I've been battling with the doctors since october 2022 to try and help me. I've had trouble sleeping but feeling exhausted, sleeping 10+ hours and still being so so tired, and I literally cant put on any weight no matter what I try. I'm irritable, angry, incredibly anxious too. I regulary go to the gym, eat in a calorie surplus and literally haven't even put on 0.1 of a kg. I've recently had a really elevated heart rate of 120+ consistently. I work quite a sedentary office job so its not like I'm on my feet all day working a strenuous job. I'm also really young, and have a family history of Hashimotos, Graves, hyper and hypothyroidism and thyroid cancer.
I had bloods done last Jan which I never received any results of, and had another blood test this Jan. the doctor highlighted the fact my serum TSH level dropped 0.6 to 0.65. thyroid peroxidase came back at 44 which as far as im aware is out of the normal range? The doctor agreed I have hyperthyroidism and has referred me to an endocrinologist.
What should I discuss with the endocrinologist? I really just want to be medicated and get back to normal life, but I don't want to be brushed off like I have been the last 18 months.
Thank you!
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hythyfo
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had another blood test this Jan. the doctor highlighted the fact my serum TSH level dropped 0.6 to 0.65. thyroid peroxidase came back at 44 which as far as im aware is out of the normal range? The doctor agreed I have hyperthyroidism and has referred me to an endocrinologist.
No, your doctor is somewhat confused! Out of range antibodies with a TSH of 0.65 (which must still be in-range) are not indicative of hyperthyroidism. Far more likely that you have Hashi's - aka Autoimmune Thyroiditis. However, you also need your FT4 and FT3 tested to get a full picture. But, if you were hyper, your TSH would be zero. And inability to put on weight can be a hypo symptoms as well as a hyper symptom.
So, what to ask the endo?
- if you're worried about having hyperthyroidism (although you have no reason to) ask him to test Graves' antibodies: TSI and TRAB
- ask to have FT4 and FT3 tested because only they will tell you if you need thyroid hormone replacement. Just testing TSH tells you next to nothing.
More importantly, you need to ask your GP to test your nutrients: vit D, vit B12, folate and ferritin.
It's all so confusing! She explained that while yes my TSH is technically just in range, that it is low considering my age, activity etc. Is she correct with this? It's so hard to navigate as I feel like my symptoms vary between different thyroid issues. I definitely feel worse compared to in jan when i last had bloods done, and my heart rate is concerning too.
Thank you, I'll ask the endo for these. I'm just ready for an answer and some help! I'm sick of feeling like a 60 year old trapped in a 21 year olds body
Yes, I've doctor 'explanations' like that, too! Complete fairy stories made up off the top of their heads! You're not a child and you're not an old lady, so your age has nothing to do with it. Agreed your TSH is low, but TSH follows thyroid hormone levels, and as you have Hashi's, those can vary considerably in a very short time. But, they know nothing about them so don't test them. And TSH never has anything to do with activity! She has no idea what she's talking about.
Ahh that makes sense, its so confusing!! The first doctor i spoke to said there was no such thing as Hashis and that my family members dont have it, and now the second is saying things like this. Its a shame that no doctor seems to know what theyre on about. I thought a really common symptom of hashis is weight gain/weight that you cant get rid of? This is what confused me as i literally cannot put any weight on no matter what I do. Thank you
Well, perhaps that first doctor had never heard the name Hashi's because in the UK they call it Autoimmune Thyroiditis. They just don't get enough education of the endocrine system as a whole, but they tend to be more focused on diabetes than thyroid problems.
Weight-gain is a common hypo symptom, no doubt about that. But, not all hypos put on weight. Some stay the same and some lose it. It's like doctors think that all those with hyperthyroidism lose weight, have high blood pressure and feel hot. But things are never as clear cut as that. I had high blood pressure and never felt the cold, but boy did I put on wieght! Every hypo/hyper has their own personal list of symptoms, and doctors find it very difficult to accept that.
which just makes it even more confusing! The name makes sense, I've never even really heard it called autoimmune thyroiditis so will have a research with that name too. Really hoping the endo I see is half decent as ive been waiting since Feb for the referral and probs wont be seen until next month either.
It's actually not that confusing when you really get into it and learn more about it. It is complicated, yes, but it does have a certain logic to it. It's just that you can't go by symptoms alone - at least, not until you know your body very, very well - we need blood tests to back up what we're feeling.
yes it's confusing ... this may help a bit , i wrote it for someone else the other day :
Your symptoms do all fit with being hyperthyroid at the moment , high heart rate . weight los and the other stuff.
But hyperthyroidism has a few different causes:
1) it can be Grave's Disease (autoimmune hyperthyroidism), this is caused by antibodies that stimulate the thyroid just like TSH does .
(TSH ~ Thyroid Stimulating Hormone~ comes from pituitary gland and it's job is to regulate T4/T3 levels ,,, it goes up to 'ask' thyroid to make more T4/T3, and goes down to ask it to make less)
These antibodies (TRab or TSI) mimic TSH and continually ask the thyroid to keep making more and more T4/T3, even though TSH is 0... so you go hyper .
this usually has very high T4/T3 levels and a TSH of 0 (although there can be milder cases , so your TSH of 0.65 doesn't rule it out in your case )
To confirm if Graves is the cause testing of TRab /TSI antibodies is needed.
Note .... it is quite common to ALSO have SLIGHTLY raised TPOab in Graves . your TPOab of 44 would fit with this as it 's only slightly high .
(note* TPOab are nearly always high in Hashimoto's , so this can cause confusion).
Graves is usually treated with an antithyroid drug (carbimazole) to stop the thyroid being able to make so much T4/T3
2) people can go (temporarily) hyperthyroid in the early stages of Hashimoto's Thyroiditis (autoimmune hypothyroidism)
This has temporary high levels of T4/T3 caused by the immune system damaging the thyroid gland.
Imagine the thyroids like a sponge storing some 'ready made' T4/T3 ... the damage squeezes some of this ready madeT4/T3 out into the blood stream .... so T4/T3 levels go high and will cause symptoms of hyper
..... but the thyroid is not being asked to make too much T4/T3 continuously , so the highT4/T3 levels in the blood are temporary, and will go down by themselves as it is used up .
(Carbimazole doesn't usually help in this situation.. because it works by stopping the thyroid from being able to make so much T4/T3.... it doesn't do anything to lower T4/T3 that is already in the blood)
... then (because thyroid gland has been damaged) ,..... it can't make enough T4/T3 anymore .....and you slowly go hypo. .. this can happen several times over the several years ...as the thyroid get's more damaged over time.
this hyper phase of hashimoto's can last anywhere from a few weeks to a few months,, and is often missed if symptoms are not too bad.
The antibodies that are tested to confirm Hashimoto's are called:
TPOab (Thyroid Peroxidase antibodies) but note , these are often mildly present in Graves too.
Thank you! So for Graves my TPOab is what it would usually show if i had this, and then need the blood tests for TRab/TSI to confirm/exclude this. For hashi would my TPOab be higher than 44 if this was the correct diagnosis? MY symptoms probably started mid 2022 but only recently seemed to have got way worse. I really do appreciate the help thank you
"So for Graves my TPOab is what it would usually show if i had this,"
well ....lets' say it would not be surprising to have mildly positive TPOab of 44 in a graves patient ,, but bear in mind there will be plenty of graves patients who don't have raised TPOab ... so in hyperthyroidism TPOab level is only one small clue to what is going on.
"for hashi's would my TPOab be higher ?"
There are no firm cut off lines ...
positive TPOab are present in about 95-99% of cases of autoimmune hypo . (they can be slighty raised like yours , or extremely high in the thousands)
but positive TPOab are also found in about 80% of graves patients (here they usually tend to be slightly raised rather than extremely high, but like everything in 'thyroid land', you will find exceptions )
if you took loads of Autoimmune Hypo and Graves patients who had positive TPOab to look at , you'd notice that most of the graves ones tend to have much lower levels of TPOab than most of the Hashi's patients do.... but it's very individual .
So the only way to know for sure if hyperthyroidism is being caused by Graves is to test TRab/ TSI
and you also need to know your fT4 and fT3 levels. Looking at TSH on it's own can be very misleading .
the more information you have the easier it is to see what is happening , but unfortunately , a big part of making the proper thyroid diagnosis is watching how things change and evolve over time.
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