usual course of action.
. also just checking ....is it possible you've been taking too much levo by accident ? ..
how many hours before this blood test did you take your last dose of levo ? ...
Yes, reduce to 125 but I've been on 150 for years so that's why they were concerned in the jump especially in 6 weeks,
its gone from 14.3 to 36 in 7 weeks
my fT4 did a similar thing a few yrs after my menopause. but not as high as yours . , only about 20 (7-14)
I had been on 150mcg for many yrs previously , but dose has gradually needed reducing after menopause first to 125mcg for about 3 yrs , then fT4 went over range again to 23 , so now been on 112.5mcg for the last couple of yrs .. seems i just use a bit less than i did when i was younger. i didn't have any further investigations, as reducing dose has fixed the issue .
but your 36 is pretty high , so i agree a scan is sensible to see if they can find a cause .
it was pretty rough few yrs dealing with changing doses, and menopause ,, but all is well now , i feel better than i have for a long time .
Advice on under active thyroid to potentially over medicated..
from under to over active
Under active thyroid
Under active thyroid
Under active thyroid
