Is it normal to not get treated for Hashimotos and after attending endocrine clinic for 4 years and suffering debilitating symptoms all that time?
Have had an ultrasound which confirms Hashimotos yet Endo refers to my situation as still hypothyroidism and insists that treatment not necessary as thyroid may settle down with time. Im at my wits end - anyone experience anything similar?
Well, there's not treatment for the actual autoimmune side of things. All you can do is take thyroid hormone replacement when the gland becomes so badly damaged that the thyroid can no-longer make enough thyroid hormone to keep you well and healthy. And, that depends on your thyroid blood test results.
Have you had your TSH, FT4 and FT3 tested? What were the results and ranges?
Doctors are not interesting in how you feel - they know nothing about the symptoms, anyway. They're only interested in the numbers. And if the numbers don't look bad, they tell you you can't possibly have symptoms with those numbers, and it's 'all in your head'!
But, your silly endo is wrong if he thinks that your thyroid is going to 'settle down in time'. It isn't. It's only going to get worse as more and more of the thyroid is destroyed.
20th October
TSH 4.87 (0.27-4.20)
T4 10.8 (12-22)
T3 3.8 (3.1-6.8)
Jenny now you have a diagnosis of hashimotos hypothyroidism we can say that you were wrongly treated with carbimazole. The results you have shared and the fact that you have symptoms make it very difficult to understand why you have not been offered levothyroxine. Your TSH is above range, your ft4 below range and your ft3 is scraping along the bottom.
This story of your thyroid settling in time is rubbish. You are hypo and you need treatment.
You have been very poorly treated for 4 years. Many of us on here have had similar experiences so you are not alone. We have gone on to recover so there is hope .
We have had to learn from this site about the workings of the thyroid and we've had to learn to be pushy and bloody minded to get the treatment we need. We've had to put our big girl pants on. Time to look in your knickers drawer.......
Very well put - because ive seen various endos over the 4 years ive been contacting them all to ask them to help me and give me levothyroxine - many just dont get back to me. GP wont help because i am under the care of endo. I dont like having to contact all the different endos but dont see I have a choice so just have to hope one of them has sense and will give me levothyroxine!
How many blood tests have you had with over-range TSH? They're supposed to start treatment if you have two consecutive tests with over-range TSH. I believe information on that point can be found in the NICE guidelines. Plus your under-range FT4 and high antibodies, you should be getting treatment on the second comparable test. Although they won't take any notice of the low FT3 because they don't know what it is!
Ive had previous consecutive results with over the range TSH and they never treated me but just had a hyperthyroid period so this is first test since then showing over the range TSH.
Just been looking through my previous results for over the range TSH and found these:
4 Sep 19 4.86 (0.27-4.2)
26 Sep 19 5.64 (0.27-4.2)
31 Oct 19 4.25 (0.27-4.2)
3 Feb 20 4.37 (0.27-4.2)
and also:
15 Mar 22 6.44 (0.27-4.2)
27 Oct 22 4.93 (0.27-4.2)
Is there anyone that I can complain to about this? If I had been treated with Levo back in 2019 it could have saved me all these years of suffering
I'm sure there must be someone you can complain to, but I've no idea who. I think you should write a new question asking just that in the title, so that those who know can reply.
Have you always been with the same doctor? Or have you changed practices during this time? If you've been with the same one all these years, I think you should start by complaining to the practice manager and see if that helps.
So sorry to learn you are yet another one who is left to dangle, and feel rotten whilst you dangle.
This happened to me as well...for years. Eventually I asked my GP at that time, what he thought was wrong with me if it wasn't thyroid related? He said "We were convinced you were hypothyroid"...and by the end of the hour we spent together, he offered me a trial of levothyroxine..... I know an hour is almost unimaginable these days, I was lucky, he was a genuine family doctor and had got to know me.... and I can only think I was the last patient of the day.
The endocrinologists I saw over the years were in fact diabetes specialists...and knew nothing of the symptoms of hypothyroidism. One, who was a professor not only of endocrinology but also Medical Ethics, complained to my GP that I'd taken an A4 page listing my symptoms. He wrote a disgustingly biased letter to my GP suggesting strongly that it was all in my mind.
It seems, as @ Lalatoot says, it's time to look in your knicker drawer 
If you can afford to see a private thyroid specialist it may well be worth considering unless you can demonstrate to your GP that you need help...not in any number of months time, but asap. Arm yourself with as much non-arguable info as you can to back up why you need treating. I wish you well...in all senses of those words.
That is so true that the endo specialists are also specialists in diabetes but they lean more towards the diabetes - i often wonder why these specialisms are grouped together and why they arent split into to different ones then maybe the docs would learn more about the thyroid side.
I did actually pay to see two private endos - one was usless and told me to go back to nhs and the other I am currently begging for levothyroxine! It really is like being stuck in a nightmare and i know i am getting worse and worse as time goes on but am helpless to do anything. Im so glad you were lucky enough to get to see that GP.
I understand. Is the endo you are seeing one that is on the TUk list? If you are having to beg him to help you, why are you paying him to not treat you?
Yes, it feels like a nightmare, yet you have the initiative to seek help elsewhere. You are not helpless.... you have the power...not that endo.
Why not put up a new Post asking for Private Messages of recommendations from members who live in your area.... you needn't give precise details.
Thank you....I shall be eternally grateful to him.
That is so true that the endo specialists are also specialists in diabetes but they lean more towards the diabetes - i often wonder why these specialisms are grouped together
Because they are all diseases of the endocrine system: the hormone-producing glands. Diabetes is a problem with the hormone insuline. Doctors either find it more interesting than the thyroid, or it's more lucrative, I don't know which.
Jenny, I can not for the life of me understand how you could not be offered a trial of Levothyroxine by now at the very least. I am so sorry you are going through this.
Your endocrinologist sounds terrible! I’m disappointed they are from the TUK list.
You might be better off dropping the endocrinologist, seeing another GP or chance practice if possible and armed with the information you will gain from the forum, you will have to be a lot more forceful on a trial of Levothyroxine as per NICE guidelines with 2 over range range but below 10 TSH results.
Edit: P.S. based on your results, two TSH over range but under 10, coupled with that fact you have below range T4 and antibodies, I can’t see how treatment can be denied to you. Further to that, realistically they should have tested antibodies form the start.
Roughly where in U.K. are you?
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
You need starting on levothyroxine
List of thyroid specialists and endocrinologists
healthunlocked.com/thyroidu...
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